WELCOME, CAREGIVERS
“There are four kinds of people in the world:
those who have been caregivers; those who currently are caregivers;
those who will be caregivers; and those who will need caregivers.”
~Former First Lady, Rosalynn Carter
There was a time when families lived together; if not in the same house, then in the same town or village. Familial caregiving was a given: grandma and grandpa helped to care for the children and run the household, and lived in the family home until they breathed their last breath – the whole family was involved in their care and children grew up witnessing the entire cycle of life. If a family member got sick, they usually died at home surrounded by family and friends, and their body stayed in the house until their funeral.
These days family members often scatter to wherever jobs, school, weather, cost of living, or whims take them. That, combined with modern medicine, longer life spans, and retirement living options, have made caring for our loved ones, and their inevitable death, something we rarely think about until someone becomes very ill or can no longer do everything for themselves. It can be quite a shock to suddenly find that someone you always thought of as invincible is now depending on you for their very survival.
When we’re young we think we’ll never get old or sick. But it happens – so slowly we don’t notice, until we realize that more and more of our conversations are about aches, pains, injuries, eyesight, indigestion, and illness. All around us the people in our lives are aging noticeably, getting sick, and even dying. Our parents are getting frail or have passed on, and we all know at least one person who’s been diagnosed with some kind of cancer or other serious disease. Male or female; spouse, partner, sibling, son, or daughter; if you aren’t a caregiver now, chances are you’ll be one before long. And that’s why we’re here: to support you and encourage you with our own experiences, and to share lessons we learned along the way.
The majority of caregivers are still women, but the number of men taking on the role of caregiver is steadily growing. My father is a caregiver now, so I’m acutely aware of the difficulties men face when taking on this new role. So, men: I just want to say that while the “look” of my blog is rather feminine, that’s just my personal style; it makes me feel good while I’m pulling together all of these facts and articles. You are just as important and welcome as female caregivers, and there are many aspects of the blog that were created specifically with you in mind.
If this is your first time caring for a loved one, it can be daunting and scary. But don’t be afraid. You can do this. All you require to be a good caregiver is the desire to help and give comfort. The rest you’ll learn, one day at a time. Unfortunately, “Caregiving 101″ isn’t taught in schools, even though it’s a natural and long-practiced part of life.
This blog is for caregivers:
- Past caregivers who are trying to recover from their ordeal and/or loss
- Present caregivers who are currently caring for an ailing loved one
- Future caregivers, who are seeing the signs and realizing that soon they will have to do some serious decision-making.
Caregiving is both scary and rewarding.
Scary, because you never know from day to day what will be required of you. Caring for another person is a big responsibility. You want to do everything right; your worst fear is that you’ll make a mistake and add to their pain.
Rewarding, because there’s nothing like the feeling you get when you’ve been able to ease a loved one’s pain. Having them smile at you and say “I feel so much better”, is an incredible rush of joy.
But the bottom line is, caregiving can take a terrible emotional and physical toll on the caregiver. Depression, heart disease, and Type II Diabetes are common among primary caregivers. But this doesn’t have to be, if you’re aware of the hazards, the precautions, and the options open to you. I hope you’ll take the time to read some of the information and caregiver stories here. We’re here for you. You can contact us anonymously via the Comment boxes and ask questions or tell us what you’re going through. You can contact one of our Private Conversation volunteers if you need someone to correspond with or talk to, but don’t want to do it publicly. You can share your own story with us so others can benefit from your experience, or honor a loved one on our In Memoriam page – just click on the “Submit Stories & Inquiries” button. I hope you’ll learn from our mistakes, and that you’ll realize you aren’t alone in what you’re experiencing. And I hope you’ll come away feeling lighter and more sure of yourself and your role as a caregiver.
Be well, and don’t lose heart.
Jean Fogelberg
DON’T LOSE HEART
This life is heartless and it’s rarely just
Full of sad betrayals and misplaced trust
And it can suck your spirit just as dry as dust
And steal your soul if you let it
Every life contains it’s sorrows and pains
It’s stormy weather and it’s rough terrains
You watch me wrestle with my length of chain
And smile so bravely as you tell me
Don’t lose heart, Don’t Lose Heart
Though it feels like yours will fall apart
Just remember when the road gets dark
I will always be beside you
Well I spent my life pursuing fortune and fame
Chasing rainbows in a shadow game
And I’m not sure what I’ve lost is worth the gain
Or why my soul remains so restless
You’ve seen me stumble, Lord you’ve seen me fall
You shared my trials and you’ve seen me crawl
And when I think that I could lose it all
You give me courage and you tell me
Don’t lose heart, Don’t Lose Heart
Though it feels like yours will fall apart
Just remember when the road gets dark
I will always be beside you
When the road gets rocky and the ride gets rough
And the best you’ve got to give ain’t good enough
There will always be a place inside my love
Where you can find shelter, where you can find shelter
Every life contains its sorrows and pains
Its stormy weather and its rough terrains
You watch me wrestle with my length of chain
And smile so bravely as you tell me
Don’t lose heart, Oh Don’t Lose Heart
Though it feels like yours will fall apart
Just remember when the road gets dark
I will always be beside you
Well I will always be beside, beside you
~ Daniel Grayling Fogelberg . . .
Click the “Play” arrow to hear “Don’t Lose Heart” by Dan Fogelberg (from the “Portrait” CD Box Set)
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Personal messages to me, or comments pertaining only to my husband Dan will be moved from the WELCOME page to an appropriate page or deleted.
Why?
If a caregiver comes here and reads a lot of comments about things they’re not familiar with, they might feel like they’ve entered a club they don’t belong in. We want all caregivers to feel welcome, and to know that they’ve come to the right place.
Thank you for your understanding!
~ Jean
Jean,
I haven’t been on this site for over a month and so much has happened with my handsome husband, Doug. I love this site and some day as you have emailed me to write our story…I will some day. I just listened to Dan’s song “Don’t Lose Heart” and it brought tears to my eyes. I will let you know that the weekend of July 23-26, we went to Nederlands, CO, before Doug had to go to Craig Hospital in Englewood, CO, for his annual medical evaluation. We played Dan’s two CDS “Netherlands” and “Love in Time” to begin celebrating our 15th wedding anniversary which is on Dec.23. You see, Doug proposed to me 15 years ago on July 7, 1995 at the lake where his diving accident happened and caused him to be a quadriplegic. Dan’s music helped him through his journey of a new chapter in his life at the age of 16. After a good checkup at Craig Hosp, we were enroute home to Morton, IL (10 mins from Peoria) and Doug took ill. We took a side trip to Dyersville, IA, where the Kevin Costner movie “Field of Dreams” was made to see the baseball diamond, etc. After taking fun pictures with Doug and our 14 year old grandson, Damon, we were about to load in the van when Doug said “I can’t breathe”! An experience that some day I will share on the site, but I will let you know that we were 3 1/2 hours away from home and now Doug in ICU at Mercy Hospital in Dubuque, IA, for a week and was on a ventilator for 20 hours. To ease Doug about being on the ventilator, I reminded him of Nederlands and while he was going to be asleep to dream of this beautiful place where we listened to Dan’s music. He just smiled. Diagnosis: pneumonia and a mucus plug that collapsed his left lower lobe. After one week, he was transported by ambulance to St. Francis Hospital in Peoria (Dan’s hometown) and closer to our home with another one week stay there. When it was only going to be a 2 week vacation in Colorado, it became a one month away from home. Now we are home and Doug is recuperating. I do want you to know that I kept telling him that he had to get better as we had rsvp for the pre-party, tickets to the tribute concert and for the post-party event for his favorite musician. We have our first visit with the lung specialist later today and I hope we have good news. I read on the site that many people are coming to the weekend events including you. We are excited to participate but yet I have a fear that Doug will get sick being around alot of people. So…as Dan’s says “Don’t Lose Heart”, I will hum those words with a smile knowing that my handsome husband is having the time of his life. I hope that I can introduce him to you this weekend so he could get a hug from Dan’s beautiful bride. Thanks Jean for reading this lengthy message.
Dear Angie,
I also attended the memorial weekend and it was a beautiful experience. I wanted so much to come over to you and your husband and introduce myself, I wish now I had. What a tower of strength both you and Doug are. Dan’s music brought my husband and I together, many years ago. He was not able to attend, as he also has several health problems, and currently in a rehab facility for wound care.
I hope you both are well, my best to your wonderful husband.
~Char
Forecast for Peoria:
Tomorrow: Sunny w/a high of 83
Saturday: Sunny w/a high of 86
Sunday: Sunny w/a high of 91
Throw in some humidity, and it will be a Midwestern scorcher of a weekend. Would much rather have this than rain any day!!
~Ann
Dear Jean…
I want to put this out there and see what you and others may be able to offer me….
I wrote to this website awhile back and found wonderful comfort in my situation…dealing with a husband, ill for 14 years…
but I must tell you the last few weeks he has been on the couch..not wanting to do anything…snapping at me and our children…and then mad if I am not constantly there with him…..
if I leave the room he will make noises ( similar to a spoiled child) or bang on the wall…seeking my attention I am thinking…
I strive to take care of him but this is a man who is able to do for himself…he simply chooses not to…
some days I find myself exhausted trying to do everything…
any advice??
Thanks so very much and BTW….a card will be coming to you at the dedication weekend…via Char… from me
thanks again and congrats on the weekend!!!!
Hi Mary,
Could you remind me what illness(es) your husband has? I remember responding to your post after your dog died, but would like to learn more about your husband’s medical condition :-) I would like to provide some helpful words….in the meantime, hang in there!!
~Ann
Thanks Ann….
my husband had a heart attack in January but also suffers from diabetes, neuropathy,high blood pressure,retinitis pigmatosa and is HIV positive….he has so much but does little at times to help himself and as much as I try ….I am becoming exhausted….
I go back to work on 9-7 (back to school) and cannot be worn out….
yet I hate to be mean and feel like I am the one sick….
Dear Mary,
I can really “hear” the frustration and fatigue in what you’ve written.
Sounds like you’re worn out and going stir crazy. First of all, will you go back to your job at school on a full-time basis? Whatever the situation, who will be caring for your husband while you are at work? Sounds like you need a break from caregiving-and I’m in no way blaming you for feeling the way you do. It’s taxing work, no doubt about it.
O.K., let’s cut to the chase. My husband is a physician-diagnostic radiology (CAT Scans, MRI’s, etc., and performs many interventional procedures as well). I’m an RN, though I’ve been at home for several years w/my 2 school-aged daughters. I spoke briefly w/my husband about YOUR husband’s medical state, and we agreed that your hubby has a combination of some pretty serious conditions. Our hearts go out to both him AND you.
Would you feel comfortable sharing some information about how the Retinitis Pigmentosa has progressed over the years? For ex., when your husband was first diagnosed with the condition and how much vision he still has, or doesn’t have. I’m assuming that you are aware that RP is a hereditary, genetic condition. You mentioned that you have children….have they been examined by an ophthalmologist, Mary? I am glancing at an article from http://www.blindness.org, and the article states that RP is typically diagnosed in adolescents and young adults. In addition, the following is written, “If a family member is diagnosed with RP, it is strongly advised that other members of the family also have an eye exam by a physician who is specially trained to detect and treat retinal degenerative disorders. Discussing inheritance patterns and family planning with a genetic counselor can also be useful.”
Hubby is probably also on a number of medications, which may interact with each other, which concerns me. Have you spoken with your pharmacist about any possible side effects…especially when combining meds for so many different conditions? Irritability, mood changes, etc., can certainly result when one is on certain meds and/or when meds are used in combination w/each other.
Your husband has diabetic neuropathy, correct? Does he have much feeling in his legs and feet? My father-in-law was really plagued by problems with this condition last year, but now the combination of medication and use of a cane has helped tremendously. Lastly, I wanted to make sure you yourself, Mary, have been tested to reassure yourself that you are not HIV positive. HIV is a touchy subject, but when someone is infected with the virus, others can become infected, also. We want to keep YOU healthy, too :-)
It would be helpful to know if anything has changed in your household, with your husband, etc., in the past few weeks that could be contributing to his decreased energy level/decreased self-care & his heightened irritability. Maybe you can provide us with additional info. RE: what activities of daily living your husband was previously doing that he is no longer willing/able to do. If you have noticed any recent deterioration physically or mentally, that would be good for us to know.
It’s somewhat difficult to give additonal advice, considering the severity of your husband’s medical problems and not knowing how severe each condition is at this point and time. My heart goes out to you, Mary, because I’m sure you have a great deal of weight on your shoulders, yet you’re being yelled at, etc. Please just let us know how well your husband is able to see, walk, etc., so we can grasp what his limitations realistically are. In the meantime, take good care & hang in there :-) My prayers are with your family…
Love,
Ann
his RP affects his periphial (sp?) vision and has not gotten any worse in over 20 years He was diagnosed at age 27. His uncle is blind…his dad and brother both have it but survive…his sister does not have it.
the boys have been tested for it and do not have it
I have been tested for HIV….do not have it…do not intend to do anything to get it…(another thorn in my husbands side) He is mad at me for ending the physical side of the marriage..but I am sorry I have children and will not have them lose both parents….That is harsh I know but it is my belief.
we do not know for sure how he contracted it…he worked in a state institution and was bitten spit on urinated on etc…so he says that is how….I in the back of my mind will always wonder if another way caused it….His parents still think I gave it to him and that was a mess in 96 when he was diagnosed…they demanded to see test results on paper etc….
my husband never did much to begin with….so as for the lack of activities…it’s not much of a change but he used to go to support groups and he has recently ended cardiac rehab…that was 3x a week and he seemed to love the fact that he lost weight..but now he sits all day and tells me he can eat whatever he wishes…
I just hate that he doesn’t take care of himself…not for me or the kids but for himself…seems he has no goals anymore…
he cannot feel past his knees from the neuropathy
he walks and drives
Yes I will go back to work full time…we cannot afford me not to…when he stopped working our income took a nose dive and that is I am sure another issue….he said to me that he thought retirement would be different..but he stopped working at age 47 with kids still at home etc….
so I am sure he sees his parents traveling etc and wonders why he can’t do that…
even when I am able to retire I will have to sub for about 5-10 years to make ends meet which I have no problem doing…but he is not happy about that…
I hate to sound as though I am complaining…but I just wanted insight as to anybody else goes through the same kind of thing…
He also has a bad habit of crying wolf….tells me something is wrong or acts like he is passed out etc…when I say I am calling 911 or lets go to the doctor he laughs….
I don’t think that is funny and told him one of these days I won’t believe him….
Don’t get me wrong I do love him….but somedays are harder than others..
I work summer camp which ended 2 weeks ago and now have until 9-7 to begin teaching again…but it is hard to be home when he is sitting and constantly asking me what are you doing now?
I thank you for all the help….
I have been in a support group before…and getting things out in the open really helps
this site is AWESOME
Hi Mary – Just two things. With all the health issues your husband has, is it possible HE is suffering from depression and/or anxiety? Depression is pretty common after a heart attack. It would seem that he does not have much hope for the future. Does he have a faith that gives hope for the future? Faith, hope and love …
Also, I am sure a great deal of his hostility towards you (at least that is what it sounds like to me) could be due to the lack of intimacy. It is a huge need for men to have sex -that is how most men feel love and connection. I know when my husband and I argue and it leads to diminished relations, or we haven’t had sex for awhile due to my fibro or whatever, he can turn into someone I don’t know very. It can get strained. The idea that your husband believes this part of his life is over, would seem to hurt him tremendously. I am with you 100% that you should not do anything to contract HIV; however, there are many couples in this world that have this situation and still enjoy a satisfying sex life, somehow. It sounds like you may need to some outside help to get to the bottom of the frustration and resentment on both sides. A satisfying intimate life cannot happen with resentment. Have you considered marriage counseling?
One thing I remember Jean saying in one of her posts is to treat each other gently. Very good advice … very hard to do at times. Mary, I do hope the very best for you – you are a very strong woman! Joan
Thanks Joan but I am firm in not being physical…I am sorry if that upsets him but it was not what our marriage was built on to begin with and I think he should understand my feelings where this is concerned….but yes men do feel a loss I am sure when that part of their life is gone.
He was on Cymbalta for depression a couple years ago but he said he felt worse…so the doc took him off
As I have stated…my husband never really did too much…
when the boys were little I was the one outside playing football with them ….etc…
I blame that particular example on his upbringing…his parents to this day do not hug their children or grandchildren…their loss I say….
As for faith…well he grew up in the church but his faith is on a as needed basis…he doesn’t go and I don’t think he really cares….
We have gone to counseling….
thanks for your concern
Mary, words of loving encouragement, timeless treasures that carry over and apply to anyone, any situation, any faith. True genius, knows no boundaries.
“Don’t lose heart, Oh Don’t Lose Heart
Though it feels like yours will fall apart
Just remember when the road gets dark
I will always be beside you.”
~ DGF ~
thanks Char!!
Mary, I think you are very brave to stay in the marriage.
As for his parents, it should be obvious by now that you are healthy and could not have infected him with HIV. Seems they should be thanking you for taking care of him so well. It must be difficult to keep the kids untouched by it all.
Good luck to you.
Carol
Carol….thanks for you kind words…
I must say on a selfish note I have stayed because I love him and wanted our kids to have a normal childhood…and at times I tell myself why would I go when the two of us have built a life together and I shouldn’t have to end up out of my house etc….weird thinking but sometimes it runs through my head….
he has been better the last couple days and is back to his group tomorrow!!
As for my inlaws…they are nuts anyway…so their loss….they hardly communicate with any of us…
My boys are WONDERFUL
the 25 yr old knows exactly what is wrong with his dad as he asked me when he was 17 and I told him
the 21 does not…and until he asks….he just knows cancer…
you see we live in a tiny town and there again I wanted a normal childhood for them…people can be cruel when they find out about this disease
thanks to all….
Hi Mary. I was a caregiver to my parents, who both passed in 2007. My dad lived for over 25 years with heart disease that forced him into retirement at the age of 52 in ’83. I watched my mom (Mary-a great name!), a registered nurse, care for him while working full time, and never thought anything of it, honestly. But as a Daddy’s Girl, years later, I used to get upset with how impatient she could be with him and his “helplessness”. She’d say, “Dick, is sitting in front of the tv, watching the Cubs, really the only thing you can accomplish today?!” We all knew he was more capable, of course, but as a daughter who didn’t hold the responsibility, I just didn’t understand. When she died from cancer in June of ’07 and I took over his full care, which had declined even further following her diagnosis, I experienced for myself that same frustration that she felt. In the days before her passing, I’d spend hours in bed with her, talking during her wakeful moments. She told me, “Your dad’s a handful, Deed. Be prepared. Have empathy. Step away when you must. Take time for you, as selfish as it may seem. If you lose your cool, apologize. He understands.” She was right. During the five months after she passed, his heart function was a mere 17%, and his heartbreak was palpable. One day, when I couldn’t take the grief and responsibility anymore, I lost it on him over days of not putting his newspapers in the recycle box. I called my best friend and pleaded with her to take a ride with me. When I returned an hour later, I hugged him through my tears, apologizing for my frustration and my angry words. He told me he understood, and he said, “I don’t mean to be such a burden, and I don’t mean to be so lazy. But I’m tired, Deed. I’m tired of being sick, and I’m sick of being tired.” I explained that I was sick and tired, too; sick with grief over losing Mom, tired from having so much responsibility for her and now him, and that I was scared because I knew he was giving up. He first encouraged and then demanded that I carve time out for myself, away from my responsibilities for him and even for my husband and teenage son. I reached out to a couple of his friends, asking if they could help me keep him company so I could have some of that time for myself. Rather than wait until I was about to blow again, I did the same thing that I later realized my mom had also done. I began scheduling time out of the house that was just for me. If my family couldn’t be home with him, his friends would show up to play cards or watch a Cubs game with him. I’d go for a mani/pedi, or a shopping trip, or a movie or dinner with the girls… and eventually convinced myself that I wasn’t being selfish. I found that when I had that time-out to look forward to, I handled the in-between times much better. After the blow-up, and after securing some away time each week, I found that he did do a little more for himself. I think he got so used to Mom, and then me, doing for him, that he just really didn’t think he *needed* to do much for himself anymore. I’d come home and find his newspapers picked up, his drinking glass in the dishwasher, his laundry sorted for me… all kinds of little things that in the grand scheme of life are small, but left me feeling appreciated. I don’t know how old your children are, or how reasonable some “Mary Time” is in your situation, but that is what I would encourage you to do. You are a wife, you are a mother, you are a caregiver to many. And you are also Mary, a woman who not only deserves time for herself, but needs time for herself, even if it’s just locking yourself in the bathroom for a half-hour bubble bath without any interruptions. Take some time to quiet the noise that surrounds you. I felt like I was better balanced when I did. That balance was short-lived, however. My dad passed away five months after my mom. I didn’t lose my cool with him again after the newspaper incident, but I still sometimes feel guilty about my words and my frustration that day, three years later. I know I’m not alone in that guilt, and neither will you be if it happens to you. I apologized to my dad a few more times over that one incident. He said, “I’ve forgiven you, Deed… now you need to forgive yourself”. Be open to forgiveness of your husband’s helplessness, your frustration, and what can feel like selfishness. And remember to say “I love you” as often as you can. My parents knew I loved them, and I know they loved me. And Love, as they say, heals all wounds. Be well, Mary. I’ll keep you in my thoughts and prayers. ~DeeDee
Dear DeeDee,
I just read what you wrote and it touched me deeply. Take this for what it is worth as an anecdote, but I was with my father in the hospital when he died. I swear I saw his spirit leave his body as a blue light and he came to me in a dream and said “Don’t worry Raymond, Heaven ain’t so bad”. Jean, I just wanted you to know that I sang “Along The Road” to my father at his funeral. It is so important to give yourself time, your loved ones time, and to hold the good memories in your heart and forgive yourself for being human in the process of life.
Thank you, Ray. **DeeDee
Dear Mary, I just finished reading what DeeDee wrote to you about her father. What a wise woman her mother was! After reading her story, what do you think? If you and the kids simply get out of the house and you stop doing for him, will he start doing for himself? Does he apologize for his tantrums later on? ~ Jean
My sons are 21 and 25…and no he does not apologize for his tantrums….
he was somewhat of a selfish person before he became ill…..I have always taken care of everything …raising the boys…paying bills…etc….even purchasing my own Birthday and Christmas gifts…he just wanted the attention…in conversations with people he wants to be the main focus…
what Dee Dee wrote is profound and I will take her suggestions….I do try to take some time for myself..but it is hard especially here in the house as he follows me…I guess he is bored and when I suggest activities..he doesn’t want to do them…this you must know is a man who quit working against doctors orders….he could still be working; out in the world …but chooses to sit at home…
so I do my best….I tell him I love him everyday..
but he told me he is mad that I am still working….(I have about 8 years to go)
I am sure this is not easy on him but as stated here….he does have to realize that my health could be comprimised too….in fact I have developed high BP from stress….but as most of us women do we go on….
I have children to take care of…
I do thank all of you for the support….I feel much better
I will however throw another curve ball…..
what do you say to someone when they keep saying to you…”when I die and you remarry”?
I have no desire to ever remarry and I guess this is his way of taking care of me?
Mary, from what you’ve said about your husband, I’d guess that the real reason he keeps saying “when I die and you remarry” is so you’ll say “I’ll never remarry”, and give him the satisfaction of knowing that you won’t go on with your life and be happy without him. He certainly has done a good job of making marriage seem like an unattractive arrangement. Has it ever occurred to you that you are in an abusive relationship? TheSafeSpace has a test you can take to determine if you are in a healthy relationship: http://www.thesafespace.org/pop-quiz/quiz-is-your-relationship-healthy/?gclid=CIrYxJSA0KMCFZJ95Qod9UTTvg. You don’t really need to tally your score – just think about the questions and how your answered them.
You are so nice…too nice? Are you enabling his bad behavior by tolerating it? When was the last time you were glad you married him? What about him has changed since then? Make a “The ____ I Knew” list of the things you loved about him that he has lost and put it in a “I Miss You” card. Write that you know that person is still in there somewhere. Write the list and card with feelings of love and good intentions. Seal the envelope and give it to him. Let him read it on his own, and don’t mention it unless he wants to talk about it. If he does and he blames his illnesses for all the changes and bad behavior, tell him you don’t want to discuss it with him, that you just wanted the old ____ who’s still inside of him to know that you miss him. Just a idea – it’s a long slow slide and he may not realize just how far down he’s come. He might realize he doesn’t want you and your sons to remember him like this. ~ Jean
Jean, that is one hell of a good answer!!!
Mary, your husband reminds me a great deal of my late step-father!
He died last summer, LONG after Mom divorced him. I didn’t mourn!
He was VERY possessive & didn’t want her to have anything to do with her friends or her family. He wasn’t physically abusive but he was VERY mentally abusive!
Okay, this is the kind of person he was; the house that I grew up in (& my Mom also grew up in) was my maternal grandfather’s. After he died, Mom bought out her brother & sister so that she could keep the house. It was just me & her then & I was still in school. Mom was working as a nurse’s aide & they didn’t make much money, so she got behind on the payments. They got married 6 months after I graduated from high school & were living in the house, he didn’t want me around so I moved in with my sister (yes, THAT one). She told him that she was behind on the house payments & asked him if he could loan her some money to catch it up. He told her that he would BUT she’d have to sign the house over to him…the ENTIRE house! Not having much choice, she did & after they divorced, he sold the house & moved to Florida.
In a circular way, I wanted to let you know that his abusive behavior to her actually drove her to a mental breakdown! TWICE!
The first therapy she was in she ended too soon. The second therapy finally gave her enough strength to leave him. She left the house with basically the clothes on her back & moved in with me in my little apartment. She said that peace of mind was worth more than any of her possessions!
Why don’t you check into seeing if there is some kind of therapy center in your area to help you? Mom was kind of leery of doing it at first but she ended up LOVING her therapists.
Her therapist ended up prescribing an anti-depressant for her too & it has done wonders!
You are too good of a person to let him make you sick from stress!
By the way, my aunt was widowed @ 3 years ago & she just remarried last week. She’s in her 70s & her “groom” is in his 80s, so never say never!!!
Take care of yourself!
Love ya,
Denise H aka “Neecie”
Thanks Denise….
I am not restricted by him from seeing friends or family…that part of our lives is very full
I go to a support group…thanks…
do not want to take meds….(too much to do!!)
And I do say never when it comes to remarrying…
I am happy for your Aunt though….good for her!!!!
I think it is unhealthy ….abusive…could be mentally ….and yes I definitely enable him…no doubt
I think this week is just getting to me….
I will say that he does make me laugh and that part of him is not gone
I will make that list…that is a great idea….
we just celebrated our 28th anniversary last week…and had a very nice time down at the shore…
He did tell me the other day I am a good caregiver …I think the fact that he never went overboard to show affection etc…has gotten worse due to his situation…
I also think that I may need to step up a bit in the Mary he knew dept as I am constantly worrying about bills and meds etc…
As for his wanting me to say I wont remarry …maybe so but I myself know that I will go on and again be happy …as I don’t live my life for him….I have two wonderful sons that make me happy and so many things in the world that would occupy me…
Miss him? OH yes I would ..but it will not consume me….I know some friends who say to me….”I would die if my husband dies” that is not the case for me…mean as it sounds…I am and always have been my own person…
And Jean….you are a wonderful example of a brave strong woman…I know you miss Dan and you had an entirley different situation but look at all the good you are doing….BRAVO
I will take yours and everyone else’s advice to heart and keep you all posted…
thank you
Mary,
I’m saddened to hear of this recent sorry plight you’ve found yourself in. I wish I could offer some further advice, but I think I need to step back, because I’m confused. Since you shared that your husband had a heart attack in Jan., suffers from diabetes, neuropathy, high blood pressure, Retinitis Pigmatosa, and is HIV positive, I thought he sounded like a person with a mixed bag of potentially serious illnesses. Therefore, since I’ve never met either of you or spoken to you, I’m having difficulty assessing exactly what’s going on between you and your husband. I hope you are able to work things out, so that you can both feel better physically and psychologically. You are both in my prayers :-)
Love,
Ann
Mary, I love you: your talent, your strength, your brilliance, your creativity. I believe your hubby is just trying to get some type of negative reaction from you. When I say “negative” I mean, your response is just something he wants to hear that goes against his wishes, etc. I think you are in a hard place, he is not “sick” but his condition is still in the back of your mind. Ok, the bottom line is if that was said to me, I would respond with: “well I doubt it because of the care I give to you, you will be the one remarrying!!!! Yeah Mary, turn the table, has he read any of the stories here? Does he know he is not alone?
He feels sorry for himself, ok, he has to move on with that, he can not take out his
frustrations on you and the boys. BUT if he does, he has to know that Mary has to have time for Mary, or else………
Mary, I wish I had better insight to offer, but I am thinking about the need for your attention. What I have learned that negative attention is attention, and when someone wants attention, they will try anything to make you sit up and notice them. How you respond is the key in coping in a difficult situation.
I would think that individual therapy might be helpful for your husband in trying to cope and manage. Maybe getting a chance to talk with someone about himself would be good for the both of you.
Take care, Joyce
Joyce…I absolutely agree…and believe it or not…he is going to his support group tomorrow…he used to go 2x a week then stopped….I told him today that maybe he would feel better if he went…and about an hour ago he told me he is going…I am thrilled…I want him to feel like he has something to do….something to look forward to and if his group serves that purpose then he needs to go!!!
And I agree with your saying how you respond is key…
I try to be sensitive and kind….
becoming angry doesn’t do either of us any good!
Thanks Joyce!!!
Great feedback, Joyce!! Children (not that Mary’s husband is a child!!) are also notorious for engaging in negative attention-seeking-behavior, temper tantrums, etc. My favorite example is when I’m on the phone….my older daughter was so well-behaved, but I tell you, she did NOT want me on the phone. As a toddler, she’d starting getting into my wallet, pulling out credit cards, insurance cards, my nursing license-anything she could get her hands on!! My younger daughter STILL makes a point of frequently interrupting my conversation when I’m on the phone.
Mary, so glad to hear that your husband is planning to return to his support group. That’s progress!! He can help others and others can help him. Everyone needs camaraderie :-)
~Ann
Oh I call him my other child sometimes…hahahaha
thanks everyone
oh Char I love you so….
he does not know of this site…this is comfort for me
I have turned the tables on him many times…haha…but I will use it again next time!
Yes he is looking for feedback and unfortunately the negative kind…
as I have said to you before..this too shall pass but I think the past week or so has just grated on my nerves!!!
Hi Mary,
My wife had a heart attack four years ago, She is brittle diabetic, is diagnosed with Fibromyalgia, Degenerative Joint Disease, Severe Sleep Apnea, COPD, etc. She has done little since her heart attack but is making slow progress toward realizing that life is passing her by. One can learn to be helpless and though it seems heartless, sometimes it is “cruel to be kind”. You need rest and recreation too and your husband I feel needs to consider your needs as his “caregiver”. I’m a licensed nurse and have a degree in Psychology and have worked with my Psych degree in habilitation and behavior management. One of the most valuable things I learned in nursing school is that health is not the absence of disease, as we all have things to contend with. Health is what you do with what you have to work with. Good luck.
Hello again Mary,
I am at work and basicly what I do is make sure my “patient”‘s ventilator keeps him breathing. He frequently say thank you but I have yet to hear him say he is sorry if he fails to take my needs in consideration. This has brought me back to one of Dan’s songs”
“There’s a place in world for a gambler, there’s a burden that only he (or she) can bear, there’s a place in the world for a gambler, and he (or she) see…
It is very important for you to see that you need to take care of yourself too and it is important for your husband to see that if you don’t, then you won’t be able to be there for him, so he needs to take care of you too in whatever way he is able.
I meant to include the following in the post I just made…
When we learned that my mom wasn’t going to survive the cancer that invaded her body, a friend shared this with me, and I want to share it with all of you. I continue to read it almost every day, as I still get angry with the cancer that took my mom from me. These few words help to bring me back to a place of acceptance and hope, and erase the ugliness and cruelty I witnessed as I cared for her. If it’s been posted here before, I apologize for the duplicity. I don’t know who wrote it.
Cancer is limited…
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
Cancer cannot kill Family or Friendships
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
And it cannot conquer the Spirit
Love and Peace,
DeeDee
DeeDee
I have never read this before. I can fully understand how horrible it must have been to watch your mom suffer and pass, and then your dad. You should know you are amazing to do all you did. Thank you for this uplifting piece on how limited cancer is.
~Char
Hi Char. What I found so striking about this piece is that when you’re living through it with someone you love, it feels like cancer DOES do all those things. Only with time have I learned that it can not and does not have that power. I read it often now as a reminder when I’m feeling sad, lonely, and thinking that life is unfair. Thank you for your kind words, Char. **DeeDee
Hi Jean –
My last post here was in February, when I told you and the others here about caring for, and ultimately losing, my parents, Dick & Mary Delano, within five months of each other in 2007; Mom to colon cancer, Dad to heart disease and heartbreak. You encouraged me to tell my whole story… at seven pages, it is still a work in progress. In writing, I get so overwhelmed with emotions, sometimes believing I may yet be in some stage of denial. I come here often and read others’ stories when I find myself in dark places, wondering if I really did everything I could, everything right, and everything they deserved. I come away from this beautiful place with my heart full. Bless you, again, for creating this place for all of us. And bless all of you who share your stories.
My friends Rita (Conifer, CO) and Cathy (Madison, WI) and I (Princeton, IL-40 miles north of Peoria) will be joining you in Peoria this next weekend for your beloved Dan’s Memorial Dedication Weekend. We all lived in Colorado and saw Dan play every venue in the state for a 20-year period. When the weekend was announced, our reservation was made at Hotel Pere Marquette within days. We’ll be there not only to honor and remember Dan, but to honor YOU, Jean. For what you have done here and for all that you, Laurie and Deb have done at thelivinglegacy.net, I hope that I have the opportunity to personally thank you for your devotion, selflessness, and many generosities. We can’t wait to celebrate You and the beautiful man you continue to so lovingly share with the world. You are a beautiful soul.
See you in Peoria! DeeDee
Ah, Dee Dee, it makes me so happy to hear that we’ve been a help to you. Writing about Dan is emotional for me, but so cathartic. Others have said that writing their story was a healing experience too. I think it’s not denial you’re feeling, but a peeling away of layers of grief. Each memory and story seems to sit on it’s very own layer. I’m looking forward to meeting you and your friends, and all of my DLH angels. We must get a group shot together! ~ Jean
Jean, I believe you got it just right. I sat here with tears stinging my eyes as I read your response. “Each memory and story seems to sit on its very own layer (of grief)”… this is exactly what I experience when I sit down to write. There are so many beautiful memories of my parents that I’ve written so far, immeasurable gratitudes that I feel for them, yet there’s still so much pain not only in the loss, but in the suffering I witnessed. That is, indeed, the grief. It’s not that I didn’t know that already… it’s the artful way you’ve put what I feel into words. I step away from my story when I can’t handle the grief anymore, but I will finish my story… I will. I’ve said it to you here before: I hope that when you lay your head to rest at night, and search for sleep, that you feel an immense blanket of love and gratitude from all of us here. It’s my honor to be considered one of your DLH angels… please know that you are most certainly an angel of mine, as are all of you here who share your stories. Love really is all around us, isn’t it? It’d be my honor, Jean, to stand together with you and your DLH angels in Peoria.
p.s. I was one of many who supported you during Relay for Life. An incredible contribution was made that day… I applaud you!
Dee Dee, Your mother sounds like a very amazing woman with great advice. She must of been very proud of you for taking care of your dad and even getting him to believe he was more capable than he had been. It is easy to spoil family by doing too much when they are sick, and then be exhausted and on edge. The roles change when parents are sick and always a challenge. Your dad also ended up giving you advice and permission to take care of yourself. That seemed to prompt you to reach out. Good for you and great post that you wrote to help others.
How wonderful that you and your friends will be all together in Peoria! I am sure there are lots of memories you all share after 20 years of friendship and Dan’s concerts.
Keep writing.. I do believe it is good for the heart and soul. I think Jean said it beautifully about” each layer having a memory and story.” In each layer of grief I think there is discovery. Over time I believe the memories and stories seemed to make connections for me and help me cope.
I hope to see you in Peoria. I feel very lucky to be able to go and be apart of this amazing tribute for Dan.
Take care, Joyce
Hi Joyce – Family is fast asleep for early work and school, and since I don’t work any kind of regular job, it’s DeeDeeTime, which perfectly suits my night-owl tendencies. One of the nicest things my 16.5-year old son said to me last school year was, “Mom, you really don’t need to get up with me in the morning anymore. I can handle it.” Sweeeet!
Thank you so much for the very kind, supportive thoughts. What Jean said to me, and what you reiterated, has been lobbing around in my head ever since, so I’ve been quick to a chin-quiver today. While dusting today, I had Dan’s music shuffling, filling the house. The beautiful, swelling orchestral section in “Netherlands” was playing as I came around to the final portrait that my folks had taken. I picked it up and absolutely burst into tears as I looked into their eyes. I always have an emotional reaction to that piece of orchestration but today, Oh my, yes, I did indeed have a moment. It wasn’t just myself I was thinking of today, though. About an hour earlier, a friend had texted that her dad was just diagnosed with lung cancer. When I looked at my folks, I surely thought of myself, but more than that, I was overwhelmed with thoughts of my friend’s family. I saw my parents as a symbol of hers (our parents knew each other, btw), and felt the familiar storm clouds rolling in. They don’t have a lot of information yet, but I will still ask any of you who are so willing, to please add this family to your prayers. (thank you) I shared DLH with my friend and encouraged her to come here for information, and if/when she needed it, for support.
Now back to me, and the “layers of grief” …… As for my story, written to share at DLH, I mentioned it’s a “work in progress”. See, I couldn’t just talk about my folks’ sicknesses and deaths and my role as their caregiver; their story, and our family’s story, is so much more than the last two years of their lives. So I started at the beginning. Where I am now in our story, and where I’ve stalled, is getting the news about Mom’s cancer. So yeah, I’m at the tough stuff. I think the reason I used the word “denial” in my first recent post, is that in my conversations with myself, it was as if I was saying, “Well, if I don’t write it, maybe it won’t be so”. But I know it is. I know this. While thinking about it today, I suggested to myself that perhaps it’s somehow attached to how my brother and I haven’t had to, or been forced to, deal with “closing” our folks’ lives like so many surviving family members must. Please bear with me as I explain… My husband, son and I live in the farmhouse where my dad was born in 1931, and the house I lived in from age 8 to 19; in 2002, when I was 41, Devin, Logan and I left Spokane, WA and moved in. My folks have a winter home in Arizona, and spent nearly six months of the year there; their summers were spent at the farmhouse and a little cabin 15 miles away on the Illinois River. My brother and I have chosen to keep all three properties, so we’ve never had to empty a house of their existence. When we want to get away from the bitter Illinois cold, we go to AZ. We stay at Mom and Dad’s house, drive their car, and in March, we sit our butts in the same seats that Mom and Dad sat their butts in for 15 years while watching their Chicago Cubs in spring training. It’s as if nothing’s changed, and one or both of them will appear around a corner at any moment. Same with the cabin. I still smell Dad’s pipe the moment the door is opened. The farmhouse, while completely overtaken by my little family’s stuff, is still their house. Their bedroom is still their bedroom, with dressers and closets still full. Their kitties, Hans and Olie, are now my kitties. My brother and I talk about clearing things out in AZ, but then we seem to convince each other (rather easily) that since we don’t plan to sell the house, well, there’s really no hurry. I think that while we are obviously very fortunate in that we haven’t had to do so, it’s quite possibly become a little crippling to have everything still so in tact. I don’t know. … So that being said, back to the story of my story… Perhaps I’m having trouble moving forward because, well, because a story has to have an ending. Here’s what I’ve had in my brain all day: finishing my story may be the first ending I’ll have had to face since saying “goodbye”. Does that make sense? Kinda struggling to get my words right. Maybe it’s not where I’m at in the story itself… maybe it’s that I know the end is coming. … So should I be patient with myself and know that I’ll forge ahead when I’m ready, or do I force myself through to that next chapter? If you’re wondering, yes, I’ve had some grief counseling; at the risk of sounding like I’m making excuses, it didn’t seem to do much for me. Perhaps it was that I simply wasn’t in sync with the counselor, and the minister, I’ve spoken with. I’m still open to counseling-maybe instead of saying, “been there, done that”, I should try again, with someone else, until I find the right fit. ???
I’d very much like to address the other thoughtful words you shared with me, Joyce, but I feel like I’ve quite said enough for tonight. I didn’t intend to chatter on so, but I will say that I feel better for it. As if I’m stepping a little closer to some clarity. I don’t know for certain that caregiver grieving is really that much different than other grief, but I have to believe that on some levels it really is. All I know is that it’s all I know… and I’m clearly still fumbling my way through it.
As for Peoria this weekend… Rita, Cathy and I will be checking in on Friday afternoon and will be attending all events. I loved Jean’s idea of a DLH group photo and would bet that she has a plan to facilitate that. We could always do the “meet me in the lobby at ___o’clock” thing, too. We’ve got a couple days to figure it out. Are you traveling far, or do you live in the area?
Thank you to all who scrolled down the page, listening to me tonight. When I started this, it was 1:00am. It’s now a few edits later and 4:15am. Did I mention I’m a night owl? (This is a teence late for me, I will admit.) And can I just say how grateful I am that my kid doesn’t need early-morning-Mom anymore? (“Thank you, Logan!”)
Thank you again for listening… **DeeDee
DeeDee, the best grief counselor is time. No, don’t force the next chapter, unless you feel it will help you move forward. I still have all of Dan’s clothes, even though I know I should give them away. It’s been almost three years and I only just moved them out of our closet and into boxes, and that was difficult…it felt like a little betrayal. I don’t think it’s denial, I think when you lose someone dear to you, you hang on to anything you have left of them until you get to the next stage in your grief. ~ Jean
I believe you must be right, Jean, that the best grief counselor is time, especially in that the experience is so utterly unique to the individual. I have tremendous Faith, but for reasons of my own, am not a big fan of “organized religion”. When I lived in Colorado, the mountains were my church. I spent most of my years there in the foothills west of Denver, and had my quiet places where I could sit on a rock overlooking the canyon. This is where I felt closest to God, this is where I found peace in a noisy world. “The Wild Places”. I’ve lived away from Colorado for 13 years now, and there have been many times in the last five years that I’ve longed for my mountain cathedral. I have timber land with a pretty little creek running through it just a mile south of the house, but it’s just not the same. I’ve been thinking this morning that I’ve gotten more counseling, if you will, from reading stories here and interacting with you lovely people, than I did from a counselor or minister. I believe it’s the understanding that exists here… we all know what one another is facing, will face, or has faced. So I think I’ll give myself a little more time and see what comes of it. I’ve spent months coming here quietly… stepping outside my comfort zone these past few days has created more thoughtful reflection than I’ve experienced in quite some time. — Mom passed away June 19, Dad on December 1, and a week after funeral services, I learned that Dan was gone, too. I crumbled. Like so many others, Dan’s music was a thread that had woven its way through my life. So there was no Christmas 2007. Three years can seem like an awfully long time, but some days it’s as if it was yesterday. It was comforting, today, to know I’m not alone in my reluctance to face tasks that could feel like betrayal. Thank you for sharing… **DeeDee
Dee Dee, I have the opposite story from Jean and holding onto to things. Due to circumstances I didn’t take enough time with my parents belongings and parted with things too soon. And I regret that.
I then tried counseling too early and wasn’t ready for it, and the therapist was not a good match.I stopped going and let time be my guide.
Years later I went to a great therapist and I was ready to face some of the pain.
I did hold onto my father’s favorite shirt and can wear it and feel close to him. We all do, what we have to do.
Joyce
I must say, Joyce, that I’m relieved to know that you (and others, I can now assume) have had less than stellar experiences with grief counseling. My hometown is 7,000 people, and there’s one family counselor. When opening one’s heart and exposing one’s wounds in any kind of counseling, there has to be mutual respect and compassion, and that’s what I felt was lacking. Here, Jean’s vision gave birth to a place where being respected, respectful and showing compassion for others is what it’s *all* about. And it’s not by appointment. My emotions hit me when they hit me, not necessarily at 4pm every other Tuesday. I’ve been so filled with gratitude and comfort the past few days…time will tell if I try formal counseling again.
I’m so sorry you have some regrets about parting with things too soon, and that the circumstances seem to have made that decision for you. I know that I’m fortunate that I haven’t been forced to go through my parents’ things; I’ll work on feeling more grateful for it, too. I’m glad you have your father’s favorite shirt. Kinda like being wrapped in a hug, I’m sure. I throw on Dad’s Cubs hat sometimes. It just feels good. **DeeDee
Hi Dee Dee,
I think you’ll know when it feels write to forge on with your writing….writing is one of those things that just comes when the creative juices are flowing and you want to get your thoughts out :-) I wouldn’t force anything.
I have so much respect and admiration for you…I really don’t know if I could care for both of my dying parents in such a short period of time. Knowing myself, I’m sure I would feel too stressed and discouraged-physically and emotionally.
You really are a remarkable woman, Dee Dee, and I would just encourage you to allow yourself the time to feel sad, cry when the tears come, and turn to other activities when you need a break from all you’ve been through. I think you’re coping remarkably :-)
So glad you have such a thoughtful son (Love the name Logan, by the way!). It’s funny, because my older daughter, Allison, is also 16 1/2….she’ll be 17 on Feb. 10. She’s very independent, too, and I LOVE that she can drive herself to school for her early morning cross country practices!!!
I will be in Peoria Friday evening, and my husband, Kirk, will be coming Saturday morning to join me. We live in eastern Iowa-Iowa City/Coralville area, so it won’t be a long drive. I’ll look forward to meeting you and your friends there :-)
Take good care,
Ann
Hi Ann. Thank you for your encouragement and support. Taking care of both parents was a huge challenge, but in retrospect, I wouldn’t have wanted it any other way. It was my honor and my privilege to bring them comfort when they needed it, just as they would tell me it was their honor and privilege to be my parents. Remarkable… me? Nah. I was just a daughter who was blessed with tremendous love; who was taught empathy and compassion, and brought it all full circle. It’s amazing what we’re capable of when Life gets in the way. But I do appreciate the sentiment. — Coralville, eh? Too funny. Was just talking Rita (coming in from CO tomorrow, from here originally) about stopping in Coralville for a little shopping on Thursday, on our way to DesMoines. (We’re taking her squirrely teenage nieces to see the American Idol concert.) I’ll honk and wave when we pass through! I, too, look forward to meeting you and Kirk in Peoria. As for teenagers and driving… it’s stressful, but oh my word, yes, it’s wonderful to have shut down the taxi service!
Hi DeeDee, You don’t give yourself enough credit, though I’m sure you did feel grateful to give back to your parents all that they had given to you :-) Honestly, though, I probably WOULD care for one of my parents as well, if there was no other option. I’m the nurse in the family (though not currently working as a nurse), and when my dad had a stroke in 2007, I was the one of us 5 siblings who rose to the occasion to help my dad get to a state where he could rehabilitate. It was just more difficult for some of my older siblings, since they were not used to being in a hospital setting w/ill patients. I guess I was somehow able to view my dad as more of a patient than only my father-so I could distance myself a bit more. I truly was the only one in our family who never quavered in my certainty that my dad would pull through this and recover very well (Which he has). Everyone else had their moments when they thought he would surely die.
Your parents sound like they were such wonderful, loving people. I’m glad you were provided with tremendously unconditional love, even though your time with your mom and dad was shorter than you had perhaps expected. I’m so happy that you have close friends with whom you can continue to share closeness and your zest for life :-) Have you read the book, “The Girls from Ames” by Jeffrey Zaslow? (the same author of “The Last Lecture”). I’d be more than happy to give you my copy, since I’ve already read it and loved it. Let me know if you want me to bring the book to Peoria…it’s a book that’s special to pass on to someone else after you yourself have read it :-)
Please do honk at me when you and your friends stop at the Coral Ridge Mall-Ha!! MAYBE I’d hear you-NOT!!! If you DO stop there, and you’ve not previously tried Whitey’s ice cream, you have to promise me to stop at the food court and try it. Whitey’s only used to be in the Quad Cities (Rock Island, Moline, Davenport, & Bettendorf), so I made many a “Whitey’s Run” w/friends from Iowa City to the Quad Cities over the years. THEN, we moved back here and learned that Whitey’s has expanded. I’ve been able to convince many a friend that there is no better ice cream than Whitey’s!!!
Have fun w/your friends, DeeDee, be safe, and I’ll look forward to seeing you in Peoria Friday evening!! Hey, we went to an American Idol concert 3 or 4 years ago, and it was fun!! Do your friends’ nieces like Tim Urban? He’s a cutie and very charming :-)
Take care,
Ann
Hi Ann. I’m so happy to hear that your dad had a successful recovery from his stroke. Don’t think for a minute that it didn’t have a whole lot to do with You. Mom was a nurse, too, and your training and experience certainly gives you different insight. I’m sorry you didn’t have a little more support from your siblings. There’s so much fear to cope with in Illness, disease, and sudden, dramatic events like a stroke. We’re all different; some stand up to the fear and say, “bring it on!”, some learn to exist with it, some can take it in small doses, and some run fast and far. Your kind of strength , courage and tenacity was what he needed to recover, though. My mom was a nurse, too. Cardiac ICU/Telemetry/Infection Control. Dad went into emergency triple-bypass surgery two days after Christmas in ’82. He was in surgery for 19 hours. Could have been pronounced dead twice, but went to Recovery with a quintuple bypass and very little expectation that he’d make it to the next morning. When released from the hospital nearly three months later, we were told we’d be lucky to have him for five years. His poor heart was so damaged… only 28% heart function. In the years that followed, while I was away in CO and WA living my life, I heard the same thing from Dad every six months: “Saw my cardiologist this week, Deed. I’m still alive, and he’s still giving Mom all the credit!” Five years? He survived for 25 years. That’s why I have such ambivalence about those expiration dates that cardiologists, oncologists, and the like, give to their patients. I believe the prognosis is necessary in helping us understand how serious a situation is, yet there’s far more than the clinical to consider once that kind of news is revealed, and then, embraced. Yes, Ann… You, no doubt, played a significant role in your dad’s eventual recovery. You better believe it.
And yes, my parents were pretty special, if I may say. As individuals and as partners. In a nutshell, my mom was 100% Scandinavian (from Ames, Iowa!); Dad used to call her his “strong Viking woman”. Dad was an only child; his parents both passed from heart disease before he was 30. Mom was the disciplinarian, Dad was the softie. Mom was stoic with a dry sense of humor, Dad was goofy and silly and a real nut. Mom wasn’t the one who would listen to me bluster on about problems; she’d stop me and say, “If you don’t like the way something’s going, change it,” or, “If you don’t like the way someone’s treating you, tell them”. Kinda like she wanted me to cut to the chase. She was very much an “I am Woman, hear me roar” kind of broad. Dad would inquire on how this/that was going, and then he’d listen, share, and offer gentle encouragement and advice. Mom was pretty cool, and we had great fun together, especially after my family moved back here in ’02. Dad was definitely my go-to parent, though. They balanced each other in a really, really good way, which, as a parent myself, I now know helped them in their parenting, too. They weren’t perfect, but they sure did love me. My little piece of advice for the child-to-parent caregiver would be this: in the times when it is the ab-so-lute toughest to bear, what ever the reason(s), step outside the moment, physically/mentally, for just a moment and call to mind a moment from your life with them. Maybe it’s a memory of making them proud, or that Christmas morning when you were 7 and you got Mrs. Beasley, Skipper Barbie AND a puppy (who eventually chewed Skipper’s head off, but…) , or, a time or two when they could have easily given up on You, but didn’t. More simply put: find grace and gratitude, give Love. It may not always help, but it was indeed my way of getting through it.
Ann, if you’d like to share “The Girls from Ames”, I would graciously accept. And then I’ll pass it along when I’m finished. How sweet! Also sweet? Whitey’s Ice Cream. You are preaching to the choir! The first seven years of this girl’s life were spent in East Moline and Rock Island… Maid-Rite’s and Whitey’s. I’m 60 miles east of the QC and believe it or not, my grocery store carries Whitey’s! As for the American Idol concert on Thursday night… the kids may are all about Tim Urban (and yes, he IS cute). As for Rita and me? “ROAD TRIP!” **DeeDee
Hi DeeDee,
Oh man, I can’t believe how much we seem to have in common! What a hoot that your mom was originally from Ames :-) I’ve got the “Ames book” right here, ready to pass on to you…I hope you’ll enjoy it as much as I did.
I enjoyed learning more about your parents…sounds like they really balanced each other nicely :-) Actually, when my dad was in the hospital after his stroke, my 4 older sibs were all VERY helpful. It’s just that my oldest brother and sister are usually very stoic-don’t tend to display any sadness. So when they BOTH started crying in Dad’s hospital room, I just had to hug each of them. My brother is 6 ft. 4 in., so I remember saying to him, “It’s going to be OK, big guy”. Just typing that quote brings back tears to my eyes.
All of us (and some of our spouses) took turns the entire time my dad was hospitalized staying in his room-even overnight. There had been a very botched up attempt to unsuccessfully get an NG tube down to his stomach-it was horrible to witness-so at that point we agreed that Dad would always have a guardian angel by his side :-) Once my dad turned a corner and became lucid again, we all breathed a HUGE sigh of relief. It was actually wonderful to hear him ask for coffee-Ha!! Unfortunately, he obviously couldn’t have coffee right away, because the speech therapist had to help him regain his swallowing skills. Thanksgiving that year was especially touching, because it was literally the first time my dad was able to once again eat solid food. Oh the little things we take for granted…
Drive carefully, and we’ll see you Friday, DeeDee!!
~Ann
Ann, In preparing for this trip to Peoria I returned all my library books. Girls from Ames was one that I couldn’t get to… Glad to hear you enjoyed it and I’ll go get it again. I have my own” Ames Girls” from growing up. I just made my annual summer trip back east to visit to my four best friends from first grade. I think Dee Dee has her “Ames Girls” coming with her. How lucky for all of them to be together!
I hope we have name tags so we can find each other over the weekend.
Take care, Joyce
1:50 am. HONK! HOOONK!! Should be home by 3:30. We are on our way home from Des Moines, just drove through Coralville. Idol Concert was excellent, and the kids were in great voice. Tim Urban, way cuter in person! Casey? WOW! Crystal, excellent!! Peoria, tomorrow…er, later today. Told you I’d honk and wave :) **DeeDee
Dee Dee, I wanted to say thank you for reaching out and inviting me to meet you and your friends. I have “overdone” some work projects and I am exhausted and lost my voice. Some people think that is a good thing! Going to rest up so I can be in tip-top shape this weekend. I am attending all events also. I will be coming from LA.
BTW- Sounds like you raised a very understanding and kind son.
Wish him good luck in the football game.
More later on your late night post, Joyce
Let’s be real, here, Joyce. Logan is a teenage boy in 2010. Aaack! He has a good heart, though, and aside from general mischief, he’s given us no real problems. He certainly wasn’t a caregiver on the same level that I was, but he gave his own special love and care to Gramma & Gramps as their illnesses progressed. Not only did he make them laugh, but he paid attention. I “caught” him helping Dad get dressed a number of times, and after he couldn’t go up the stairs to the bathroom anymore, and before the new toilet was installed downstairs, he frequently emptied the bucket…without being asked. …. Wow, I haven’t thought of that in a while. Thank You for helping me to remember. He gets a MegaMommaHug tonight. — Safe travels from LA! **DeeDee
Hi DeeDee, firstly, glad to see there is a fellow nite owl besides me out there in DLH, LOL! I’ve read your story and was touched on so many levels by your words. May I just say to begin with that you are such an amazing and loving daughter and your parents obviously were wonderful wonderful people. I am so sorry that you lost them the way that you did with your dear mom to cancer and your sweet dad with heart disease so close together. My heart pours out to you for your loss but they were so lucky to have such a caring, loving and compassionate daughter to care for them and be with them. Your story of the guilt you went through made me remember a painful incident I went through with my dad as well a few years before he passed. My parents were visiting me at our first new home and my mom had Alzheimer’s but was in the earlier stages and could still fully care for herself and my dad did not have Alzheimer’s but he was very sickly from years of suffering with Chron’s disease and he was showing signs of senility. The family (me and my 2 brothers) had really been irritated with him that he would refuse to wear Depends – because he had a lot of accidents and I don’t mean of the incontinence type either! I had all ready had one experience with him where he had an accident when we went to Wal-Mart and he just went out to my car (which at the time was my new ML325 SUV with cloth seats) and just sat down in it in my car! Thankfully because I had a cat that was old and had urinary incontinence problems in the house, I knew what veterinary strength solution (a bleach enzyme) to buy to get the smell out because it sure didn’t work rushing it over to the car wash place that tried steaming it clean! But I didn’t blow up at him or anything that time, I just called my brother Don and vented to him, and then I just took care of it. My dad was in this strange state where he didn’t care or know any better I guess. But I had a baby at the time, a new house, with silly whitish carpet in it and the rule was shoes off in the house, as I was a new young mom and wanted to take all the precautions to keep the germs on the floor out of my precious baby’s mouth who would be crawling all over it for the next few years, you know, paranoid new mom syndrome! Well, he abided by it, but then he had another accident on another occasion, I guess he got nervous, and wanted to run upstairs to the bathroom in a hurry, messed all over the floor downstairs and stepped in it with his shoes, carrying it all the way up the white carpeted stairs and all over the bathroom and hall up there before I could catch him and stop him! Sorry this is so yucky to tell, but I was beside myself and what an awful horrible mess to have to clean up! I was so tired all ready of dealing with his messy bathrooms, etc. for years, this was just too much for a daughter to have to handle I thought! Luckily, I knew a carpet cleaner man who lived in my neighborhood and he agreed to come over first thing in the morning. Can you imagine how embarrassed I was having to explain what it was and what happened, etc! He used some special industrial strength powerful cleaning agent and took care of it for me, but I felt so bad. Well, that time I did get really angry at my father even though I knew he wasn’t in his right mind, or was he, you know? At the time I don’t think I knew what to think. That night he told my mom he wanted to go home the next day and fly out and I’m the type that gets over things really fast and I didn’t want them to leave. They usually came for 3 weeks and I didn’t know how much longer I was going to have my mentally stable real mom for so I always wanted them to stay as long as possible. I talked with him later that night, told him I loved him and all was well & they stayed. But you know, I’ll always remember how I got mad at him and he was just a tired, sickly old man who just wasn’t in his right mind anymore. At the end of the day, although the incidents are awful and I’m going through it again now (!!) with my mom who has Alzheimer’s and is living with me, you know that they just don’t know what they’re doing anymore and can’t help themselves and a floor can be cleaned, but how can you repair them and their emotional state I felt? They don’t want to be the way they’ve become. My parents were such a handsome couple right up until my mom was 65 and my dad was 72ish, everyone used to always comment on their good looks and how great they looked for their ages. Why can’t we all just grow old gracefully? Why does there have to be such hardship for so many good people? It’s one of the big mysteries in life…my poor parents, they totally lost their dignity in the end and they were always such a well groomed, good-looking, and well dressed couple prior to these devastating conditions that stole their health and their dignity from them.
One of the reasons I write about that experience is because although I have kept quiet on the subject this past month because I am on vacation and I am trying to enjoy myself and my break as I have my mom in respite all month, I am struggling with whether to try and place her in a nursing home full time or continue taking care of her. When I first moved her in with me over a year and a half ago, she was able to take care of her toileting to some degree without getting too messy. Things have changed now for the worse and she’s using her hands and fingers when she has a bowel movement all the time now and I am constantly cleaning that up and Ladies and Gentlemen I’m here to say, I just don’t know if I can do it anymore. So although I am trying to enjoy myself this month, I’m also in an emotional battle with myself on what to do with mom and currently have no idea which way I am leaning. When I get back from Peoria renewed and refreshed and happy, I’m hoping to have a new perspective on what to do.
DeeDee, I also wanted to tell you that you have a beautiful way with words and you have spoken so eloquently I think for all of us on how we feel about Jean, our angel, and by sending her your wishes from us in hopes that we can provide a blanket of comfort to her in return when she rests at night is so well said; so thank you.
Lastly, how fortunate you were to have spent all those years in Colorado and having experienced that magical place while Dan was there too and being able to enjoy his concerts there as well! Lucky gal! Although I never knew Dan resided there until just a year or two before he left us, I myself, have always been drawn to that beautiful state also and wanted to attend Boulder when I graduated high school, but my mom didn’t want me that far away from home at the time. We lived in Florida, so I went to Univ of FL instead and then transferred and graduated from FAU in Boca Raton eventually. But I have been back there many times since and still love it, love it even more, now that I know Dan and Jean called it home too for many years. And I too love Netherlands and was probably listening to it the same day as you while in my car that day; I never get tired of that gorgeous piece of ethereal music. Well, I never get tired of any of Dan’s gorgeous pieces of ethereal music! I love every song. But you having experienced first hand and having had the pleasure and fortune to have lived amongst such incredible and peaceful beauty would have an extra special appreciation for that song. Even Dan said in the Introspective Interview CD that he still got chills listening to it also. What a special special song….
I too will be in Peoria solo Friday eve so I’m hoping to meet up with the DLH ladies so we can all get to see one another and enjoy the wonderful evening Jean, Deb and Laurie have planned for everyone. There are going to be 450 people attending the party it sounds like, so we should get some kind of game plan to meet up with one another like you suggested DeeDee. Otherwise, we will all just be in a sea of happy faces! That’s OK too!
Smiles, Karen
Hi Karen. I read your post before I had to dash to town, and thought about it the entire time I was running my errands. I have much to do before Rita flies in, but I wanna throw this out there. I realize not everyone is an Oprah fan, but raise your hand if you saw the, “It’s just poop, people!” episode with Dr. Oz a few years back. Hands down, it changed the way I was able to approach the poop dilemna. Mom’s primary tumor was in her colon, so that was the first to go. I went through training on care of her stoma and the application of her ostomy bag. Afterwards, she said that she hoped she never really needed my help, so I said “It’s just poop, Mom”, and shared the Oprah/Oz moment. Moments later we were laughing. On the way home, I said, “Let’s give your stoma a name. She’s part of the family now, after all.” I could tell she thought it rather silly, yet as we were walking past her peach-colored roses on the way into the house, she said, “Rosie. We’ll call her Rosie”. Most of the time Rosie was well-behaved, but there were a few times when Rosie was a bad, bad girl. Actually, it was the appliance that was bad, but… As she became more ill that final month, I took care of Rosie. It can indeed be a gruesome task. Won’t try to talk you out of your frustration, and I will not say I understand what you described, but please know that I am pouring my empathy upon you. What I say again is, take that moment, find grace and gratitude, give Love. Mom was as helpless as a baby those final days, just as I was once a helpless baby. I was too young to remember, of course, but I heard a few tales over time. Lemme see… Yellowstone: I was nearly two and had some sort of virus that absolutely put a damper on Mom’s camping pleasures. 1960s, cloth diapers, dirt, and my own little “Old Faithful” going on. Brookfield Zoo: the folks thought it was the giraffe’s that stank so bad, but nooo.. it was me fingerpainting the inside canopy of my stroller. No choice, had to deal with my poop. Now, we as caregivers do often have choices, as you know for yourself right now. Mom and Rosie never pushed me to the extremes you describe, but for Me, and with absolutely no disrespect to any of the incredible people who provided care for Mom at home, it was kind of like my way of protecting her dignity. She quietly said, “thank you, Deed” one of the last times, and I said, “It’s just poop, Mom”. She winked. … It’s hard to say how I would cope if I were in your shoes, Karen. Rosie wasn’t around for long, and was only briefly in my direct care for a short time. I would never try to advise you or anyone else in these situations, facing these dilemnas. These are the choices that only You can make. My wish for you is that whichever decision you make, it doesn’t consume you. If it does, you can change your mind. Kinda like what my parents said to me when I was my 19-year old self, dropping the news that I wanted to move to Colorado: “No decision is final. If it doesn’t work out, you can always come Home.” … Time to get get busy now. I look forward to meeting you, Karen! As much as this will certainly be a celebration, I haven’t forgotten for a moment that Jean is still a grieving wife, missing that one piece that perhaps made her feel whole. Imagine how overwhelming all of this may be. For all that she has shared with his fans, for her commitments to The Living Legacy, and for the community she has created here, it is, truly, my greatest hope that she’ll be able to return home, to her quiet places, with a piece of Love, and a peace from Love… just for her, from all of us at DLH and beyond.
Putting Dan’s interview with Fred Migliore in the stereo. Btw, did you listen to Fred’s online interview with Jean? So cool that she did that.
See ya’s soon! **DeeDee
Hi DeeDee, love Oprah and I’m a big fan of Dr.Oz, didn’t see that particular show topic but think I may have heard or read about it. I’m signed up by
e-mail so her show is always sending me daily updates on what’s on the following day.
Thanks for sharing the story about your mom and “Rosie” too. She was a very special lady I can tell; and rest assurred she is your guardian angel looking down on you from above now. You both sound like you were kindred spirits. Ane believe me, I too, constantly remind myself of all the wonderful things my mother did for me all my life every day actually, so that all makes it even more difficult to decide on what course of action next: for her to stay with us or be placed in a facility.
When it comes to taking care of my mom all I can do is take it day by day when I care for her and we have our easy days and our more difficult days. But before I took her to respite at the beginning of August, it was a more trying time for me leading up to taking her and it’s been having its lingering effects ever since. I actually became very distraught at the time about the situation. My friends and even Hospice keep trying to convince me it’s OK to place her and that it’s probably the best thing for everyone but I just don’t know yet…We have a downstairs daylight finished basement and it’s her apartment basically. It used to be my husband, son and our dogs play area but they don’t go down there anymore. I have to keep it locked or else she will walk out the front door and be gone. It’s very nice and a much larger private area than she would have in a nursing home of course. Her piano and big tv are down there, leather couches, a pool table, breakfast table, private bedroom and separate bath. In other words, my husband is a saint, this was his former man cave, the basement all men always want and he gave it up willingly and doesn’t even complain. I just run up and down the stairs all day and night in and out of there and feel bad when she wants to come upstairs and I can’t let her (because she will reak havoc and then try and escape). But we take her for rides periodically. She can’t talk anymore and she only likes to play her piano (she can’t read the music anymore) and she occasionally turns the tv on and sits and watches it, but most of the time she just likes to lie down in her bed with the covers over her head. I spoke with the Hospice nurse today and she informed me that she was still doing fine, her rash was all cleared up and she sat good for her for her vitals and then per usual escorted her out of the room, the later part we both chuckled about because that is what she does. I told Cindy, the nurse, oh good, that means she’s doing just fine and is still her same old self because she does the same thing to me and we both laughed! The nurses always get a kick out of her whereever she’s at because she is so cute and funny to them. She has to have her sheets just right and her napkin on her lap when she eats and things just so, we always find her so endearing that way. Now that we’re back in town I asked my husband what he thinks we should do tonight and told him to think about it and we would talk more tomorrow about it. He’s been experiencing anxiety again and he doesn’t fully understand why he can’t control it better. After 19 years with his former company they closed their office here and he went on one job interview with a great company for a technical management position and they offered him the job; but his former boss wanted him to join him with the company he was going with and as soon as they caught wind that he was being hired elsewhere they expedited things by immediately flying him up to Canada, interviewed him and offerred him the job on the spot and it was even a better offer than the other one that we were also ecstatic about. So all is well, but he is now gun shy from what happened to his first company and is worried things may take a similar path again with the new one. He knows it’s a somewhat unreasonable fear, but he told me tonight he can’t help it. He’s such a solid guy and I hate seeing him get worried like this b/c I’ll notice him taking his blood pressure more often and it worries me. I can’t go back to work if I’m taking care of mom obviously and I start to worry I should and maybe that would help alleviate some of the stress on his shoulders. So there’s all these factors besides the toileting issues which are not good at all that are contributing to my indecision. My mom doesn’t like to be showered so I do have to struggle with her but she doesn’t put up a big fight to get her cleaned up. She’ll just be doing things like constantly turning the shower off while I’m trying to shower her off the whole time. There have been many awful episodes for me and I am definitely not going to go into detail, but I did start to get better about dealing with “it” as in more routine, but what choice did I have? But sometimes, I’ll find a more challenging mess to clean up than normal and it becomes very draining on me and I find myself saying I just can’t do this anymore. So, I’m back in a state of flux, a big quandry on what to do as in what is best for mom and what is best for me and my family and I just don’t wish this predicament on anyone. I’m absolutely torn on what to do right now and I have her picture with my son when he was a baby sitting on my kitchen counter with her smiling dimples looking at me everyday and I want to do right by her. She’ll always be my mom no matter what.
Touching on Jean, her intelligence, warmth and indominable spirit are going to see her through this journey of life she is on. She inspires all of to be brave and carry on. When she does share a layer of grief like when she mentioned Dan’s clothes in the closet she recently put in boxes, I will literally feel my breathing stop for a moment because it is so heart wrenching. I’m glad she is willing to open up and share some of that with us and I think she realizes letting it out helps. I’d like to think we are helping to absorb some of her pain too and helping to alleviate it somehow for her. My husband keeps his emotions well sealed and I know it’s not good to keep things bottled up inside all the time. When my beautiful brother Don passed away I asked his sweet wife Darlene if I could take a shirt of his and she said sure take whatever you like, although it would be too hard on me to wear it these days, I still have it tucked in my drawer and it gives me peace knowing it’s there. I still have his shoes too that I wrapped up and stored in my closet that he left by accident at my house as well. I guess, I’m still not ready to let go of those things.
Yes, I did listen to her interview! It came out right after the holidays and it was like the best Christmas gift of the season for me. After my guys went to bed, ahhh, quiet time to myself, we love that right DeeDee! I dimmed the lights, put on my glow candles and laid on the couch listening to her, it was a real treat. Doesn’t she have a lovely voice. She sounded exactly like I imagined she would when I heard her. Did you know Fred Migliore is going to be there too? Yes, very cool beans, right! Hope we can meet DeeDee and your fellow Dan fan gal pals. That is super to have friends with great minds who think alike! Have a safe trip en route. Hope to see you all in Peoria.
Karen
Karen, I will be there solo and will look for you on Friday. I had to make decisions about my mother’s care that were very difficult. Please feel free to talk with me about your post.
I am glad that you have some time for yourself to catch your breath and get perspective.
You have such compassion for your parents and their struggles, and have taken on a huge responsibility. I really admire you for that.
I am being brief tonight and hope to be more thoughtful when I hopefully meet you.
Take care, Joyce
Hi Joyce, thank you for your kind words and yes, I would love to talk with you more in Peoria. Perhaps, we should all try and gather in the lounge area (if there is one?) 1/2 hour beforehand or something like that, so we can meet one another.
I also plan on tucking my mom’s photo in my purse with me too. I’d like to see photos of others loved ones as well.
I love this comment Dan made in one of his interviews referring to his loyal fans: “…people that will come to me are the people that are meant to come to me…” Isn’t that neat what he said, boy, the feeling is going to resonate this coming weekend in Peoria. He’ll be shining down on All…”magic every moment…”
Karen
Karen, Look forward to seeing you and your mom in Peoria tomorrow! Great idea on the meeting plan. We can all be looking for each other.
Thx for the Dan quote. It only confirms my desire to be with all the fans this weekend.
Joyce
Hey Karen & Joyce…obviously, I envy you, BUT, if you know what hotel you are both going to be staying at (if it’s the same one) why don’t you see if you can leave a note at the front desk for the other one?
In one of my past incarnations in life (right after high school), I was a desk clerk & people were ALWAYS leaving notes at the front desk for people they were meeting (especially at conventions)! If you tell them you are with the Dan rooms & give your name & last initial, that PROBABLY would be good enough to do it!
Have fun & I’ll be thinking of you!
Denise H
Hi Denise, thanks, good ideas and BTW, I’ve noticed they showed JB Live in Concert “Save the Gulf” on tv a few times in last week or so. The replay was just finishing up this morning on CMT tv I noticed. Check the listings, maybe they’ll replay a few more times on different channels. If you happen to come across it let me know, I’d love to watch it too!
Karen
Hi Karen. Yes, I’ve probably caught most of it in a couple of different sittings. The night that it was live I caught the second half & I’ve caught most of the first half since. Eventually I’ll see it all at once!
You guys have fun this weekend & wear your sunglasses & sunscreen & something cool! We’ve had a brief taste of fall here (I live 300 miles east of Peoria) but summer is coming back in full force! It looks like Dan is making sure that the sun shines on his family, fans & school mates!
We expect a FULL report when you are home & rested from the partying!
Have fun & be safe!
Love ya all,
Denise H aka “Neecie”
Thank you, Joyce, for your kind words of encouragement. Saying “no” or “enough” or “do it yourself” (for me) is never easy, no matter the situation. We just have to do the best we can and try not to beat ourselves up too much, right? When I realized the other night that I still have some guilt over my newspaper rant on Dad, it hit me that, three years later, I still haven’t forgiven myself. I’m officially working on that. — Like you, I feel lucky to be going to Peoria in a few days. Even luckier now, knowing that I’ll have a chance to meet the beautiful souls from DLH. I also found out a couple nights ago that one of the musicians (Eric Mills) who will be performing was a year behind me in school, and sat behind me in band. It all just keeps getting better. The celebration to honor Dan will be bittersweet, but I wouldn’t miss it. My son, Logan, isn’t even hassling me over missing his first football game Friday night. Whatta great kid, eh? — See you there! **DeeDee
A “friend” of my father’s came to my father’s memorial party (my father passed in 1991 from Congestive Heart Failure). My father played guitar and had bought a guitar from this guy for $150 to help him out financially and the guy came and lied and said my father had borrowed the guitar. I told the guy my father, who grew up in the Great Depression, never borrowed anything from anyone. This comment is in reference to the issue of wills addressed by other people. All I can say is that “where there’s a will there’s a lot of damn relatives” at times. My point is that the last thing that should have to happen at someone’s time of demise is to have to fight over material things and for someone to outright lie about things to get what they want should never happen at a funeral.
When attending a funeral one should give; offer; console. Making a request of any kind is completely inappropriate and insensitive. ~ Jean
Dear Jean,
This may seem unrelated to caregiving, but if you will be patient I will explain. My father was a professional guitar player back in the 30′s and 40′s. He’d be 96 if he were still alive. He stopped playing guitar professionally after his partner who he had a radio show with was killed in a car accident. My father joined the Army toward the end of WWII and learned to drive a truck but continued to play out. He said to me one time Raymond, if you are gonna sing, sing loud. Most people come to be entertained but some come to hear the music.” He won a guitar in a poker game once and I really wanted to send that guitar to your husband with a note that said “This is a gift from a gambler.” Your husband was a caregiver in his own way and provided millions with the inspirtion to go on, “ever on”. Thanks to Dan ande you for all you have done and continue to do.
I am a nurse practicing in Montana. I have workedin health care for 23 years. Currently I work with a gentleman who has Muscular Dystrophy and is ventilator dependent. Prior to becoming a nurse I worked in Developmental Disabilities. I feel that if I could not spend my life helping others there would be no purpose. I just wanted to say that Dan is missed. His music inspires me every day.
Dear Ray,
You are real hero to me. Your life’s calling as a nurse, caring for others, is so inspiring to me, it is not an easy job. Your life Sir, is so very well spent. My wonderful nephew is developmentally disabled, we both thank you!
Thank you Char. I worked in group homes and in an ICF-MR as a QMRP writing programs for people with mental retardation and developmental disabilities as well as a behavior therapist and people with disabilities have taught me more kindness and generosity and show me more love than I can tell you. Hugs to you and your nephew.
And I just want to say to Jean thank you for creating this site. I am so happy to have discovered it. It is absolutely wonderful.
Ray, if I live that long, I hope there will be people like you to help me through my last elderly years. ~ Jean
Hi Ray, I’m a nurse, too, though right now I’m staying at home with my 2 school-age daughters. I know exactly what you mean about feeling that life has purpose when you are helping others. I am definitely at my best when I’m providing some kind of care to others-physically, emotionally, etc. Bless you for the 23 years you have spent providing care to others who have very much needed your assistance :-)
Take care,
Ann
Thanks Ann and thank you for being a nurse. I found this “male nurse action figure” recently and under the title on the package was the statement “Physicians prescribe, Nurses provide”. I liked it a lot. I was going to be a physician at one time and don’t at all regret the decision to become a nurse. It is a different perspective. I’m not saying the diagnosis and treatment aren’t essential, but caring (along with providing the ordered treatment) makes a big difference, sometimes more than the treatment. Thanks again.
A poem for Ben from Larry
The Caretaker BJM
Lined tree road a middle buster plow
Preacher man’s lament sweat the brow
Hunter gather and on Sunday’s too
For on a Sunday dawned tie and suit
Ninety plus way’s he showed what is
A man of oak bark that level’s the field
Planting the seed after turning ground
Lessons for living and giving profound
Abundance for spirit planted the same
Trapped inside your sun and rain
For BJM time stamped LKD.
Mr.Ben J. Mikulek, 93 years young. For 60 years he served the world as a Preacher. Travel’s took him to Russia,India,China and many more places where he helped build Church’s for people. Ben spoke three language’s and at 93 still remembered! My name is Larry and I had the privlidge of being Ben’s caretaker.For the most part…. He was mine!! Thank you!
Dear Jean,
I am a uterine cancer survivor. It was a blessing that my doctor caught it very early. It makes me think of your Dan and his advice to people to go for regular check-ups. I was so sorry when this world lost him, but his music will continue to inspire people for generations to come. You were a wonderful wife to him. Thank you for this website and for all the great work you do. You provide support and give so many people hope. Dan would be so proud of you!
Jean
Good morning, Jean. Recently I have been listening, in the early morning, to Dan’s song, “Don’t Lose Heart,” which I had forgotten over the years is so beautiful. It is incredibly healing and insightful, as his songs are, at so many levels.
Though I was never blessed with the opportunity to care for them as they aged, both my parents left this Earthly life years ago in traumatic ways. I recall very clearly the pain I felt. More recently, family and friends have been undergoing chemotherapy and radiation treatments for cancer. The process of grieving, as you well know, involves many of the same stages–no matter how loss comes about. Healing takes time.
Your website is beautifully produced and reflects, very clearly, your sincere and heartfelt concern for fellow beings and, as well, your personal and in-depth knowledge of the grieving process. Thank you for your love and commitment to others in all that you have done and continue to do in Dan’s honor. You are a blessing.
It would be an unexpected blessing to me and my husband to meet you, if it happens to work out that way, at the August memorial dedication and ceremonies in Peoria. We look forward to participating and seeing you there. Take care. Many blessings to you. Namaste. Suzanne
I cared for my post-transplant husband for two years through rejection episodes, twice-weekly 5-hour round trips to the transplant hospital per week, ongoing dialysis when the transplant failed, followed by iliestomy care and basic general care-taking. It was a rough couple years, but I would do it all again.
I just read this, and it nearly blew me away….
“You define family caregivers by their emotions and their spirit, by the sadness in their eyes, but also by the determination in their hearts. Caregivers are very special people.”
Suzanne Mintz
President and Co-founder of the National Family Caregivers Association
My husband & I have cared for my disabled brother for nearly 16 years. This is both a blessing & challenge. But we wouldn’t trade one day with my brother rather than being without him.
Don’t Lose Heart,
Fay
Hi Fay, great to have you here. My nephew is special needs/disabled, yes the challenge is there, but he is so much of a blessing. I believe that your brother, my nephew and other individuals with similar conditions, make us stand up and become stronger. My only wish is that someday, everyone will understand that we are all alike, we all need know we are loved, and in some cases cared for. I hope this note finds you well and I look forward to “hearing” from you again, and of course DLH.
~Char
Hello Fay. Thanks for touching base with us!! It really sounds as though you and your husband have big hearts :-) Glad you have experienced the gratification of caring for your brother over an extended length of time. Please let us know if you ever need a boost and/or just need to vent :-) Keep in touch and know you have many people here who care about you and your family!
Much love,
Ann
Jean – I just got your message on Facebook, and I wanted to let you know I’m doing great! I had surgery on March 26 for Stage I uterine cancer, and with everything being removed (total hysterectomy), I am cancer-free.
I’m so glad we’re FB friends; someday I hope to meet you for tea and tell you of my experience and hear about your continuing journey since Dan was taken from this world. And it’s not really so much about cancer, as it is how I discovered that I’m a lot stronger than I thought I was. I have a feeling you’ve discovered that as well.
Much love…Mona Lee
Hey, Mona Lee – thanks for letting us know – we were discussing you a few days ago. I’m so glad to “hear” you sounding so well, and that you’re cancer-free! Yes, I love that quote from Eleanor Roosevelt: “A woman is like a tea bag – you never know strong she is until she gets into hot water.” ~ Jean
This website was given to me by the Northeast Relay for Life admin, who says he met you, Jean, at the Ellsworth (that’s Maine) Relay for Life where you raised almost $10,000 by yourself. That’s awesome! I didn’t realize Dan had passed away until he told me. I loved Dan’s music. I took care of my mother for several years until she died 5 years ago. We also lost my brother to colon cancer 5 years ago, and I am now caring for my sister, who lives with us, she having been diagnosed with ovarian cancer 5 years ago. It’s wonderful to have a place to go to have someone to commiserate with. My poor husband is a saint, but I’m sure he gets tired of listening to me. I’m sure I’ll be back here often.
Hi Kay, wow – you’ve had a lot of caregiving to do in your family. We’re always glad to lend a shoulder, commiserate, and offer unsolicited advice. Come back soon. ~ Jean
So many things touched me, You have touched me, I always wonder about Dan’s wife, telling myself “she must be someone special” to be with such an insightful guy. I know how hard it is to get people to listen. Until it hits them on a personal level. I have a daughter with Autism, Help is sometimes very hard. I have my family and my church to support me. I can only wonder if there would be no one around who would take care of her. It is good there are place’s to go too. Take Care God Bless
Hi Dee, If I may comment, I too wondered about Dan’s wife, and the word “special”, really describes Jean. She is the most giving person, her talents are endless, and this site is a God send for all that visit. How wonderful it is for you to have a team behind you that helps and supports you and your daughter. Having a nephew with special needs, i am fully aware of the hard journey ,but family and friends can help ease the stress from time to time. Rest assured, Jean has thought of everything here at DLH, as there will always be someone here for you to “lean” on, as my friend, Richard, would say. Hope to hear from you again, and until such time, please stay well.
~Char
Dee, as you may have gleaned from other comments and stories here, many people don’t have the help of their families. In fact, sometimes families can add to the stress of being a caregiver. I’m glad you have your family and your church for a support system. Take good care of yourself. ~ Jean
Hi Dee,
I was wondering if you have ever seen the movie “Temple Gardin”, a true story about a woman with Autism who is now a professor at a university in Colorado. I have worked professionally with people with Autism, most recently with a 7 year old boy. They have some really interesting things to teach us as “normal people”.
That is “Temple Grandin”, not “Gardin”
I was moved by your blog and the many notes written here. Caregivers are truly examples of love in action. I’m a hospice nurse and have seen some really wonderful caregivers. I would strongly suggest this: please contact a hospice in your area if your loved one has a terminal illness. Hospice is paid for by medicare, medicaid and most private insurance companies. If you have none of these funding sources, it doesn’t matter. Just about any hospice nurse will tell you that it doesn’t matter-everyone deserves to have hospice. They are another source of help and support, for both the patient and the caregiver/family. Since our society has gotten away from extended families living together, hospice can help!
Jean this is a wonderful site and truly a gift to others! God Bless. Dan’s music was truly wonderful in a way that touched my soul.
Thank you Deb, hospice is wonderful, caring, and very supportive … you can not ask for more. The patient is treated with dignity and true caring, caregivers can rest at little easier just knowing, that their loved one is being cared for by such a wonderful team.
~Char
Thank you Debbie, for encouraging our caregivers to contact Hospice. I’m glad you like the site, I hope you’ll come back often – as a hospice nurse you have a valuable perspective. ~ Jean
Dear Jean,
I know death well…when friends were going off to college in the mid 70′s I started my personal experience PhD in death and dying. Thank you for your efforts in sharing yourself, your love, your compassion and your courage to let others connect through this website. A contagious force of Life is spreading because of it!
I have been traveling the last couple of years and was not aware that Dan had been ill or passed on. I feel moved on many levels with this news and have spent the last hour just pulling up youtube videos of his music. It is only dawning on me now in this moment (I’m 54) that Dan’s music (Souvenirs was my favorite) was a way for me to touch “Home” in ways not otherwise available during my teen years. An unconscious Saving Grace for me.
What a LIght he was and is.
Blessings on you and yours as you journey onward with a different connection to him…carrying that heartfelt love into this world which desperately needs it.
In deep appreciation,
Susan Grace
Susan,
How beautifully written….I could really feel your emotion(s). Like you, I was not aware that Dan had been ill, and did not find out that he had died until Jan. ’08. The news was not something I was prepared for, and my heart just sunk when I learned Dan had passed. The up side is that is that I really better appreciate Dan’s talents and works more so than ever. Best wishes as you, too, journey ever on :-)
Ann
Dear Susan and Ann,
Even thou I knew Dan was ill, just the same his untimely passing hit me hard too. I remember it was announced on TV at 3:00 am and I cried when I heard the news. My music died that day, he was/is a tremendous talent, that passed on to us the beauty in life through his music. Jean has created this space where we all can come together in our caregiving and also I think, share our love of Dan. That love has brought us together in a common goal to help each other by sharing our experiences with difficult situations and lots of fun stuff too. Hope to “read” you both again, stay well and DLH.
~Char
Thank you, Susan. Death and Dying – the mandatory course none of us wants to take. ~ Jean
Not only have I been the caregiver for my husband the last 14 years…but for the last month I have been a caregiver for our beautiful dog Daulton… she was ill since early April with our finally finding out she had pancreatic cancer…
it is amazing how pets also become such a part of our families…
Daulton is in heaven now and the loss still hurts but she knew how much we loved her and how much she will be missed.
Mary… you know my heart is with you.
WE WILL SING DAN songs soon, thinking of all of you
~Char
Char you are the BEST!!!!
Mary, Hi! You must be one strong woman to take care of both your husband and a terminally ill dog. Be assured your precious Daulton is at peace and no longer in pain. Our family doesn’t have pets, but I can empathize w/your loss. My sister and her husband chose not to have a family (kids, that is), so their basset hounds have become their children. In fact, those hounds are treated way better than any children I know!!! Over the past 20-25 years, it’s been terribly hard on my sister and brother-in-law to have 3 dogs put to sleep….some of the few times I’ve heard my sister sob. My thoughts are w/you, and I will say a special prayer for your family (including Daulton). Please keep in touch :-)
~Ann
Thank you Ann….
our animals become such a part of our lives….it is hard to let them go….I too sobbed when we said goodbye.
Hug your sister for me..and her dogs!
I’m so sorry to hear of the loss of your Daulton, Mary. Only pet lovers understand the unique place our pets occupy in our lives: that sweet combination of child and steadfast friend. You can take comfort in knowing that she had a wonderful life thanks to you. ~ Jean
Thank you Jean….
Daulton was a special part of our lives for 10 years…she was a little Shih-Tzu and had the most amazing “personality” I have ever encountered in a dog.
People always called her the little girl with the big boy name…( she was named before we knew if we were getting a male or a female)
My husband, two sons and myself feel blessed to have had her in our lives….we hope she understood just how precious she was to us.
Thank you Jean for creating this site. It will be a healing source to many. I was a primary caregiver for my mom for three years before she passed. She had Alzheimers, needed a wheelchair, and required assistance in all areas of her personal care. I am also a singer-songwriter-actor and the soul-carving experiences as a caregiver opened my heart to new understandings and expressions. I know that you know this all too well from your journey. No doubt you will continue to be blessed with all your endeavors to make this world a more loving world to live in. Please don’t hesitate to contact me. Love & Blessings Always, Chris
Jean,
I just discovered this website and wanted to personally thank you for all of the resources you have brought to bear here. My siblings and I have dealt with caring of our parents and though our mother passed away four years ago from a quick battle with leukemia, my father offers a longer challenge for us with Alzheimer’s.
I am sure I will frequent this site for inspiration from all the brave souls who have found their way here.
Thank you, Robert. I enjoy our group of compassionate, fun, brave souls and I’m glad you’ll be back among us. ~ Jean
Robert, Welcome to this special place of support and healing. Glad to have you on board. As you already know Alzheimer’s is a “take it one day at a time” venture. Always know that there are many of us out here when you need to “lean”. In closing, be strong as you are never alone! Richard
Dear Jean
What a great site! What a blessing! Dan just popped into my head and I searched him and found this site. I am being trained to be a caregiver in our church and the last four weeks have been very intense. Lots of looking inward and many doubts about can I do this? We have several men in our program (Stephen Ministers) and the men who have been in the program say it has been the most rewarding thing they have ever done. If it’s ok I would like to share this site with group. We are looking for real life experiences to help us prepare for our first care receivers.
God works through all of us if we let him. I am learning to listen to my heart and his word.
Earl
Dear Earl, thanks for writing, I’m glad you found us. Yes, please, share the site with whomever it might be beneficial for – that’s what it’s here for. Kudos to you and your group, for entering the caregiver arena by choice. ~ Jean
Dearest Jean…thank you first of all for taking such good care of Dan…a man who I loved from the age of 15…his music is always playing at my home.
My husband has been ill for 15 years and recently had a heart attack this past January. Dealing with this has been both a pain and my pleasure in taking care of him…sometimes it is hard and I thank you for this site…nice to know I am not the only one who gets angry at times over the situation and who also does all she can to make things easier for him.
I love your site and will definitely be a constant follower and supporter.
Hello Mary,
Glad to have you aboard! You are 100% right, you are not the only one that gets angry, at times. You will never be alone here, in your frustration, or victories. This site is a comfort for all that carry burdens, and don’t we ALL, at one time or another. :)
~Char
thanks Char….I plan to post more when I have time….
Dear Mary,
Always know that there are many good people out “here” who you can lean on during times of challenge and when the load is heavy. Secondly, do keep in mind that “the best is yet to come” for earthly angels will definitely have their time to drink from the silver cup. In closing, be strong and LEAN when you need to for “WE” are here for you!
Richard…
thank you…. I will definitely “lean”…this website and all of you are wonderful!!!
Dear Mary, anyone who can care for her husband for 15 years and a heart attack, and then say “sometimes it is hard”, is made of really good stuff. Glad to have you with us. ~ Jean
Thanks Jean…I try…it is not easy at times…especially when the patient does not want to help himself!
I try to be strong for him and especially for our two sons ages 20 and 24…we tried to provide a normal as possible childhood for them and looking at their success now; I think that goal has been achieved.
Again I thank you for this site and I will definitely use it when I need support!
What a great memorial to a truly great songwriter and performer. My wife and I moved from our home in Texas to Southwestern Ohio where I’m from to care for my parents, both of whom have Alzheimer’s. My father is now in a full-time care facility while we continue to care for my mother, the farm, and livestock on their 23 acre farm. Our son has also joined us and is such a blessing to us and he does a lot of what I can’t do since I still have to have a full-time job. Without the support of our church family and a few members of our family, we couldn’t do what we’re doing. We have a guardianship hearing on 4/30/10 for me to become the legal guardian for both parents (I have a power-of-attorney for both now) and one of Dad’s older kids supposedly has “issues” with that, despite the fact that we moved here to do this because none of the others would take it on. I have not misused any funds or done anything else improper so we’re trusting God to enable us to continue to do what we’ve started. We’d appreciate your support and prayers as well.
Hello Dennis,
Your story is very inspirational. My thoughts and prayers are with you and your family. It sounds to me like you have a great support team, which is so very important.
By coming to this site, you have found a beautiful venue, where you will never be without “help” and encouragement.
~Char
Hi Dennis, welcome “home” from a fellow Buckeye (west central Ohio; Woo Hoo, Go Ohio State!). There are a lot of good people on this website who are more than willing to let you lean on their shoulders, & Dan’s Jean is a sweetheart (Dan picked wisely). As Char has mentioned before, there is usually SOMEBODY here at any hour. It’s not all seriousness either, it also is fun (especially when we relapse back to our early teenage days).
So jump on in, I know that there are people here who can relate to your situation. Good Luck!
Denise H.
Hi Dennis, how wonderful that you and your wife and son are carrying on the caregiver legacy in such a wonderful, traditional manner. As I wrote to Susan on the Wills & Trusts page, it really doesn’t matter how open and clear-cut the POA, will, or trust is, there’s still a chance someone in the family is going to take issue with the way things are set up. I have a friend whose half-brother was left completely out of a family will. In an act of charity and love, she gave him half of her inheritance. And do you know, that act of kindness caused a permanent family rift? Crazy. ~ Jean
“If you ever start feeling like you have the goofiest, craziest, most dysfunctional family in the world, all you have to do is go to a state fair. Because five minutes at the fair, you’ll be going, ‘You know, we’re alright. We are dang near royalty.’”
- Jeff Foxworthy
Jean, Your post about “someone taking issue” with how the will or trust can be set up, was a reality for me and others I know. I don’t know if I have ever been as shocked in my life as when someone contested my father’s will. and was not even a family member or a close family friend! Any guidance and support your Wills & Trust page could provide could be so beneficial. It is so hard to fathom that when you are at your most vulnerable, that others can turn your life upside down.
Thanks for the quote, got a good laugh from that one!
Joyce
Dennis, Thank you for sharing your story. I am sorry that you have to go through all of this. How fortunate to have your wife and son with you.
I know from my experience that getting power of attorney seems to ruffle feathers. But you, and your wife, and son are there giving all the support and keeping the farm running.
You have enough on your plate to have to worry about people thinking you are “misusing” funds.
Hang in there and keep doing what you know and believe is right. My thoughts are with you.
joyce
My cousin is going into hospice care today. She will leave behind a 13 year old daughter. She is only 55 years old. She is ready to go but we are not ready for her to go. She has AIDS and has been very ill and blind for years. She got it from her boyfriend (he did not tell her he was HIV positive and left her the minute he found out she was sick). I have been losing a lot of family members the past few years. Most of them relatively young. It makes me very sad and weary.
Amanda, I am so sorry for you, and of course your cousin and her daughter. Although the word Hospice can be very frightening at first, it really is where she needs to be, and you I am sure know is. It is truly a wonderful place, if you need to talk to someone, the professionals at Hospice are always there to listen.
I will pray that she will not suffer any longer, and that you and your family come to terms with this. It takes time, and what you are feeling is natural. Please know we are all here for you, any time of the day and probably most of the nite.
My thoughts are with you today.
Char
Thanks Char, I think the worst part of this is that we were led to believe she had something else and only found out it was actually AIDS yesterday. We were told by my aunt that she got some kind of a mold related illness and that is why she went blind (she painted houses) I think it is sad that my aunt was ashamed to tell us what was really wrong with her and kept it a secret this long. I hope she was not made to feel she should feel shame on top of being so ill. My aunt is in total denial and says the doctors say it is aids but she does not believe it and is still sticking to the mold story. So sad.
Oh Amanda, I feel for you and your aunt. Her denial of whatever the diagnosis, at this point, is her way of dealing with the situation and the bottom line is ,she is losing her child. You are a wonderful caring person, and in the end, you will all be there for her, and peace will come at last.
Know that you are not alone here.
Char
Dear Amanda, most of us can remember a time when we found out someone we trusted had betrayed us. To have to deal with that betrayal in the form of a disease like AIDS, and then on top of that, to be deserted, oh, my gosh, it’s hard to even imagine the hurt, fear, and anger your cousin must have had to live with. How many of us can say “There, but for the grace of God, go I.”?
I’m sure you’ve told her that it wasn’t her fault; that she isn’t being punished; she simply made the mistake of loving a man who wasn’t worthy of her love and trust. Your Aunt is from a different generation – coming to grips with the idea that her daughter is dying of AIDS may be impossible for her to wrap her mind around. Thank goodness her 13 year-old daughter’s generation grew up hearing about AIDS, so she has a better understanding of it, with less social stigma attached. I’m so sorry for the pain you’re all experiencing – may we know your cousin’s first name so we can think of her and send loving thoughts her way? ~ Jean
Jean her name is Patricia Austin. We all called her Patty. She only has a few days left. I feel so horrid for what she has been going through and I don’t mean the illness only. She always had a stressful life. She was a Daddy’s girl and her father dropped dead of a heart attack in the middle of a heated argument with my aunt. Patty was really young when this happened, I would say about 10 years old. I like to think that soon she will be in her fathers arms again. I don’t mean to to say things I shouldn’t and expose such sadness and drama but I am very upset with the sadness on top of sadness in this case. And I am also very broken over losing yet another family member. Last year my uncle lost both of his only children, one to a drug overdose and the other to a brain aneurysm. They were both in their early 50′s. Now my uncle and aunt are like ghosts. These two cousins were on my fathers side of the family. Patty is on my mothers side of the family. Sorry I am rattling. It is time to be strong.
Meant to add that she is in a hospital in New Orleans and I am way up in Washington State unable to see her and tell her I love her but my mother and sister (my entire family lives in Louisiana ) have gone to be with her and they will give her my message. They are both as shocked as I am about what really has happened to her. I do not know if she is in a coma or if she will be able to hear them.
She’ll hear them. It’s amazing what people can hear and understand just before they pass over. Ask them to leave their tears at the door and speak to Patty with calm, loving voices about the beauty and peace that waits for her on the other side.
When my 93-year-old grandmother passed away from cancer in December of 2006, I had come to visit her after my night shift at work. I had not been feeling well, but I had the intuitive thought that I needed to visit her that morning. She had been going downhill rapidly and we all knew the end was coming. I was the only visitor there since it was still so early, and I sat in front of her bed, not sure what to do since she was “out” from the morphine.
I unfortunately had a rocky relationship with my grandmother; I blamed her for a lot of things my dad went through in his childhood. My feelings about her imminent passing were mixed, though I knew she had been in pain all week and I felt awful about that. I knew I needed to patch things up somehow with her, to ask her forgiveness for my bitter attitude and for not having visited her as often as I should have.
I figured, though, that since Grandma was unconscious, she would not hear me, so I continued to sit there. A few minutes later, a sweet young woman entered the room. She said she was a “preceptor.” I had never heard of that before, so she explained that she visited people who were dying to ensure they were comfortable and to let them know they could “leave.” She asked my permission to do this. I knew Grandma’s time was short, so I gave permission. She spoke to my Grandma, calling her by her first name, Anna. She told my Grandma that it was okay to leave, that she had lived a good life and could go when she wanted to.
I asked the preceptor, “Can she hear you?” The preceptor answered, “yes, she can. Hearing is about the last sense to go.” After the preceptor left the room, a nurse came in and explained to me that Grandma did not have long and that I should call other family members to come. I made the call, and then I went to my Grandma’s bedside. I told her that I was sorry for being bitter toward her, for not visiting her more often, and for blaming her for things when she was probably doing the best she could at the time. We all fail; I told her I was sorry for not realizing that. I told her all her family and friends would be waiting for her and that she could go and that Jesus would welcome her into His arms. I myself am not a Christian, but I knew she would understand about Jesus. Then I sang her a little lullaby I heard many years before, called “Lullaby in Jesus’ Name” by Honeytree (aka Nancy Henigbaum). It is just a tender little song with lots of love in it.
The nurse came in again when I was done and since my family had not arrived yet, she and I stood on each side of Grandma’s bed, each holding one of Grandma’s hands. A few minutes later, attended by the two of us, Grandma took her last breath. I was amazed when she passed away because her face, which had been so pinched and tense in pain (even with the Morphine), suddenly looked as young as a girl’s face. All the pain was gone, all the tension was gone, and her skin was smooth like porcelain.
My parents arrived a few minutes after Grandma passed away, and my dad was really upset with me because I had not gotten along with Grandma for a long time. The preceptor happened to come by at that moment to greet my parents and, without knowing how upset Dad was with me at the time, explained to him how I had been there with love and reconciliation at Grandma’s last moment. In his anger, Dad could not really take this in. But the preceptor looked at me and she knew what had transpired between Grandma and me.
I am not a hero in this story by any means, but it is very meaningful to me that I could attend my Grandma in her passing, that she did not die without any loved ones there. It is meaningful that I had a chance to explain my past attitudes to her and ask her forgiveness. It is meaningful to me that I was able to tell her there was love waiting for her on the other side. It is meaningful to me that, just a few minutes before my Grandma’s passing, someone actually told me to go ahead and speak to her, that she would hear me. And to this day, I am so happy I did. In my heart, I do believe that Grandma was hanging on for something like that, for a connection with family, for a message of love. I am sad and honored in that I was the one to be there.
So please, friends, please do speak to your loved ones who are passing on if you have the chance, let them know you love them, let them know they are going on to love as well. They hear you.
Oh, and I wanted to mention that from the time I stepped into Grandma’s hospital room that morning to the time she passed away was probably 15 minutes. This is another thing that makes me believe I was led there and meant to be there.
Thanks for your beautiful story and I am glad you were there for yur grandmother at just the right time. It was as meaningful to you as it was for her.
Thank YOU, Amanda. I am holding Patty in my heart tonight. Thank you so much for posting the link to the choir. That song is beyond amazing.
My husband Dan’s mother, Margaret, was a great daughter; visiting her mother in the nursing home most every day for 7 years. Mim was almost 109, and her health had been failing for some time when Margaret told her one day not to worry, that everyone would be okay, and she could go. Then she left and drove home. The phone was ringing when she walked in the door – it was the nursing home, telling her that Mim had passed. I had the beautiful honor of talking Dan across – I consider it the most sacred and loving thing I ever did for him.
I am in complete agreement with you regarding the sacred and loving aspect, Jean. I cannot tell you how glad I was that he had someone he loved so much and who loved him so much when he encountered that rockiest of journeys. Thank you so much for loving him and for sharing not only him, but yourself with us. Bless you.
Laurel
I think it’s such a mystery how someone can hear us through the pain, the coma, and respond to these assurances and then, just…let go. I was caregiver for both my mother-in-law and mother at the end of their lives. The family had kept a bedside vigil for my MIL for three days, and then her priest visited and told us we needed to give her privacy. He said that she was a very private person and would not die if someone else was there. So we told her we’d give her complete privacy if that was what she needed, and left her alone for half an hour. When we returned she had gone. My mother had been comatose and without food or hydration for two weeks, and still lingered on, growing more cadaverous every day. I finally got up one day and told her I couldn’t cope anymore, she needed to die. I told her I would take her place as the family “hub,” being the contact person, planning the holidays, making sure everyone stayed in contact. Then I sat down and started to read from the Psalms. Within minutes, she was gone. Such a mystery.
Dear Jean,
My heart is full after reading your post.
I was honored to be with my Dad when he passed away a few months before Dan. I felt so much the same but always had trouble finding the words to express how significant that moment was to me — sacred — and you worded it so beautifully. Thank you.
Dan’s influence in my life is a constant. Your sharing of Dan, as well as yourself, is a great treasure.
I pray that you are comforted daily, knowing that you are helping so many move forward in their lives. May God wrap His arms of comfort around you continually. You are loved and appreciated. Joan
My mother was a dedicated daughter, mother and grandmother. She never failed to fulfill a need that was there for her family. She died at the age of 92 in hospice with 3 of her children and 2 grand children (my children) standing around her bed.
I had just driven 1300 miles to be near her (having just taken care of her for 3 months after a surgical procedure and placed her in assisted living 2 weeks earlier).
I went into her room and played “Amazing Grace” for her on my flute and she realized I was there but said she thought st first she thought she was dreaming.
I was exhausted from the long drive and collapsed into a bed in her small assisted living space. I woke and went to her room after a good sleep and found Mom’s pastor there visiting.
My mother was lucid up til a few minutes before she passed, visiting with her pastor, waving goodbye to him. I left to get my children in a nearby town where they were spending the summer with their father. When I returned she had taken a dramatic turn for the wrorse and the hospice care worker was literally an angel, helping us to know when she was ready to go.
Mom said my son’s name as he came to her side and then we were told to say our goodbyes because she only had 10 or so minutes. She literally waited patiently to go until we were all there with her.
It is a memory I will always cherish to be there as she passed telling her all how much we loved her and that it was okay to leave us now.
I am so glad you were able to talk Dan across, Jean! Certainly it was the most sacred and loving thing that can be done for a loved one. His heart is at peace, I am sure. He knew how loved he was and that he was safe to take the next step. God bless you, Jean, for this wonderful website and all the help it offers to so many caregivers. You are an angel.
~ ~ ~ ~ ~ ~ ~ ~ ~
Marcia – thank you for your beautiful story. This was a great topic – we actually ran out of threads! Thanks to everyone for your great “crossing over” stories. I know they’ll be helpful to others when the time comes for them to help their loved ones make that amazing transition. ~ Jean
Laurel, I’d never heard of a preceptor before – thank you for sharing your story. I’m glad you were able to experience that with your grandmother. I’ve also heard of people, like Mim, who waited until their loved one had left the room before passing over. One person had stepped into the hall for just a moment. Maybe your grandmother wanted to go before your father got there, to spare him having to watch her die, or maybe because she knew he would want to hold on to her.
Jean, I also had never heard of a preceptor before that morning, and I am so grateful she was there. She was an amazingly comforting presence, so she really had a gift for her profession. Also, she was very helpful without being intrusive or pushy at all. I have no idea how many other hospitals, nursing homes, or hospice units have people like this on staff, but I thought it was a lovely thing to encounter her at that time. The way she spoke to my Grandma was so tender and caring, and there was no sense at all that she was trying to push Grandma along, but rather to let Grandma know it was okay to go. I know Grandma Anna had to have been comforted by her presence. I certainly was as well.
I appreciate your perspective on Grandma’s timing. It is something to ponder. Before we face these types of events in life, we may tend to think they are just random and that the dying are lost in their own isolated worlds. Now, however, I unerstand that the dying are often very present (even if unconscious) and that they can actually be making choices and acting on them as they make their way to their final moments.
Hi Laurel. I only just now read your story about your Grandmother. I don’t know how I overlooked it before.
You are absolutely right about how your loved ones, even in a coma or on the brink of death, can hear you.
My Mom worked in a big (Masonic) nursing home when I was a teenager. She told me that the head physician told all of the staff that a person’s hearing is the last sense to leave them & to be careful what they say because the patient CAN hear them! In fact, they would post a sign on the patient’s door warning them that the patient could still hear. I’m glad that you got to be with your Grandma at the end & help her along.
Denise H.
Jean thank you so much for the beautiful image, it looks remarkably like Patty. I will tell you all a bit about Patty. She had very fair skin and long straight strawberry-blonde hair. She had freckles all over and her claim to fame was that she even had freckles on her knees, this was back when we were kids. She was tall and very slender, She was extremely artistic and loved photography.
I heard from my mother and sister since I last posted here. Patty was awake and able to talk a little. She is very very emaciated and very tired and can not stand to be touched or moved. My mother gave her my message which was for her to get up and get well and we will get her here to Washington and show her the Pacific Ocean and the beauty of the Northwest. I told my mother to tell her this for me BEFORE we knew she had AIDS and had hope she would be able to rally and get better. When my mom saw how bad off she was she almost did not tell her but then changed her mind and told her what I said. She said she saw a tiny bit of sparkle come in her eyes and a tiny bit of a smile. She also said the drugs cause her to hallucinate. She got her room number for me to call but said she did not know if she would be capable of talking so now I wonder if I should or should not call her because I do not want to disturb her or cause her pain or stress.
I appreciate all the kind words and experiences that you have all been through, I am beginning to learn that the older we get the more we will have to come to grips with losing our loved ones and this is part of the price we pay for the wisdom of it all. Still those of us left behind still suffer while the one who goes has an end to pain. Then one day it is our turn to “go Home” which makes me think of that beautiful song I posted on here of the little boys singing. here it is again http://www.youtube.com/watch?v=o2aLSat3h0w
Thanks again and love to you all on this blog who are going through or have gone through this. It is kind of like a club that no one wants to belong to but I sure am glad that there are others to help us through it.
When I say show her I do not mean actually show her because she is blind, but let her smell the Pacific Ocean air and hear the sounds, the very air feels different up here from down there and in that way we can show it to her. But now unfortunately I can’t.
Hi Amanda, thinking of you today, and hoping your cousin is comfortable and you and your family have found peace with the sitation. You are right, it is club like here, and comforting to know we are all here for each other. Jean of course being the light that leads us on.
Char
Amanda, if your mom isn’t there, you can call the hospital and ask for the nurse’s station on Patty’s floor, and ask them if it would be a good time to talk with her. She’ll be in and out of the hallucinations, and may not know who any of you are at times, but you might get lucky and catch her at a good time, be able to talk to her. Most hospitals have gift shops – you can call and order some pretty flowers to be sent to her room, to remind her that you’re thinking of her. ~ Jean
Amanda, we struggle with everything we have to make sense of what seems to be senseless, especially when it’s someone of an age who still had great things to accomplish. The ONLY thing that keeps my feet on the ground when my emotions threaten to take my rational mind and run with it is the gratitude that I was so fortunate to have had them in my life. I wish that for you.
Thank you everyone. Today is better and the shock has lost its edge. I know that Patty will be in a better place and I will let go and move on when the time is right. What a wonderful group of people you are. I decided that I will call the hospital and have some nice nurse tell Patty that I love her everyday if possible although I do not want to drive the nurses nuts or be annoying.
My sweet cousin Patty Austin passed away early this morning, no more pain, no more worry. Godspeed precious girl
Amanda, so very sorry for your loss. Your cousin is finally at peace, and I know that is a comfort for you and her family. As you begin to heal, please know that your caregiver family here at DLH, is thinking of you and sending good thoughts your way. Much sympathy.
~Char
Dear Amanda, you’re right – no more pain, no more worry for Patty. Now you are left to sort through your feelings and memories. I hope your aunt will be able to work through her issues, and that she’ll accept input from the family about what would be best for Patty’s daughter. It may be difficult at times, but it sounds like you’re close to your family and with everyone in one state you’ll be able to support each other. We’ll pick up any slack here, if you need us. ~ Jean
I actually have plenty to say about this but it is best I just stuff it and move on but I truly don’t see that it helps a person one bit to prolong their agony to the extent that Patty went through. Where is the love in that? Sorry I do not mean to be so blunt.
Not blunt, Amanda, honest. Assisted Suicide (I prefer Assisted Passage) is a huge debate in the medical community, and at this point doctors and nurses really have no choices open to them, if they want to keep their licenses. Administering Morphine for pain is the best they can do, and it does, as it happens, hasten death.
My condolences, Amanda.
Thank you Laurel. Love to you all.
I found it a tragedy when I heard Dan had passed due to complications from prostate cancer….recently too, Eddie Rabbitt had passed from lung cancer…both were my favorites……my wife has been disabled for 10+ years…and now I too have prostate cancer….I try not to lose faith, heart, but it is hard….especially at night when you are really all alone…..but, I will keep trying……after all, why waste what time I have left!
Phil, you have a lot on your plate, but I sense that you’re a strong man (stronger than you realize) and you obviously have a great attitude. You’re never really all alone, you know – even at night – you be surprised at the wacky hours some of us keep. But even if we’re all asleep when you write us, we’ll be there soon – we’re here for you. Yes, it’s hard, damn hard. But don’t lose faith, and don’t lose heart. ~ Jean
Phil, please don’t lose heart, seriously, I can’t imagine what you are going through, but know one thing, you truly are not alone here.
Jean has provided all of us with a this wonderful venue. The nights are the worse, I have felt that total helplessness too, but believe me we are all here for you,and with you, and will be no matter what.
Char
I’m glad you found this site, Phil, and I’m even more glad that you’ve shared. Some days I need to check in just to help me through what are still some very rough spots and I hope it helps you as well. When the road gets dark, just fire up the PC and post away.
My sister sent this to me and the first thing I thought of was this beautiful site and what comfort it could bring. This must be what angels sound like,
http://www.youtube.com/watch?v=o2aLSat3h0w
three tissues.
What an angelic group of boys! Thank you so much for sharing this video on this site where it will comfort many people. Dan would have loved it!
What a comforting song and a wonderful website. I loved Dan’s music very much (still do), and had the privilege to meet Dan during a solo acoustic tour he did when the Wild Places came out. He was so down to earth, and loved meeting the people who came to see him.
My father passed away after a long battle with cancer, and my husband was recently diagnosed with leukemia. I am frightened for what I face in the future and I want to do my very best for him. I found many words of wisdom from everyone here. Thank you, Jean, for this wonderful site and for sharing the song with us. God bless you and yours.
Thank you Debbie for passing along this site. I so needed to know about it this very day.
I am sorry your dad died, and that your husband has cancer. I want to add you to my prayer list Sister, and I hope to see you this summer. Love, Susan
Dear Debbie, the fear is terrible, but completely normal. You’ll do fine. We’re all behind you, encouraging and comforting you; you are not alone. ~ Jean
Jean,
I am a caregiver (RN). Even from a professional stand point, it is difficult to watch someone suffer. Sometimes I am the last person a Patient sees. I feel it is an honor to be that person. I feel so sad for your loss. I too loved Dan (as an admiring fan) but as a wife, I cannot begin to tell you how much I respect all you did for Dan and how hard it was for you. Thank you for letting us be part of your (and Dan’s)life. Thank you for this beautiful website. My Husband has recently been diagnosed with some chronic health issues and even in the early stages of illness, it changes your life as a couple. I will be a regular reader of your website. Stay well and God Bless, Carla
Carla, your patients are so lucky to have someone like you at their side, you have such a beautiful attitude. I wish you and your husband well, and I’m glad you’ll be back here from time to time. Nurses rock. ~ Jean
Jean,
You know how special nurses are, so I have to tell you about Matt. I work in the Oncology – Bone Marrow Transplant unit of a pediatric hospital. Matt came to us 2 1/2 years ago fresh out of nursing school. He was amazing with the kids. One minute he’d be racing around the floor with a five year old on a tricycle, and the next he’d be comforting the parents of a child who wasn’t going to make it. He was adored by every child, parent and colleague on our unit. During his time off he volunteered at Camp Sunshine (a camp for kids with cancer). Many times on his day off he’d stop by to check on “his kids”. He was especially important to our teen-age boys undergoing chemo. The last thing they wanted was a young, pretty, female nurse to see tem at their worst. Matt cared for them so tenderly, like they were members of his own family.
Story of Matt continued….
Last week Matt died unexpectedly at the age of 25. It was an aneurysm. I think we’re all still in shock. Yesterday we had a memorial service for him at the hospital. I’ve never seen a larger crowd in our conference center. Several of Matt’s patients walked in on their skinny little legs, masks on their faces, with their beautiful bald heads covered by ball caps. The father of one of Matt’s patients who is undergoing a bone marrow transplant sang Matt’s favorite song, “Forever Young” by Bob Dylan. It was so ironic, and there wasn’t a dry eye in the room.
Listening to the touching, heart-wrenching and funny stories about Matt made me realize, again, the true purpose of our lives. It might be hard and exhausting and sometimes seem too hard to bear, but caring for others is the most important thing we will ever do. I’m sure Matt didn’t realize how much he touched these children’s lives, and their parent’s lives, but he made an extraordinary difference. Dealing with cancer or any other disease on a daily basis will wear you down. But Matt renewed my spirit and strength.
Thank you jean for providing a place where we can acknowledge and celebrate the ultimate thing we’ll ever do in our lives.
Evelyn
Hi Evelyn, just read your beautiful,sad, uplifting story of your friend and co-worker, Matt. The world is a better place because of him, and because of people like you that have a calling such as yours. It has always amazed me just how much,love,caring,knowledge, and stamina medical professionals have.
Thank you, Evelyn for everything you do for all of us, and I am very sorry for your loss.
Be Well
Char
Thank you for telling us about Matt, Evelyn. What a gem. ~ Jean
“Good-night, sweet prince, and flights of angels sing thee to thy rest.” ~ Shakespeare
You’ve created a wonderful website Jean. It’s very therapeutic to share & gain strength with others going through similar journeys.
My mom is in her early 80′s and is now resides in a nursing home. She is in the middle stages of Alzheimer’s, along with other age related problems.
I would like to salute all the wonderful Doctors, nurses & assistants that work and care for our loved ones in nursing & palliative care facilities when they no longer are able to be care for themselves or by family members.
I’m passing on your website to benefit others with the good work you do to support caregivers and agree with the statements made that our Dan was in wonderful hands with you at the helm.
Hoping you get as good a healthcare system that we enjoy here in Canada. Keep up the good work.
DD-Toronto
Thank you, Dale, for your kind words and for passing us on. I’m sorry to hear about your mother – old age is bad enough, but Alzheimer’s is awful. Yes, thank goodness for all the good people we can turn to when we’re desperately in need of professional help!
On our first trip together Dan and I went to a ski event in Banff, Canada. Dan broke 3 ribs while racing down a luge course and we were so impressed with how smoothly and efficiently he was taken off the mountain and treated at the hospital. Very impressive. ~ Jean
In the days following my mother’s passing, when there was so much to be done, I delayed the setting of her headstone because I felt something was missing from the inscripton. For the next fifteen months I looked and listened, knowing that it would hit me when I heard it. Finally, on a Saturday morning as the title/theme song of this amazing site was playing, I got it. Carved in granite are the lyrics, “Just remember when the road gets dark I will always be beside you,” eighth notes as quotation marks and the artist’s name carved beneath.
“Be gentle with yourself” is what someone told me during the worst times. Those four words became my salvation and, after those fifteen subsequent months finally finding what I had searched so long for, I was able to acknowledge that angst had been replaced by a certain peace. The suggestion was a gift and now I’d like to pay it forward.
Ah, Debbie, that is so beautiful, so touching. I know Dan would be proud. And thank you for passing on the Max Ehrmann line from “Desiderata”. It inspired me to re-read the entire poem, and if you don’t mind, I’d like to expand on the quote. I think it speaks to a few caregiver issues:
“Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.”
Thank you for sharing these gifts with us. ~ Jean
Hello Jean,
“Desiderata” must be heavy in the air lately as I didn’t see this letter until today and on 26 March sent the entire poem of “Desiderata” to “Beautiful Words”. It’s great to see this wonderful piece of writing circulating again. As a young hippy kind of guy in the 70′s I had the poster on my wall. The truth expressed then still hold true today…event to this 51 year old. BTW…I’ve been a DF fan since he first started out. His music continues to move me to this day. God bless you & Dan and peace be with you! Richard
Jean, When I read the stories and your replies I want to reach through the screen and just hug so many people. I am so moved by the bravery and strength of you and all those who share their challenges and joy. I am not a person who talks about their dreams, but never say never…
My father passed away about 25 years ago when I was in my mid twenties. A very painful loss. My fiancee never met him, but he sure was thinking of him last night. He kept repeating my father’s name in his sleep. That has never happened before. I believe because of his unexpected outbursts I had a wonderful dream of having dinner with my father When i woke up I was in a that foggy place wondering if my dream was real or not. It was not.
My fiancee left before me this morning and called to tell me that he had conversations with my father in his dream and he was a very kind man. I think the two men would have really liked each other, My heart did dance today when I thought about them meeting. I just felt looked after all day.
Thank you for having a place for me to put this experience into words.
Joyce
Dear Joyce, dreams are hard to hang on to, perhaps because they’re so intangible. I have a little journal by the bed so I can write down those sweet, potent dreams that make me feel happy. Then, months later I can read about the dream and there it is again, as potent as the first time – maybe because writing it down on paper has now made it tangible. Does blogging count? I don’t know, but I’ll keep your dream here, safe, just in case. Thank you for sharing. ~ Jean
Jean, I just returned from the DeVinci exhibit and saw the following quote.
The quote may not have resonated as much with me before I had my powerful dream last week.
From your suggestion I now have pen and paper ready to record another magical reunion. Blogging more than counts…
Happy Dreams, Joyce
“Why does the eye see a thing more clearly in dreams than the imagination when awake?
Leonado DaVinci
I was first married at twenty and my husband was nineteen years on me. We were married nine years with no children when he was suddenly stricken with cancer in late 1998. At first they misdiagnosed him. We had him pretty much diagnosed before the professionals did. It spread rapidly throughout him and he was gone in two short but strenuous years. We were able to keep him at home right through until his last ten days. Many hospital struggles and visits in between mind you. There was never any real peace for him in all two years but I know he would have had less if he had not been able to be at his own home most of the time. I remember wanting him to be with me on my 29th birthday and he was but he died three days later. It was such a dark couple of years and I was left with plenty of misplaced guilt. I remember the guilt of doing simple and necessary things like just eating or finding comfort on the sofa or reading Scripture…especially after he died. I did not think that I should have any pleasures in this life when he could not any longer. I felt numb and useless for not being able to really help him or spare him. It was a crazy time. God eventually gave me permission to join the living again but when we do, we are never quite the same. We are forever changed. We are stronger and wiser.
You are the one woman that Daniel really was meant to be with and I feel an amazing bond with you my dear lady. Your husband was a beautiful man and I never caught up with him to even see a single concert but I see that you did and I am so very glad because he loved you and he needed you. What you did for him in the end is what most wives never could. You are a sweet soul with a peculiar strength that was required for you to be with him. My wonderful new husband of four years and I go out sailing and there is scarcely a time that I do not think of your husband out there sailing and with you. I think of all his sailing songs and especially ‘The Minstrel’. I have followed your story from the beginning and my thoughts are with you Lady Fogelberg.
Dear Shirly, I created this site to help inform others, but I’m continually surprised at the lessons I learn from those who come and write here. I can’t imagine how I would have handled being a primary caregiver at the age of 29. And I can’t imagine losing my husband at such an early age. So much responsibility and grief for one so young! I can totally relate to the hospital struggles and the “dark years” of guilt. So it’s been, what, eight years since your husband died? And you are obviously out there creating, reinventing, loving, and becoming. Do you have any wisdom to pass along to those of us who are still finding our way through the early years of grief and survivor guilt?
Thank you for your lovely words, and for the photo of your boat in that beautiful anchorage, it brings back wonderful memories. (Everyone, you can click on the boat image to enlarge it.) I’m glad you found love again, and that you found your way here. Keep trail blazing, and please drop crumbs from time to time for the rest of us. ~ Jean
Nine years this past January, Lady Fogelberg. No personal secrets that most of you have not already discovered I am quite sure. Our experiences are similar but every one is yet so unique. General guidelines but no set recipes to survival. One day at a time. Find a creative vent that personally works best. For you that would most likely be your music. I am an portrait artist and writer but I actually found that it was all so very close to me that I could not deal with it even through those channels; for about five years. I was able to finally write on the experience but not in great length and I could never do a portrait of him ever again because it is reliving things to an unbearable degree. I would suggest when it is too soon to deal properly with such an experience, to tr to deal with it in very small segments. A word at a time. A line at a time. Our expression is so necessary though. I would not have been able to deal with any of it without a growing relationship with Christ. All things work together for my good. Whether I understand it or not is not a part of the equation. I gradually realized that I not only had permission to live but that I had a responsibility to live. That it was a sin for me to dwell on the negatives and my responsibility was to think on what was pure and good and spiritually productive. If I did not want to make things worse than they already were, I had zero choice but to believe God and let go of the demons that were dragging me down. They had no power over me unless I let them by default. Yet God in his love and preservation of me, would not let me self destruct. He also brought me my new husband who I had actually known for more than thirty years (basically my whole life)and he and I have our common faith, which is a critical element to a sound marriage. Doug is my prince of poetry, prayer, & promise. Never could I have imagined being so taken care of and lifted from the gallows of darkness.
What a beautifully bittersweet story and written with such eloquence!
Thank you!!
And I so loved the reference to Jean as “Lady Fogelberg” How PERFECT !!
Dearest Jean
Because of Dan, my father was diagnosed with treatable prostate cancer. It was caught early and he underwent treatment last year. He’s recovering well, but the radiation treatment is very hard on a 79 year old body.
On March 11, I will find out if I have uterine cancer. I had to have an ultrasound and biopsy, and there’s a very strong possibility that there is cancerous tissue there, and I will most likely have to have a hysterectomy, which should take care of it and I won’t need further treatment. Regardless, I’m scared to death but have my friends and family around me to get me through. I’m only 50, (a young 50) and I don’t plan to skip a beat. I’m back in college, have no health insurance, and I work temporary jobs to pay the bills. I just have to keep going and reach my goals; this is not going to stop me–it’s just a bump in the road.
I think about Dan Fogelberg alot. He’s the reason I nag all my guy friends and brothers to get their PSA tests and prostrate checks regularly. It saved my dad’s life. Dan has helped alot of people, even now. Along with his music, that’s how he lives on.
My thoughts are with you, and I hope you’re doing well. Stay gold!
Mona Lee
Dear Mona Lee, how great for your father – I never tire of hearing that! Dan and I always hoped that his “sermon” and story would help someone else. Sometimes the treatment feels worse than the disease, I hope he recovers soon. Thanks so much for sharing, and for being a lovely nag to your guys. Oh man, the waiting for those test results! It’s the worst, isn’t it??? Then you forget about it for a few minutes and when you remember, it’s like getting punched in the stomach all over again. I’m sorry you still have nine days of waiting to go through, ugh! 50, you’re just a kid. I’m wishing the best for you – come back and let us know what’s going on, yeah? ~ Jean
Mona Lee, we’ll be thinking about you tomorrow, sending light and good wishes your way. ~ Jean
Jean, I have loved Dan’s music since I was in high school and each time I hear a song of his, it brings a different memory of a chapter in my life…I took care of my father as he declined from an energetic man who lived life to it’s fullest and captured each opportunity to a tortured soul overtaken by diabetes and ultimately vascular dementia….he is present in my life everyday more now than he was able to be in his physical life…..there is a hawk that has flown over my home every day since the day he died (Aug 3, 2007)..just circling and circling EVERY DAY and I know it is his spirit watching over me…..I dug this poem out of my grandfather’s family bible, for your comfort, it was my grandmother’s (his mother, my best friend) favorite….I also took care of her in her last days until she succomed to diabetes Nov. 17, 1980, my first year of college……May these words give you comfort….God Bless…..
O Captain! My Captain! by Walt Whitman
(edited for space)
Hi Terri, it’s terrible to watch someone you love slowly lose themselves to a disease. Thank goodness he had you to care for him. I love the image of him circling you as a hawk, keeping an eye out for you. Thanks also for the poem, it was just too long for this page. But the reference is there if anyone wants to look it up. ~ Jean
Jean…Wow. My words seem to be fleeting. As a lifelong Dan fan who has been challenged and comforted by his musical spirit, I am now flabbergasted that you have done the very same thing. I saw a Facebook post and came directly here. It couldn’t have come at a better time. I am the only caregiver for my father and I have felt so alone for the past 14 months. I had to leave my job to give him 24 hour care. I moved in with him putting my own life on hold. Don’t get me wrong, I am not complaining. It’s just such a huge transition that really takes it’s toll.
I feel like God has placed you in my path with this website. Thank you so very much from the bottom of my heart. I know I will be using it regularly.
Thank you too for your newsletters and for continuing to share Dan’s legacy with us. This song really hit home with me.
Dear Scott, no one here will accuse you of complaining. You can leave your guilt at the door and let your normal, human feelings be what they are: completely understandable. We’ve all been there, and not a single caregiver here will tell you it’s easy; that we’ve never had a single moment of frustration, anger, or resentment. In the words of the great Yogi Boomshakalakalaka: “Life really sucks sometimes”. Well, okay, obviously I made that up, but you get my drift. You’re walking along on your path of life, and you round the bend and suddenly there’s crap on the path. Big, smelly, runny CRAP. And thorny bushes on each side, so you can’t walk around it. There’s nothing for it. You’re going to have to step in the crap. Sometimes there will be hidden holes and you’re going to be knee-deep in the stuff. But what can you do? You can give up and turn away, that’s what. But when someone they love needs them, the strong of heart will move forward. You obviously are moving forward for your father. So we commend you for your strong heart, and ask that you consider getting some help now and then for your own mental and physical health. And Scott, for heaven’s sake, wipe your feet next time you come by! ;-) ~ Jean
Hi Scott, I certainly feel your pain, one day you are on top of the world, the next the whole big fat world is on top of you! Just know we are in the same boat, and singing “Dan Songs”
Stay well and take care or yourself too.
Char
Jean, I am already teary but I had to write a note to you before I went to bed. In November, my beautiful sister Ann passed away due to complications from a stem cell transplant to eradicate MDS (myelodyplastic syndrome), which is an uncommon type of bone marrow cancer and often referred to as “pre-leukemia.” She was only 50, a very vibrant and creative human being, wife, mother, daughter, sister and friend. In fact, she had been my best friend since I was born 41 years ago. When I was a child, she fell in love with Dan’s music and immersed little yours truly as she listened steadily to all of his albums every single day. Never did her loyalty cease (the band played at least two songs from “Twin Sons of Different Mothers” at her wedding) and when Dan passed away, the two of us cried on the phone and quickly donated what we could afford to prostate cancer research. Little did we know that only two years later she would be gone and illuminating the night with her own star.
Tonight I surfed into your website tonight after finding a link on Facebook. I am touched by everyone’s words and struggles to find meaning in their respective crises, but I am also reflecting on last year’s ordeal as I watched Ann progress and then regress, over and over, back and forth, for eleven months. Her husband Steve and son Robert were the primary caregivers, but my mother, sister Nancy, brother Alan and I were co-caregivers as well. It was the hardest year of my life and the biggest devastation I have ever felt in my heart. Does it get any better? Does the pain cease or do we learn how to manage it? I know she is close, I can sense her presence ~ but I just want to call her on the phone. I want to meet her for brunch like we always used to do. I want to share intimacies, humor, music and art (she was an incredible fine artist) with her. I am still in the “WHY HER?” stages…excuse me for rambling…but I just want to grasp any warm, available hand before I submerge myself in another tsunami of sorrow. And before I cry myself to sleep, I want to thank you for constructing this website and sharing your inner light and healing beauty with the rest of us. You shared your love with an amazing man, and it’s easy to discern that you’re amazing as well. The world needs your guidance…love, Christine in CT
Dear Christine, I’m so sorry for the loss of your Ann. My own sister had heart surgery recently, and it’s been a year of worry and fear and trips to the hospital. She’s 50 as well, so your comment made me cry, thinking of how much you must miss her. In answer to your question, “Does it get any better?”, I can honestly answer: “Yes, a little bit every day”. But, “Does the pain cease?” I can only answer you from two years out – others further down the road than you or I may have a different answer, but here’s what I think: I think not. Each person we love is completely unique. No one exactly like them will ever come along again. So for the rest of our lives, there will be little things that will come up that will make us think of that special person we lost. We’ll think of what they’d say about it; what we’d say back; and we’ll miss not having them there to actually talk to and touch. And while it hurts a little less each day, it will always hurt. And that’s okay, isn’t it? A small price to pay for the joy of having had them in our lives? Sometimes we’ll smile when we think of them, and sometimes we’ll cry. When we smile, that’s what they would want for us. When we cry, we cry for ourselves; for our loss; and for the pain we feel when we remember all they had to endure. But I think we also honor them with our tears. I have this nice thought that comes to me now and then – that every tear cried, and every smile smiled in their memory, makes it’s way to them somehow. I envision Dan sailing on a heavenly sea, and every time someone thinks of him with love or gratitude, that thought makes the dolphins dance; the winds warmer; the skies fairer; and adds another sparkle on the water. So let’s agree to miss them always. Let’s agree to let the grief become not a stone to weigh us down, but a shining gem of love that will have a place of honor in our hearts always. Agreed? ~ Jean
Dear Jean,
Thank you so much for your beautiful, kind and generous sentiments. You helped me immeasurably. Through the veil of tears I wholeheartedly agree that the grief will not become a stone to weigh us down but a shining gem of love that will have a place of honor in our hearts, always and forever. I adored what you said about tears and smiles as I thought similarly about certain songs that I deliberately play in Ann’s memory and honor; the other day I said aloud, “I hope you are listening along with me.” There was a distinct grace and power in the melody and lyrics that seemed to buoy me magically. I also have conversations in my head ~ either ones that actually happened or that would probably happen if she were still here. I’m glad to know that I’m definitely not the only one who does that (talk to my loved one inside my head…). Is your sister doing well? I pray and hope so. Bless you for your tears. What I do now is imagine that each falling tear for Ann is a soothing salve for my heart. Perhaps the hole will partially close. I cannot imagine that it will ever close completely, but soft scar tissue will form and protect that gaping hole a little bit.
My other sister, Nancy, read what you said here on your site and wept. She might write to you as well. Please know that you are a true healer as was/is Dan’s music; it pleases me deeply to remember childhood afternoons spent with Ann in our den as Dan’s records spun on the turntable. Those are the comforting memories that I really treasure, and I’ve already said to Ann (in my head): “I hope you’ve met Dan by now!”
Much love and sweetness,
Christine xoxoxo
Christine, I do similar things. For instance, I’ll be driving along listening to the radio and a song will some on that I don’t like very much, but it’s one that Dan liked. I can’t help it! I can’t change the station, just in case he’s listening. Thanks for asking: my sister had a pacemaker and defibrillator put in a month ago, and felt better immediately. She’s doing great. That’s her kitty George on the Caregiver Depression page.
The hole in your heart will heal. The scar tissue that forms over the wound will make it stronger. Remember your first heartache? It felt like your heart would literally shatter from the pain, and you would die. But you didn’t, and the next time someone broke your heart you realized that you’d survived the last one, and that you’d probably survive this one. So we brush ourselves off, hold our breath, and pull the handle again that will hurtle us through life like a ball in a pinball machine. The human heart is so amazing, so resilient. Scars build next to scars and on we go, stronger and wiser.
I’m so glad my words helped, and that your pain will become a gem instead of a stone. My Dan gem is a deep violet. It shines the brightest when I’m dancing. ~ Jean
“People grow through experience if they meet life honestly and courageously. This is how character is built.”
– Eleanor Roosevelt
Hi Jean. I’m so sorry for the lapse in communication. This was my birthday week, and it was really, really rough. Our family’s birthday dinner (which included myself and Ann’s husband, Steve, as the honored ‘March baby’ guests) was cut short after only two hours. It was clear that nobody wanted to be there. Afterwards I took an aimless drive and just sobbed. I miss my sister so much; she was a huge part of my life. Every single day we had contact…I realize you know what I mean.
Yes, I would do the same! If a song is played on the radio ~ something that Ann liked ~ I will blast the volume. It doesn’t matter if I dislike it, the song is for her. And I’m so deeply elated that your sister felt better immediately after they implemented the pacemaker and defibillator. My aunt has lived for many, many years with a pacemaker; she’s now 84 and still going strong. Bless your sister ~ she is STRONG! And she has a wonderful kitty cat! I firmly believe that animals are caregivers in their own right and I always refer to my cats as my “nursemaids” when I feel sick.
I loved what you said about the human heart and how it’s so resilient and amazing. Lately it has felt battered but I am still here, still breathing and still moving onward…even if it’s at a snail’s pace.
That’s funny because my other sister Nancy and I just agreed yesterday that Ann’s color is a deep purple/violet! It’s also a hue that I enjoy wearing: as a gemstone, as a blouse, as pants. I think that color reflects our loved ones’ auras.
Much love,
Christine
Dear Christine, I’m sorry to hear your birthday was such an unhappy one. You know, there’s nothing wrong with avoiding birthdays, anniversaries, or holidays that will be upsetting. The first Christmas after Dan died was I was lost to the world (of course, it was only nine days after he died). The second Christmas I told my family I would come for Christmas as long as there were no decorations or presents. My parents were actually relieved to be able to skip that part for once. No one had a problem with it, they just accepted it as my personal decision. This year I put a wreath on the front door and sent out some cards. It’s weird for my family because, like Dan, Christmas was my favorite holiday. I usually started in October making homemade ornaments, cards, presents, and cookies. And maybe one day I’ll do all of that again. And maybe I won’t ever do any of it again. I’m only just beginning to know this new person emerging from the fire. Listen to your heart and if it doesn’t feel right yet, don’t rush it. A snail’s pace is fine, as long as you’re looking and moving forward. ~ Jean
“They change their climate, not their soul, who rush across the sea.”
~ Horace, ancient Roman poet
Oh, Jean…I am weeping. Like you, I lost my feline daughter last night. Aurora had cardiomyopathy but she was doing really well and, at the approximate age of 12, had the countenance of a kitten. There were no signs that she would abruptly suffer congestive heart failure, but she did so at 6:00 pm yesterday. I held her in my arms while my father (who’s 83 and just had congestive heart failure himself in January) drove us to the ER at the largest veterinary hospital in New Haven. After CPR they told me that they restored her heartbeat but she was otherwise unresponsive; there was no brain activity, her rear legs were paralyzed and she was only breathing because the respirator was breathing for her in the ICU. This is also exactly what happened to my sister Ann during her last few days; she was alive due to the respirator. There was no brain activity, and all of her organs had failed or were in the process of failing. As a former veterinary technician, I told the doctor that Aurora would have no quality of life and I did not want her to suffer another moment. I kissed her as she was injected with ‘lasting sleep’ as I always referred to it…then I held her for half an hour while I told her that Auntie Annie and the rest of our family in Heaven would take good care of her. I asked her to wait for me and Zoey (my other kitty, who’s asleep nearby) and that she was my wonderful daughter who provided me with nothing but joy, love and laughter. I can type all of these sentiments but I cannot speak and my face is soaked. My heart has been shattered all over again…the pain is so deep. I must hug Zoey again. I’m so sorry, I just needed to share on your site because I know you and many other caregivers would totally understand. Love, Christine xoxoxo
P.S. I opted for her ashes in an oak box, and they will be buried with me when it’s my time…
Christine, I am so very sorry for your loss.I found it hard reading your last post, and cried for you. Stay well and hug your Zoey again. I have a Zoey too! :)
Char
Oh Christine, me too, tears for you pain. I’m so sorry this had to happen now, so soon after losing Ann. I’m glad your father was there to drive you. I know how hard this was for you but you did the right thing; the unselfish, brave thing. Aurora had a wonderful, long life thanks to you. Think of all those minutes she was happy and healthy and felt loved – what a gift you gave her! In the end you did everything you could, and when that wasn’t enough, you let her go. Well done. She’s probably on Ann’s lap right now. ~ Jean
Thank you, Jean and Char, for your lovely words. I have been in a fog these last couple of weeks, and yesterday’s attempt at enjoying a holiday was again thwarted by the absence of our loved ones. I swear, absence has its own zip code lately. I am starting to regroup a bit…going to my therapy groups, studying for my correspondence course, garnering a part-time job. But I still wish I could call Ann on the phone and hold Aurora in my arms. I hope both of you are doing well…I’ve spent the better part of the last hour here, just reading and catching up on everyone’s lives. I’m also grappling with that fear of “who’s next?” but I’m slightly calmer than I felt two weeks ago. Much love, Christine
P.S. You’re so right, Jean. Aurora has been on Ann’s lap the whole time. A week ago I picked up my baby’s ashes in her little oak urn and placed it next to me on my bedside table. On the other table is a photo of her several years ago when she was healthier and yet another photo of my sister Ann as she held my nephew Rob, who wasn’t even a year old at the time. Rob is now 18 and deciding between Wesleyan and Columbia. He is a brilliant, kind, sensitive, musical, loyal and beautiful person ~ my sister and brother-in-law raised an exemplary human being. Rob also knows all of Dan’s music and plays many of his songs on the piano and guitar. XOXOXO
Jean, my husband had a pacemaker-defibrillator put in a few months ago. I believe it is helping him, but it still feels foreign to him, he feels like it is slipping down. He fusses about it everyday, but I know he must feel some relief to know it’s there if he needs a boost.
I think it is amazing that we have such options these days.
Good luck to your sister, I know she will do well with the device.
Carol
Dear Jeanie:
Your images of your tears reaching Dan as he sails in heaven have brought me to much needed tears that I have not been able to shed on my own in a while, as it then makes the loss so much more real again. However, you have shown me that they need to be shed; otherwise, I’ve found the pain too intense to live with. Knowing that the most beloved ones for you are in heaven, and you are not quite there yet.
If it’s okay, I’d like to include another sailboat in your lovely image, sailing near Dan’s, close enough to hear his beautiful voice singing to you, and all of our tears can create the most gentle waves for his most perfect sail. Your words, insights, and beautiful soul have been a Godsend to me, and I thank you so very much. You began as Dan’s angel, but I think you have become an angel to many, many more of us. My prayers to your sister, and George. The website is stunning.
Warm thoughts from the Rockies,
Stacy
Thank you, Stacy. We’ll create a heavenly flotilla. ~ Jean
Hi Cristine, I will just say that I have been thru all those phases of why her/him why me, how come that guy/girl is alive and my loved one isn’t It hurts and hurts, and then one day you can actually exhale, it still hurts, but time has passed and made it slightly less stinging. We here all are with you and know that time will make a difference, as much as that line sounds corny now.Jean’s comment says it all! BTW I am in CT too.
Char
Dear Char,
Bless your heart for reaching out to me. I cherish what you said. Nothing was corny, not at all. There are days that inhaling hurts like hell and then there are days when it’s okay, it happens and I can even exhale thereafter. Where in CT are you? I’m in Branford.
Love,
Christine
Chris, I am in West Haven, we are so close :)
Hi char/cm & Jean. I read your comment about how hearing Dan’s songs just make you feel better by listening to them. I guess that I am not alone in that. There are days when I just feel like nothing is going right. I have an older sister who is a major drug addict. She lives with my Mom (who is 75) but she refuses to get a job to help her out. In fact, she even steals from her. My Mom still works full time to make ends meet while my sister does nothing. I help Mom out as much as I can but I can only do so much. I have my bills to pay & I barely make ends meet. I just worry about what the future is going to bring & how am I going to be able to handle it on my own. I get depressed & then I’ll hear one of Dan’s songs & it just seems to make me feel better. Thank you Jean for starting this site. Just reading what other people have written makes me realize that I am not the only person with troubles. In fact, I am probably luckier than most. But sometimes it is still so hard to stay strong.
I also love the packaging on the CD. I collect dolls (nothing expensive, mainly ones that I find at Goodwill who seem to “speak” to me) so I was delighted to see that you still had the Innocent Age (LOVE that CD) doll.
Stay warm, winter is finally almost over. It’s been a LONG winter too.
Hi Denise, I am very sorry for your family troubles, stress is a horrible thing. This site has made me realize that I too am not alone. Along with the ailing husband, I care for my 90 year old mom. Both thank God are doing well, but the daily stress is hanging on me. Without this site and the information that is given, the comments from caregivers, not sure what situation I would be in mentally at this point! Its hard, but its life, and good/bad all works out. Many good thoughts for you and hoping you find peace, have faith and stay well. And TY again Jean for all of this.
Char
Thank you so much, Char. Yes, stress is brutal. Sometimes (especially late at night) you wonder if it will ever get any better. Then your brain takes over & you realize that now is probably as good as it is ever going to get. You just keep going on & assuming that you are just going to have to carry the load alone & take comfort in the small pleasures in life. Be it the first spring flowers blooming (still waiting for that one here, the snow is still melting), hearing a song that makes you sigh & smile, a warm windy day, or having your dog come running to the door (howling & screaming with delight) to greet you coming home from work.
I’m blessed that my nearly 76 year old Mom is still very healthy & active, although my Dad died a few years ago. Although I worry about my Mom & her age, I also fear that one of us will come home & find my sister dead of an overdose (she uses a few things but heroin & speed seem to be her favorites). I would hope that it would be me, finding her, because I want to spare that from my Mom. Rehab isn’t an answer. She only goes there long enough to get out of trouble. As soon as she is off of probation, she is at it again. Some of the stories that I could tell you about what all she has done would curl your hair. One thing that this experience has taught me is that I no longer believe in rehab, it is a joke! I can’t quite figure out what coloring pictures has to do with kicking drugs? That is one of the activities that her rehabs have done as treatment & it obviously doesn’t work! I laugh when people talk about rehab anymore, they might as well run to the store & buy a box of crayons & a coloring book! It’s cheaper!
Sometimes I wish that there really was such a thing as a magical fairy who could just woosh all of our troubles away with her wand. But there’s not so we just keep going on & trying to stay happy (or make people believe that we are).
You take care of yourself & stay strong too! Thanks Jean for this opportunity to share thoughts with others in difficult situations. Sometimes the smallest comment from someone can brighten your day in ways you wouldn’t have imagined. :-)
You never know…… ;-)
Oh, THANK YOU Jean!!! Pretty please, let’s HOPE!!!!
And the good news is that it is sunny & warm in Ohio this morning! The snow is almost gone, come on springtime!
Love ya,
Denise
Hi Denise, you made me happy by your response, and so I hope this site can lift your beautiful spirit, and let you know, u r not alone. I do understand completely your comment of making like you are happy, or having other people think you are. You sound like a very strong person, and my thoughts and prayers go with you.
:) try to take care and think positive thoughts.(for real)
Char
Hi Char, I’m TRYING! It sure can be tricky though! Really, if you want to meet someone with a strong spirit, you should meet my Mom (she doesn’t realize how much I worry about her). She is the child of alcoholic parents who used to leave her, as a little girl, to go out drinking. She has told me how she used to try to do her homework, crying, while trying to make her baby sister quit crying. She’d be sitting at the table with her foot against the baby’s cradle, trying to rock her to sleep. And crying herself. That images haunts me. She deserves SO much better in life than she’s had.
She & my Dad were great parents. Dad grew up in a very large, poor family during the Depression. He told Mom that they never got much for Christmas except a red wagon, & that was mostly because they used it to haul things in, not for play. He told her that he would always make sure that his little girls had very nice Christmases because he’d grown up so poor, and he (they) did! That’s why I can’t understand why my sister turned out so screwed up & uncaring about anyone else but herself. Her childhood was the same as mine & I’m not like that.
I swear, if I ever hit the lottery big (of course it would HELP if I played it), I would take her, myself & the dog & we would get the heck out of here & get our own little place where the users wouldn’t bother her anymore!
Maybe I’d better buy a lottery ticket at work tonight, ha-ha.
Thanks again for being my “shrink”! I really do keep things bottled up.
And the good news is that it is late afternoon in Ohio & it is still sunny & WARMER in Ohio! And spring is even closer!
Love ya,
Denise
Hi. Denise from where i sit (at work) looking at this great web site, you seem to have a great sense of humor, and we already know you have great taste in music, since you love Dan as much as we all do here. The caregiving situation seems to be coming to a head, (in my head too) and At least due to this site, we are now aware of whats going on in our heads, not to mention the people we care for. I have really bad days, and some great ones too, but thats life. Your mom is a fighter and so are you. I was hope and pray that your sister takes a turn for the better, and you win the lottery…. so buy the ticket(s)!!!!
:) Stay well.
Char
Jean, I felt compelled to visit this site tonight. Within the past eight weeks, I have had four deaths. I was not a caregiver for any of them, one was my cousin, three were friends, one was expected, three were not. Dan’s music has always brought me much comfort, especially now. I know there will be more, I guess I’m at that age they tell me. Monday I will be turning 54 and I am visiting with friends I have not seen in 20 years and you can be sure, Dan’s music will be in the background the whole day, my present to me. I hope winter has not been too bad for you. Here in Florida, we have had cold temps but no snow. Forces me to slow down, relax and listen to more Dan. Thanks again for all you do for us, for this beautiful site. I have shared it with many other folks caring for loved ones. Love and Blessings!! Susan
Hi Susan, hope you don’t mind me commenting on your post, I am sorry for your recent sadness and loss. I especially liked it when you said that Dan’s music has brought you comfort. That is the exact feeling it has always had on me. Jean, just wondering if Dan really knew how much his life and work meant to all of us. What joy and happiness it created, and will keep on creating. And I know that you (Jean) have done the same for me, with the creation of this site, and the insite to Dan, my idol, the very private person.
Hi Susan, what a tough couple of months you’ve had. Yes, at our age these things start happening, but four people! That’s extreme. Happy Birthday, and have a wonderful time today – you deserve it. ~ Jean
It’s all good, Char. I never tire of hearing praise for Dan, he deserves it. Here, there, everywhere! So glad you like the package. ~ Jean
Dear Jean,
Thank you for everything that you have done to help others deal with the loss of a loved one. I lost my Mom 11 years ago tonight. She was an amazing woman who put everyone else before her. I was able to take her and my Dad to Dan’s solo acoustic concert to open Fiddler’s Green in Denver in 1988. I think they both realized that night why his music meant so much to me. As I write this, I listen to “Don’t Lose Heart” and it reminds me of my Mom and her approach to life. I just wanted to say “thank you” for all of your hard work, and also for being a caregiver to all of us as we continue to feel the loss of your husband. Hardly a day goes by without listening to a song or two of his on my ipod.
Phil
Thanks, Phil. It’s my pleasure to do the things I’m doing – the healing goes both ways. Your mother sounds like a wonderful woman, what was her name? I’ll light a candle tonight for her. ~ Jean
My Mom’s name was Phyllis Jean Gentry. Before she died, she knew that my wife and I were expecting our first child. She hoped to live long enough to hold our little girl, but her cancer was too far advanced. We decided to name our daughter in honor of her, so we gave her the name Adrea Jean-Alexis.
Phil, we’re having a big storm tonight in Maine, the wind is literally shaking the house. I lit a candle for Phyllis and the power went out. I love those little moments of serendipity. Here’s to Phyllis Jean Gentry.
“Because I could not stop for Death
He kindly stopped for me
The Carriage held but just Ourselves
And Immortality.”
~ Emily Dickinson
Thank you.
Dear Jean,
How can I put into words how to thank you for this incredible, comprehensive site dedicated to Caregivers, past, current and future. You are such an inspiration to me and millions of caregivers everywhere. I am an ex-caregiver, like you, not as recent. I took care of my Mom with Alzheimer’s or “Lewy Body Dementia” and my Dad with Prostate Cancer and other complex multiple medical problems. They are in Heaven, 12 and 11 years respectively now. My story is on here – I felt compelled to write it and put it here-under “jean m.” The stressors of Caregiving are immense, physical, emotional and financial.
I cannot thank you enough for this site- It is simply wonderful- I know Dan is smiling down from you in Heaven.
Sincerely,
Jean M. Shea
New York, NY
You’re welcome, and thank you for your kind words, and for your story. Don’t lose heart, Jean M – the right love and the right job are out there. Go after that job, and be open to love. (I added the rest of your comment to your page, to save on space.) ~ Jean
Jean,
Your response back means so much-Thank You!
You are so very welcome for my words and my story.
That is the least I could do for you and to remember Dan.
I will go after that job and am open to love.
I just lost my “Second Mom” yesterday, 81-to her second bout with Cancer, she was another strong, incredible Woman. I had the pleasure and honor of helping her and being with her in her last five mos. in this life.
We are having a bad snowstorm here in NYC and I know North and West of us is bad, as is New England.
Take care of yourself-something we all have to remember.
Love, peace and all the Best to you Always.
Jean
Dear Jean,
How strange is this? I just emailed you the other night about a so-called “gold album” and now I find this site! Why do I feel led here? I am a caregiver in a different way, as I am a volunteer EMT and I ride with our local EMS squad. Each time I ride on a call, I can see any type of illness or trauma. And, we often aren’t just caring for the patient, but also for the family around them. Many years ago (34 to be exact) my mom died after a long battle with emphysema, which lead to congestive heart failure. I wasn’t involved with EMS at that time, but often wonder if her illness is what prompted me to become certified. Alleviating pain and suffering can be draining and also exhilarating. Thank you, Jean for this oasis for caregivers. I know it must be a comfort and a release for you, too. As a DanFan for well over 30 years, I am thankful he had you with him when he needed someone the most! And, yes, I was one of the many “in love” with your husband! He still touches my heart, I thank God for Dan’s music every day! Bless you for sharing him with us!
Hi Bev, I’m glad we were able to answer your question about the fake gold albums on eBay. Thanks for the work you’re doing, I know it must be rewarding but also very difficult. Any time I hear a siren in the distance I think: “Someone is having one of the worst days of their life right now.” What an important job you have – helping others during a time of such extreme need. ~ Jean
Hello Jean! My family and I were great lovers of Dan’s music. I am 44 and my sister got me started on Dan’s music over 30 years ago. Like many folks, his music paralleled events in my own life and I felt like I lost a friend when he died. My son lost his first tooth at Pine Knob during one concert, and I went into false labor at another concert! My son who is now 15 cried when I shared that our favorite musician had died. I have been following your writings on the Living Legacy and from there I recieved this website. I wanted to share with you that tonight I will be sharing this site, with Dan’s song “Don’t Lose Heart” during my oral report at Grad School. I am working towards my Master’s in Pastoral Care Ministry-Hospice and will be doing my praxis work with the grieving. I admire your courage and your passion for using your grief to benefit so many others. I am very proud of you and so grateful that you were given a chance to share this earthy life with your true soul mate. He would be so proud of you…out there sharing your heart with others! Thank you for inspiring me! I am so proud to share Dan’s music with my class. I know they will be blessed. Sincerely, Laurie
Hi Laurie, your comment made me smile and get a little teary. It’s so sweet that your son cried for Dan – a young man in touch with his feelings, just like Dan. I’m honored that you’ll be sharing my blog with your class tonight (Hi everyone!). I’m presently working on the “Coping With Grief” page, I hope you’ll give me feedback or suggestions once it’s up. Good luck with your report, and thanks for taking this path of service to others.
~ Jean
Hello Jean –
Just a bit of humor for you: I ordered three items from your Zazzle.com “Don’t Lose Heart” collection — the “Heart at Sea” card (such a powerful image), the white mug with the collage of wonderful hearts on it, and the “Happy Valentine’s Day” card with all the softly-colored hearts. All of the items are excellent quality and truly lovely.
The Valentine’s card was to be given to my husband. When I opened the card to sign it, I saw the words, “your message here.” Headpalm! I had not realized I could personalize it when I ordered it. My husband got a good chuckle.
By the way, I have a shelf that I use as a sort of altar to the things and people who inspire me. Among the various items and pictures I keep there, I have a drawing of Dan I had done years ago from one of his album photos. I propped the “Heart at Sea” card next to that drawing. The effect was almost magical in that it evoked such a wonderful feeling of the fullness of life; how he loved the sea, the blue of the heart evoking that blue lobster rarity and beauty of your love together, and the way the heart itself is the illumination in the “Heart at Sea” card — no sun or moon present; the heart gives the light.
Thank you so much for sharing your artistic treasures with us. I may have contributed a few dollars to Dan’s Quest by purchasing these items, but I received so much more than I expected when they arrived.
I also love the new colors and look of your site. And thank you for including the “cool, pretty, fun, and inspiring” links. What a delight (and a welcome distraction when needed).
Sending you an air hug filled with bright warm sun.
Ah, Laurel, I thought it looked like someone had purchased a card “as is”, but wasn’t sure. But just in case, I changed the card line so there are now sentiments in every card (they are all customizable). So, thanks to you, no one else will have an OOPS moment. But I’m glad your husband got a chuckle out of it. I took that “Heart At Sea” photo when Dan and I were cruising around Maine for the last time. It was such a beautiful color for a mooring ball. I just changed the top of it to look like a heart. Glad you like the new design and links. ~ Jean
Dear Jean,
While I really enjoy visiting the wonderful official Dan Fogelberg website, this endeavor of yours deserves a lot of praise. You are providing a great resource for those suffering with loss or dealing with the stress of caring for their loved ones.
It is nice to see that this site is growing. You have done a great job providing the resources that caregivers need so much. When it became necessary for our family to make the difficult decision of finding a nursing facility for our Dad, we struggled with the emotional issues and financial considerations. It’s wonderful that there are caring people like you that take the time to provide a resource that can help others with the same issues we faced.
Thank you for keeping Dan’s legacy strong, and thank you very much for this website.
Steve
Thank you so much for that, Steve. Both endeavors are very close to my heart. ~ Jean
Hi Jean, Thank You for this beautiful site, your poem, & all the information offered here which truly is From The Heart. You see I too am a caregiver & work with adults with disabilities (ex. Autism, Down Sydrome, CP, Developmental, etc.) My job can be very enduring to say the least as I need so many diversions to keep me going. Music is me refuge & has been for as long as I can remember. I too light candles & create an environment that soothes me after a very long day, as well as visiting this site to remind me that I am not alone in what I do for a living. I have also been a caregiver for my sister & father, unfortunately they have passed on & I pray that their suffering is over for them. What I did for them has given me the strength to do what I now do for a living & I constantly pray for strength to get up & do it again one more day. It is comforting to know that their are so many people out there that still have a heart. God Bless
Marie, you’re doing crucial work and I’m sure you’re very important to the people you work with. So take good care of yourself! ~ Jean
Jean,
You have done some really extraordinary work with breathing life into an incredible blog/site and through it are doing so much by giving new hope to those who are caring for loved ones and trying to achieve a sense of balance in their lives at the same time. Your artistry is beautiful, the wisdom being shared is treasured and the sense of direction that you are setting unprecedented in terms of care givers support. Thank you so much for all that you are doing to share, motivate others and create a safe haven for so many to come to and share experiences and to walk with an improved sense of purpose and comfort. I feel blessed to have become a beneficiary of all of this and cannot thank you enough.
With sincere appreciation,
Terri
Thank you Terri, it was so nice to read this lovely comment on Valentine’s Day. ~ Jean
Beautiful site. What a wonderful contribution you’re making.
Thanks, Laura. Happy Valentine’s Day. ~ Jean
Everytime I come back to this safe haven,(and it is often) it has been re-designed, THAT alone takes my mind off of my daily worries, etc. Thank you again Jean, you are so talented. The look, feel and overall lovelyness of this site, makes my heart smile. And for that and so much more helpful information ,found here, I thank you from the bottom of my soul… Be well:)
Char
Thanks Char, it’s taken me a while to learn the blog coding, and to find just the right customizable theme with all the goodies I wanted, but I’m happy with this one. I’ll change the header and colors from time to time, just to keep things fresh. I’m glad you feel at home here. ~ Jean
Good morning, Jean.
I also lost my love,
a few months before Dan,
and, this morning, here
in the Rockies, I am
lighting a special candle
for him, as I tend to do
on special days, which
can also be difficult
days, as you know too
well. I’d like you to
know that I’m thinking
of you and Dan this Val-
entine’s Day and lighting
candles for both of you,
as well. Our losses are
tremendous, and, at
times, seem overwhelming.
I deeply thank you for
your generous spirit in
creating this website,
and for the ways in which
you continue to honor
Dan and his legacy, and
inspire others to do so
as well.
My thoughts are with
you. And Dan.
Thank you, Stacy, for the candles and good thoughts. This romantic holiday is a tough one for those of us who’ve lost our loves. I hope you’re healing well. ~ Jean
Thank you for those sweet, encouraging words, DeeDee. It means so much to me to know that the blog is accomplishing what I’d hoped it would, and more. And (ahem) as you can see, this page is a mile long! So don’t be too concerned about the length of your story, just tell what you want to tell. ~ Jean
“Fill your paper with the breathings of your heart.”
~ William Wordsworth
Hello, Jean -
I had received The Living Legacy newsletter announcing the launch of this site, but couldn’t bring myself to visit until today; I knew it would stir up a multitude of emotions. The tears that came while reading stories here needed to fall… tears for my parents, myself, and for others who are going through this experience. Me, I grew up 35 miles north of Peoria. At 19, I moved to Colorado (living in the Nederland area for a time). I came back to Illinois in 2003, though, as a quiet voice kept telling me that it was time to be near my parents. At that time, my mom, a then-retired critical care nurse of 40 years, who was strong as an ox, never hospitalized, said to me, “When something finally gets me, it’ll get me good”. In 2005, she was diagnosed with Stage 4 colon cancer. She defied the odds and survived until June 19, 2007. Dad was devastated. Mom had been his caregiver for 25 years following a quintuple heart bypass that left him permanently disabled. Five months later, late at night on Thanksgiving, under my care, Dad fell and fractured his pelvis. Four days into his hospitalization, a stroke. Four days later, he let go as a gentle snow fell outside the enormous window of his room. My parents were Dick and Mary Delano. They were married 53 years. Although immensely
difficult, it was my honor and privilege to care for them, to ensure that they moved on with dignity, and that their wishes were fulfilled.
One wish – Mom didn’t want sad, somber organ music played for her services. When I played Dan’s “Magic Every Moment” for her one day, she said, “that’s the song” for her funeral. Dad’s Lutheran minister seemed somewhat displeased to deviate from traditional hymns, but as the music filled the church, I turned to see smiles on the faces of those who loved her, and felt the most comforting hug surround my heart. I am now the 46-year old adopted orphan of two of the most loving, generous spirits to walk the earth. God put me in their arms for a reason all those years ago. I can only hope that they left knowing how very grateful and blessed I felt my entire life, and how honored I was to be their daughter. Perhaps I’ll share my full story here… only those who have been in this place will understand.
So I thank you, Jean, for this site. And I thank you for loving Dan; for being the woman who at last provided him with love and peace, acceptance and support, and who is so lovingly following his wishes. Dan’s music is woven into the lives of so many, and I personally thank you for honoring him and your love story in such a beautiful, giving way. As you know, many of us were “in love” with him over the years. Now we all know that You were the one destined to love Dan as he so richly deserved, and to so beautifully carry his legacy ever on.
Big Hugs, DeeDee
Dear Dee Dee,
I’m glad you finally felt ready to visit the blog, and that it provided a little release. It’s obvious you had a wonderful relationship with both of your parents and that the love and gratitude went both ways. Your story illustrates what I told Becky earlier, that knowing you did your best to care for your loved ones gives you a lifetime of peace once they’re gone. It also emphasizes the importance of discussing “last wishes”. Please do share your full story with us, we’d love to hear it. Yes, I know that many women were “in love” with Dan; we all have fabulous taste. ~ Jean
.
Hello again, Jean — After reading your response this morning, and a few more stories, I switched over to listen to your FM Odyssey interview with Fred Migliore. When you said that you and Dan didn’t talk all that much about his cancer, it really resonated with me. Mom wasn’t that interested in discussing her cancer, either. She wanted to focus on the living part of her life… she didn’t want pity. Then while walking the dogs in the pasture of freshly fallen snow afterward, I started My Story in my head. It wasn’t long after coming inside that I began putting thoughts down on the laptop. My unfinished story is currently (ahem) four pages long, so some editing will be done before I share it here, I’m sure. But I really do want to thank you, because I haven’t done this… I haven’t looked all the way back to when it all really began for my family in 1982. It’s reawakened some feelings, some moments (good and bad), and most importantly, so much LOVE! Yesterday I thought that what you’d done with this blog was extraordinary. Today, as I sat here writing, I felt a lightness in my spirit. What I’m learning, for myself anyway, is that to share one’s story is first and foremost for the storyteller. For me, with both parents now gone, it’s almost like writing chapters in the history book of my life. No matter what edition makes it here, I’ll always have the unabridged version for myself. What a gift! And if my story eventually touches another, then it’s an even bigger gift… one with a beautiful, big red bow on top.
If I may, when next you find sleep, please take a moment to close your eyes and imagine Love coming to you from every single grateful soul who has found their way here. Whether their story is told or not, on some level I believe we all leave here feeling less alone, less scared… more validated, and more loved. It’s incredible.
Hugs,
DeeDee
p.s. LOVE that you included a Humor page. I found myself laughing out loud!
Thanks again, Jean for this wonderful outlet and all the resources you have been providing.(My story is up on this site already) I now have the responsibility of taking care of my best friend and her family. She was diagnosed with an extremely rare form of dementia called FTD or FTLD (fronto-temporal lobar dementia). So very little is known of this fatal disease. The worst part of it is that she is only 44 years old and has an 8 year old son. Her disease has progressed tremendously in the past year-she has trouble dressing herself and her executive function is almost completely gone. I was surprised to find out, in my ongoing research of FTD, that her memory of music is not affected. She always loved music and loved to dance and it is an easy way for us to reach her or occupy her time or just settle her down when she can’t control her behavior. I put on one of the compilation cds wich has Beggar’s Game on it and she remembered most of the words and all of the subtle nuances and orchestration…she tapped her finger along through the whole song and I was so surprised at this because she had not heard the song in years and years! Even if she can’t remember what she just ordered for lunch, she still has Dan’s music embedded in her brain and this somehow gives me great comfort. Don’t Lose Heart has been my anthem since I first heard Dan sing it on stage. I was thrilled when it was on the Portrait cd. It is also the perfect name for this forum. I see how many people on here are struggling with anger and fear and you have given us all an amazing gift-a place to channel all that into something positive and helpful. God bless you and thank you! Cindy Elliott
Ah, Cindy, thanks for reminding us about the magical, healing properties of music. I think I’ll have to add a new page to the “Relax” section. ~ Jean
Dan’s music is especially relaxing, we play his music when we go to bed quite often. We get so involved in his story, we forget about our problems, and soon like a good book, we have fallen asleep.
Caregiving is both scary and rewarding. Scary, because you never know from day to day what will be required of you. Caring for another person is a big responsibility. You want to do everything right; your worst fear is that you’ll make a mistake and add to their pain.
Truer words were never spoken. With this site we all know now, WE are not alone, in this fear. TY Jean very much
Char aka CM
The bad thing about those mistakes is the way they stick with you. Over the course of Dan’s cancer, I did hundreds, maybe thousands, of things “right”. And I get a mild feeling of peace remembering them. But when I think about one of the few times I blew it, like the time I had to give him an injection here at home, and did it wrong, and hurt him, well, I’m sitting here crying just thinking about it. It was 3 years ago, and it hurt him for about one minute, but it’s still intensely painful for me. That’s love, that’s caregiving, that’s life. ~ Jean
While Mom would probably say I did all kinds of things right, there was one day I think she would have liked to smack me. It was the day I offered to cut her toenails for her and was so careful not to cut too low that I failed to recognize how close the other toe was! Yeah, I got one nail and one toe proving that old adage, some help is no help at all!
Jean, As I write this I am listening to “Run for the Roses” I have every one of Dan’s song on my I- pod so even on shuffle his play most of the time. I can’t go a day without one of his songs. Thank you so much for this site. Four years ago my husband and I became care givers for my older brother he is diabetic, has arthritis and heart disease. He is 75, fifteen years older than me. I’ts been a struggle dealing with lots of problems, heart surgery, cataract surgery, and so many trips to the ER for other things too numerous to list. He is the poster boy for not taking care of himself and now it is coming back to haunt him. Thank God I have my husband I could not do this without him. Thank you again for all you do.
Kathy, you’re so lucky to have such a supportive, understanding husband. You can share the weight of the caregiver burden, and keep an eye on each others’ health. My grandmother always used to say: “Free advice is worth what you paid for it”, but she was always giving unsolicited advice, so it’s in my genes. Having said that, I just want to say that if things get too difficult with your brother, get some outside help (read the “A Helping Hand” page) and put that gem of a husband first. Hold him close and be grateful for every day you have with him. And don’t sacrifice too much of your life together because your brother abused his health; we all have to take responsibility for the choices we’ve made in life. ~ “Nosey Parker” Jean
Jean, May you be blessed a hundred-fold! This is a fantastic site that is long-overdue. You truly fulfilled the vow of “in sickness & in health”, etc. My love of Dan’s works is now eclipsed by my admiration for how you both danced thru his waning days & your passion & perseverence since his passing. My Dad passed away the day before Father’s Day last summer after a long bout with COPD & slow system’s failure. Couple this with my Father-in Law’s passing nearly 3 years prior from Colon CA, we have 1st hand experienced the caregivers role all too well. This site will also be a great reference for my patients who are weathered by doing a lot of caregiving [I'm a shrink at our local V.A.]. Please know you are still in my thoughts & prayers, and I haven’t lost heart! [PS: Dan's influence in my life include one daughter named "Wysteria", my son named "Daniel" & my other daughter "Holly" from the Holy Road! Pretty wild huh?!]
Thank you again! Dr. Ron
Hi Dr. Ron, thanks for passing the blog on to your patients at the V.A. I’m always sorry to hear that someone has had 1st hand caregiver experience because it’s so painful, but it surely must give you a deeper level of understanding in your practice; what a benefit for your patients and their families. Wow! Three Dan namesakes, I think that’s a record. And I’ll bet they know a lot of Dan’s songs as well. Thank you, and keep up the good work. ~ Jean.
You bet! These experiences, though very difficult & painful, help us to strengthen our compassion, empathy & character. Thanks for presenting this forum. It’s very cathartic. RE: the kids loving Dan’s tunes: Yes, they really do! [A new generation of Dan Fans is born! LOL!]. My fave Dan song interactive family memory was getting the kids to sing the back-up vocals to “Over & Over” when I would [feebly attempt to]sing Dan’s part…what a hoot! :-) The legacy lives on! Blessings! Dr. Ron :-)
Jean, thanks for all that you did for Dan. He was quite the musician, poet and story teller. You mentioned in the XM interview that Dan had started to believe that love could not be found. (paraphrased) I’m glad that he was able to have you and a renewed belief that love can be a real thing in his final days. Music, money and fame mean little if you have to face your last days alone. Dan went in style by having all of those including you. Keep up the good work! I look forward to more of his music. Kerry
It was my honor and privilege, Kerry. Thanks. ~ Jean
Thank you, Jean, for all you are doing to help others. Dan did it with his music/lyrics (and so much more). You’re doing it with your selfless heart and soul. Dan would be so proud of you. I know he’s smiling down on you.
Thanks for that beautiful image, Dot. ~ Jean
Wow! Your blog couldn’t be more timely for me. I’ve spent six months sharing night duty at Mom’s hospital room. We’re thinking of writing a book in order to share our expriences with hospitals, and next, nursing homes. Just today, we expected Mom to be moved to a Nursing facility, but they are being inspected by the State and won’t take her after all. I’ll be passing your blog address around the family! Thanks so much!! Kathy Y.
Hi Kathy, the new US News & World Report issue has a list of the best nursing homes in America, which is also online at: http://health.usnews.com/health/best-nursing-homes.
I hope you find the perfect place for your mother.
~ Jean
dear jean,
~the depth of your strengh is beautifully over-whelming, yet i still pray for u & dan’s other loved ones who treasure him in your heart of hearts…his impact, though universal, still runs like a river through my thirsty soul!
…thanx for following the spirit of lov & caring enough to give back…may u be showered with countless blessings, yet, most of all, i wish u lov + tp
I’m too generaltionally challenged to be into texting… love + tp isn’t “love and toilet paper” right?
hi y’all,
…tp here, dan must be laughing, too, he really had the best sense of humor, yes!…glad to see his ‘Other’ legacy is being carried beautifully by y’all in your own humorous right! ~all kidding aside…the ‘+’ = faith + hope + lov,
;-) =(positive face)
(tp)= tim pastor
F.F.F.F.F.(F5)=(Fellow Faithful Fruitful Fogey Fan)
Thanks, Tim. ~ Jean
Linda – True Peace, I imagine, but toilet paper is important to have around as well. ~ Jean
…boy, if i knew my initials, ‘tp’, was gonna stir up such excitement, i would have been funnier…’True Peace’, however, is the perfect choice for our dear Jean & for all of us right now, Amen!
Dear Jean,
Thank you for the wonderful job you are doing in keeping Dan Fogelberg’s spirit alive in our hearts and minds. He would be so proud of the good work you are doing with The Prostate Cancer Foundation and Caregivers.org Bravo to you.Like so many others, it is hard to describe how much this man’s music has meant to my spiritual path in life. I still listen to his music whenever my soul aches and I am soothed.
Thanks, Inez. Yes, there’s no denying the healing power of Dan’s music. ~ Jean
Jean, my husband had his physical last week…and yes, had the “exam”. By a female MD, no less. Afterwards,he discussed his discomfort and embarrassment with me. I paraphrased Dan’s sermon. He said, “I know both you and Dan are right.” Anyway, he and I are glad he did it, and now he’s keeping track of all my upcoming, required tests.
….and hoping you’ll have a female MD, no doubt. ;-) Glad you’re both on top of it! ~ Jean
I am 57 today, and an emotional singer/songwriter. It was not until Dan passed that I realized that yes, I am mortal. I was concerned about cancer since I had prostate problems since I was in my twenties, and it was Dan that motivated me to go to the doctor and get checked out. Thankfully I had no cancer but I do have some peace of mind, thanks to Dan. His passing had a profound affect on me. When I think of his song “To The Morning”, I just want to cry. Someday there will actually be a way to say NO to the morning. Yeah, I’m negative I know, but that’s just me. What is meaningful to me, and what I consider positive, is that Dan paved the way for me (and many others I am sure) to be able to at least accept what destiny may hold, because it is inevitable. It also motivated me to more fully consider my spiritual side, because the talents of artists like Dan that moves our emotions emanate from a Higher Power anyway. Indeed, Dan helped me in countless, profound ways. Long Live Dan Fogelberg.
Long live love. ~ Jean
Thank you for sharing this wonderful resource. How I wish something like this had been available when I was caring for my mother, who passed from colon cancer in ’03. When I learned of Dan’s diagnosis, I felt that I knew something of what you would be going through, though everyone’s experience is different. My heart is with you in your endeavor. My husband and I saw Dan at the last concert of his last tour at Echo Basin. It was our fifth time to see him in concert. We miss him. Best wishes to you in your future! You are an angel!
Hi Mary, thanks for you kind words, but I’m no angel (that’s a movie, right?), just another human being trying to figure it all out. That Echo Basin concert was great, what a wonderful night; perfect weather….glad you got to experience it. ~ Jean
Jean: I got a lovely card from Margaret over the Holiday. She’s my neighbor and a sweet soul.
I wanted to offer you a web page I put up on my mother who just passed from cancer. I was able to play flute and guitar throughout hospice, and I think it helped the transition. http://www.pauladams.org/Mothersendoflifelesson.htm
The experience was one of the best of my life, and you’ll read that there were a few magical moments.
I love Roberts song for Dan. Always makes me a bit misty
paul adams
Hi Paul, what a lovely tribute to your mother. Thanks for sharing. I love Robert’s song too. ~ Jean
Many blessings 2 you Jean,this is a wonderful website,as the saying goes when you open your heart to the universe many amazing things happen and you have just done that!Peace to you
Thanks, William. ~ Jean
I will try not to write a novel but the thoughts that are racing through my head right now could fill up a library!I knew from the very first time I heard Dan’s music, way back in the Stone Age, that he would be my absolutely favorite artist. I got to see him one time in concert and felt as if I had caught a glimpse of what Heaven might be like. His death was physically painful and since I became a widow suddenly in 1990, I can relate to your experience, Jean, on so many different levels. I have been doing the role of caregiver for my 81 year old mom who has been diagnoses with 3rd stage dementia and, at times, I feel like I am alone is a room full of people. My siblings all live within a 20 mile raius and we basically see each other on a regular basis only at Thanksgiving and Christmas. The frustrations and sadness I feel on a daily basis can be overwhelming but knowing that you have opened this forum for the growing number of us “baby boomers” who have been put in this role is just beyond words. I have to admit that I was a bit jealous when I found out that you guys had gotten married because I was convinced that I was going to marry him but I can see how God put you together with him and now you are helping to not only carry his legacy on but give us strength. There is strength in numbers and this “family” of Dan and Jean Fogelberg fans will undoubtedly grow stronger and stronger because of your insight and love. Words will never be enough to thank you, Jean. We’re going to go “The Long Way” together.
Hi Becky,
My 81-year-old mother has dementia too. She’s always had a great imagination so it can get pretty freaky, but she has a great attitude and we laugh a lot. Yesterday she thought we had a dog riding on the car roof. !? Go figure. I’m just grateful she still knows who we all are. There’s no excuse for your siblings lack of help, especially since they live so close. I live 1,400 miles from my sister and parents but we have a good support system worked out and talk several times a week. I can understand your feelings of frustration, have you expressed them to your siblings? You’re probably doing a very good job, is it possible they think you don’t need their help? Or that they’re afraid they wouldn’t do as good a job? You know how complicated family stuff can be. But if they just don’t care to help, and it’s useless to bring it up, try not to let it add to your stress. You’re doing a wonderful thing for your mother, and as you’ll read from our caregiver stories, the peace that will give you when she’s gone will last the rest of your life.
As far as my marriage to Dan, hey, I’d have been jealous of me too (oo, that is so Spinal Tap!); Dan was an amazing man. But I’m glad you’re a part of the “family” now. ~ Jean
Wow. Having been a lifelong Dan Fan, I’m pleasantly surprised to find I’m now a “Jean Fan”. Both my husband and I have lots of “aging parent” stories, and we realize that someday our daughter will have to make difficult decisions for us (but not for awhile!!) Thank you, Jean, for once again being a gracious, giving spirit.
Thank you Donna, for your kind words. Here’s to many healthy years ahead of us! ~ Jean
Jean,
What a wonderful way to help those caring for others. Thank you for this forum for sharing our feelings. As my mother struggles with Alzheimers Disease, I like to think of myself as a “comfort-giver” in addition to a caregiver. With her disease comes fear and anxiety for her (and for us), and I hope in some way I can ease those feelings by providing comfort to her …. just as you have provided comfort to all of us.
Hi, Nancy. I read “Still Alice” by Lisa Genova, told from the viewpoint of a woman with Alzheimer’s, and my heart goes out to your mother and your family. My mother has age-related dementia, but it comes and goes. I can only imagine how painful it must be to watch your mother go through this, and how frightening it must be for her. My best wishes, Jean
Dear Jean,
You are giving to so many with this website; yes Dan is smiling on you! As an RN I see and feel the struggles of people in all stages of life and disease. Caregivers are angels and yes, they need to take care of themselves as they can be prone to illness and disease. You are providing n outlet and information needed by many. I am a lifelong Dan fan, right from the start. I never had the pleasure to meet him, but through his music I feel a connection to him. He touched so many with his gift of music. I wish you peace and good health as you move forward.
Thank you and God bless you!
Thanks, Lisa. High praise indeed, coming from a professional caregiver. Nurses (and Dan fans) rule. ~ Jean
When Dan said “u don’t want to be going through what I’m going through”, it struck me. The exam isn’t that big of a deal, I just wish he could have caught it sooner.
I care for 3 members of my family in various states of decline. To a certain extent it is not that big of a deal because it’s always been a part of my almost 50 yrs.
My mother/ dad yrs ago basically dropped dead when I was still a teen. Since then with others in my family I have often pondered if it is better to go that way or drag out. Almost everyone doesn’t have that much of a choice.
I struggle with only one word, “no”. My second set of parents require constant care and my ability to find a balance is always a concern. Guilt has always been a part of our family dynamic and they can use it as a weapon, even in their condition…
Oh man, Bill…50 years of caregiving! What a hero you are. I know, Dan and I often discussed which is a better way to go. But as hard as those cancer years were, we were so glad for the time together. I can’t imagine the pain of losing someone so suddenly, I’m sorry you had to experience that at such a young age. Guilt is a huge part of so many families, and such a strong motivator. Maybe you could use it for yourself? “Gosh Mom, I’d love to do that for you, and I will, just as soon as the pain meds kick in and I can walk again.” ? ;-) Hang in there. ~ Jean
Dear Jean -
The paragraph you wrote about the “strange time of life” struck a chord in me. It seems I could not turn around in 2009 without learning that another friend or family member was diagnosed with some form of cancer. Some of those people’s illnesses are thankfully in remission now due to treatments that worked; some people are still battling. I am 51 this year. With each day I see that my elderly parents will soon be undergoing big life changes as their health is declining, and my relationship with them will change as well as our roles inevitably reverse. Thank you so much for putting a voice to the concerns I have, for providing a place we can go to know we are not alone in our feelings and struggles. All the best to you, Jean. You rock.
Thanks, Laurel. Yes, 2009 was a really strange year for so many of us! You obviously have a good handle on the life changes we will experience with our parents. We all know it’s part of the deal, but that doesn’t make it any easier. Hang in there, and stay in touch. ~ Jean
Dan would be so proud of you. Thanks so much for sharing and helping. I hope it is as theraputic for you as it is for others who are going through this. I have been hit hard for the past two years with the deaths of loved ones. The hardest was the suicide of my nephew, a young man in the prime of his life. I hate to say it but I am still angry at him for doing it. He took the load off and put it right on to us but that is a whole different type thing. I feel guilty for being so angry at him. You are doing a very good thing and you are very brave to take this on.
Hi Amanda, I know exactly what you mean. Dan fought for every extra day of life, so I struggle to understand how anyone could forfeit their life willingly, especially a young person with a whole life ahead of them. It’s hard not to feel angry at them for leaving such anguish behind them, and it’s only human. But I guess we can never know what kind of pain they had to be in to make such a huge and irreversible decision. My condolences, Jean
Another beautiful example of love and goodness coming from a beautiful human beings life. Dan has blessed us in so many ways with his music and his gift continues in this new blog/website that you have created. It is going to help countless numbers of people. I already feel relief after reading your message as I am watching my mother who is in her eighties begin to face difficulties. I hope that you both feel the immense gratefulness that so many will have. Best Wishes
Thanks, Donna, I’m glad you found some relief here, and hope the blog will provide you with the answers you need when the time comes. And I hope your mother still has many good years ahead of her. ~ Jean
Thank you for everything you’ve done here. As I reminded my mother to take care of herself during the years she gave care to her mother, you have reminded us, and so much more. This is a wonderful resource. Many prayers & blessings to you….. and to us all.
Thanks, Paula. ~ Jean
This is a wonderful thing you are doing Jean. Thank you so much.
Thanks, Amanda. ~ Jean
“Don’t Loose Heart” is this new from Dan or have I missed it somewhere? Has Dan recorded it?
Hi Anita,
“Don’t Lose Heart” was a new song Dan recorded in 1996 for the “Portrait” CD Box Set. It’s available as a single at iTunes. Thanks for your question, I’ve added that info to the page. ~ Jean
As an RN and a life long Dan fan, I thank you for this website.
God bless.
Thanks, Beth. Nurses rule. ~ Jean
Well Jean, You have “done it” once again. I had recently been thinking of emailing you about your caregiver thoughts, as I am the primary cg for my 77 yo mother, who has been battling COPD and emphysema for years. And just as she has had to go to the hospital again with complications, Eureka! Here comes “Don’t Lose Heart!” I am already feeling a little stronger and more resilient than I did yesterday.
I promise to share my story (it’s a doozy) and can’t thank you enough for such tireless selflessness. This is a heartfelt and solid, rubber meets the road, example of Love… Thank you! – Hunt
Hi Hunt, Thank you right back. I’m sorry to hear about the “complications”, I know that can mean almost anything and I hope your mother isn’t in too much discomfort from them. She’s so lucky to have you. Yes, when you have time (ha!) please send me your doozy of a story. And take care of yourself. ~ Jean
Oh Hunt – I don’t know you – but know what you are going through. My Mom’s only 70 but has been a hard smoking gal since her late teens. Married at age 20 – had kids shortly thereafter – she’s been there for our family unconditionally – this last fall she had a big flare of her COPD and it was also H1N1 concern time.
She comes from a strong German background and rallied – and after some rehab is back home. Man it is so hard to watch – she’s on oxygen 24/7 but keeps smoking so sadly the episode in October is sadly going to be a dress rehearsal for the next time until she wears out. I’ll keep you and your mom in my prayers – I think I can safely say there is nothing you or anyone else can do for you to make you “ready” – but perhaps just a little better prepared.
Peace – empathizing with you. MH
Cindy, great information, there was also a story today on The CBS Morning Show on Caregiver Syndrome.
Thanks Cindy, I’ll check it out. ~ Jean
Below is the link to the Cleveland Clinic article-very informative and well-written.
http://my.clevelandclinic.org/disorders/alzheimers_disease/hic_caregiving_recognizing_burnout.aspx
I hope this will allow you to access the article.
~Ann
Cindy, thanks much for mentioning this article in your post. As I skimmed through it, I became more & more aware that caregiving probably played a role in my mom’s recent bladder infection. She has been caring for my dad since he suffered a stroke in Oct., 2007, and she’s put her all into helping him recover. However, 2009 brought additional stress-both good and bad. After living in rural Iowa on over an acre of land, my parents wisely decided it was time to move to the small town 6 miles away-where they have many friends, family members, not to mention a grocery store, local bank, pharmacy, etc. They were fortunate to be able to buy a fairly new, spacious brick ranch house, and sold their split-level home in the country without problem. They had lived in this home for 55 years, but fortunately, they were eager to move. All of the packing and moving was done without the help of a moving company-just their hard work and lots of assistance from us “kids”, especially my brother and his wife who live in the same town.
I could not believe how quickly my mom had the boxes unpacked and everything organized. Then, early in the fall, she re-painted 3 rooms and planted various shrubs and plants. She developed a bad cold and failed to let anyone know she was starting to have symptoms of a urinary tract infection. Finally, the symptoms became severe enough that she called my brother, and he took her to the ER. Fortunately, my sister-in-law is an RN, and they now live just around the corner from Mom & Dad. The simple urinary tract infection developed into a full-blown bladder infection. It took 3 hospitalizations and numerous urine cultures to determine the culprit bacteria. I’m not sure how many antibiotics were tried.
Finally, an antibiotic seemed to work. The doctors also put my mom on medication for a hiatal hernia and acid reflux disease, the symptoms of which I know had been bothering her for over a year. God Bless a wonderful female doctor who apparently kindly gave my mom a stern lecture: “Vivian, you’re 80 years old….you’re not 30 anymore!!”. I think it makes my mom a bit sad to realize she has to slow down the hardworking pace of her life, but she does seem to have come to terms with this.
She now takes a nap every day when my dad does (he’s had to nap ever since he had a stroke), and she more willingly accepts help from others. Last year was the first time she allowed my brother and sister-in-law to host Thanksgiving and Christmas at their home, which is a big step for her. She really enjoys cooking, and always prided herself on preparing huge meals for us, never forgetting to invite my widowed aunt and uncle. I’m sure it’s difficult for her to realize she’s aging, but I’m glad she’s learned to let up on some of the rigid expectations she was placing on herself.
Thank you Susan….
I love this site and yes have found comfort from it… AND …Dan’s music has been a HUGE help…
Dear Cindy, you have so much on your plate right now – I hope you’ve arranged for some respite. I love the image of your daughter signing Dan’s songs. Please heed our advice and give some thought to taking care of yourself. ~ Jean
Hi Jean! I’m glad that you are spending some time with your family. There’s no doubt in my mind that you have many friends in Maine, but I still worry about you being alone on your island up there.
Besides that, we are glad to have you thrown into the heat wave with the rest of us in the midwest, east coast & Great Lakes states, ha-ha!!! We can’t envy you having your cooling island breezes because you are in the same boat with the rest of us!
Enjoy your time with your family, you know how precious it came be. Take care.
Denise H (aka “Neecie”)
Our teacher has taught the ” [young] grasshoppers” well.
Jean, no worries. Enjoy these precious moments with your family. But take care of you and I know I’m preaching to the choir. I with you all peace and comfort. You are a very special daughter and sister. Talk to you when you are home. Love and Blessings-Susan
Hi Jean, thanks for checking in on us, we love hearing from you. You and your family are in our thoughts and prayers. Hope you and your sister can find some fun time together too catching up on some chick flicks at the movies together and what not. It makes me feel so happy & good inside knowing you’re all with each other right now cherishing one another. You are very blessed to have each other.
Sending peace, love, health & happiness your way to you & yours,
Karen
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Take care of yourself too and be good to YOU.
PS – The heatwave is here in the northeast as well!!!
Ditto to Denise’s concern – regarding being alone on the island -
yet you did admit to having “hermit” tendancies. I can truly relate to that one!
Hi kids, I’m back. Took a few days to catch my breath. Phew!! I’m out of caregiver shape. After four days of caring for Mom I started to notice those “Let me help you up” lower back muscles complaining LOUDLY. Even with my 3 mile walks, weightlifting, and a long rest, my body still was unprepared to jump back into the exertions of caregiving. And after only two nights of getting up 3 times to get her to the bathroom, I was feeling sleep deprived. I felt like an ex-Olympic athlete who finds herself winded after climbing a few stairs. And going from Maine (77 degrees) to Kentucky (102 degrees), combined with hot flashes…@#*%&!!! Let me just say, I was never so glad to discover an air conditioning vent in a floor before. But while I’m out of caregiver shape physically, I did find that my caregiver experience still held me in good stead emotionally. Seeing Mom so old and frail doesn’t cut me the way it did before Dan died. I guess once you’ve watched a loved one die you have a deeper innate understanding of how limited our time is. Also, I can’t help but see people in their 80′s and 90′s and think how lucky they are; how much Dan would have liked to have had 2 more years, much less 30 or 40. Life, huh? ~ Jean
Old Blue
On a starlit summers night
Looking at the face of the moon
Where no trouble seems to be
Her pleasant smile just for you
For in my heart this is true
Catch a glimps and look for yourself
The glowing moons fullness in the darkness of the blues
Reminisent of a better time and place
When you see that smile and space
Into the unknown far above
Old Blue a welcomed embrace
The blueist of blues may take you down
Until you gaze upwards that face surround
Troubles are only here for a time
Casts a new light engages your mind.
LKD Time Stamped. ”Grow Some Antlers!”
Not “came be”…”CAN be”! I told you it’s been hot down here, now I can’t even spell EASY words!!! My fingers got ahead of my brain!
Neecie
This was supposed to have the word “Smiles” inside the bracket. Must be some secret blogging code???
Anyway, smiles are being sent your way!
Hi Jeannie! Yes, this heatwave is for the birds, isn’t it? It’s actually fairly comfortable here today. The temp is in the mid 80s but the humidity is low so it’s pretty nice. Unfortunately, it is headed back to the 90s with high humidity next week! YUCK!
Actually, I can kind of relate to Jean’s hermit-like tendencies. I would be like that! If I had the choice of being alone or with a group of people, 99% of the time I would choose to be alone (or with only 1 person). I’ve often thought that I’d make a good recluse! Ha-ha!
Stay cool!!!
Welcome back, you were missed by all.
~Char
Hi, Jean,
It’s wonderful that you had this time to spend with your family. Even tho’ the circumstances weren’t the best, I remember fondly the tender time with my mom and siblings as we shared caregiving duties during her final months. And I’m sure your family was glad for your help.
I feel like I have a greater acceptance of death now. It no longer frightens me–maybe because it’s been faced. And, as you said, I’ve been made to realize that our time will run out, sometimes sooner than later. I focus on that a lot with my Tim–how young he was. But I’m trying harder to be glad for what we had and stop dwelling on what we won’t. It’s a shift in outlook, but I’m finding when I am able to think that way I am much more at peace.
Blessings,
Betsy
Welcome home Jean! With temperatures in Maine at 77 degrees, there are probably a lot of us who would be more than happy to pitch a tent on your beach! Ha-ha!
I guess that you shouldn’t get too used to it because it might be hot in Peoria too!
I’m glad that you got to spend some time with your family. I’m sure that it was good for you & I know that it had to be good for them having you “home” (no matter where it is, it’s always “home” if your Mom & Dad are there).
Take care & catch your second wind before you return to the steamy Great Lakes states!
Neecie (Denise H)
Hi Jean, welcome back as well. I know it was great to see your family for you and now I’m sure you are also happy to be home too. I can understand as well how you feel…it was much harder on me when I lost my beloved brother at age 48 then it was when my dad passed at 78 a few years later, it just doesn’t follow the natural order of things; but I still feel very close with them in spirit and know they’re out there. Peoria in a few weeks is going to be amazing and powerful for everyone! Dan will be shining down on all! Take care of that back in the meantime, wow, 3 miles a day! You are inspiring me to get my —- in gear!
Jean, Glad you are back home and getting a chance to take care of yourself. Hot flashes are tough enough, even in the best of circumstances… You are a trooper!
I was back east myself and visiting friend’s elderly parents. I was also thinking how lucky my friends are to have their parents alive and with them. I can see over the years how my friends are taking on more caregiving responsibilities and stretching themselves to keep their husbands, teenage children, and parents all in balance. As an outside observer, and reader of this blog, I can see more clearly the toll caregiving can take on families. I feel more informed and even smarter. I was able to refer friends to the DLC site and tried to be a better listener.I see more and more caregiving can take on so many different roles.
If anything I am trying to remember these days is that, “Time is so precious.”
Joyce
Jean, so glad you are back safely and have another volume of wonderful memories. It would have been wonderful if Dan had more years or if my friend Greg had more, I find myself thinking of my loved ones who have moved on. What I would not give for one more minute. Your parents are very lucky to have been blessed with you as their daughter. And I truly understand about the temps, here in Central Florida it has been in the 100s for over 2 months. I am counting down the days until fall, or at least cooler temps. Will be with you all in spirit in Peoria and cannot wait to hear about it. The new Living Legacy website is absolutely beautiful and I have shared it with all I know. Well done friends!! Love and hugs-Susan
Hi Betsy,
I agree with you on not dwelling on what we don’t have, but what we have or have had.
As you said, it’s a shift in outlook, we just have to realize it. This site provides so much insight, not to mention, really wonderful people. Thanks again.
~Char
Elizabeth,
Thank you so much for sharing something as truly beautiful and deeply moving as this. Your brother is truly a gifted spirit. Very sorry on the loss of your Mom.
~Char
Thank you for sharing this Elizabeth. This is beautiful and your brother is very talented. Sounds like your mom was the lucky one, to have two great kids such as the both of you. I hope her memories sustain you. Blessings, Susan
Joyce,
Love the “TIP” = time is precious, something for us to keep in the back/side/front of our minds, when things seem a little dark.
Thank you :)
~Char
Char, How is your husband and how are you? I have been off line and thinking of the two of you.
Joyce
Hi Joyce,
Thank you so very much for asking, things are going according to schedule, and that is all we are aksing for at the moment. I am completely humbled by you and everyone @ DLH, for the caring, good thoughts, and prayers.
Thank you again,
~Char
Hi Char, Sounds like your husband is on the mend :-) I’m hoping you will still be able to make it to Peoria…I would really enjoy meeting you in person!!
~Ann
Hey Ann, I am hoping to make Peoria. If there is one thing I can say about caregiving, it is to take nothing for granted, and to make the most out of every single second we have been given. Also, to hope for a better tomorrow, but to be just as happy tomorrow, with what you had today… I am certainly hoping to make the Memorial, and with faith anything is possible.
~Char
Hi Ann, so good to know you’re going as well. I knew Char was planning on trying to make it, but I wasn’t sure who else. I’m going also and bringing my husband and son who are both gifted piano players so I don’t want them to miss this wonderful experience. Hope we cn meet up too!
Karen
Greetings, Karen!! That’s right…your son, Rory, is the excellent pianist, who is so kind to Grandma :-) Is he still 10, or has he had a birthday recently? I would LOVE to meet you, so maybe they’ll have the sticky name tags that say, “Hello my name is” (I’m kind of joking, but kind of serious!!). I will be in Peoria solo Friday evening, because my husband will have to work until about 6:00 PM that day. However, he will be driving to meet me on Saturday…we live in eastern Iowa, so we’re not too far away. I’m hoping to see you and Char there :-)
~Ann
Hi Ann, yes Rory is still 10 and can play a few Dan songs on piano. He wants to learn Same Auld Lang Syne next, but he’s been having such a busy summer, he hasn’t been practicing that much. We have Grandma in respite all this month, b/c we are in and out of town all of August. His main passion is aviation though and he tells us he wants to be a pilot. He and Nana convinced me today to let him go up on a short plane ride at the local airport here in the Outer Banks where we’re vacationing this week, she and I went too of course. This will be his 3rd flight with Ben, our pilot, and Ben basically gives him a lesson every time and lets him help take off and land the plane. Rory gave all the flight instructions to air traffic control on his own for Ben when we were landing and taking off! He has been teaching himself how to fly from those flight simulator programs at home and he studies books he has on aviation, so the child knows a thing or two about planes and flying, well, way more than I!
Yes, I’ll be solo Friday eve as well at the pre-concert party, as my husband will have to stay with Rory. I hope they have a pool at the hotel for them to play in, but I forgot to check on that. It would be nice to meet up with each other that night!
Karen
Hello Jean & everyone, As I said already-I think the memorial weekend was a hit. Thanks to all who helped in planning and to those who participated. The dedication ceremony was touching….just the right amount of time with the weather so warm, and it was great to get a laminated copy of the program :-) I’m glad the hotel served such a great breakfast buffet, because that usually carried me through the day until late afternoon. Well, it’s back to reality-paying bills, doing laundry, etc….
~Ann
Ann, it was wonderful to meet you, do hope that someday we will meet again, for a longer period of time. The weekend flew by, it was a very moving experience for me. Stay well and DLH!
~Char
Jeff, I just hit the “like” tab, facebook style :)
~Char