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
THE CYCLE OF LIFE
There was a time when families lived together; if not in the same house, then in the same town or village. If a family member got sick or injured, they usually died at home surrounded by family and friends, and their body stayed in the house until their funeral.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.
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.
THE INEVITABILITY OF CAREGIVING
When we’re young we think we’ll never get sick or old. But it happens – sometimes suddenly, and sometimes so slowly we don’t even 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 in our life 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.
If this is your first time caring for a loved one, it can be daunting and scary. But you can do this. All that’s needed 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. If your loved one’s condition becomes too much for you to handle on your own, we’ll be here to support you while you’re finding a care facility and during the difficult adjustments that may follow.
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.
THE EMOTIONAL AND PHYSICAL TOLLS OF CAREGIVING
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 incredibly joyful experience.
The stress of caregiving can take a terrible emotional and physical toll on the caregiver. Depression, heart disease, hypertension, and Type II Diabetes are just a few of the many conditions common among primary caregivers. These conditions can be life threatening if left unchecked. At Don’t Lose Heart we want to make sure you’re aware of the hazards, the precautions, and the options open to you. We hope you’ll take the time to read some of the information and caregiver stories here.
WE’RE HERE FOR YOU
Sometimes just knowing that others have experienced the same nightmares, doubts, fears, and “selfish” thoughts and resentments can lighten the load a bit. Use the comment boxes at the bottom of each page to let us know what you’re going through. Before long you’ll have an answering comment from compassionate people who want only to encourage and comfort you, and when appropriate, to offer the wisdom of their own experience. We hope you’ll feel at home and learn from our mistakes, and that you’ll realize you aren’t alone in what you’re experiencing. And we hope you’ll come away feeling lighter and more sure of yourself in your role as a caregiver.
Be well, and don’t lose heart.
Guidelines: Everyone is welcome and encouraged to write here. All we ask is that comments be relevant to caregiving or the current thread topic, to keep the exchanges focused and helpful. Because of the high volume of spam comments we receive, your comments will not show up immediately, but usually within an hour. We implemented these guidelines to keep you, dear readers, safe and comfortable. Thank you for your understanding.
Jean–
I tried to go in here and vote for your thing. Had no luck. It’s probably ME.
Anyway, this is QUITE a noble thing your’e doing. Very proud of you !!!!!!!!!
Love. . .Pete
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Pete, thanks so much for trying – others have been unable to vote too – you have to have a Facebook account or Google account. Your words here are all the vote I could ask for.
Love,
Jean
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Good news in the news today:
Alzheimer’s disease seems to spread like an infection from brain cell to brain cell, two new studies in mice have found. But instead of viruses or bacteria, what is being spread is a distorted protein known as “tau”.
The surprising finding answers a longstanding question and has immediate implications for developing treatments, researchers said. And they suspect that other degenerative brain diseases like Parkinson’s may spread in a similar way.
The new studies indicate it may be possible to bring Alzheimer’s disease to an abrupt halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau.
Read the entire article at:
http://www.nytimes.com/2012/02/02/health/research/alzheimers-spreads-like-a-virus-in-the-brain-studies-find.html
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Wonderful news, giving us more proof that miracles happen every day. Being a researcher has to be very rewarding when something like this is found.
~Char
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This is GREAT news!! It would be great if they can stop “tau”. And, I heard President Obama has requested an increase in funds for Alzheimer’s research. Maybe this will be the tipping point.
Susan
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Fantastic news! As the child of 2 parents who suffered with this disease, this news is very comforting!
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Yes, yes wonderful news! I also read another article today that got me very encouraged as well: a graduate student discovered a drug all ready approved to treat skin cancer that reversed Alzheimer’s in mice. Although the lead researcher cautions that it doesn’t mean it will necessarily work in humans, at least they can begin trials on humans within months from now since it is all ready FDA approved and also has an acceptable safety record. I shared the article with my family as soon as I read it. Fingers crossed everyone!
http://www.cnn.com/2012/02/09/health/us-cancer-drug-alzheimers/index.html?hpt=hp_t3
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Dear DLH Family,
10 years ago this week, I became a survivor. I was diagnosed with NHL and was given 5-7 years to live. I just want to let CANCER and CHEMO know something. I didn’t like you the first time and I don’t ever want to see a rerun of you. I don’t miss the pain that you caused. The hours of praying to the porcelain god, the tears that you caused to run down my sweet mother’s face, the sad looks from everyone when they found out the news. As far as I am concerned Cancer and Chemo, you two make a very unlikely couple. Cancer, you invaded my body and tried to kill me. Chemo, you saved my life, but you made me very sick. I had no one at the time to help with my care but my mother. She deserves a Sainthood. She tried to remain strong and not cry in front of me, but at times it was very hard. I hate you both for that. As I await another scan in Feb. I am secure that nothing of you, Cancer, will be seen. I hope that I have shown you I am not afraid of you. My Momma isn’t either. She and I will tackle you and make a touchdown for the victory. Until the day that you can find your demise in modern medicine, I will stand up and fight all the way for a cure. Chemo, even though you can make souls so ill, you do have some good in you, but don’t get over confident…there are new methods everyday that may just lead to your demise. I can only hope. AND I WILL NEVER EVER LOSE HEART.
My mother is starting to show a few signs of dementia. She struggles everyday with the fact that I may have a re-occurrence and she will not be able to care for me. By a miracle, I found my love, Arlo, or he found me. It doesn’t matter…he cares for me, and he loves me. And he said that he would stand by me all the way. He even helps Mom out when she is having a little difficulty. She still drives, she still fixes me veggie soup when I am sick, she gets me little things from the grocery when she is out, and she would lay her life down for me. At 77 years old…young, I should say…she is the best caregiver in the world. She told me a few days ago that she hoped I didn’t have to order any M&M’s in the future.
) She is so concerned about my scan…as I am…but I feel confident. As my caregiver, she is afraid as she can’t stand to see me in the “Chemo State of Mind.”
Thanks for letting me vent my story to Cancer and Chemo. I think of all of you that are having problems and mine are small compared to some of you. I just hope that you find the strength and peace that I have from my DLH family. I don’t post too often, but I do read them all. We are all in this together and all you have to do is reach out and there is comfort waiting for you. Love to all.
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Bev
Your story is inspirational, funny, sad and most of all, one of victory. Arlo and Mom are true blessings to you, as you are to them.
You have shown the C& C Twins that you mean business, and will not back down, and give them their way. As for the M & M’s by the time you need them they will be called Z & Z’s and be made out of plastic! You continue to keep your fresh sense of humor about life, with all it’s ups and downs, and to me, are a true survivor. May all you days be filled with the love of your wonderful amazing family and friends. We here @ DLH salute you…. Bevster the Conqueror !
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Thank you so much Char. I really dread the Z&Z’s. I don’t care a lot for plastic.
)
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Bev, it’s always so good to hear from you – you’re so amazing, and so is your dear mother. And hooray for Arlo; hooray for love, in all its lovely forms. For those of you who don’t know, Bev wants personalized M&M’s served at her funeral, with her smiling face on them. Many of us here know about the dark humor that’s gets you through – it can seem wicked and inappropriate to others, but those of us who have been there understand completely. ~ Jean
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Thanks Jean. They are the most amazing people. I don’t want to offend anyone with my dark humor, but as you say, those of us who have been there understand. I don’t know when my scan will be, but I see the doctor on the 15th. I’ll update after everything is taken care.
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Just had a call from her doctor, and she said she will schedule the peg tube for tomorrow. She said she understands our stance on the matter. So I will hope for the best. I have a feeling tomorrow will be a long day. Hopefully not to long.
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Jeff,
I was reading about your mom’s need for a peg tube. I have some experience with peg tubes (my mom had one for a few months). I worked with severely mentally and physically handicapped students at a local high school and we usually had at least 2 students with peg tubes. It made a big difference in getting adequate nutrition into them.
It helped with medications (we crushed their pills, mixed it with water and put them in the tube) and it definitely helped with hydration. My mom aspirated, a lot, and developed pneumonia as a result. The doctor basically said “either a peg tube or she’ll aspirate again, develop pneumonia again and eventually die from pneumonia”. So, I agreed. The surgery is scary but once they make it through that, it will be much easier to get your mom on the road to recovery. She’ll get stronger and the therapy will be easier for her to benefit from and manage. You mentioned your mom had a few memory problems. My mom had full blown Alzheimer’s. I worried myself sick she would look down, see the tube, wonder what it was and pull it out. That never happened. We eventually had hers removed because she couldn’t understand she was getting liquid food directly into her stomach and she thought we were starving her. She would cry and beg for food because she wasn’t getting anything orally. Eventually, she would try to eat anything (like crayons, a latex glove, paper, etc.), so we switched to softened food and had the tube removed. You may have to remind your mom she has the tube and is getting food, at least in the beginning. As she feels better, she may understand and accept the tube without further issues. She may also improve enough to have it removed in the future. That procedure can be even easier (my mom wasn’t even sedated). Hang in there. The peg tube can make a big difference with food, medications, and hydration. And, it doesn’t have to be permanent.
Susan
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Susan,
Thank you so much to responding to Jeff, as soon as he mentioned the peg tube, my thoughts went to you and your mom. Your expertise here will be invaluable to Jeff, his mom and family, as they walk down the road less traveled. The amazing thing about DLH,is the thoughtful people that have been there before, and are here to tell their side of the story, thus helping the present caregiver in many ways.. Thank you again Susan
~Char
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Jeff, thinking about your mother today, wondering how she’s adjusting to the PEG tube, I hope the surgery went well. ~ Jean
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I am glad I have found this site. I have been a caregiver for both my Father and Mother. My Father died from pancreatic cancer in 1997. I have been taking care of Mom who has CHF and a little forgetfulness. Anyway, January 11 while at work, she had fallen outside and was found by a neighbor. She was barely breathing and had a slow pulse of about 15 bpmThey got her to the hospital and put her in ICU, on a ventilator and it looked bad. But every day she has been getting a little better. She is off the ventilator and now seems to acknowledge my presence and the rest of the family when they arrived. Her memory seems strong to, meaning she knows her name, how she moved to town in 1964,but she has speech problems and swallowing issues. The Dr’s think she has a good chance of making some what of a recovery if she goes to skilled nursing and work on physical and occupational therapy. The problem now is she has a feeding tube in the nose, and skilled nursing centers here will not take patients with that tube inserted. So I was given the choice, of let her go off to hospice without feeding tube which means basically starve till she passes, or do the peg tube operation, which itself has a slight risk of waking up from anastetic. I asked the entire family some ar CPN’s and RN’s and they say the peg tube is the best solution. At least she has a chance to make it to rehab. If not she will pass under anastesia (sp) in a peacefull way. I figure much better than laying around hungry waiting to die. I know if the roles were reversed she would do the same for me.
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Jeff, from what I’ve read, feeding tubes have their own risks and complications, so if her doctor and the professionals in your family say your mother should have the PEG tube, then it seems like you’re doing all you can do to make the right decisions and give your mother a fighting chance. You’re right, the anesthesia is risky, probably more so with her heart problems, but if she passes peacefully under sedation, well, it seems like a better way to go than spending all your time in bed with a tube stuck down your nose and no way to get your strength back. This is one of the most difficult parts of being a caregiver: making difficult decisions when you have no medical training. But it sounds like everyone you’ve talked to agrees that this is the best thing for her, so let go of any doubts you have; know that you’ve made the wisest decision for her, based on professional advice. And yes, she most likely would have made the same decision if your roles were reversed. I’m sorry about your father, I know that was difficult for you, but I’m sure you did a good job caring for him. You’re a good son, and you’ve done your job as your mother’s son, caregiver, and health advocate. Tomorrow the doctors will do their jobs. And we’ll be here, sending light, praying, and hoping for whatever is best for your mother. ~ Jean
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Dear Jeff,
Will be thinking, praying and sending you, mom and family good thoughts today, as you put your faith in the hands of those most qualified.
Please know we at DLH are here for you most times 24/7, and will do what we can to help you along this journey, and hopefully not so long of a day.
~Char
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Jeff – what a rollercoaster ride you are on. I am impressed that so many professionals are encouraging the peg tube. That is a sign that your Mom has a really good chance of recovery. I believe that each person decides in their own way when it is time to go, given the opportunity. If your Mom is getting stronger as you say, she sounds as if she has a will to live. I pray that she fights her way through the anesthesia and comes back to you. Many prayers for your & your Mom. Joan
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Hi Jeff. I am going thru similar experiences with my mom who is 86 and in a nursing home since July 2011. Lately it has become apparent that she is in late stage dementia. She can no longer eat solid food and so she is fed a thick liquid. She speaks a word or two when I visit, but that is about all she can get out now. She spends her days trying to get out of her recliner wheelchair…she can no longer walk at all. It’s a very sad situation and it haunts me each and every day. The nursing staff approached me recently about all the decisions I have to make now and that I may have to make in the near future. My hands were shaking as I went through each item and stated my wishes based on things my mom and I spoke about before the dementia, and what I think she would want. What a huge responsibility it is to someone elses life in your hands because they can no longer speak for themselves. Sometimes I wish I could run away from this responsibility and let someone else make all these decision, but there is nobody else so I am trying to be brave.(A tall order for this big chicken)! I have basically decided that I don’t want anything done to prolong her life when the time comes… no feeding tubes, no i.v. hydration, no hospital. All I want is for to feel no pain. I was concerned about the pain dehydration and and no nourishment would cause and the nurse reassured me that she would be given enough morphine and would not feel anything. That was very reassuring. So the bottom line is I have chosen hospice care when the time comes. She has absolutely no quality of life and I worry about the emotional pain she may experience each and every minute of her day. Your mom’s situation sounds like she has a good chance of a full recovery. I hope and pray that things go well for both of you. Mary
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Mary, I cried when I read that your hands were shaking as you filled in the form; I’m sorry your poor heart had to go through that. As you said, it’s an enormous responsibility to have your loved one’s life in your hands. Hospice was a good decision, and asking the nurse about the outcomes of some of those choices was wise, and the fact that you and your mother discussed some of these issues is great. I can’t think of anything else you could have done to ensure that your mother will be at peace and comfortable when her time comes. Good job, chicken.
Jean
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Thanks Jean! As you well know, being a caregiver is not for the faint of heart!
Mary
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Mary,
So sorry you had to go through all the decision making alone. You are very brave, and have taken hold of the situation, walked through it, and come out on the other side, with encouraging words for Jeff, and all of us.
As for being…chicken, maybe “of the sea” = tuna… but chicken, no way!
You will be in my thoughts and prayers as you deal with your mom’s daily struggles and care.
~Char
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Thanks Char for your encouraging words! You are also in my thoughts and prayers each day as you deal with your daily struggles!
Mary
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Mary, you have found the bravery that you need. I really feel for your pain. I am glad that you have made the decision for now you have a plan of action. I was so glad that I was not forced to make the same decision with my husband and my father. However, now you have strength that comes from making your decision.
A lot of us here are Dan Fogelberg fans, and very grateful to Jean for making this website. And, I am very grateful to Dan for giving us his songs so that we can draw strength from them. My favorite Dan-song is “Netherlands,” and it is because of the last verse: “Once in a vision, I came on some woods, And stood at a fork in the road. My choices were clear, Yet I froze with the fear, of not knowing which way to go. One road was simple, Acceptance of life. The other road offered sweet peace. When I made my decision, my vision became my release.”
I believe that making a decision does become your release, because now you have a plan. It doesn’t matter how important the issue, but deciding is the step that gives you courage to make another step. I pray that you are at peace. I hope that the lyrics from “Netherlands” will comfort you.
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Hi Jan,
Your words to Mary ring out so true, I too believe our inner strength comes from making a decision and acting on it.
DLH provides to all of us, no matter what our taste in music, an avenue to express our inner most fears, and to find strength from others who have crossed that path before us, or may be crossing it with us. In my life music is a comfort, for others it might be meditation, exercise etc. No matter how we find peace, it is a comfort, just knowing there are others out there, cheering us on, offering their best advice, and sending us out positive reinforcement to face the daily challenges of caregiving, thank you Jan for being here.
~Char
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Hi Jan, Thanks for your words of encouragement. I too prayed that I would never have to make this decision. My mom had to do it for my father and grandmother. She knew she did the right thing, but still questioned herself for years.I was the one constantly reassuring her that she had made the right decision! So here we are, full circle with me making decisions for my mom. I’m quite sure that this is what she would want because of her past decisions and from what we talked about over the years, but it is still a painful thing to have to do. I do enjoy listening to music… it is my escape. Dan is at the top of the list of course, but I have also begun exploring Gordon Lightfoots music. It was something I’ve wanted to do for years but was too busy listening to Dan! Lightfoot of course was one of the singer-songwriters who influenced Dan’s music, so I thought that might be a good place to branch out. I was right…it is phenomenal!
I am so grateful too that Jean created this website. Jean, Char, Karen and others have helped me thru this past year when I had to make lots of unpleasant decisions for my mom and myself. They helped give me the courage I needed and the reassurance that I was doing the right thing!
Thanks again! Mary
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What a beautiful website, wish I had had something like this to refer my patients’ families to when practicing Pediatric Palliative/Hospice medicine, I will definitely pass this along. A little history of why I’m on this ‘particular’ website. I was introduced to the music of Dan Fogelberg around age 15, let’s just say I’m alot older now. I listened over the years, bought CD’s and attended concerts, but his music and story became alot more poignant the day I read about his death in the Dallas Morning News. My mother had died two months earlier of complications after open-heart surgery- Oct 14, Dan died Dec 16, if memory serves.With the holidays fastly approaching I begin to transfer my grief over losing my mom, onto the memory of Dan. I stayed up all hours reading condolences sent to his website, and in some ways, this zany behavior helped me cope through the holidays-for a little while. As the year went on, I got a little weirder, felt a little crazier and acted like it too. In time, I sat down and began writing about the year intermixed with nostalgic stories and twists. The Year My Mother Died, a memoir, was released this year through Authorhouse. I leaned on my formal medical training for some of its insights, but much of it is written in tribute to those individuals who made a significant impact on my life in one way or another, chiefly, my mom. Dan Fogelberg is prominently featured in one of the chapters-a humorous tale I might add, as well as mentioned in other chapters.The book has a dual rhythm : the undertow of grief in that first year ( and if you’ve been there, you know what I’m talking about ) layered with themes and stories that allow the reader to laugh along. The book can be accessed through Amazon or Authorhouse.com or it can be viewed on its website: theyearmymotherdied.com, where it allows the reader to directly order.The book is not a handbook on grieving, rather an honest account of some of the nonsense I demonstrated during that period. I hope you enjoy and find a connection.
Sherry Scott MD
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Coming up on the anniversary of my Dad’s death (2.12.11) and Valentine’s Day will never be the same. I have no idea how to deal with this.
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Dear Mike,
Dealing with grief is a personal thing, that said, it is only one year since your dad’s passing, so you still have open wounds. This “first”, anniversary of his death, you probably will grieve as if it were yesterday. There is no right or wrong way to deal with losing a loved one, time does provide a bandage, if you will, of sorts.. but this is still so fresh for you. My mind wanted to run away when my dad died, for years I couldn’t think of celebrating/decorating for Halloween, as it was the date he passed. You may want to remember other “firsts”, that made you happy and take you to happier times with him. I know how hard it is, we at DLH are here for you, offering any comfort and advice we can, and gently take your hand leading you through this “first” journey.
~Char
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Mike, each of us finds our own ways of dealing. Valentine’s Day is a bad one for me too. And it starts when I see the first heart-shaped boxes of chocolates in the grocery store. In the past, each year I would buy a cheap little box of chocolate covered cherries (you know the ones, we gave them to our mothers when we were kids) and eat all of them within a couple of days. Then I’d be done with Valentine’s Day – I’d forego the candy aisles and on the 14th I’d stay busy and pretend it was a day like any other. But this year, my fourth Valentine’s Day without my Dan, I think I’ll bake a cake – a heart-shaped one like I used to make. I’ll make a big pot of tea in the afternoon and have a piece of cake and think about how lucky I was to have him in my life for the time I did. I guess this is progress; healing.
You will always miss your father, Mike, and that is as it should be. But you will find your own way to deal with his loss, whether you choose to power through the day, or honor him by doing something special: planting a tree, donating to a worthy cause, doing something nice for someone else, whatever. And I promise you, each year that passes will be a little easier. There is no standard schedule, you’ll just have to allow your grief to take it’s own time to loosen it’s hold on your heart. We’ll be here, let us know how it’s going. We’ll do what we can to help. ~ Jean
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Dear Mike – You don’t have to have a plan on how to deal with the anniversary of your Dad’s passing. Just be. Let whatever emotions happen, happen. As for Valentine’s Day, it is a day of love, right? You loved your Dad and he loved you. Snuggle that little fact close to your heart, feel the warmth and comfort it brings, and be thankful. Just because he is gone from this earth, does not mean your love for each other has diminished in any way. Valentine’s Day will never be the same – so true – but it can still be a good day – start a new tradition to honor your father. Maybe send some money to your local Hospice, etc. in your Dad’s name. I am sure he would approve. My prayers are with you. Joan
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Hello, Everyone, I had visited this site before, because I found the link while searching for a website of Jean Fogelberg’s about Hawaii. At the time I didn’t have a need for this assistance. However, my dad was having memory problems, and we just assumed that he was developing alzheimer’s. He had a palsy in one hand, and had been treated for back pain for years, but we didn’t put it all together. My brother and sister and I just encouraged my parents to move into an Independent Living place, which they did, in July. It was only a few months when my dad began doing crazy things, like forgetting where the bathroom was or wandering the halls at night. After evaluation, he was diagnosed with Lewy Body Disease, a wretched disease that is another form of dementia. His step had been labored for several years, but he could no longer hold himself erect. His body grew stiff. It wasn’t long before he lost the ability to have a conversation. All of this took place within 4 short months. I lost communication with my Dad in a very short time. We moved him to a nursing home and I could only visit about twice a month because I lived over 200 miles away. He always seemed to know who I was, or at least looked at me with a smile in his eye. My sister wasn’t so lucky. My dad continued to deteriorate until he was ever so thin, even though he would eat whatever you fed him. He caught a virus in the middle of the night, fever and vomiting, and the nursing home called my sister to say he had labored breathing and this might be the end. He died around 6 AM on April 12 before anybody could reach him. His frail body just couldn’t fight the virus.
We got past the death of my dad, knowing he was in a better place. He never would have wanted to live in that state, and we took comfort from that. However, then we came to my mom, who was almost bed ridden from back pain. Without the income that my dad brought in, she could no longer afford to live in the Independent Living apartment. Our family made the decision that we would be served best by having me move to where my mother and sister lived, and share expenses in a house with my mother. I had lost my husband to heart disease almost 15 years earlier, and I knew what my mother was going through. And, it put us in the same location so that my sister and I could take care of my mom together.
So, I quit my job, packed up what I couldn’t live without, and moved. My mom and I get along great, but I never realized what I would be giving up when I agreed to this. I lost my home, friends, church, job, library, thrift shops, and much more emotionally. I lost my time. I could no longer make a stop on the way home from work to buy groceries or go to the library. I have to be concerned with making sure that my mom has her meals. She gets a bath. The mail is brought into the house. The house is cleaned. I did all of those things before, but now I am on somebody else’s timetable. Now, don’t get me wrong, I am happy to take care of my mom, but sometimes I wish that I could just take a whole day and go from shop to shop just browsing. The tiny town that I live in doesn’t even have a library. And, although I didn’t mention it before, I haven’t been able to find a job in this new location. Luckily, the sale of my house has provided me with funds to last awhile.
The financial side was one aspect that we had not considered. We had worked up our plans based on their income at the time. I wonder how many caretakers consider it. If I had a family, I would not have been able to pick up and go. I could not manage mom on my own, and my sister couldn’t have managed it either. At least this way, we can both contribute. We each give up our time.
I guess you could say that I didn’t realize that the feelings that I had were typical of a caregiver. “I am happy to do it for you, but I really resent the loss of my time.” (In other words, MYSELF.) I don’t begrudge her the time, because I realize there may not be much time left. But, I still feel the binding of it on my soul. So, coming back to DLH and reading all kinds of stories, I feel better. I learned long ago that I can handle just about anything as long as I understand what I am battling. Since my husband died, I have finally learned how to be strong. That, and I finally learned to “Let Go and Let God.”
Jean and Char, I am amazed at the insight that you both have. I am amazed at the courage that the contributors have, also. So, I wanted to say thanks to all of you for just listening. I surely can’t discuss this with my mother. I would never do that to her. Thank you, from the bottom of my heart! I enjoyed so many parts of this website!
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Hello Jan,
It certainly sounds like you are the quintessential caregiver, you have given so much for your loved ones, I admire you. And now you want time for you, and YES, you so need it, and deserve it. As I read your story the similarities between your life and mine began to show up. I fully understand your need to regain you, the need to have a moment to browse through a shop, library, heck even a grocery store, without constantly checking the time, and rushing through everything you are trying to accomplish. It is not an easy task, caregiver, but it has so many rewards.
I try, sometimes desperately, to remember as I care for my 92 yr old mom, and at this time, completely bedridden husband, while attempting to work full time, it must be similar to what new moms go through caring for their children. I am sure my mom had some of the same moments as she raised my brother and myself in the 50′s and 60′s, a stay at home mom, no car, living in a very rural area and caring for us the best she could, maybe dreaming, at times of her younger “carefree” days, when we got the best of her, so here we are full circle!
We must try to savor moments of our old life, via web surfing, watching a great movie (at home of course), listening to music, whatever brings us joy and peace and by sharing with others our success and failures over the years. Never losing heart in the beauty of life, just trying to regain a tiny morsel of our “carefree” days, isn’t a bad thing, in fact, it is one of the essential things we need to continue on with our journey of caring. Jan, please rest easy knowing we are here for you @ DLH, and will try to help a fellow caregiver, care for herself!
~Char
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Just like I said, Char…. You have amazing insight. Thank you!
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Char, I don’t know how you do this and hold down a full time job! You are a Super-Duper caregiver!
Take care of yourself! Love from Mary
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Hugs to Jan, to Char & everyone else that is living in a similar situations at this moment (that can include me)! Wish I could give a hug to all of you in person. Love, Joan
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You just did Joan, hugs right back at ya. Wishing you, your mom and family a swift recovery.
~Char
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You found your gold mine for “caring and sharing”. All I can say is everything you’re feeling is normal-to me being able to express it somehow lightens the load. This site is sacred ground for me – Char and Jean and several others have been there with words of wisdom or “just” a virtual hug when I needed it. I’m so glad you found us – let us know how your journey progresses and make sure to take a little time for yourself when you can. (Easier said than done).
Hang in there Jan – and welcome to DLH <3
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Has anyone yet read Lisa Niemi Swayze’s new book on her caregiving journey through cancer with her husband, Patrick? It is a beautiful book that helped give me courage and hope that there is magic and joy to be found laced through the sadness, weariness and frustration of illness and impending loss. That pain and loss can be a transcendent experience.
Jana
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I just this morning heard about this book from someone else, Jana, so, two recommendations in one day – I’ve ordered it. I also read “The Time of My Life” by Patrick Swayze, his autobiography recounting his life, career, marriage, and cancer journey – it was a very good book. ~ Jean
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Jean:
I am so glad you’ve ordered the book. It’s very powerful. Also, have you ever read Melody Beattie’s book, The Lessons of Love? It is without a doubt the most wondrous book on grief that I have ever read. Her take on loss imbues the whole experience of losing someone with such incredible, indelible meaning.
Jana
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Jana, I finished Lisa Niemi Swayze’s “Worth Fighting For” last night – it was very good, and a fast, compelling read. Thanks for the recommendation. I was amazed at how similar our caregivers stories all are. So many of the things she wrote about are things I experienced, and things we talk about here on a regular basis. I smiled when, at the end, she talked about how moving on now is like learning to walk again, but with one leg. We talked about this very thing just 3 weeks ago here, with Meg. I wish Lisa well as she moves forward on her journey, she was a great caregiver to her Patrick. ~ Jean
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Jean:
When I was reading the book I was thinking of you and Don’t Lose Heart and of that very thing you mention, that her story and yours are superimposed, that your lives converged in a way, that you and I and so many others on this site have walked her path as she has walked ours. (I actually think you two even look a bit alike). I hope many others who have come to feel as if Don’t Lose Heart is their haven and their harbor will read the book and find the friendship she offers to those who are grieving and will grieve. It must have taken such courage to share such a private journey but I think she knew people needed to hear her story as much as she needed to tell it. I believe one of the most incredible things she said was: Grief is experienced on a cellular level. How absolutely true. It feels like an irradiation of the soul and the spirit.
And I really loved what you said to Marietta about waiting to see what marvelous things are in store for her. I got goose bumps when I read that. It is one of the most hopeful ideas I have heard and the perfect statement to make under the circumstances. I will look around me today for marvelous things!
Jana
PS Please consider, too, Melody Beattie’s book: The Lessons of Love.
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I will take both of your recommendations and read the two Swayze books.
It seems to me that only time I have the patience, is when we are in the hospital, which has lots of patients ! (sorry had to say that) I never seem to be able to sit in one place that long to read, but waiting in the hospital seems to me like the perfect time/place to start.
Thanks for the recommendations Jean and Jana.
~Char
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Happy New Year!
I had to write to tell you how close to home the “home page” of this website hit my life this past holiday season. While family gathered at my home this past Christmas, old pictures came out and I learned some things about the maternal side of the family. We came across an old black and white photo of a tiny, wizened old woman surrounded by men and women. I learned that the old woman was my great-great grandmother and the adults were her grown children. She was Native American Indian from Oklahoma and my white great-great grandfather married her when it was not culturally acceptable (considered to be “bi-racial”). Her “white” name was Mary, I wish I knew her native name. When Mary was widowed she went to live with her children, rotating among them periodically, until her death. When her daughter, Janie, my great-grand mother was widowed, she lived with my grandmother until her passing. This was in my lifetime and I remember her well. When my grandmother, Alma, became widowed, she came to live with my parents until her death in ’05. Now I am caring my for my elderly parents. The Cycle of Life, so well written at the top of this page, describes my family for the past 4 generations and maybe beyond! Learning this a couple of weeks ago has caused me to reflect on my feelings of being a caregiver. The days are still as long and sometimes tedious but I sort of look upon it as a Part of the Plan. Almost as if I was destined to become a caregiver…after all, I come from a long line of them. My hope is that my children will appreciate their heritage and be willing to care for me as well one day.
Thank you for the opportunity to share this with you all.
Carla
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Carla,
How wonderful to have found that precious photo. Your family tree has strong caring limbs, you are blessed.
~Char
It’s the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life
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Thank you, Char. I made quite a few pleasing discoveries about my family over the holidays…holidays that I had (shamefully?) been dreading. After Christmas, my daughter had surgery so I went to care for her for 5 days. I had the joy of peace and quiet and was even able to finish reading a book I’d started months ago!
May we all be blessed in 2012.
Carla
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What a wonderful family story, Carla, another great thing that can come from families being together with their elders – the old stories. There’s just something important and cool about knowing what you come from, and you come from good stock. My great, great, grandmother was Delaware Cherokee, and I learned that finding information about Native American descendants can be difficult (apparently, they weren’t a priority in some counties when the Census was being taken). I used Ancestry.com, it’s a good tool if you want to delve deeper into your family history. It’s also a good way to get in touch with more distant family members you’ve never met. ~ Jean
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Hello Jean!
I’ve been searching Ancestry.com for info on g-g-grandmother, Mary, since learning about her, to no avail. G-g-father lived in Arkansas and visited Oklahoma, meeting , then marrying Mary. You’re right, sadly Native Americans were not “counted” in census and many other documentations of our history. My grandmother told me once, years ago, that we had a Native American ancestor but she said it as if it wasn’t openly known or to be discussed. It was considered a family embarrassment to some members. My thought was, “Hmm, I wonder what Mary’s family thought of her marrying a white man”…possibly they were as displeased with the match! Despite the cultural difference, I was happy to see that Mary’s children cared for her all her life. My mother grew up sharing a bed with her grandmother (Mary’s daughter), who came to live with them when she became widowed. My grandmother told us of how her married family members all lived together during the Great Depression to pool/share economic resources and the women cared for each other’s children while some of the women worked in the fields (cotton farming on the coast of Texas).
I’m sure many people have very similar stories in their families. It certainly made me happy to learn of my heritage as a Native American AND a caregiver!
Blessings!
Carla
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For current caregivers visiting this forum, Jean provided a wonderful pearl of wisdom the other day – the oversized tote! I was a caregiver for my parents for 18 years. My “tote” lesson came from repeated unexpected hospitalizations of Mom and/or Dad. There I would be, overnight, or for days without some comfort essentials. I finally learned to keep a tote in my trunk permanently. It had aspirin, pen and paper, something to read, toothbrush and paste, quarters, sweater/wrap, phone numbers, list of my parent’s meds, Power of attorney and living will papers, and I invested in a second cell phone charger which was priceless. Re-stocking the tote after our crisis had passed became a priority, and back in the trunk it would go, ready for the next use. And when that time came again, I was so thankful for those little bits of comfort.
What I would have given for a forum like this when I was caregiving! The days and nights that I felt so alone in my journey, feeling guilty for being tired, feeling inadequate in not being able to make everything alright, learning by trial and error. Some days were like trying to walk blindfolded in a strange house! This site provides information, support, empathy, and humor, which can be in short supply for a caregiver, some days.
Jean, I recommend Don’t Lose Heart to my friends that find themselves to be caregivers, and I know it is one of the kindest bits of help that I can give them. My best to you, and thank you for your vision and willingess to help others.
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Hi Mary, thank you for reiterating very important items to include. I am going to pack my “tote” right now. I forgot about the aspirin-yes, very necessary because the hospital won’t give you an aspirin if you need it-the rules. I also forgot about the second phone charger-very essential. One more thing I can add-a sleeping mask like what the airlines give you. Sometimes ear plugs will work at night too. Yes, totally agree, it is a very alone journey many times with earth shaking moments of sheer, raw emotion and when we can finally stop crying there will come an overwhelming wave of love. Mary, you are wonderful. We are not alone now-we have this site.
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Mary and Melisa, thanks for the ideas of good things to have ready in your tote for unexpected hospital vigils. When you’re out and about with a person who has cancer in their bones, sitting for any length of time, especially in chairs or hard booths, can be painful. Stuffing a soft pillow in an over-sized cloth tote is discrete; you can just set it down before sitting. In the winter, folding up my long down coat worked very well for padding instead of the pillow. Thanks for recommending DLH to your caregiver friends, Mary – it’s helpful for them, and for us as well: more people means more shared wisdom and mutual support.
Happy New Year, everyone. ~ Jean
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Mary,
Your suggestions for tote-necessities was so helpful. I also have one near-ready-to-go but I’ll be adding some items you and Jean recommend. Melisa, I too found the earplugs helpful as well as the earbuds to my iPhone to listen to music (my relaxation technique). Thank you all. Once again, this forum is such a help!
Carla
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I was watching CNN Heroes last night and the first person I thought of was Jean. Jean, you have never given up on all of us out here that are caregivers, sometimes in mourning and in immense emotional pain, are having a good day but tomorrow might not be having our best day. Jean, you are a hero. I haven’t written on DLH for many months because my life has been pretty smooth for some time, but, I will never forget the intensity of being an hourly caregiver. Jean, you are here for us everyday. Thank you. Thank you too, Char, for continually being available to all of us even when your daily life is extreme. There is so much love from you both. If I had been more on top of the nominations for CNN Heroes I would have submitted both of your names. I hope a caregiver will be recognized as a CNN Hero in 2012, or, the person who developed this site (Jean). A Hero is someone who is changing the world one person at a time-this describes both of you. Thank you for being here.
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Melisa, that’s so sweet, thank you. I don’t think of myself as a hero, more as a wounded soldier trying to find my way off the battlefield; stopping to encourage other soldiers who are either heading toward the battlefield, or stumbling along just like me. I’m so grateful for Char who, even in the midst of her own battle, is here for all of us. This has been an unusually challenging year, with a lot of business stuff and decisions to be made, and any widow will tell you that you miss your husband in a whole different way during these times, which magnifies the other kinds of missing. On those days I dread answering the phone, checking e-mail, or even turning on the computer for fear of a new question, decision, or problem to deal with. But I know that on those overwhelmed days I can focus on what needs to be done in my own little world because my cohort Char is here at DLH, approving comments, sharing her wisdom, and giving comfort. So again, and always, Char, a big Thank You!
Grief is such a trip. I fully expected Dec. 16th to be difficult, so rather than sit at home, I accepted an invitation to my friend Rebecca’s company Christmas party. I woke up on the 15th (which to me will always be Dan’s last day, it just lasted until 6am on the 16th) and unexpectedly, and without bidding, my mind started reliving that terrible day, in technicolor. I got up and started moving through it, trying to keep busy. When I opened my emails, there were some heartfelt good wishes, and you know how a little kindness can turn on the faucet when you’re blue, so I went in and deactivated Facebook and turned off the computer and phone. It was one of those days you get through an hour at a time. The next night, the party started out awkwardly (naturally; I didn’t know anyone and since I spend most of my days alone, it takes a lot of energy for me to socialize and talk over a noisy room to make conversation). But after dinner, the band started playing – 60′s, 70′s, and 80′s, my favorite music eras, and it was bliss. I’ve always loved dancing, and nothing can turn the blues around like dancing to good, live music. (Dan and I danced on our first date; it broke the ice and remained a delight in our lives.) I was wearing a full taffeta skirt, and I must have looked like a puppet on a string; twirling and leaping around, oblivious and happy. We stayed until the end, dancing the last song (“I Want You Back” by the Jackson Five; listen to the opening notes of that song and just try to stay seated). Of course, the next day my 56-year-old knees were scolding me with every stair I climbed, but it was so worth it for a few hours of pure, unadulterated joy.
Back at home now, and there are e-mails and phone calls to be answered, but I’m in a better place to do that today. Not ready to re-activate Facebook, I think I’ll leave it off for a while. I know I still have to get through Christmas, and then New Year’s, and there will be more blue and red technicolor days ahead and beyond, but the knowledge that joy is still reachable, even if just for a few hours, is comforting and encouraging.
Thank you, Melinda, Mary, Mike, Evelyn, Kathy, Dorothy, Joyce, Laurel, and Joan, and everyone who “liked”, for your kind thoughts. Onward, ever on… Jean
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Sweet Melisa, your beautiful comments about DLH and Jean are rite on, as for me, you are way too sweet.
I thank you, Jean for your kind words, DLH is a privilege that I hold very near to my heart and soul.
So as we walk the walk, with help, some days the battlefield is far off in the distance, with just a few fires burning…. but there will always be those huddled there in need help, comfort, a kind word, or a hand to hold, and to me this is the miracle of DLH.
With love
~Char
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Dear Jean,
How brave of you to share your past week. You characterized grief well…a trip. So many aspects, coloring and affecting our lives in numerous ways. I’m so glad you went to a party and danced til you nearly dropped! It’s an exhilarating feeling to “let go” and express joy. In February 2009 I had finished chemo, had the first mastectomy and completed radiation…my hair was just growing back but I was still bloated from all the steroids so I didn’t venture out much in public, especially without a scarf or wig on my head. Lee and I were invited to a Valentine’s dance and our daughter, Jane Ellen, encouraged me to go and go without anything on my head…just my fringe of soft, newly sprouting cap of hair. We went, with Jane Ellen in tow, and I danced just as you described yourself….a twirling puppet on a string! I danced with Lee, with JE, with a group of girlfriends, sometimes alone…dancing for the pure joy of being alive. I hadn’t danced that way before and haven’t since.
DLH is a god-send. I think of it as a safe haven. I’ve been encouraged by all the poetry, humor and health tips. Thank you, Jean, Char and all at DLH.
Carla
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Jean and Char,
Jean, thank you for putting into words so very well the trip through the “day” and then the trip through the holidays. You said what I feel when I go through the day – and your description of the holidays is so on target. My “day” is November 14 and even just sitting here thinking of the date brings me feelings I try to keep in check. It’s strange how I can go through whole periods of time where I am reasonably ok and then boom – there the feelings jump out at me again. I’m not doing Christmas – anymore than I did Thanksgiving – I can’t give thanks or be merry yet. Perhaps later. For now – I’m just being.
Someone said -”You’ll be fine by next year” to me last year. I’m not. It’s been a bit over two years ago and I’m not fine. I’m not sure I’ll ever be “fine”. I’m not sure I want to be fine. It’s as if in being “fine” I lose that part of me – that essence of me that he gave me and that he changed in me forever by loving me.
In me – added to me as an essential part of who I now am – is a strength that was born of the dark times Bill and I went through on our voyage to his passing and that strength is nurtured and fed by the people here in this wonderful place of shelter and healing and love. Thank you for creating it for us and for being its’ keepers of the light to lead us through the battle and to heal us when we have come out the other side – as veterans of our individual wars. Without you it would be a far harder, more difficult and miserably lonely journey. With you it’s still hard as hell – but there is a hand to take along the way. For that I thank you with all my heart! My love, blessings and gratitude to both of you! Meg HG
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Meg, I don’t “do” Christmas either. I gather supplies for projects ahead of time and then stay busy. I agree, maybe later in life I’ll feel differently, I’m not ruling it out, but it’s very hard to imagine today. My family and friends have come to accept it, and no one tries to change my mind about it. I can’t believe someone had the temerity to tell you you’d “be fine” by any year! They obviously haven’t experienced this kind of loss. I do remember once, even before Dan died, someone in our family commented that my aunt, whose son was killed in the second tower on 9/11, should “get over now it and move on with her life.” I was shocked! I said, “If it had been me, would you be ‘over it’ now? Over losing me?” Now that I’ve gone through the loss of Dan it seems even more ludicrous that anyone would say those kinds of things to anyone. It would be like losing a leg and having someone tell you, “You lost the leg a year ago; it’s time to get up and walk on it now.” There are no prosthetics to replace a loved one. You learn to hobble about with any emotional crutches you can find and try not to fall in public. It’s difficult for others to see our struggles because we hide them most of the time – to them, it looks like we still have two legs. We can’t blame them, they have no idea what this is like and of course, unless they die before everyone they love does, they eventually will understand. It’s one of those weird trade-offs in life: if you’re lucky enough to live to a ripe old age, you will experience the loss of friends and family. The only way to avoid the pain of those losses is to not love at all, and what kind of a crummy life would that be? Here’s to love, loss, pain, acceptance, wisdom, and life. ~ Jean
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Jean, Meg and DLH Friends ,
Another sleepless nite for me, but somehow this came to me while watching of all things.. QVC! I hope you find it comforts you.
1 Corinthians 13: 1-8, 13: If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver my body to be burned, but have not love, I gain nothing. Love is patient and kind; love is not jealous or boastful; it is not arrogant or rude. Love does not insist on its own way; it is not irritable or resentful; Love bears all things, believes all things, hopes all things, endures all things. Love never ends; as for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. So faith, hope, love abide, these three; but the greatest of these is love.
~Char
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Char — I thank you for sharing this; it is a beautiful scripture. I think what I like best about it is the assurance that the love we feel for those in our lives who have been so hard to lose from this earthly plane will indeed never end. Love is the one thing we can build that cannot ever be destroyed by anything — harm from others, illness, death… nothing can wreck love. Love is the Big Victory, the purpose.
I so appreciate what you do here as Jean has pointed out. Best to you.
Laurel
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Hi Meg,
We all grieve differently, just as we all live differently. Some people might be fine in a year, but I have never met any. I think there are some folks that don’t know what to say when we lose a loved one, so they say something that will make us feel better, or so they think.
The holidays are great, but way to much pressure is put on us to “have a good time” to make like our life hasn’t changed, that things are ok, that we can cope, and put on a brave smile and continue on with life, even when we can not. Friends and family try to make you feel better, it’s only human to try to help someone you see hurting, but no bandage can cover the pain.
Having a difficult time this holiday too, husband in the hospital, Mom getting weaker by the day, and my puppy is just out of the hospital… all of this making me very uncomfortable thinking of the next week or so. But, my loved ones are still with me, whether in the hospital or home, and for this I am grateful. I will be thinking of you, and hope the day brings you peace.
~Char
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Char,
Your plate is definitely full right now, and yet you still manage to be encouraging and comforting to those who need you on this site. I thank you for that and want you to know that my thoughts are with you. The holidays can be tough for so many reasons. I won’t even try to wish you, or anyone else who is struggling or grieving, any holiday cheer. But I do hope you are able to have peace and some time for yourself. Thinking of you and others on this site.
Evelyn
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Thank you Evelyn for you kindness. While it is true there are a lot of negative things going in my world at this time, we will be ok. Spending time in the hospital with my husband this week, I started to feel less sorry for our situation. Walking thru the halls and seeing the faces of patients,their loved ones and most of all the children, made me realize how lucky we actually have been. I never envisioned my life, to take this turn, BUT must make the best of it while I am able.
So I wish you and yours and all our loving friends on DLH the happiest and merriest of holidays. We must never lose heart, it would be like giving up!
~Char
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I wanted to thank you for your reply, Char. Some days all a person needs is a little validation. I hope your struggles will ease. I also had a “aha” moment in reading the recent comments about the holidays. My husband has been gone for much longer..still feel the loss. I guess what I’ve struggled with is the expectation of everyone for me to go on and be okay with all the traditions and celebrating…especially my children. They are great kids but they didn’t really know their dad. My oldest is 19 and the youngest is 13 and my husband died 13 years ago. I’ve never “not done” Christmas and sometimes that has just been rough. Don’t get me wrong…I love Christmas, but I guess it would have been okay if I hadn’t once in a while. I have great faith but I guess I still grieve especially at this time of year because he died in the month of November during the time of the year that means the most to me. Thanks for all of you who taught me a great lesson today…
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Melinda, you have kids who want a Christmas like the other kids have, like our culture encourages us to have, and you fulfill that for them and always have. You are a good mother to them. They will never know the person you were to your husband; no one will ever see you the way he saw you, but that person is still inside you. It’s okay for her to grieve for him, for the gift of him that should have lasted longer. Don’t shut the door to that part of your heart, he will always live there. So do the decorations, shopping, gifts, carols; everything that is expected of you, and be happy for the joy on your family’s faces. And if you should ever shed a tear for him in front of your kids, what a sweet reminder that their mother loved their father, and still does. But don’t for one moment think that feeling grief at this time of the year reflects in any way on your faith in God or your gratitude for the birth of Christ. The only thing “Ho ho ho” has to do with “Holy” is two letters of the english alphabet. ~ Jean
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Thank you , Jean. Much love
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Hi Char. So sorry to hear about the extremely rough road you are traveling right now. I hope things simmer down soon and you can have a long stretch of peace and tranquility. I want to wish you and everyone else here a wonderful holiday! Mary R.
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Char, I hope you find some peace and comfort this week. You have so much going on, and yet you come here nearly every day to comfort others. God bless you.
~Mary H
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I second that, Char. Sending you a big HUG, and wishing you a good night’s sleep. ~ Jean
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Char, I third the above from Mary and Jean. Wishing you comfortable sleep and joy that you receive from those around you.
Who knew the power of QVC? You just may be on to something…
Take care. Joyce
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Thank you, Jean, Joyce, Mary R, Mary H, Melinda, and Everyone who has sent such wonderful encouragement my/our way.
There’s no place like DLH, thinking of you and sending out best wishes for you and your family, may the holidays bring you peace, love, health and much happiness.
Warmly,
~Char
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Char, Thank you.. and best wishes to everyone.
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I came here tonight needing to connect with my DLH friends as it has been awhile. And as I do, I find that Char, is having to handle similar issues. Char, I am holding you, your hubby, dear Mom, & puppy up in prayer. My heart is keeping you close.
My Mom has had a rough few weeks, but we got her through Christmas swimmingly. She was feeling so good she over extended. She had an active GI bleed today with chest pressure. We are waiting to hear if she has had a heart attack or not. She has been severely anemic and had a transfusion last week. She is weak & has had “vibrations & burning” for the last several months that makes it diffcult for her to sleep.
Yesterday pm, my step-daughter & 6 mo grandson were in a car accident, where the vehicle rolled front to back 3 times. Thank the Lord they are alive as they should not be. The baby is fine, but Mama has several cracked vertebrae. She is in a hospital 180 miles from home. I am 280 miles away from her one direction & 180 miles from our home in another, where my kitty is needing her thyroid medicine but I am not there to give it to her. My niece is expecting to deliver her 6th baby a month early. At least she & my Mom are in the same hospital! And I am having back problems once again – surgery is probably calling but not yet! I am also 3 1/2 months from retiring, but my family needs me now & my leave is very low.
SO,… I am asking for prayers and good rhoughts for our families, as I remember each of you. You are all angels and knowing you are at the end of this hospital cafeteria keyboard is a comfort indeed. Forgive any mistakes as I really can’t see the keyboard or screen very well without my computer glasses
May the season of comfort & hope be with us all this very day. Joan
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Joan,
I hope you will be able to do the same, and if possible keep us updated on mom, your daughter in law, and kitty too.
I am so sorry to read of the many difficulties you and your family are experiencing, and will be praying for good news for your Mom, and your DIL. Also just wondering is there anyone at home that can give your lil kitten the medication needed?
I think your back problems must be all the more painful due to the added stress in your life and sitting in the hospital isn’t helping, just being there makes my blood pressure take a flight upward! We do have many similarities, my family needs me at home, and trying to balance full time work with full time caregiving x 2, my mom is severely anemic and needs transfusions often, is so making me want to retire, but it is not possible at this time. I have faith that a way will be found so I try to make time for me each day to relax ( as I am doing right now
DLH and remember we are here for you Joan, hug, hug, and hug !!
~Char
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Joan, I can remember when “Tis the season” had a whole different meaning for me. (I know you all know what I’m talking about.) I’m sorry you have so much pulling you in so many directions, plus your own back problems. It’s time to prioritize – go only where you are most needed and don’t spread yourself too thin. Find a large carry-all and take a back support pillow with you for long spells of sitting. Three and a half months?! Hold on, it’s right around the corner.
I’m glad your mother rallied enough to enjoy Christmas with you all, I hope they can relieve her chronic pain, and I hope it wasn’t a heart attack and that she just overdid it, that wild party girl. Amazing, that your step-daughter and grandson survived, and now your niece is bringing a new baby into the family – that’s good stuff. So breathe, drop those shoulders, and be grateful for the blessings that have been bestowed on you this season. I love what you wrote about knowing we are as close as the hospital keyboard, that’s lovely.
You have a good name – my amazing Aunt Joan died on Christmas day. I was sad, but also relieved for her: she had said four weeks ago that she was ready to go, and she really meant it. She was 91 and had traveled most of the U.S. in her old green van. My cousin Tom was there in the nursing home with her every day; this was his first real caregiver experience and he did a wonderful job. And now we have one less member of our tribe, and the rest of us go on. This is life. ~ Jean
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Jean, Your aunt sounds like quite the adventurer. How fortunate to have had such a gem in your life. Glad your cousin Tom could be with Aunt Joan at the nursing home.
Take care, Joyce
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Dear JF;
You have my condolences; sending good thoughts your way!
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So breathe, drop those shoulders, and be grateful … wise words m’lady! We have indeed had so many blessings through the recent challenges. My Mom’s challenges are not quite over as she is continuing to have edema that is affecting her breathing & sleep. Poor baby – she has had only 1 good night sleep since she has been home. Her first night home with oxygen was a blessing thirty-fold!
Jean – I am sorry to learn of your Aunt Joan’s passing. It sounds as if she had come to terms with her circle of life, ready to find out what the next step will bring her. On our level of understanding, we are thankful that she found peace & rest and that the fighting is over. Yay for your cousin Tom! Another caregiver, another warm, loving heart. I hope he choses to see the beauty in Christmas day, and it becomes an even more special as he goes through life. Full circle, as we are all meant to be.
Love to you, Jean. Joan
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Joan,
Glad to hear your mom is home, although she still faces many challenges, it’s great she has such a wonderful caring(giving) daughter. I hope you will be able to take some time for you, and get that back of yours on the mend. Wishing you a healthy 2012.
~Char
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Hi Char – There will not be time for me for awhile again. My sister-in-law just called and said Mom’s hemoglobin has dropped by 2 again since she left the hospital. So now there is another bleed somewhere. The Dr. put her on coumadin last week. Went from great news yesterday, concern this morning this am to fright & frustration again this pm. Got to come home last night, but may be driving back today instead of waiting for the weekend. What a rollercoaster!
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Joan,
I’m so sorry that your mother is bleeding again. I know how frightening and frustrating that is. I also know you are probably exhausted. Try to get some rest when possible and know that many are thinking of you and hoping for the best.
~Evelyn
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Joan, Thank goodness your step-daughter and grandson were able to come away from such a scary accident. I hope your step-daughter will feel stronger and more comfortable each day.
You can only spread yourself so thin and be in one place at a time. Try and follow the advice that has been given to you from the lovely ladies. Sitting in a hospital chair can just weigh you down . Set your phone to remind you to move and take a walk even if you don’t want to…
Sending positive thoughts your way. Joyce
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Hi Joyce – Somedays it is so hard to do what is right for me, as I am sure we all know. It is wonderful to have reminders from all of you. My step-daughter has now discovered a dent in her head that has not been recorded by a physician, so we are encouraging her to report it. Thank you for your kindnesses as we go through these trials.
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Jean, I think that we, as caregivers, are ever-reluctant to view ourselves as anything but ordinary people plowing through extraordinary circumstances. People will try to tell us how wonderful we are and that they don’t know how we do it. We do it because we don’t have a choice. We do it because it’s all we CAN do.
I recently saw Sting on Ellen and she asked him how he liked being 60 years old and he said that it wasn’t as if he had any choice. Years advance and we age and we can’t do anything about it. It’s kind of the same thing with caregiving. Our loved ones become unable to take care of themselves so we take over for them. We don’t really have a choice.
As far as holidays go, my mother was always the stoic “life goes on” type so whatever was going on, we put the tree up and baked the cookies and wrapped the gifts…all the while having faith that next year would be better.
She took a turn for the worse right after Thanksgiving the year she died. I was dreading the holidays. Every day I was waiting for the call from the hospital. She wasn’t eating. She was practically comatose. Then, about two weeks before Christmas she rallied a bit and was able to talk to us again. She was very weak but still here. The visiting hours in ICU were at half hour intervals several times a day and she would encourage us to go home rather than hang around waiting for the next session. She asked me what I was going to do and I said I thought I might go and buy my tree. She asked if it was cold out and I thought that was a weird thing to ask. I said it was. She said after I got my tree I should go home and have tomato soup and grilled cheese sandwiches. So I did. She died three weeks after Christmas.
I’ve always tried to “do it all” at Christmas time. No matter what was going on in my life. It was very difficult for me this year. I started really late and didn’t even come close to “getting it done”.
Our tradition was always Christmas brunch with Dianna (my best friend) and then dinner with my family. Now that Dianna’s dementia has progressed so far, it’s hard to plan and everything was sort of up in the air. We didn’t really know our plans until the last minute because her husband works on the weekends and we didn’t know if he would need us to stay with her on Christmas day. Late Christmas eve, we spoke and he said that they would come to our house for brunch.
My best gift this year was when they walked in and Dianna had a real smile on her face. She didn’t look distressed or agitated. She walked in and put her arms out to me. She was calm the whole time they were there. She actually slept through us opening our gifts. This year, her husband gave me a card from her that said “For my best friend”…it’s been so long since I’ve gotten a card from her! It was a very sweet moment for all of us because I know how hard that was for him to do and he knew how much it meant to me.
“Celebrating” is such a difficult thing to do when you are grieving. And when you are a caregiver, especially if your loved one’s disease is fatal, it is next to impossible to find the gumption to even smile let alone celebrate! No one should tell you how to feel. No one should say “get over it!” It’s most likely because our grief makes them uncomfortable.
Jean, your analogy of the missing limb is spot-on! Ever since Dianna got this horrific disease, I have been feeling like I am missing my right arm!
My mother was an amputee and she would talk about that phantom feeling she would get in her missing leg. Sometimes she would rub her foot back and forth on the floor and say that her foot itches and she meant the missing one. When our loved ones are called to heaven, we still feel love for them. We still feel their “presence” even though they are absent from our lives. We keep them present by remembering them.
I wish you all comfort and joy and peace and love every day, not just in December.
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Dear Cindy,
I agree with the way you feel about caregiving, especially when these words are spoken, “I don’t know how you do it”?……….. we do it, period, just as you said. We do it for tons of reasons, first and foremost they are loved; a family member, a friend… etc. Those that have not yet been called to duty, simply can not understand all that goes into it, but it must be done, there is no choice, at least not in many cases. And then there is your mom, she must have been one brave woman, I love her advice to you, “go home put up your Christmas tree and eat tomato soup and grilled cheese sandwiches…talk about comfort (foods) and joy! She was a wise woman.
Your heart must have skipped a beat, when your BFF Dianna walked in with a big smile on her face, what a Christmas miracle you received this year, and her husband must have felt relaxed to be amoung friends celebrating.
Wishing you, your family and lovely Dianna a peaceful and happy year ahead.
~Char
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Char, you are too sweet. Thank you.
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Cindy, it does sounds like you had your own Christmas miracle – Dianna at your house and so calm and present, and the card as well. Is she on a new medication? What do you think reduced her past agitation and aggression? It sounds like her husband is finally settling into his role as her caregiver – it was so sweet of him to do that for her, and for you. I’m glad you had your best friend back for a day, what a precious gift. ~ Jean
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Jean, no new meds for Di. It was just for that day that she had that calm look on her face. It’s as if she knew that this was where she was supposed to be and she was safe and could be comfortable.
As far as her husband, he has always been attentive to her needs as far as looking after her. The stuff that comes up like her issues with eating or bathing he just takes in stride. He fusses over her and tries to fix her hair and puts lotion on her feet and picks out outfits for her and cuts her toenails! It’s the big stuff he can’t seem to get his head around. He’s so lost without her. But I have no doubt of his love and devotion for her.It really was a precious gift to have her calm and relaxed. I wish it was something we had more control over. The calm days are so few and far between that they are remarkable!
We had a rough week this week but I am alwaysgrateful for the time I get to spend with her. We spent a lot of time in the bathroom on Friday and I sit on the tub while she does her business and I sing to her for encouragement or I try to get her to say our names. I ask her if she’s my best friend in the whole wide world and try to get responses from her by singing verses of songs or making up songs.
Her son (now 10) is a music lover like she is and he likes to watch videos just like she did. We were in the bathroom and she said (in her normal voice which is rare these days) actual words. She didn’t sing them. She spoke them! I couldn’t make it out at first and tried to get her to repeat but she gave me the usual phrases she repeats all the time. Then she said it again and I realized she said “Every day…” I was beside myself thinking she was trying to tell me something. I said say it again “Every day..” she repeated. Then I said it back questioning…”Every day?…” She said “Every day…” “Every day?…” It took about three more times then she mumbled something I didn’t understand. Finally after me saying “Every day…” she finally said it so I could understand: “Every day?…” “Every day I’m Shuffling…” Her son had just shown me that music video on the computer for the millionth time earlier that day! I laughed ’til I cried and she had a smirk on her face like she knew she was being funny! She hears her son playing his iPod and miraculously “learns” the songs. There is still so much of her left and we get so caught up in taking care of her we forget to look at her as our Di!
I think we tend to detach ourselves sometim-separate the person and the patient. It’s a defense, I guess.
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Cindy, What a wonderful gift you received by spending time with Diana. I am glad you were able to maintain a tradition, even if it wasn’t exactly as your past celebrations. Best friends are a treasure.
I agree with your thinking on the “getting over it” comments. It is very disappointing when friends become uncomfortable around grief, or impatient. Adversity really tests friendships. An opportunity to realize who your real friends are, then know that those are the friends you want to be around. A little wordy, but I hope you get the gist.
Your mom’s conversation with you at the hospital is very heartwarming. Sounds like she was a mom looking after her daughter. Despite her being in the ICU, she was thinking of you and wanting you to leave the hospital and carry on with getting your tree. Also, to stay warm and have your soup and sandwich.
Hope that you find comfort in your memories at this difficult time for you.
All the best, Joyce
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Melissa, I agree that Jean and Char are heroes for guiding and supporting all of us who write to this site,even as they both experience their own personal challenges. Both of them respond in ways that are always kind, insightful, and empowering for the writer. We have all been touched by their words. Thanks to them both for all of their heart.
The CNN Heroes are so inspiring. I am in awe of all of them.
Thx for making the connection.
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Sitting here remembering Dan on this day…feeling for you, Jean. I, too, lost my husband 13 years ago. Life changes but goes on. My loss was different in some ways, a car accident but the loss is still felt. I’m grateful for a place to share those common bonds and am also grateful to Jean and her helpers for providing such a place. I hope the pain is subsiding some, Jean for you and for others who have suffered loss or are in the middle of the journey of care-taking. I’m currently taking care of my mother and my 4 children and the days are never boring. I’ve gained strength and hopefully wisdom along the way but some day are hard, especially during the holidays. May we all find peace and joy in the season….
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Melinda,
I am sorry for you loss, 13 years or 13 months, nothing is ever the same.
I agree with you about some days being harder than others, and find myself in one of those times at the present. Best thing to do is try to work thru it, gotta go straight thru
to the other side, as hard as it is, especially with the holidays fast approaching.
I will keep you, your mom and children in my thoughts, in hopes that you too shall find peace, love and less stress in the days to come.
~Char
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{{{Char}}}
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I’m thinking of Jean tonight too.
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I wasn’t sure where exactly to post so I picked here. This site has been such a source of support for me ever since Jean started it. I KNOW I’m not alone and have gained much love and support from so many here and was blessed to meet some lovely angels from here the past August. I’ve been trying to avoid/push back my sad feelings this holiday season (my first without my Mom) but it isn’t working. All the while I can hear Mom telling me, hey stop that-I’m fine and no longer in pain or short of breath…she had a very strong faith and feel she’s in a better place.
So I came here to share my sorrow and to read stories that inspire me. Thank you DLH!!
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Marietta, I’m in a blue funk today too, so close to the day Dan died, I just can’t help it. But it’s okay (and completely normal) for us to feel sorrow, especially around the anniversaries and holidays, and ESPECIALLY around the days that our loved ones enjoyed the most. You don’t have to try to avoid the sad feelings, welcome them in and then let them flow out of you again, as tears, if you feel like it, or a breath. Just don’t hold on to them. Each time we mourn our lost loved ones we’re saying, “You were very special to me, you are missed and still loved.” I think your mother would smile and tell you, “Thank you for your tears, my sweet girl. I miss you too, so much. Now do something to make us both smile.” ~ Jean
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Thank you! I know this is a difficult time for you too – but we are strong women and we will get through this and rise above like a Phoenix. <3<3<3
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Great advice Jean. Thinking of you, especially, and all the rest of us who were so deeply touched by Dan’s life and passing. This is a sad date for sure. Yet i am also choosing to greet this day with celebration as well. Thanking GOD Dan was on the planet, and left such authentic depth to (i hope) move generations to come as well. Peace to all this holiday season and beyond.
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Thinking of everyone as the holiday season approaches and how so many people are trying to deal with their feelings of loss. I find it takes more energy to try and push the feelings down rather than sit with them and remember and cry.
I knew that yesterday Dan would be on my mind and that I would being thinking of Jean and feeling my own bursts of sadness. Without any prior planning on Friday I pulled on my 2011 t-shirt from Peoria and popped in my heart earrings and went to work. I loved it when a student asked me about my shirt and I was able to tell him about Dan. This continued throughout the day…I was able to speak with pride about Dan and his accomplishments. My heart earrings always remind me of what a supportive group I am proud to be in. Take care.
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Joyce, Sounds like a great outfit, and the heart earrings touched my <3. Thank you for being part of DLH.
~Char
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Sweet Mari,
It is so difficult at this time of year, and your loss is still new. I do hope you take Jean’s advice and embrace those feelings. Thinking of you and sending out love and hugs, as the holidays approach.
Your Mom’ s faith has taken her to a place of light, and no pain.
~Char
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Thank you Char! You are a dear person to me :0)and to so many other folks that come here. <3<3<3
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Many hugs for Jean, Marietta, and all the rest of us here at DLH. Hard times to get through, yes, but yet so many treasured times to remember and hold close to our hearts. Use your imagination and picture us all standing behind you in a loving, supportive circle, no demands whatsoever, just ‘being’ together supporting, comforting & loving as the fires flicker and dance. You can find shelter … love to all. Joan
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I am picturing .. and I am joining all of you in the circle. Joyce
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Dear DLH,
You’ve probably heard this many times but I’m a caregiver led to this website by the music of Dan Fogelberg. I’ve been a believer in his music since the 70′s and recently heard one of his songs on the radio with the DJ mentioning the “late” DF. After looking at Dan’s website, I realized I’d missed the news of his passing due to my being in Methodist Hosp., Houston, Tx for supposed Guillain-Barre Syndrome. I’d become paralyzed from the chest down for many days and, as the paralysis was resolving, I was diagnosed with Stage IIIC breast cancer. Dec. 7, 2007 to the present has been a series of chemo, mastectomies, radiation, physical therapy and reconstructive surgeries.
In the meantime, my elderly mother’s health deteriorated as COPD and congestive heart failure were taking their toll. My dad (age 80) was her caregiver. Mother (age 78) was in the hospital more than out of it from last Dec til this March and my dad’s own health was suffering, physical and emotional. We moved them into an Independent Living facility but he lived in fear of finding her dead or being alone with her if she suddenly passed. Since I’m a nurse and their only daughter, my parents look to me for all help. My only sibling is a brother who will help with anything not health-related. Thankfully, I have a saint of a husband. He loves my parents as though they are his own. (He completely supported and cared for me through breast cancer, telling everyone, “WE have breast cancer”). Lee, my man, insisted my parents move in with us last April to care for them more conveniently. We gave my parents our master bedroom and bath, renovating to make it handicap friendly. Since they have been with us, both of my parents’ health have improved, physically and emotionally.
Since they are better, I find myself just now beginning to deal with my own physical losses and changes. After another breast surgery last July, I became periodically paralyzed again. (The dr’s now think I didn’t have Guillain-Barre in ’07 but Lambert-Eaton Myasthenic Syndrome. It accompanies cancer, in most instances). It’s taken 3 months to get out of a wheelchair and back to a semi-normal gait. I work full-time for a home health agency as an office nurse since I can no longer physically carry a patient load. It’s as if I’ve had no time to let the cancer diagnosis sink in, to grieve for lost body image & changes, change in marriage & intimacy, vocational loss & change, the loss of privacy in our home, etc.. I feel overwhelmed. Chronic insomnia from the chemo doesn’t help so my doctor suggests cognitive behavior therapy. Does anyone here have any input on that topic?
The original cancer was staged high since the tumor was large and invaded surrounding lymph nodes. It will show up again, it’s simply a matter of time. I turned 55 on Nov.12th and want to begin striking things off my Bucket List while my health is relatively good. Number 1 is seeing the Aurora Borealis, #2 is seeing New England in autumn, my favorite season. When thinking about doing these things, I am overcome with guilt. I feel selfish, then begin worrying about leaving my parents, job, etc.. A friend says I’m “programmed” to give and that I tend to put myself on the back-burner. Lee’s very laid-back and I’m Type-A…he says, “Let’s just GO”! How do I Just GO and enjoy myself while full of guilt? How do other caregivers handle this? On one hand, I recognize what it’s going to take (solitude, peace & quiet) for reflection and the ability to absorb the life changes of the past 4 years yet I feel guilty pursuing it. We live on the Third Coast and have access to a beach house on the Gulf of Mexico, just 20 miles from home but I feel guilty taking a weekend to myself. Help!
Thank you for having this website. I’ve read so many helpful things and now feel less alone.
My belated condolences to Dan’s wife and family. He was truly unique and gifted, as you well know. I now treasure my LP and CD collection even more, playing his songs on my iPhone daily and savoring his lyrics and music.
Carla
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Hi Carla,
As I begin my day of care giving and working full time, I had to write this short comment, you have touched me with your life altering journey of strength, caring and love. You are a truly amazing woman, who will be in my thoughts today.
To be continued….
~Char
PS: Aurora Borealis is definitely on my bucket list, as I live in New England!!!
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Thank you for the kind words, Char. I just popped in to read more of the helpful topics. The one about Sleep Aids definitely has my attention since I haven’t slept well since chemo. The advice on guilt has made an impression…as many times as I’ve taken my own pulse, it never occurred to me to talk to my heart. I did as advised, apologizing for not recognizing it’s faithfulnes and hard work.
Oh my, you live in New England!! How blessed you are! When I get to make that trip, I think my daughter would be a great companion. She adores eating lobster and, like me, hasn’t traveled the U.S. much. I’m blessed to have great, grown children whose company I enjoy. Hmm, makes me wonder if my own mother could say that…it’s hard being patient sometimes when she asks me the same questions day after day. She has no diagnosis of dementia or Alzheimer’s but the signs are frequent.
I must run…I’m also my aunt’s caregiver and medical POA. She lives in a nursing home and is wheelchair-bound. Today, the residents are going to Wal-Mart to shop and I must accompany her. Thankfully, my company is very understanding and lets me work around these things.
Again, this site is super and very much appreciated!
Carla
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Hey Carla,
As I reread your life story, I related .. taking care of me… um …not in my daily schedule either.
Loving good music that brought me here, you betcha….. connecting with “others” out there that know what I am feeling, hating, struggling thru, trying to maintan a normal life, work, cook, shop, clean…breath…………….um wait….Run Boy Run…..
So glad Jean quoted Cher… in “Moonstruck”, as “run boy run” is my quote from “Camelot” wnen Arthur wanted the story to be told, of a time and land know as Camelot etc, when all was lost.
Believe me Carla, do I need to say there are times that I wish I was running away from the hand that life has dealt…yes…But you Girl….you truly amaze me… how you do it all?
Please bucket list everything you might think you are interested in doing.. not for any other reason, BUT and its a big BUTTT,to do it, and to do it for all of us, that right now are finding it hard to do.. do it please and send us pics. Love, laugh and/… run… girl…..run… and live your life, you have done so much… have some fun.
With love and understanding
~Char
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Carla, of course you feel guilty about taking time for yourself, our society teaches us that the Mother Teresa’s are saints and the Paris Hilton’s are sinners. Anyone who gives their life over to the care of others is constantly told how wonderful they are; anyone who is completely self-absorbed is told how shallow they are. There have been very few Mother Teresa’s, and Paris Hilton may very well grow up to be a caring, philanthropic woman. What you have to do at this time, my dear, is find a middle ground. You must find the Mother Hilton in you – willing to care for others yet inward-looking enough to know when it’s time to say “Me, me, me!!”.
It’s in our genes to be self-absorbed, otherwise our species wouldn’t have survived long enough to start destroying our own environment (too bad wisdom isn’t in our genes), but some of us evolve to the point where that instinct is quelled in favor of the good of others. That is almost the definition of “caregiver”. You’ve done great things for your parents, obviously, as well as your Aunt, and that’s wonderful, kudos to you. Guilt about caring more for yourself than for others is a natural response to everything you’ve ever been told. But at some point you have to, as my mother used to tell me, “be your own best friend”. And not a “you’re pretty and wonderful” best friend, but a “who died and made you God?” best friend. The image of Cher slapping Nicolas Cage in “Moonstruck” just popped into my head: “Snap out of it!”, before you wake up and realize there’s no time or energy left for your bucket list.
If you absolutely can’t get past the guilt of caring for you, steer your guilt in a different direction – to your husband. That fabulous man who has sacrificed his bedroom and time with his wife because he loves you and your parents so much. Does he have to get sick himself before you’ll turn your full attention to him for a while?
You have a beach house 20 miles from your home – start with baby steps. Take that wonderful guy up on his “Let’s just GO!” and get away for a weekend. If your brother won’t dirty his hands himself, perhaps he’ll pay for Home Care to give you a reprieve. One weekend. When you get back home you’ll realize that everyone survived without you, and a few more weekends away will give you the courage to take that long-needed New England vacation with your man. Those of us who live there will have lots of recommendations for you!
This is it, Carla. When you’re taking your final breath, how great to be able to say, “I did what I could for my parents.” But how much more marvelous to say, “and, I kissed Lee under the Aurora Borealis.”
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Well Jean, you got my attention with the “Moonstruck” imagery! Hilarious! You are right, I need to snap out of it. All the years of putting children, parents, even my patients, before myself have piled up. Until the paralysis and cancer diagnosis, I never noticed how far on the back-burner I’d put myself. You know how there is always that one person in a family that’s the “doer”? That’s me. Jump on, grab the bull by the horns and ride it to the ground (guess it’s the Texan in me). Many well-wishers in ’07 said they were stunned by my illness, that I seemed to be one of those invincible people. I never saw myself as Superwoman but others did. Well, I certainly have no “S” on my scarred chest.
My parent’s sense of security rests on me. How do I change that or is it even possible? Any issue that arises, “Let’s ask Carla” or “See what Carla says to do”. Lee and I had planned to take a Colorado vacation this past summer, before my surgery, and my mom was panic-stricken. She’s a worrier by nature, every sentence begins with “what if”…drives me up the wall. We knew the cell phone would ring several times a day while on vacation and accepted that but, alas, surgery couldn’t wait. Two days ago I pulled out the road atlas to look at Bucket List spots and she began to fret. I think I’ll choose to be deaf for awhile.
Lee shares much of the responsibility with me, now that they are in our home, by solving issues while I’m at work. (Lee works shift work, which is stressful, so I try not to burden him unnecessarily). He epitomizes sacrificial love. We got a late start (marrying in ’95) and have no guarantee of another day. If I lived with him a hundred years, it still wouldn’t be long enough. He deserves more time and attention…I hadn’t looked at it that way.
Jean, your last comment spurs me ON…it would be the thrill of a lifetime to kiss Lee beneath the Aurora Borealis! I want to drive the Pacific Coast highway in a convertible with him and stay awhile in lovely coastal area (no “touristy” places allowed). I want to to see New England in autumn and eat fresh-caught lobster. The list goes on but, for now, baby steps it is. 20 miles isn’t so far and a weekend isn’t too much to ask.
Gratefully,
Carla
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Carla, to get around your mother’s fears it would be great if you could start slowly – get someone to come to the house an hour or so a couple of times a week (perhaps in the guise of physical therapy or something?) to let your parents get used to them and start to trust them.
You’ve switched roles: you’re the parent now and your parents, (especially your mother) are the children. Remember the first night your parents left you with a babysitter, or dropped you off for your first day of school? Your parents had to leave you, and had to let you go. It’s completely normal, otherwise they couldn’t have supported your family or had any time for themselves or with friends. The first babysitter I remember was a neighbor; we knew her and liked her, so having her stay with us was a treat.
It will be easier for you to relax if you know your parents are with someone professional and capable, and even better if they’re with someone they know and like.
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Carla; “ditto” on what Jean said! You are blessed in that it is not too late! I think we all understand how hard it is to just STOP and do something for you and Lee, but go for it Sister! You mentioned Cognitive Behavioral Therapy (CBT); I would find an hour (at least) every other week for this. I am a therapist so I am biased, but it can do wonders if you find the ‘right’ therapist to work with. They will also be able to help you with relaxation and ‘sleep hygiene’ to help you rest better. What a great daughter—take care of yourself so you may continue to take care of them. Stop in at DHL when you have the energy!
Lynn
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Thank you, Lynn! I have a sleep study scheduled for Dec. 9 so the therapist should have the results when I see her for my first appt. on Dec. 20th. The neuromuscular dr. and oncologist agree that CBT would help to better handle my stress and insomnia. The neuro doc has given me a sleep hygiene list of do’s & don’ts…very difficult for me to follow. Falling asleep to music is helpful to me but it’s discouraged.
My daughter, Jane Ellen, is a super young woman. She’s a social worker with degrees in Psychology and Christianity and has been after me for 2 years to see a therapist. “When?!”, I ask her! Another example of putting myself last, I suppose. But she is one of my biggest cheerleaders and always supportive.
Thanks again, Lynn. (You wouldn’t happen to practice in or near Houston, would you?). Sign me up!
Carla
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Carla, I so WISH I were in the mild weather of Houston!! (I practice in Indiana:) I hope you will make time to find a therapist. It will help your help your family because it will help you cope with the stress and insomnia. Had to laugh when you mentioned your daughter has been telling you for 2 years to see a therapist; my Mom NEVER listens to me:) Instead, she goes to her (and my) physician, who tells her the same thing I have told her. I think it might be just a tad bit of stubborness:)
One thing I always stress to my new clients, and anyone who is looking for a therapist–it must be a ‘good fit’ between you and your therapist. If you have seen your therapist 3-4 times and there is no connection; a good therapist will want to know and will help you find another therapist you can connect with. Studies show the most important aspect of successful therapy is the relationship. The intervention, theory, and treatment are important, but secondary to the relationship. Therefore, I always encourage people to advocate for themselves. Although, if your daughter has been after you for two years, sounds like we need to get you there first…..
As far as falling asleep with music, does it work well for you now? The list is general; if it works for you I would not have you change it.
Good luck and stay in touch!
Lynn
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Hi Lynn,
Thank you for the encouragement. The appt with the therapist is 12-20 and I’ve promised my daughter to give it a REAL chance, no blowing it off. I’ll have plenty of topics to discuss. The burdens are growing.
We just found that my father-in-law has been diagnosed with prostate cancer. Lee and I will leave to go see him (and my mother-in-law) tomorrow. They live 180 miles away from us and only 100 miles from MD Anderson Cancer Center…I want him to go to MDA for another opinion but he doesn’t want to. He says he’s gotten 2 opinions and both dr.’s say it’s “minimal” and don’t recommend treatment. I’d like to read the pathology report and find out the Gleason grade. My FIL is 83 and in relatively good health, thankfully.
Falling asleep to music has always helped me so I’m continuing it. Last night I fell asleep to Dan’s Scarecrow’s Dream….wonderful!!!!
Hugs to my encouragers,
Carla
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Hello! Thankfully, my FIL’s prostate cancer is very early stage and isn’t going to require treatment at this time. Interestingly, the urologist that diagnosed my FIL has prostate cancer himself and is undergoing treatment. His PSA was never out of the normal range…my husband, Lee, has never had an exam because he’s counting on the PSA as the best indicator of a problem. In discussing this diagnosis with Lee’s parent’s, I discovered that Lee’s maternal grandfather passed away from prostate cancer. Now Lee’s chance of a problem is much higher so I’m insisting on his visit to a urologist soon.
Preparing for the Christmas holidays has been more stressful than usual this year and I’m not sure why. My mother had a mild bout of pneumonia 2 weeks ago and is feeling better. So much so that she wants me to Christmas shop for her! This time last year, she was hospitalized and nearly passed away so perhaps she want to doubly celebrate this Christmas.
May you all be blessed.
Carla
P.S. Jean, you are close in my thoughts and prayers this week.
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Carla,
Glad to read that your father in law has early stage PC, so “watchful waiting” is the current protocol? As for your husband never having a DRE (digital rectal examination), I strongly suggest he do so, as you have recommended to him also. PSA testing is a must, but the exam tells the urologist so much more than just the blood test. Actually the DRE is exactly how my husband’s early stage PC was found. You are on the right track in making certain he has the exam. Great news about your Mom, this holiday will surely be one of celebration, love and warm memories. Try not to get stressed over all you have to do; it really doesn’t help get the work, shopping, cooking, cleaning, baking, wrapping done! Gee…As I type this, I am getting completely stressed too….so… let’s both try to relax and enjoy the beauty of the season, the music, good food, family and friends.
Wishing you all the best for a wonderful holiday.
~Char
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Thanks, Carla, for the good thoughts. Describe to your husband what your annual PAP Smear involves, then tell him to stop being a sissy and get the DRE. Studies indicate that the combination of DRE and PSA testing is more effective in the early detection of prostate cancer than either procedure is on its own. Just don’t let anyone push him into an unnecessary biopsy. As you probably know, most elderly men will die WITH prostate cancer (not OF it). As our species lives longer, cancer becomes more prevalent. So your father-in-law may never need treatment. But the fact that he has prostate cancer, and Lee’s grandfather died from it, should be a warning flag for him to be vigilant. ~ Jean
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Char, you described my days very well when you listed all the things we do to prepare for the holidays. No wonder we’re too tired to enjoy them. However, I’m finished shopping and determined to say NO to any outside-of-the-family requests (and those in the fam will be taken into consideration before I say yes). Working full time as well as caring for 3 family members is stressful enough so I’m getting better at saying no.
FIL’s PC will be “watchful waiting” and we think that’s appropriate. Funny how issues like this bring others into the light…how else would I’ve learned of the PC dx on Lee’s maternal side of the family? His g’father’s PC was advanced stage.
Jean, I think Lee has the picture now of the importance of the DRE and hasn’t put up the least resistance. It wouldn’t have done any good if he had…I’d drag him kicking and screaming if I had to.
I wish you all a very Merry Christmas and a Happy New Year. Thank you for your support, everyone!
God bless,
Carla
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