I can’t believe the serendipity of finding this website tonight. Like so many others, my deceased husband and I have been Dan Fogelberg fans all of our lives. He used to play the albums so much that they would wear out–made it easy for me to know what to get him for Christmas and birthdays. Our kids also grew up hearing the Dan Fogelberg songs, many of which he would sing to them at night in place of bedtime stories.
My husband died from brain cancer this past November. During her dad’s eulogy, our oldest daughter quoted the chorus from “Leader of the Band”, explaining how it was one of her dad’s favorite songs and how priviliged she and her siblings were to try to carry on their dad’s legacy. I decided yesterday, listening to some of the Dan Fogelberg songs we loved, to learn a little more about his life. I felt a strange sense that it might help me feel closer to my own husband. I got on a website tonight and thoroughly enjoyed reading about your remarkable husband. When I saw the link to your blog I was amazed that my search HAD actually yielded a source of help for putting the pieces back together. It is so fantastic that you have taken up this very important work.
Besides my heartbreak at losing my childhood sweetheart and husband of 36 years, I am reeling from the toll his brain cancer took on our lives during the past 5 years. Much of my caregiving in those early years consisted of searching for the latest treatments and trying to keep Tim upbeat. He loved music but for that first year, the music stopped while we tried to come to grips with what was happening. Tim fought his cancer valiantly, having two brain surgeries, chemo, radiation, as well as several new treatments that were meant to heal the damage caused by all the treatment.
Unfortunately, he never recovered mentally from his second surgery and during the last year and a half before his death, we were never able to have a real conversation. He was like someone with mid-stage Alzheimers. This development was unexpected and left us in a very bad place on many levels. Eventually, he suffered a stroke and became physically disabled as well.
Like others have said, I had no idea what was involved in caring for someone with a serious, life-threatening illness. There are so many scary parts to it, not the least of which are the exhaustion and complete loss of life as you knew it. Now that I have been through this, I want to be a help to others in that situation, who need comforting and support as well as ideas to make the time they have with their loved one the best it can be.
Thank you, Jean. Your caring has blessed me tonight, as it obviously has countless others. May you be blessed in return.
Betsy M
Hi Betsy, I am amazed by your emotional strength-that after your husband’s death just last Novemeber-you already want to help others. Bless your heart
I’m so glad you felt comfortable sharing your story on this site, because I think that talking about your feelings is an important step to take. Someone suggested displaying pictures-of your husband when he was healthy-around your house. I love this idea, and I think I’d include a couple of silly/humorous pics, if you have them….you will probably still laugh every time you look at those particular photos:-) Apparently music was a significant part of you and your husband’s life together; I know that I am not one to watch much television during the day, but I’m a happy camper, if I have music playing 
There is a website, http://www.pandora.com, that is free for your use. It’s easy to figure out when you get into the site, and I have set up several of my own stations-Josh Groban, The Moody Blues, Billy Joel, Jim Brickman, Dan Fogelberg, of course, and many others. I’m so glad a friend informed me about this website…..I hope you give it a try, as well!! It sounds like you have some great children. Do any of them live nearby? (Maybe some are still at home??). I think it would be great if you could all gather and talk about the pre-illness things you remember about Tim. Also, maybe you could decide-if you haven’t already done so-how you will celebrate certain special days (Tim’s birthday, Christmas, etc.) withought your husband/dad. Be assured, Betsy, that I will send some prayers and positive thoughts upward 
Now I have to head out for a walk. The weather is gorgeous here today, and a brisk walk makes me feel so good!! If you haven’t been outside recently, periodic walks would be my final suggestion….inhaling some fresh air, seeing beautiful scenery, bumping into other walkers/runners gives me a natural high. There are always parks/paths, if you live in a large city. Take good care, Betsy 
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Hi Betsy, Ann again!! Hey, I was so busy offering you suggestions that I never stopped to say that I’m SO sorry for the loss of your precious husband. And sorry for all of the agony that you, Tim, and your family went through the past 5 years. Grieve at your own pace, and cry, rest, etc. when you need to. My thoughts are with you
~Ann
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Ann,
Thank you so much for all your wonderful suggestions. I think they are very good. Indeed I do have MANY pictures of Tim clowning around–he was known as the life of the party WHEREVER he went! I’m smiling now as I think of poses I want to put up!!
I will definitely explore pandora website–sounds fantastic.
I do have children living at home. My son, his girlfriend and their 7 month-old darling little girl live with me temporarily, as well as my own 21 year-old baby, home from college. It helps a lot in many ways.
I have started exercising again, which I agree is amazingly helpful. I think you’re right about being outside and seeing others at play, also.
Finally, I heeded your last bit of advice first: I did begin moving at my own pace, taking it easy (hence my very tardy replies!) Your suggestion was just the catalyst I needed to do so without feeling guilty. Thank you for your caring.
Betsy
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I’m getting to each story, one by one. I just read yours today Betsy. I was moved, as I am by all the stories, even when I don’t comment. In the midst of the sorrow I felt for you as I read your story, I also have to say I felt gratitude as well, which I consider a gift I receive from many of you with your stories. I know every person’s experience is relative, and just because one story may not appear to have been as traumatic as another’s, that doesn’t mean that’s true. Yet somehow, reading some of these stories, I AM left feeling gratitude for not having to have experienced this, or that, that some of you have. And that HELPS me – feeling the compassion for y’all while seeing somewhere inside that I AM blessed in many ways.
And Laurel, I so absolutely feel that caregiving related to mental illness can be, and is, just as devastating as any physical illness one could deal with! I’m sure Jean and all others on this site would agree!
Although I chose to focus on the funny side of things mom says today in her demented state, in the back recesses of my psyche live the memories of her going though periods where she, for example, may scream at young health aids that if they ever have a baby she will cut it up into little pieces – or accusing me of stealing everything she owns – or even accusing me of having had an affair with her best friend (thinking I was my Dad at the moment). All of this I consider within the mental illness realm, and truthfully, more devastating to me at the time than anything going on with her physically.
So please share anything and everything that is in your heart re: these mental illness experiences. I know they would be welcome!
Dorothy
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Thank you, Dorothy. Your perspective is much appreciated. I so admire the strength of everyone who has ever gone through any of the health issues discussed throughout this site, but the situation of caring for and dealing with someone who is not only severely physically ill (such as with cancer) but has also experienced departure from reality (and not in a good way) is really a double and very jagged heartbreak. I wish only healing, comfort, and strength to anyone going through it.
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I agree with you Dorothy, that the mental illness of our loved ones can be very devastating. It’s hard to watch someone you had relied on become like a child and not be able to do much to help them feel better.
I’m glad you’re able to see ways in which you ARE blessed. That’s where I am today–trying to keep in front of me all the wonderful blessings my life with Tim brought as I deal with the pain of missing him. Thanks for taking the time to write.
Betsy
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Hello Betsy, Thank you so much for having the courage to re-live those very tough times in telling your story. In reading your message and Jean’s reply about Dan, I shake my head at the awful twists and turns both illness and treatment can take. I cannot imagine the pain of loving someone for so long and then having them mentally drift away from you for any length of time.
So far, we have not experienced Alzheimer’s in our immediate or extended family, but we have experienced prolonged and severe mental illness on both my mother’s and father’s sides in the forms of severe, years-long, debilitating depression along with episodes of paranoia and extreme angry outbursts, hallucinatory episodes, and worse. I grieve for the time you and your husband were not able to communicate well due to his medical issues. I am very glad you found this site and encourage you to come here often and gain comfort from others and also to enjoy the beautiful words section, the recipes, the inspirational items that will help you smile and feel some very good and healing energy.
I have hesitated to speak much on this site about the mental illness issues because I did not think they really counted as experiencing the illnesses such as cancer or heart disease (both of which we have encountered in my family, but so far have been successfully treated before requiring a huge amount of care giving). But for the past roughly 35 years I have seen loved ones temporarily turn into something they are not, have been on the receiving end of some very horrific and painful outbursts that come from the illness, have sat in a waiting room to hold the hand of a loved one when she came out of an electric-convulsive therapy sessions (shock treatment) which causes short-term memory loss, so I did a lot of repeating events of recent days since she could not remember them. Mental illness can wreak havoc in a person’s physical surroundings as well, and many times I have helped to clean out homes that, during the hell of the owner’s mental condition, had become unlivable. So I guess these experiences might be similar to dealing with Alzheimer’s or other condition that affects the mind, mood, memory.
In any case, I am glad you are putting the pieces back together. I love what Jean did in placing photos of Dan in his healthy and happy days all over their house. I hope you are able to remember the wonderful times you and your husband shared and that those loving and happy visions will someday overtake the painful memories. I hope you stay in touch with us and let us know how you are doing or how we might be of comfort to you. All the best to you.
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Hi Laurel,
I believe that mental health issues should be taken as seriously as other health issues.
You are/were a caregiver for someone with a “health” issue. It is just as demanding, if not more, just as stressful, etc.
On a lighter note, isn’t this site wonderful, so full of great ideas and inspiration. Jean is truly a gift to all of us.
Stay well.
~Char
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Thank you, Char. I am also very grateful for Jean’s efforts here. I find a lot of healing, understanding, joy, and inspiration on this site from all the wonderful contributors.
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Hi, Laurel,
You are so right about the good and healing energy that comes from visiting this beautiful website that Jean began out of her caring. It is so filled with LOVE!
I am very glad you felt able to write about the illnesses that have occurred in your family. You and your loved ones have been dealing with some very debilitating issues for such a long time. You sound like you have been a wonderful caregiver. I hope things are good for you right now.
I agree with you about Jean’s pictures of Dan throughout their home. I believe I will display some of Tim more prominently. That will be a great thing!
Thanks so much for your good wishes.
Betsy
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Hi Betsy,
Hoping that you have started to heal, this site is just wonderful for all of us to help each other. Just imagine you and your husband’s love for
Dan brought you here. It’s just so amazing that the music he gave us, lead us here and along with Jean, has given us this unique opportunity to heal together, learn together, and cope together. Many good thoughts for you today,and looking forward to hearing from you again.
Char
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Char,
I agree with you–this site and it’s origins are so amazing. I AM healing–the tears are flowing now, which I know is good. Lots to deal with after long times of caregiving. Thank you so much for caring.
Betsy
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Betsy,
So sorry to hear of the loss of your husband. It sounds like you both had a beautiful life and thank you so much for sharing your story. I hope in time the healing starts and your memories will be your source of strength. As I like to think, those that leave us physically, will always be with us spiritually. I have to believe in that, it gets me thru the rough stuff. that and finding this great site, if for nothing else than some days to just read others thoughts and realize I am not in this game alone. Blessings!!
Susan
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Susan,
Thank you so much for taking the time to write. I have been impressed so many times with the kindness of strangers as Tim and I went through this journey. I am so encouraged to see it continuing. As you said, it brings much comfort. Hope you are being blessed in your healing.
Betsy
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Dear Betsy, welcome, and thank you for sharing your story with us. As often happens in reading a new story, I find some wisdom, or something to be grateful for. During one long hospital stay, Dan woke up one morning and didn’t know me. It broke me. I’d steeled myself for the possibility of losing him, but I remember crying in the hall and saying to myself,”Not like this, not like this.” I had no idea that this memory loss, along with some paranoia, is common when a patient is on strong pain killers. I was so grateful to the head of the nursing staff, who came to me and told me that his own mother hadn’t known him for a few days and had said some terrible things to him. He told me it was most likely temporary and Dan would be back. That gave me such comfort and hope. Thankfully, it only lasted a day and a half, then my Dan was back.
I can’t imagine going through that for a year and a half, or in cases of Alzheimer’s, even longer. Those times of intense stress are burned so indelibly into our minds that, once our loved one is gone, we have a hard time getting back to the “good times”; the days before the diagnosis. After Dan died, I printed photos of a healthy, happy Dan and placed them in small frames all over the house so I could kick-start the memories and force my mind to remember him the way he would want me to remember him. I know it was difficult for friends who visited me, seeing Dan all over the place, but it was something I had to do. The photos are still up and now friends are drawn to them, and coo, and I know that it’s working for them too.
I’m sorry you had to lose your Tim twice. I hope you will find your way back to good health and good memories. Give it time, and be gentle with yourself. Supporting others in the same situation will be good for you, as supporting you is good for the rest of us. ~ Jean
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Jean,
Thank you so much for your beautiful reply to my story and for sharing part of yours. I feel so blessed to have found this site. You and the other caring people have helped me to feel less alone in dealing with my heartache. I am still in that foggy, slow-moving place, but can see signs of wanting to return to life. I agree with you and some of the other posts that reaching out to hurting people will help to bring some peace and comfort into my world.
Betsy
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