Dementia and the grieving process: How are you coping?

Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war with brain cancer and a few years ago lost my mother in law to dementia. I have heard Alzheimer's referred to frequently as 'the long good bye'. I was my wife's primary caregiver for her 14 years and I, too, felt I was on a emotional mishmash. It is a struggle as you point out and few, other than those who have been through it, truly understand. Very few did in our case that is for sure.

Coping, as with grief, is a highly individualized experience. I was misled into believing grief followed the 'stages', which are so often touted. This made my personal journey in grief all the harder as I do not experience it anywhere near what the books and 'experts' forecast.

My wife and I were married for 41 years and nothing prepared me for many of the feelings I now have in this different life. I do give myself permission to simply have my feelings -- and follow the path as I am experiencing it. I also have a mantra taped up by my desk which says "Courage does not always roar. Sometimes it is a quiet voice at the end of the day whispering 'I will try again tomorrow'. My father was an alcoholic so I also firmly believe 'one day at a time' is a solid way to make your way through grief, but that, as I said, is just me.

Expect an emotional roller coaster and know that no matter what you are feeling it is the right way for you to feel!

I look forward to your staying in touch and asking any other questions you might have. I hope I have helped and not hindered.

Strength, courage, & Peace!

Thank you Scott! You have helped....it's just good to know that I am not alone. I know I am not alone, I have a precious Savior Jesus by my side, a loving family, and dear friends. I just feel alone

@bl2016 I agree. The feelings of isolation when caregiving for someone with a chronic illness can be truly overwhelming at times. It was one of the most challenging parts of being a caregiver for me. It was that isolation that actually led me to seek out a forum and I found Connect. Welcome and good to have you here!

Strength, courage, & Peace

I wrote several time over the past 18 months. My husband, age 87, has finally been placed in the Memory Unit in a Care Center. I just could no longer take care of him even with the help of my daughter. He was having hallucinations and delusions that were very difficult since then triggered aggravation toward me, and nothing I said or did helped. We have been married 62 years so when he started continually accusing me of seeing other men, etc., I found it very hard. It was very difficult to place him in a Care Center but it is finally becoming easier. He was in a Senior Behavioral Health unit for over two months before we were finally able to get placement for him. It is 45 minutes from our home, but I try to visit at least 2 -3 times a week. He is beginning to accept that and no longer asks to go home with me every time I visit. He dozes off most of the time I am visiting, but I hold his hand and try to help him feel love and wanted.

This was the hardest thing I have ever done. He is slowly slipping away and only once in a while do I see the smiles that he was always so free with. He still knows me and our four children and talks about them, but doesn't remember that they visited him the day before or that they are working during the week.

But like Scott says, "One day at a time". I have lots of support and we have our own little "support group" at church as each Sunday I discover another of the women have previously gone through the same thing. I knew their husbands had died but didn't know all the details at the time. We hug and console each other and enjoy coffee and treats either after the first church service or before the second service. I was very active in church and local groups before my husband was diagnosed 18 months ago, so it is helpful to get back to attending those events again.

Support groups are great and I highly recommend you try to locate one in your area that you can attend. They usually meet for an hour and have lots of ideas to help you cope with your problems. Ask around at the Care Centers and they often host them.

Ruth

Hi Ruth @rmftucker Nice to hear from you, but I am saddened at your change in circumstances. I can tell from your words it is a very hard part of the path you are on with your husband at this time. It seems each time we turn some corner in caregiving we find a new, long street ahead of us rather than a comfortable park!

I continue to wish you the best!

Hi Ruth,
That's so amazing to be married for 62 years. My husband and I just got together in our 50's, and he became ill just 2 years after we met and now is terminally For another 2 years we thought he would get better after rounds and rounds of chemo and stem cell transplant and more chemo, So we kind of never left honeymoon stage before we were thrown into our journey with lymphoma. We were full of hope and dreams, like teenagers, only with adult children. Through the years of treatment we were hopeful. Hopeful. What a word. It's meaning changes in the grieving process. Since diagnosed terminal, my heart began the grieving process, slowly, daily, quietly. To myself. But so painfully. Each day, trying to hold on yet at the same time, doing what seemed so unnatural, letting go. But I had to, my counsler helped me, my friends didn't understand. Letting go doesn't mean taking big steps I found out, just little steps of doing things for my own well being, which I kind of forgot about. I had to accept that it was ok to feel lost on same days. That it was still important for me to connect with others, especially with others who understand. Grieving with chronic illness can have very lonely days. I have to be careful not to feel too lonely. I see a counsler regularly, every 2 to 3 weeks and that helps. I have a palllative care nurse I can talk to too. And my doctor. Which reminds me to take care of myself too. Sometimes even writing small attainable daily or weekly goals helps me . I try to keep it simple and sometimes I have to push myself to get motivated to do regular tasks. When I get like that, I know its time for a break. A carers break. I hope today and each day gets a little easier in some way. What a wonderful life to have shared it with someone for 62 years! And there is still today. Wishing you a day of peace. M.Nina

Thank you, M. Nina, for your kind words. It has been a real change the past 3 - 4 months since we had rarely been apart more that 5 or 6 hours the past 20 years. Before that I was teaching elementary school and he was a over-the-road driver so was gone for at least a week at a time for over ten years after our family was grown. I was able to keep myself busy then and we very early decided we needed to visit by phone every day, so he scheduled the calls to be about 9 p.m. so that I would be home from evening activities that I needed to attend. That kept us going, so this is a different adventure. But he is adjusting to the Care Center and they are so attentive to all the clients needs. He had a little "spell" yesterday just after I arrived. Blacked out for a short time while they were trying to bathroom him. Really scared the attendants and nurses, but I assured them he had had several episodes over the past couple years, and I though it was probably another "little" stroke which MRI had revealed over a year ago. When the nurse came in and asked him to open his eyes, He said "Why, I know what you look like." so we knew he was his normal joking self again.This is the first they had seen since he was placed in care in middle May. He is always so tired after and slept most of the afternoon then, but was back to "normal" today. I just have to share the good times. It helps.

Best wished on your journey and enjoy every day as much as you can.

Ruth

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Hi, my husband was in ICU after a stem cell transplant and we were told it's time to call the pastor and family in, well as we waited for him to pass, hours passed, then days, then weeks, when he was discharged he was told it was terminal with 2 to 4 months to live. This was August 2015. He's still alive, angry and at times full of self pity, grief has been with me a long time and it battles with my nature to appreciate life on a daily basis. Grief and death seem to have just moved in , hanging in the shadows. Affecting my husbands moods , well, he's kind of just becoming a miserable person, not all the time but most of the time.

Wow! What a load you bare. It seems we have to help you lift his spirits. I'm Shirley and care for my older sister at home. I'm married to a wonderful man who helps all he can. So somehow we make it work. Right now we are having her bathtub/shower renovated to a walk in shower. It very taxing on all of us because she had to move out of her room into the guest room. She fought it the whole way but now that it is under construction she is calm about it and acts like it was all her idea in the first place. It seems we have to keep her mind occupied in ways that she feels that she is in charge. I wish I could come up with something for your husband. Is he interested in music. How about audio books from the library. You could listen to stuff and talk about that instead of death and dying. It seems the stem cell thing worked and you can find a way to make a life again. Be assured that there are more of us out here in all kinds of different but similar situations. It's not easy that is for sure. May you find peace.