Last month I received an invitation from the hospice organization that enrolled my Dad last year. It was to attend an all-day retreat on ways of dealing with grief over the loss of a loved one. I was particularly interested because one of the things that has been bothering me is the lack of grief support groups for dementia caregivers. In my area, at least, the grief support groups insist that in order to participate, you must be mourning the death of someone who has already passed away. Anticipatory grief is simply not dealt with--they refer you to the Alzheimer's Association. But as a support group facilitator, I explain that we are so busy dealing with the practical issues and hands-on crises, there simply is not much time to deal with grief in a 1 1/2 hour meeting, once a month.
I actually have already grieved for my Dad, who died a year ago at age 97, after having a healthy life and a clear mind until the end. I think people who are in our situation can certainly appreciate that there are worse ways to go. So I went with the intention of getting tips on how to deal with the long-term grief caused by dementia in my spouse.
A lot of the material was on self-care, things that we've already discussed here at length. But there were two issues that came up that were new to me. First, that there is scientific evidence that writing as a form of grief therapy actually causes cognitive changes in the brain. Second, that creating art is also therapeutic and engages a different area of the brain than writing does. So Joan is doing a lot right--through this website, she is writing; her knitting business must be beneficial too. I'm going to try to focus on finding some sort of art to get immersed in--can't hurt!
I find this very interesting. My issue, from the beginning of the diagnosis to now, and I am sure, right to the end, will always be the grief over the loss of our relationship. I have not attended many face-to-face support groups, but of those I have, this issue is never discussed in depth. It's why I started the website. Yes, I was writing my heart out in the middle of the night because I couldn't sleep from the grief. I turned those writings into blogs, and the rest is history.
Why isn't this long term grief dealt with in Alzheimer support groups? My own opinion and observations are that often there are too many people in the group - not all dealing with spouses. 1/4 to 1/2 the members of the group get to speak for maybe 5 minutes each, or someone monopolizes the time, and it's always about a problem that needs solving - medication; behavior; incontinence, etc. With a large group, it's impossible to delve into deep emotions.
Maybe you have a small group - even with a small group, most facilitators focus on concrete problems or caring for the caregiver.
The grief of losing a spouse to Alzheimer's Disease, piece by piece, day after day after day, is unbearable. I guess, as with everything, if you want something done, you have to do it yourself. So if you want a particular type of support group, such as one for spouses, as Marilyn says, for "dealing with the long-term grief caused by dementia in my spouse", you'll have to start one.
I don't know about cognitive changes in my brain, but I do know that knitting relaxes me. And writing absolutely releases the tension and stress.
Joan, you hit the nail on the head as to why I don't go to a support group. The last one I went to was clearly made up of adult children whose parents had AD. Plus there was one person who monopolized the session. I live in a rural area so that is the only support group around. Just wasn't a good fit for me. I LOVE the idea that I can write what is bothering me or ask for info & someone here is always ready with a kind word or the exact adevice I need. Thanks Joan!
I agree with you Marilyn and Joan. I benefit greatly from my support groups. I formed a small on-line support group with 16 members, 3 years ago and I credit that with truly saving my sanity. That, and being active on this site. Being able to vent all I want to ever day helps me as much as it does the other members and they do the same. I have a few individuals with spouses with dementia and also formed a support group with the local Alzheimer's association. Small is better when you are having a group discussion and also it is more beneficial if all are spouses. Our needs are different. We try and interject daily living with each other and expand our horizons beyond dementia. We talk about books, movies, our gardens, our homes, our kids etc. as well as dementia.
I think art projects would also be good. I am thinking of taking a drawing class at the Art Center where I volunteer. I have NEVER been able to draw and I talked to the instructor and he said that was fine, so I am thinking of doing it.
lmohr* there is a wonderful book called "Drawing on the Right side of the Brain" Even if you still take the course, this book is really cool. I have never gotten through all the lessons in the book, however, the little that I did do helped my style immensely. Plus there are before and afters, and hundreds of art pictures. Good reading.
The theory is that ANYONE can draw, and I believe this.
And yes, I am always amazed that despite stress and grief, I can still go in to my little room and create. In fact, some of the art may be lovelier because of it. I sell my gourd art along with my coconut, so I NEED to do it. I feel very lucky to be able to do what I love, and also that I can do it at home.
I swear I had that book because I remember getting all enthusiastic and buying a sketchpad and all those wonderful soft pencils. That does not mean I can find it now though. Similar, but not specific to drawing is Julia Cameron's "The Artist's Way".
I thought it was called "Drawing with the Left Side of the Brain". I might still have it somewhere here! I used it a lot a number of years ago...before AD. If I ever get myself organized I will go back to sewing and drawing.
that is funny Jean21, no it was definitely the "right side" If it was the left side, according to studies, well, it would seem that the art would be very rigid and mathematical and "sensible" . I would actually think that would be an interesting read.
abby I think I have bought that book three times in the past 20 years, once for an update, and once for one that was not returned. I never did get through all the lessons, one day I will!
In the past, I have found the same situations with group meetings and it doesn't matter what kind of group it is. I have always felt that Alzheimer's disease is so very different from other diseases and that is why this website is so very important. After almost three weeks of being a widow, I can't seem to get enough sleep and have no desire to be around anyone. I want to do something but don't know what. Maybe things will be better once all of the after death stuff is finished. Still have to deal with Soc. Security, get the death certificates, the memorial stone takes 6 wks, dental, vision appointments. I've done all of the cleaning out stuff. Then what?
brindle--I am a bit ahead of you--it's been 7 months today. What you described of these first weeks for you were like that for me too. I had a project already scheduled--friends coming from out-of-state for a visit--to prepare for. That filled some time and helped me focus outside these 4 walls. I just kept poking along at the post-death stuff and getting my medical caught up and kept (still am keeping) looking at all the choices I have. Some have suggested i look into a part-time job or volunteering. At this time, that doesn't draw me--a set schedule, committed hours. I was locked into that a long time. Projects--set windoow of time--fine. I'm still taking things slowly, though the wanting to do something/just don't know what feeling is with me much of the time. I'm looking into what choices can fix that.
Then What? whatever I decide to fill my life with. Ol Don, you asked too. Your "Then What" can be filled with whatever you decide, or it will be filled with whatever you drift along doing. It feels scary to say it--but freeing too. "Then what" is up to you.
brindle, you might get some ideas from our "AD Widows and Widowers" at the top of Joan's Discussion Page....where we who are dealing with our grief and problems and sometimes happiness have posted - and we still continue to try to help each other. We're family here...even AFTER for a lot of us!
It's been over a year and a half, and I don't know what I want to do with the rest of my life either. But life is easier, no stress, I'm in good health, and I know that I have a future ahead of me - that will be what I want it to be....when I figure it out. In the meantime, I still work full time, and take a couple of vacations a year. I stay in touch with a lot of the spice from Joan's who are now widows and widowers, and some of us travel together.
My daughter helped me get the house de-cluttered a lot in the first two months AFTER, before she had to return to her teaching job. That was such a big help. I didn't want to do it alone, and it had to be done. I have a 12 inch deep plastic tub that is about 18 x 24, that has my husband's death certificate, important papers, his eyeglasses, his wristwatch, and memorabilia that I want to keep and want the kids to have after I'm gone. Some of his things, like his knife collection and pipe collection I have already given to our sons. I bought a new bedroom set because it is easier to go to bed in my bed than it was in our bed.
There are days when you don't want to get up and get dressed, and that is okay. There are days when you can't stand to stay in the house another minute, and that is okay. Whatever YOU want to do is okay!!! You have to unwind from years of having to do things. It takes time. We feel lost. That is okay too. You will be on an emotional roller coaster for several months. Just hang on. It will get easier.
When I find out what I want to do with the rest of my life, I'll post it here at Joan's.....and even then we can always change our minds! That is okay too!!!