This may sound a bit odd, but I've been talking to someone locally about starting an Alzheimer's Encouragement Group, for folks in my area. It would not be affiliated with the Alz. Foundation, just a small group meeting casually in a homelike, calm atmosphere to share what's on their minds & in their hearts (much like things discussed in this blog). It's only in the "wondering" stage, nothing concrete, but I decided to ask if anyone here has ever tried something like this, or has any knowledge to share about it. i don't even know at this time if it's even feasible, much less possible. Don't know if it's a good idea or not. I don't want to use the word "support" group, sounds kind of clinical & that's not what I'd want. Any ideas & opinions, positive or negative - I can take it, just don't make me cry !! ;)
Sounds like my younger onset dementia support group. We usually meet in a church (but met at the moderator's house for a special even last night). People introduce themselves, we go around and people give an update on their lives, ask advice, etc. Some rules but mostly informal. We are listed by the local Alzheimer's Association but I don't know of any official affiliation. It is wonderful.
Mim, make sure your group has focus, like only being for dementia spouses or a particular age group. Having more similarities helps, it will still be a diverse group.
It sounds like a wonderful idea Mim! If there was a group in my area for just spouses I would go. It may sound cold, but I just can't tolerate sitting in the same room with children and grandchildren complaining about their loved ones. What I want and need is spousal support from people who are living it. Nothing like that in my community. Here is where I have always found the most support and understanding ♥
I had attended a support group exclusively for people whose spouses had Alzheimer's at the Long Island Alzheimer's Foundation (LIAF). When everyone showed up, there were 16 in our group. Most weeks we had around 10 show up. We met every Tuesday for 90 minutes in a group led by a social worker while our spouses met in another room in a group led by a different social worker. It was wonderful ... but after 3+ years I felt it was time to move on. However, I now meet every Monday for lunch at a Greek restaurant with quite a few former members of my support group. Half of us are like me, still dealing with spouses with AD; half are former members whose spouses have already passed away. This informal 2 hour get-together is now the highlight of my week. Some weeks there are 5 or 6 of us; some weeks, 10 or 12 of us. Our LIAF group was very focused; each of us had an opportunity to share whatever we wanted to speak about that week, and everyone was 'there for each other' to suggest ways to help us get through whatever issue we were dealing with. I learned so much ... just as I have from this site ... because we all 'got it." Even though our Monday luncheon is a much more informal group than we had at LIAF, because we all "get it" we are still all there to encourage each other ... those of us still dealing with spouses with Alzheimer's, and those making transitions to new lives without their spouses. And just as in our formal group, we all have an opportunity to share whatever we have been dealing with that week and all are there to provide support, encouragement, and suggestions to help each other. So, I obviously think your idea is terrific, Mim. My only advice is to echo the comments above ... restrict the group to spouses only since no one can really have any idea of what we are going through except others who are rowing in similar boats! Good luck!!
Does the Alzheimer's Assoc encourage its chapters to start support groups for spouses, or is that decided locally? When I spoke to our representative she indicated that there was no group and I did not get the impression that having one was even being considered. I am not that familiar with the AA, so I do not know if they are aware of the differences in support for spouses and others. I hesitated pursuing it too much because I didn't want to get tapped with "great idea, why don't you organize it."
As an aside, when the AA caseworker went through her checklist of what needed to be done, I had done everything thanks to the info on this website. She congratulated me on doing everything that needed to be done. Our chapter seems for focus on the early stages and newly diagnosed for both spouses which does not apply, so there was little to offer at that point. I would think that with about 10 support groups meeting locally, there would be enough interest for a spouses' group. Should I get back with the AA and push harder for a spouses' group?
marche--yes! I can only speak about my chapter of AA: for specialized groups, they compile a waiting list and when they have enough interested parties, they start a group. Our initial group was only 4 couples--so they felt it was enough. If your chapter wants to start a spouses group, they could have the facilitators of the existing groups mention it to their members. There may well be other spouses who feel like you do. The volunteers who answer the Help Line should also be made aware of a potential spouses' group. In terms of them dumping the responsibility back on you, that is contrary to their mission. You are one of the people they serve; if you are asked to do anything, you can certainly turn it down. I was asked to co-facilitate a group and said yes; another member was asked later on and he turned them down.
P. S. Our early-stage groups where both spouses attend are done on a limited-time basis. Due to the nature of the disease, at some point the people with dementia no longer get value from attending. Consequently, those groups automatically transition into spouses' groups.
As for limiting a group to certain catagories. I think if you live in a large city it would be a good idea. The more alike the members are, the more value for the group. I happen to be an old man and a ex spousal caregiver for a wife who had vascular dementia. Now if I could find a group with these restrictions, it would be the group for me. 1---All men 2---All old 3---All ex spousal caregivers for wives with vascular dementia.
Maybe you could form a group with no restrictions, and then divide it into sub groups.
Mim- We have a wonderful support group at our Alzheimer's Association here in Georgia. it was started several years ago and most who've attended over the years have been younger married couples age 50's & 60's. It's one night a month and we bring our spouses who go into another room. This year we have been moved out of the "early stage group" & into another group since our spouses's are mid stage. It's been a great experience for us.
One person in my group also attends another group. The other group is mostly made up of older women (70s) so the meeting is at 7pm and pot luck. Not so good. My friend has to rush home from work, buy some cooked food (there is no time to cook anything) and then rush off to the meeting. So when thinking of a venue, time and day think very carefully of who do you think will be attending and if it will be adding more stress.
You're comments are so appreciated-I have this bookmarked for referral. All helpful, thanks. Anyone jump in any time with more thoughts! I'll keep you posted how this is going to play out.
I also facilate a support group locally. I mentioned it to our local Alzheimer Director and also the local Hospice director and both practically begged me to do one at their places. I decided on the Alzheimer place and it has been 2 years now. I wanted it to be for spouses only but currently we have a lady whose father moved in with her and so we just worked her in and she is struggling also. I am from a small town also and I thought if we got too many spouses we would divide the spouses out. However, considering the size of our area and the problem with so many caregivers being able to come in the day time - I don't know if that will happen. The local chapter also has a caregiver meeting for anyone and it meets monthly at a local Church. Primarily, we share our experiences and concerns and give everyone a chance to vent and share advice. I think the more support groups that open up - are wonderful.