I'm curious about what is going on in other parts of the country regarding the availability of weekly support groups for those with early stage AD and/or EOAD ... and their spouses. On Long Island, NY, we have a local Alzheimer's Association that provides numerous daycare programs for those in moderate to severe stages, numerous caregivers programs, but ZERO support groups for those specifially diagnosed with EOAD, or for those specifically in early stage AD, or for spouses of same. This is for a local Alz. Assoc. serving a population on LI of nearly 3 million people. Shameful, in my opinion!! My wife and I currently attend support groups through a different organization, LIAF ... the LI Alzheimer's Foundation. LIAF, fortunatley for us, provides one group meeting weekly for those with early to moderate stage AD that my wife attends, and I attend a support group for their spouses meeting at the same time in a different room. Our groups have bonded so well that many people arrive up to an hour before these weekly meetings begin so we can all have lunch together and catch up on stuff in our lives.
From what I have been able to gather from other sources, whereas The Alzheimer's Association may provides lots of weekly activity-based groups and daycare type programs across the country for those in moderate to severe stage AD, they often do not provide support groups on a weekly basis ... and often provide no groups at all ... for those specifically in early stage AD, for those with EOAD, or for their spouses. And the few groups they do provide meet only monthly, not weekly. I'd be interested in hearing what readers of this site have found in their parts of the country!
I have brought to the top one of the discussions on Early Stage Groups. The discussion was started by a professional who works with Early Stage Groups. I am going to contact her.
Since that discussion was written, WE have added some features OUTSIDE of the group. A group of guys now get together every Monday afternoon (we alternate houses) for simple cards/dominoes games.They are all slow, and sometimes unfocused, so they help each other out, and new guys are always welcome. They love it, and look forward to it. One of our wives arranged for transportation and supervison for a monthly outing. So far, the guys have been to an Oceanographic museum, fishing, a toy train museum, and this month they are going to the Navy Seal museum. After the trip, they go out to lunch. They absolutely love getting together and doing something "on their own".
I will write much more on Early Stage groups later, but I need to get going - today is the guy's get together at a new member's house, and I have to find directions and call to let others know when I am picking them up.
There are really two different situations here. You can be in the early stage of Alzheimer's and be in your 70's and 80's. An Early Stage group includes everyone who happens to be in the early stages of AD, regardless of age. Ours was originally run as "closed ended". That simply meant that it was a 6 week introductory "course" of what to expect with AD. Each week, they focused on a different topic - finances, treatment, stages of AD, etc. And when the 6 weeks was up, it was over. The course started again for the next group of Early Stagers. By the time I joined, they had abandoned the "closed ended" part, because everyone wanted to stay. It is divided into 2 groups - the caregivers and those with the disease.
The other situation is a support group for only those with EOAD, meaning anyone under 65. I honestly do not know of any, but think they are an excellent idea, because of the tremendous opportunity for socialization among similar age group members. I have said this many times before - make noise about what you want, and if the Alzheimer's Association won't listen, start your own group.
Day programs for EOAD patients are non-existant, as far as I know. If someone is 45 years old, and so debilitated by AD that they need Day Care, their only option is to be in a program with those in their 70's and 80's.
I attend 2 support groups, one at the day care where my DH is enrolled, that 's a terrific one, and the other by the alz org, not so great. and not well attended, last week there were only 3 of us, and prior to that, only one. it's too bad. The one at the day care, however is excellant in that we all have members (mostly spouses but some parents) who attend. Very ehlpful, and we got to know what our lo is doing there. and they do give suggestions. It's run by a social worker at the day care.
I am attending a support group at my wife's day care which meets once a month. My only problem is that the group consists of 8 women, caring for spouse or parent, and me as the only male. A couple of months ago they decided to make a quilt with each square based on some memory of their LO. Making a quilt is something I have never done, and never really wanted to do. I made my square using a photograph I took on our trips.
Good for you for participating! Wish there were a support group in my community, and I'm not certain I would participate if members were all male. Gold star for you for this support of your wife.
I've attached myself to a support group about 45 mi from where we live. Meets at same time/place hb has a group with university students and prof.
The support group I'm in has been invited to put together a panel to meet with medical students at the local university. Apparently they did it last year (before I was in the group), and it was very well received; hence the request for a repeat. Also talk of a similar activity with nursing students. Seems like a good idea to me, and I'm looking forward to seeing how it goes.
Sounds like a wonderful opportunity to educate some future doctors ... and nurses ... firsthand about what life is REALLY like when living 24/7 with someone diagnosed with AD ... and what YOU wish doctors would have told YOU leading up to the point of diagnosis. Go get 'em, Zibby!
I participated in, benefited, and enjoyed a great support group where I lived last year. We met every other Wed and the Altz Asso was always there to encourage and help us. As some of you have posted, the caregivers met in one room and the Altz people met with the spouses in another room. It was great and something I looked forward to and got a lot of help from.
Fast forward to where I am living now. I have attended three support groups here and I can't tell you how disappointed I have been. The first one was attended by myself, a lady whose husband has had a stroke, and three employees of a nursing home. Second one was in the better part of town at a large church. Only me and the facilitator. Third one was also at a large church and there was only me and an elderly woman, a facilitator and a home health person. None of them could even converse about the meds that are prescribed for Altz patients.
I got all of these off of the Altz Asso web site. My bottom line now is that the local chapter of the Altz Asso is incompetent and not doing anything to help us. The Altz Asso where I used to live was just the opposite. Great people. Involved with us and always ready to help us if we needed them.
I feel bad that I didn't appreciate them more than I did, but, I just assumed that all Altz Asso would be the same. Boy, was I ever wrong.
I agree, Dean. Like AD, if you've seen/worked w/one Altz Association group, you've worked w/one. The one that's located about 45 mi north of me and in whose district I live, isn't very helpful from my observation. The one located 45 mi south is very active and helpful. Works w/the Area Council on Aging. Area CA north isn't so active. Support groups I now attend are helped by the fact that one woman's hb had EOAD; another's father-in-law had AD and (a biggee, I think) they've caught the attention of the University.
Since I have stockpiled various incontinence products for the future, I got the idea to do a show and tell with samples for my support group. This week I canvassed the group and they are interested, so next month I'll take in samples. I thought it might be educational and make it easier for those who haven't needed them yet--there are so many products out there (which is a good thing), but it can be a little overwhelming when you first go down that aisle in the store!
MarilynMD, That is a great idea, I am sure some like me some had no idea what type or anything about incontinence products. I came to this board asking for help...which was provided. I am going to be the facilitator, starting in October for a new support group at the ALF were my husband is placed. I have been thinking of different topics which would be an interest to everyone, this would be helpful I am sure to others.
Okay, so where do you all go to find out where to find support for yoru ad spouse. Day Care, part time caregivers who give me a break, etc. Where do you find these people and organizations??
mothert - try googling your state name and committee on aging or Senior Services, etc. In WV they directed me to the proper person I could get in touch with. I didn't use any except for Hospice but we were elgible for a few things, such as someone to stay with him a few hours a day so I could get away.
Here's another possibility for a support group meeting, Kadee. We're going to try this in my group in a few weeks. Several of us have now read a ten year old book that has just come to our attention: Unplanned Journey ... Understanding the Itinerary. The author is Susan Miller. The book is a series of 'reflections' about her feelings after her husband was diagnosed at the age of 55. Each poem, in free verse, is quite brief and the entire book of about 128 reflections is a very quick 90 minute read. BUT ... reflecting upon HER reflections is another matter, especailly those that you feel you could have written today about where you are! Those of us in our support group who have read the book have each picked out those that we feel express best where we are right now on our own unplanned journey. As soon as everyone in the group finishes reading the book, we plan to devote part or all of at least one meeting for each of us to read aloud those 2 or 3 selections that best express how we ourselves feel, and why ... and discussions will flow from there. You could do this with Miller's book (I recently wrote about it on this site's bookmarked Books discussion thread) or with some other source material. Just a thought!