This question is for those who have attended local support groups

Ed1937

I joined a local support group, and there were only 4 of us there. My expectation was to have quite a few more. How many people attended the support group you attended? 

I seemed to be the most experienced in the group, although they were also going through some pretty hard times, and their LOs seemed to be more advanced than the caregivers had experience for. My impression was that none of them had attended, either in person or online, any type of support.

toolbeltexpert

Ed I just finished a 6 week course online. There were 4 not counting the leaders. There were some folks who were real new to caregiving. Powerful tools for caregivers was the name of the book, it was a no charge and there is supposed to be a music device with a Playlist for the caregivers lo. I did take a few things from it. I did plug this forum and put a link in the chat and I saw several writing it down. At one point the leader said I could be leading the course. I did read each lesson in advance and I have learned a lot here. Setting goals was the real focus in making time for the caregiver. Communication tools was another focus. I plan on reading some sections over to let it sink in.

Stuck in the middle

There was always 20+ people at the monthly support group I attended before covid shut us down.  It was one of several support groups in town run by the local chapter of the Alzheimer's Association.

At least one man (a very sociable and talkative person) attended more than one support group.  The groups met at different places and at different times.  He was retired and day care was provided for his wife and other PWDs on site, so he could do that.

Jeff86

I have participated in a local support group for perhaps four years now.   It’s sponsored by our local Alz Assn chapter (Hudson Valley), and originally held at our local community hospital.  It is moderated/facilitated by a retired RN whose mother had AD.   It is specifically for spouse-caregivers.  

Pre-Covid, we met in person on a monthly basis.  With the pandemic, we switched to Zoom and increased frequency to 2X per month.  

At any given meeting, there are perhaps 6-8-10 participants.  There’s a core group of folks who make most meetings and others who float in and out.   What has been particularly helpful about our support group has been learning about local resources—seminars, aides, day care programs, services available—that I might not otherwise have known about.  I changed my DW’s medical team based in part on input I received from the group.

I remember so clearly the first meeting I attended.  I listened carefully, looked around the group of caregivers, and thought two things.  One is that a lot of people were dealing with more advanced and complicated issues.  And two, that that would be my fate.

I have met and bonded with some fellow caregivers in the support group.   But one painful observation: once caregivers reach stage 8, they drop out of the group, perhaps moving on to a grief support group.  That, too, feels like a loss.  

Jeff86

Jeff86 wrote:

I have participated in a local support group for perhaps four years now.   It’s sponsored by our local Alz Assn chapter (Hudson Valley), and originally held at our local community hospital.  It is moderated/facilitated by a retired RN whose mother had AD.   It is specifically for spouse-caregivers.  

Pre-Covid, we met in person on a monthly basis.  With the pandemic, we switched to Zoom and increased frequency to 2X per month.  

At any given meeting, there are perhaps 6-8-10 participants.  There’s a core group of folks who make most meetings and others who float in and out.   What has been particularly helpful about our support group has been learning about local resources—seminars, aides, day care programs, services available—that I might not otherwise have known about.  I changed my DW’s medical team based in part on input I received from the group.

I remember so clearly the first meeting I attended.  I listened carefully, looked around the group of caregivers, and thought two things.  One is that a lot of people were doing with more advanced and complicated issues.  And two, that that would be my fate.

I have met and bonded with some fellow caregivers in the support group.   But one painful observation: once caregivers reach stage 8, they drop out of the group, perhaps moving on to a grief support group.  That, too, feels like a loss.  

harshedbuzz

Ed-

My mom (and sometimes myself) attended an IRL support group from fall of 2016 until recently. 

She attended a Wednesday afternoon meeting originally but that became Zoom-only even after the Friday group went live. The moderator combined those from the Wednesday and Friday groups when they went to Zoom in spring of 2020- that group is about 15-20 people spread out geographically. The Friday group is small now and my mom was the only "old timer" still attending which is part of why she stopped going. 

Pre-Covid, the Wednesday group was anywhere between 2 and 20+ people. A few of the attendees were family members but most were there alone. It was a mixed group- a few in stage 8, a lot where you are weighing pros and cons of a MCF and a few whose LO was in earlier stages or had just gotten the diagnosis. 

HB

Ed1937

Thanks for the replies. I guess I was maybe expecting 15 - 20 people, and was surprised to see there were only 4 of us. I guess it makes sense that an online meeting or zoom meeting might have more participants. 

There is 1 facility that my daughter and I toured. My daughter knew someone who had a family member in there, and they gave it good marks. Yesterday, at the meeting, a woman got my attention right after the meeting was over to tell me they had a family member who was at the same MC, and it was so good that another family member became a resident there too. To have 3 or 4 people give it thumbs up was reassuring. 

Crushed

Ive been at my support group for 6 years and its fabulous.  Virtual meetings the last few years.  I'm often the technical host.  That way the meeting coordinator does not need Zoom knowledge .

We have 16 members and average 11 attendees

Marie58

I started going to a support group shortly after DH was diagnosed with EO in 2016. The number of participants varied every month from a handful to about 20. It was a nice combination of support, open discussion/questions of individual situations, and education. Then I heard about another one so I attended both for a couple years. The original one was my preferred one for a while because it was so educational. The 2nd one was smaller and eventually I only attended (and still do) just that. For a long time we had a core group of 6 women with others coming and going. Of the 6 of us, 5 were spouses and one was an adult child. We became close and we offered each other a lot of support, often calling each other between meetings to just talk. One by one, their LOs passed away and they stopped coming (Covid was mixed in there too and we didn't have meetings for a while until we started zoom meetings.) 

If you have more than one option, attend them all and find what fits you best. Like I said, of the two I attended, one was more educational and one was more supportive. I think they're very beneficial.

ImMaggieMae

How do those of you who attend support groups manage the care of your LO while you’re at the meetings? Zoom would be a little easier, but probably still a lot of interruptions here.

It would be great to find out about more local resources and compare notes on different medical facilities.

Scooterr

I guess I'm with MaggieMae zoom would be great and the only way I could do it, but my DW's interruptions are all the time or I have to really watch her. I live in a very rural part of OK and the closest support group is in Tulsa 45miles away. I think it would be great to attend a informative meeting. A couple of years ago they tried one at a local church. They had one meeting and called it good and never had another one.

JoseyWales

The group I attended for a while had between 3 - maybe 17 people who'd show up each month. Probably averaged 8. I haven't gone since Covid shut it down 2 years ago. They're starting up again next month. I think I'll go, and hope that many of those who used to go will show up and I can find out how they're doing.

Rescue mom

I have been going to IRL groups for maybe 9 months month post-covid, and some before, maybe a year with none during peak covid. I didn’t do any zoom or online meetings. There are several now every week, I’ve gone at least 2x weekly. Most people bounce in and out, depending on times and locations, and are more or less regulars.

There are usually about 8-10 people, maybe 12 occasionally, which I think is too many for the scheduled hour. The moderator is really good at giving everyone a chance to talk. That’s been tough for her with bigger groups, and on the few times when one person really dominates with very specific (not dementia) issues. I’ve often thought a smaller group would be better. We can stay later if we want, but without the expertise of the moderator.

 But the group has been invaluable, huge help for local resources (just as Jeff said) such as aides, doctors, facility advice, etc.

Several of us often stay longer to talk, we’ve talked about getting together more socially and do sometimes, but it’s hard for everyone as you all know. The PWDs seem to be at all stages from middle to near-end. Most spouses there use private caregivers or adult daycare while they’re at the support group. 

There’s also a group for caregivers accompanied by their PWD, but that’s obviously a different kind of discussion, since most in the groups I’ve been at are seeking help with problem behaviors or issues. 

Most participants are spouses, there’s  a couple of young people dealing with parents, and always more women than men. (I think men had, or may still have, their own group but less often. All go to the groups I attend.

There was also a six-hour weekly course on caregiving (this is all by the local Alzheimer’s Association) with a highly credentialed and trained instructor, that was incredibly good. Much of that involved issues that have been discussed and advised here.

Joe C.

Ed, I have attend several different support groups with group participation ranging from a low of smallest group of about 5 to the largest group of about 25, obviously members come and go as time passes. I actually wound up preferring the small group for two reasons: 1: When I needed to talk there was always time in the smaller group but not necessarily so in the larger groups. 2. In the smaller group the members formed tighter bonds as we were more invested in each other’s journey.

nancyj194

When my husband was diagnosed with Alzheimer's in 2017, I joined a local support group after a long time friend shared with me the date and time.  Her husband also had Alzheimer's but passed away after the first year I joined.  The group averaged 20-25 people.  Our moderator did very well keeping the conversation going around the room, but whoever was at the beginning sometimes spoke longer while those at the end had a shorter amount of time.  

Now and then the number in the group dropped down to 10-15, which was more relaxed and informative, for me. I became friends with one woman and we still communicate via email sharing a lot of information .

 I stopped going when COVID hit and we only did Zoom meetings. Zoom was not an option, as my DH is too clingy and I was concerned about how he would react to what he heard.

Now that the group is back to in person meetings, I am reluctant to attend, as I am concerned about leaving DH by himself. I've not reached the point of needing a caretaker on a regular basis. 

Ed1937

Thanks very much for the replies. I'm hoping the others that were there show up again, because if 2 of them don't show, that will only leave 1 other and me. 

I am one of the very lucky ones because we have a large family, and one of our kids is usually available to stay with their mother, who really can't be left alone for more than a few minutes.

FTDCaregiver

Just attended my first support group on-line via zoom sponsored by our local Alz assocation chapter.  About 7 were present, though I thought the group was much larger but couldn't attend.  Very well organized, lots of sharing and resources provided.  Loved it and will continue to go.

sunshine5

It depends on the support group. I attended a few on line only, I am a new kid on the block as far as Alzheimer’s is concerned. Some groups had regulars who attended weekly, had May be 8 people, that group was not suited to my needs, however a group for early dementia by insight memory care is good, it’s monthly, virtual that a like to attend, I learn a lot from the experienced people in the group!

There r lot of memory cafes too, in person and on line!

Good luck !

Gig Harbor

I joined this site in 2016. Three women realized that they lived in my area because of my name. We started meeting every two weeks for coffee and then weekly. We added more members as we would invite women whenever we met them in the community. In the almost 6 years we have been together there are two of us who are original. Some have joined and left when their spouse died. Others have stayed. We are at 14 now including two men. It is not a structured meeting and we feel free to say anything. Some members continue to come after their spouses die because we are friends and they have a lot to offer to those of us still in the trenches. Thru Covid we met in parks and restaurants that had outside seating and had to do very few zoom meetings. Right now a local church lets us use one of their rooms and we meet at 1pm. The support is invaluable and if you are early on in the journey and can get away for a couple of hours or have a caregiver I would highly recommend trying to start a group.

Ed1937

Gig, that's great! Guess I picked the wrong user name.

billS

Maybe I'm an outlier but other than this forum the only support group I've participated in has been our friends, all those people who my wife and myself have been close friends or neighbors with for many years either face to face, through phone calls, emails, and zoom. Most of them have personal experience with a family member having dementia so they understand what I'm going through. But above all they are genuine friends who frequently reach out to check on me and offer support. That support has been invaluable.