Face to Face Support Group Disappointment

WIGO23

I have made two attempts at finding a local ALZ support group. The first time, no one showed up. Later someone left me a message that it had been canceled and they forgot to call me since I was new. Gee, that sure made me feel welcomed!

The other group had a Teepa Snow trained facilitator. As a person with a master’s degree in counseling, I knew her interrupting everyone and spending most of the time telling her story was not helpful. The other three people there were not 24/7 caregivers. I learned nothing and could not help but think the non-24/7 caregivers have it pretty good.

I see the value of support groups like this on line one and face to face ones. I am wondering if others have had these disappointing experiences too.

It is hard enough making the effort to go without the disappointment!

White Crane

WIG023, Early on I attended a couple of face to face support group meetings. First of all, they were at an awkward time for me...they were scheduled at the time we usually ate supper so it was hard for me to get away. The meeting itself was mostly the moderator talking and a couple of other people talking about medications. I didn't get much out of them and the people didn't seem very supportive or overly friendly. I left feeling empty. Another time I tried to attend a daytime meeting. When I got to the church where it was supposed to be I was told they didn't meet anymore. This online group has become like family and I feel very blessed to have found it. I don't know if my experience was typical or not. I'm sure others will weigh in and tell you of their experiences.

mrahope

I, too, have had disappointing experiences with face-to-face groups. It was by zoom during the pandemic and it seemed as though most of the participants had PWD who were much farther along than DH was at that time. TBH, it was quite frightening as I watched people tell about horrific experiences and also break down in tears talking about their PWD. A bit more intense than helpful, and yet, completely expected. I just hadn't learned to expect it yet.

M1

Same here, i find this forum much more helpful than the two local groups i have attended. The depth and breadth of experience is better here, by far...that probably has to do with size in part as more people participate here than you could ever find in a local group.

JoseyWales

I attend an in-person support group, and the support varies depending on who is there. I will say that since Covid, the groups have been very, very small. As in me and one other person. When the groups were larger, I enjoyed meeting actual real-life people going through something similar to what I was going through, although no one there was as young as I was. That's where I found my best leads for local information for elder care attorneys, info on insurance and info on facilities.

This group is a different type of support - more of the day to day issues and more emotional support.

Joe C.

I guess I am the outlier on this one, I have had very supportive experiences with support groups. I am an outgoing personality and I prefer most interactions face to face as opposed to zoom or conference call type meetings. That said the first support group I tried was a little frustrating, it as half discussion & half educational presentation and not sort on what I now see as “soft” type support.

When I tried my second support group it was what I now think of as “tough” support which is what I needed. After introducing myself to the group and telling them where I was at one of the group members said, “boy do we have to whip you into shape” and that’s exactly what I needed. In this group if you should to be doing something on this journey, for example seeing a CELA, asking friends/family members for help or exploring placement options, this group will let you know and hold you accountable to start working on whatever it might be. I left that first meeting knowing that I had found a home and have been a regular attendee for for over 5 years. For example, like many people on this journey I initially did not have a lot of help from friends of family early in this journey. When I would talk about the lack of help in the support group they would respond “are you asking for help?”, which was a very difficult thing for me to do. Every meeting the facilitator/group members would challenge me on whether I started asking for help until finally I gave up my pride and asked friends/family for help. Once I asked people some but not all people stepped up and started helping. I don’t know how I would have navigated the early/mid stages this journey without this group & now I’m the elder statesmen there. Since I found this group I have also attended other support group that other caregivers have recommended. I do see that some groups are better that others and it all depends on the facilitator and and the individuals personality. For some people the soft approach might be what they need but for me it was the tough approach that worked.

I believe the best piece of advice I received on this journey was when I was told, “this disease will destroy one life and if you let it it will destroy two, it’s your choice.” That came from my tough support group.

harshedbuzz

@WIGO23

I'm sorry it didn't work out for you.

My mom and I attended an IRL support group affiliated with the Alzheimer's Association. It was the better fit for my mom as she is not especially computer or smart phone literate and struggles with things like Zoom.

Our group's facilitator was remarkably good at it. I have attended other support groups including Al Anon and those associated with parenting kids with ASD and have seen many of the ways an IRL meeting can go sideways-- the facilitator who makes it about them, the one member who hogs the time, the know-it-all, the ones who make it a race-to-the-bottom.

Maggie controlled the group and made sure everyone got what they needed in terms of time and validation. I found mom would take advice from her support group more readily than when I offered her the same suggestion. Another great thing was the local knowledge to be found from people caregiving in your community from suggestions on day-programs, understanding barbers, dentist who "get it", and in depth experiences with MCFs in the area. The downside was that it was only monthly and when it went to Zoom in spring of 2020, many of the older members dropped off.

That said, I find this site met my needs better. There is a breadth of experience here that is unmatched elsewhere. I have never personally met another caregiver who had a PWD with my dad's diagnosis IRL although a few have turned up here. I like that this place exists on my schedule and that it's peopled by great folks.

HB

PookieBlue

WIGO23

I’ve been attending a Dementia support group for a couple of months. It has been going on for several years and is helping a lot of attendees. We meet every Wednesday morning for two hours. We use a room at a memory care center and we can leave our PWD there for free at the day care while we attend our meeting. There are about 10 to 15 people and we each are given the opportunity to discuss our week. I have also prepaid for 30 other hours of day care and my DH stays there for a few hours when I have an appointment. I am very grateful as this is the only respite I get. I do plan on using it more as my DH slowly adapts to it. I consider myself lucky that this is available.

Dio

I meet with a local support group via Zoom every week. It's very open and supportive. But this forum is the best in the depth and breadth of information shared.

Jeff86

My experience with a support group is similar to Joe’s. It’s probably five years or more since I first attended an in-person caregiver support group. It’s under the umbrella of our local (Hudson Valley) chapter of the Alzheimer’s Association and for spouse/partner caregivers only. Our meeting facilitator is very knowledgeable about AD as a retired RN and daughter of an AD parent, well connected in the field, and with great meeting facilitation skills.

At the first meeting I attended, I had two takeaways: that a lot of people were way worse off than I and my DW were, and that that would be our future.

We met monthly in person pre-Covid, and now meeting twice monthly on line. No topic is off limits, the group is very caring and supportive of one another, and serves as a tremendous resource for local services. Social workers, aides, hospice providers, doctors—great local recommendations. Issues with family, medical questions, DNRs, insurance, respite, whatever is on anyone’s mind. The focus is on us as caregivers and how we’re faring on this journey.

Also like a Joe, I’m now one of the veterans, with less need for the practical support issues but a commitment to pay it forward for people who are earlier in their AD journeys.

​fesk

I haven't been to a support group since Covid, but I went to two different groups prior to that. I agree with the person who said they are usually at inconvenient times. The first wasn't a fit for me. I found the facilitator awkward. The next group I found was better suited for me. It was a decent size group. The time was spent with everyone giving an update on their situations and everyone else offered advice or support. Sure, it didn't seem as if you got a lot of time some meetings, but I found it worthwhile. I should look to go back via Zoom or otherwise.

Joydean

I finally found a support group and have only been able to go to 2 meetings. It is at dinner time so it is kinda hard for me to go. The caregiver that comes in to help me can sometimes rearrange her schedule so I can go. I was really surprised to find one as we live out in the rural area. It’s a very large group is over 30 people and an hour and a half there’s no way that everyone gets a chance to talk but I did enjoy meeting other people with the same problems, I hope I will get to go again because they did talk about making two groups instead of one .