Six months ago a few of us started a small support group here at the retirement facility where we live. My past experience with support groups included people expressing honest emotions like they do on this thread, so I've been surprised that at no time has anyone admitted, perhaps even to themselves, that they were experiencing extreme sadness, anger or frustration at the many difficulties that emerge with caregiving for a dementia spouse. "I could never place him," is one belief that I truly think is going to kill one of the members long before her husband dies. Another doesn't know the names of his medications and just smiles all the time, insisting there are no real problems that really bother her. There's only one woman who seems to see her situation realistically and doesn't sugarcoat anything. I don't know whether to just ease myself out of this group gradually with fiblets as to why I can't be there or just tell them that I don't feel that I contribute much to the group, which is certainly true. My DH was placed four months ago, after too many nightmarish psychotic episodes and dangerous "wandering". I would love to hear from any of you who've been in small support groups like this and how they worked out.
Does the group have a professional facilitator, such as a social worker? If group members are in denial and not willing to share their emotions, it is the facilitator's job to carefully, slowly, and expertly bring them out of their shells. No member should be forced to talk if they do not want to, so then the facilitator usually diplomatically explains about the disease and how it affects caregivers. It can take weeks and even months, and sometimes never, for members to begin to participate.
6 months seems long enough to me for you to know if the group is a good "fit" for you. You don't have to fib - just say you don't feel the group meets your needs and you won't be coming anymore. That statement may get a dialogue going.
Joan, I thank you for your suggestion as to what to say. It's an informal group, no facilitator, although one member is qualified to be one. There are only five of us.
PrisR--This is a weird coincedence! Just this morning I was thinking about a support group my hb and I attended with 3 other couples. It was also not a good fit, none of the couples' situations were really similar to ours. It was a time limited group and when it ended, I don't think the other 3 couples wanted to continue. We were put into another group and it was night and day--the participants were much more compatible with us in every way. I later found out that the first group was improperly screened and should never have been put together the way it was. I think you should leave the group you are attending and see if there's another in your area you could attend. It's worth the effort--support groups can be a wonderful help when people "click".
I'm planning to start attending the once-a-month group at his ALF that's chaired by the Alzheimers Assn. The best support group I've found is our little group of 2, when I meet a friend from this message board for lunch. We were able to share our feelings right from the beginning, the good and the bad.
This website support group is the only place that I fit in. PrisR, I know what you mean by being realistic. I can't tell anyone else exactly what I am dealing with without getting alienated from others. People just don't want to hear the nitty gritty of all the things that we actually go through day after day. That's what true friends are all about, they should continue to be your friend even if you have negativity in your life for a while not just positivity. That is not even realistic to think that someones life is always going to be a bed of roses!
This is my only support group also & I know it fits my needs. I can’t arrange to go to the ones around here, can’t leave DH alone. I was going to one in the morning when I could leave DH alone, however the facilitator passed away & when they replaced him the meetings went to the evenings. I feel more comfortable here. When I was going to the meetings, I sometimes felt that I was talking too much & here we write as much as we want & get it all out & then read the responses to what we write. The best part is we don’t have to wait for a meeting. This meeting is held 24/7. Thanks Joan!
Our little group size varies month to month. While we are able to discuss whatever our situation is, and our moderator is usually very good, there is one lady who takes up way more than her share of time. We only meet 90 minutes and so most all try to keep their thoughts within a 5 or 19 minute span. But this one lady goes on and on and on and talks repeatedly about how her son lives with them to help and so on and on and by the time she gets done, especially if she is the first one go get to speak, then by the time it gets to the last one or two people, they get cut off...
It is a good group overall and the information gleaned is worth the time there, however..if lady G would just cut to the chase... If it continues I am thinking of talking to the moderator alone and pointing out that Lady G is repetitious to the point others are short, very short changed and maybe she could start at the other end or in the middle or have some variety in how the chats are started so that everyone gets a turn without being shut down due to time.
I echo..this is the best support group bar none and some of us are on FB so there is even more interaction..
Yes, we have one, who doesn't come every time, but always always monopolizes the time. I don't understand this type of sense of entitlement. It's just plain rude.
Our ALz Assoc. meetings here keep floundering. The leaders (who are the Administrators of the Alz. Units in the local nursing homes) are very nice and have tried several things to get people to come. When I first started there were maybe 5 people. One meeting there were 14 but now we are back to 2. It makes it difficult when people are not committed to coming. I feel like it is time to give it up and yet it is so important for some people. I have this site where I can vent, share, and be uplifted. Thanks to all of you.
Mimi and Pris R--I have taken the Alz Assn facilitator's training and part of it was about the very problem you have described. It is definitely the facilitator's responsibility to keep members from taking up too much time, and you aren't out of line to want to bring it up. Both of you should talk to or email the facilitator before your next meeting.
I go for professional therapy. The extreme damage this disease causes is too much for me to bear alone, and my friends love me and will listen, but they can't truely understand. Oh..and did I mention anti-depressants? I went to some support groups, but I felt out of place. People my age (53) were there for their parents, and they were afraid they could "catch it". I could see it on their faces. Pleople with spouses were much older than I, and while there was deep compassion, they had retired for years and the financial terrors were gone for them. sheltifan
Marylynin MD...we don't have a facilitator. I thought we sort of did, but she didn't try to stop the Talker and she said that the others weren't bothered by having the one person talk so much.
My group also has a talker. I've talked to the facilitator more than once, and I actually said I would not be coming any more if she didn't do something. The facilitator doesn't want to say anything to the talker, because she might hurt her feelings. I've started just interrupting her when I think she's talked long enough, and saying something like, "I think Joe wanted to share something." It works, but I don't think I should have to be in charge.
Janet, I know what you mean. As a professional in the counseling field I faciltated all sorts of groups and it worked because my leadership was accepted. In this small group I think I'm probably mostly seen as one who's trying to rock the boat, which, of course, is what some really need. That's what I loved about running group therapy. All the facilitator has to do is ask what the group thinks about what was just said and they'll jump right in.
sheltifan2--I know exactly what you mean. When my husband was dx I was 56, I had the identical experience with support groups. Since then, our Alz Assn has started groups for younger-onset families where some of the pwd's and spouses are in their 40's. I suggest you contact your area's Alz Assn office and see if they have such a group. If not, suggest that they start one.