I have been approached by the Director of the Assisted Living Facility where my husband has been placed. She has ask me to think about starting a support group. She would love to have a support group, however, really doesn't have the time to be active full time. Since this is an ALF, The Alzheimer's Support Group are willing to help, however, they cannot conduct any meetings. The director is thinking she could help with finding speakers, and I would basically be the Facilitator. She has suggested finding speakers to provide a presentation...for 15-30 minutes. After the presentation it would be open for discussing concerns, fears or whatever is on your mind. She thinks that is where I would be helpful. I have told her many times how this forum, basically saved my sanity. Where we can speak freely about everything, without anyone judging. What do you think? I am diffidently not a Social Worker or as great as Joan at organizing this type of group or claim to know everything regarding dementia. Also, if what type of group would you like to attend if it were available? Would you want speakers or would you rather just have more of a social group? The ALF would provide a room & refreshments. Thank you in advance for any thoughts.
maybe a combo of both? speakers once a month and some social gatherings plus informal group therapy. i think its a great idea and give you a good outlet and a huge support for others who arent as fortunate to have online forums. you'd be great. divvi
Kadee--After a year or so of attending a support group at the Alz Association, I was asked by the professional facilitator if I would become her co-facilitator. We have done the combination of both speakers and the regular discussion among members, and I have found it to be very rewarding. I think you would be an asset and will enjoy the interaction and helping people, especially those new to the caregiving role. Our Alz Assn chapter conducts a yearly training day for support group facilitators--you could check to see if you can attend the next one to be given if your local chapter also does this. Good luck!
Go, go, go! Wish there were any kind of support group here. I've started attending one in Lafayette while my hb is in "his" group at the same time. The facilitator's hb had EOAD; she's very good. Beginning of gathering spouses share any questions, concerns, events they choose from previous week. Then facilitator has a handout--various topics for discussion/sometimes homework. "Outside" speakers once in awhile.
In our support groups we all simply share what is on our minds ... concerns, questions, we discuss recent declines in our spouses, etc. We all react to what others are saying. Never had any guest speakers ... wouldn't want them. We have all bonded very closely, newbies are integrated into our group very quickly, and we leave each weekly one hour session all feeling like we've learned something from each other. Some weeks, some around the table choose not to say anything, just listen to what others are saying, and that's fine too.
Here is my experience with "outside" speakers for a support group. (This does not apply to conferences and seminars, where the speakers are usually extremely knowledgeable in their fields) Usually they are from an agency that has "pre-prepared" power point presentations that are the same stuff recycled a million times - make time for yourself, how to relieve stress with meditation, and general symptoms of Alzheimer's Disease. The person presenting has little experience with AD, and is simply the "presenter". If you're going to have a speaker for a support group, it should be someone "in the trenches" - a caregiver themselves who knows what they're talking about from first hand experience. My apologies to those who have been outside speakers at support groups - you may have been very good. I am just going by my experience, which has been horrible. Our last one was in her 20's; knew nothing except what she had memorized from the power point presentation, and if it wasn't in the presentation, she could not answer one question. All of us in the group knew more than she did. Then there was the "laying of hands" thing, where the presenter put her hands on our heads, and said she was drawing out all of the bad energy.
I agree with acvann. A support group should be a place where everyone feels comfortable airing their emotions, concerns, and questions. As he said, everyone reacts to what the other person is saying, offering advice or just plain support. The facilitator should keep everyone on track and not allow one person to hog the conversation. And yes, everyone should be free to speak or not speak as they wish.
You don't realize how important a good facilitator is until you get a bad one. I am so used to our social worker, that I was freaked out the few times she had to be away, and left us in the hands of another person. Everything kind of fell apart.
My support group has only had one speaker come in to discuss behavior problems and different ways to cope with them. She was from the Alzheimers Association, but didn't seem to have any "real" experience at caregiving. When someone asked her opinion about the use of anti-psychotic drugs, she was very much against them and said they should only be used for a very short period of time. A couple of us just looked at each other and decided she didn't know what she was talking about.
I have found that the meetings are better when we all talk about our concerns and hear other ideas on how to cope with them.
I dearly love the hospice chaplain who leads our bereavement support group. Big problem is that she brings written material and proceeds to read it to us. Only when we sidetrack her and discuss what is really going on do we make some progress.
The leader of our group does not take control and one or two people monopolize. Actually the group goes better when the usual "leader" is not there and one of us takes charge. We do have outside speakers sometimes. Some are very good and others aren't. We had a speaker from the State Health Department who talked about Medicaid requirements. She was quite good. We also had someone from the Department of Aging who talked about what the health reform bill would do for us. He wasn't good. He knew about the bill, but not about our concerns. Also, we had a lawyer, who knew very little about medicaid, powers of attorney, etc.
In our group I am often the only male. At one meeting I missed the group decided to make a quilt with each of us making a square that represents something about our LO. This is not my thing, but I was one of the first to get my square in - 4 photographs of my wife and me on our trips.
At most meetings we have open discussion about our problems and concerns. We meet once a month. Several times we have had second meeting in the month as a pot-luck lunch and fun discussions. Occasionally we have a speaker. Most have been reasonably good. Next month we plan to have one or 2 of the local EMT's come to show us how to get our LO up when they have fallen.
Charlotte, some of the others (women) haven't finished their squares yet so we can't put it together. When it is finished it will hang in the Adult Day Center where our spouses (spice) are cared for.
Thank you for your comments. I still haven't decided if I want to tackle this project or not. From your comments, it seems the spouses that do attend Care Giving Support groups, like being able to talk to others about how they feel & not be judged. Please, if you have any other thoughts of what you would want from a support group, I would love to hear them.
Kadee, if you can start a support group where spouses will open up as we do here at Joan's site, I think that you will be providing a marvelous service to those people. People in my group often say how they can't talk about these things anywhere else but in our group. They can talk about how they feel, what they do, etc. without being judged ... and with the knowledge that everyone in the group is dealing with, if not exactly the same plate, a similar plate. It's also a great opportunity for everyone to learn from each other just as we all learn from each other on these message boards. The same topics we discuss here on this site come up in support groups and localized answers can be very helpful ... e.g., re ALFs or nursing homes in the area, availability of home health aides, etc. Questions regularly come up about anything from meds to symptoms to whatever. Go get 'em, Kadee!! As facilitator, all you really need to do is allow everyone who wants to speak to contribute ... and if someone tries to monopolize the time, or discussions seem to be heading off task, gently bring the discussion back on task and, perhaps, ask if someone else would lile to discuss something. Other than that, if you find yourself with a group like mine, you can literally just sit back and watch, intervening to contribute yourself when appropriate!