I'm wondering if people here attend support groups? Did you start looking for support on the internet, or seek it locally first? What do you think would be the ideal way to gain support, as a caregiver?
Welshy: Yes, Yes, I go to a support group and look forward to it each month. I went to a great group in the city where I lived and when I moved here I called the local Altz. office to find out where and when they meet locally. I tried four different ones before I found the one that suits me best. The facilitators of these groups are wonderful people and they are very helpful. I would strongly recommend this as a help along the way.
Yes, I attend a support group too. Mine meets once a month at my husband's day care. It helps to talk to others who understand what you are going through. We have had others come to the meetings who didn't have loved ones at the day care. They found out about the meetings through the Alzheimers Association.
The one I attend is at the end of the day for the day care. So, my husband usually sits in one of the recliners on the other side of where we meet. It also meets once a month.
I think that is a good idea having one at his program, that way it isn't coming out of your personal time alone, and you don't have to worry about setting up care in the home while you are at the group.
The Alzheimer's Association has lots of support groups--in my rural area there are two (one day and one evening) within 10 miles of me. Go to http://www.alz.org/apps/findus.asp to find them. I actually don't go to one of those; I don't find people enough like me. I did like very much an Alzheimer's Association early stages support group, with separate meetings for the person in early stages and the caregiver, but my husband refused to go after a while. He didn't identify with the others, and it met at 10 am, which is earlier than he can get going in the morning.
Instead, I travel 40 miles to a once a month support group co-sponsored by the Lewy Body Association at a Dementia Care facility in a nearby city. For LBD groups, go to http://www.lbda.org/content/local-lbd-support-groups I don't get there every month, and neither do the people I most identify with, but there are a few of us there struggling with very much the same things.
At my first support group, the caregivers met separately from the patients. They had a program in another room for them and my DW would go if I insisted. Which I did. We could share our concerns with each other if the person we were talking about wasn't in the room.
Please copy and paste this link - http://www.thealzheimerspouse.com/Supportgroups.htm It is a blog I wrote 3 years ago about support groups that is very informative. Also, one of our members brought to the top a discussion on support groups for you. If you go to the top of this page, click search, and type in support groups (make sure the "topic" circle is filled in), at least 8 other support group discussions will come up for you to look through. I hope this helps.
Yup, once a month in the evenings. . . . I still work (age 53) and surprisingly even in a big city (LA) there were not that many meeting in the evening. Most were in the late morning before lunch.
The venting is OK (There is better venting here) but a local group cannot be beat to learn what resources (MDs, day cares, Board & Care, ALFs) exist locally and which are the best.
Just like this board, each group develops its own dynamic and relationships. The family relationships have to be considered too. If it is a group of people with AD grandparents, you might not have as much in common with them.
At the begining I attended an 11 week program with the Alz Assoc but it was way on the other side of LA and the only resources they knew about were a minimum hour freeway drive away. I got very little out of that one.
Dont forget to utilize your local Senior Services to find a group too. Call your local senior center for referals, that's how I found mine.
m-mman you are so young! I am 56 and it always startles me to see such young caregivers, and patients.
After reading all this, I think I will...make an effort to find a once a month local support. They are all a long drive, but that would be ok once a month.
Well, for what it is worth the 'average' age of AD onset in 73 but it certainly can come on at any time. Wife's Sx started at 55, she retired at 57, and she is now 61.
Yes, I go once a month. it is a lunch meeting, lunch provided by whoever is speaking that day. Also peple discuss different problems that arise as caretakers.
I don't go - this is it for me. We travel in our RV where I work in RV parks. Once we settle down in one spot I may go look for one. I did go once over a year ago but the whole time was spent going around with everyone introducing themselves. Some had been going for a long time and I think I was the only first timer.
This is it for me, too, Charlotte. I do try to go once a month to a "caregivers" luncheon -meeting. But it isn't specifically for dementia. I just go if the program sounds interesting and I can get away for an hour and a half.
Yes, definitely, go if you can find one in your area that is a good fit for you. They are (or can be, depending on facilitator and group, I suppose) very helpful. Mine is much like this forum only with fewer people. Was a life saver especially when hb was home. He enjoyed "his" group, too.
I still go even tho' my caregiving is no longer done at home, but in a memory wing of local care center. The support group I attend is for wives of spouses w/dementia issues. There is also one for husbands whose wives have dementia issues at another time. Spouses w/dementia meet in a separate room with speech pathology grad students and their prof where they participate in a variety of activities. Other spouses meet with a facilitator (who's hb had had Alz) in another room. Meetings are weekly while university is in session. There are other support groups meeting in the same area with different facilitators, times, etc.
Area for Aging is a good resource for all senior concerns as well as dementia programs in my area, and as mentioned, Alz organization.
H was dx with ftd before he was 50. I went to a support group.
Oh, this is not going to probably be of help to anyone, but what happened is that another participant looked right at me and said "I would rather be dead than deal with the problems you have at your age".
So, then, why am I posting this? I guess to indicate that support groups should just be that; they should not leave anyone feel like they need to be scraped off the floor.
Thanks for the responses everyone. I am actually not looking for a support group myself, just looking for opinions around them. I volunteer at a caregiving society and one big issue is low attendance at the support groups. people often are too busy, or only have a few hours to themselves that they don't want to spend talking about caregiving. It is interesting hearing here what types of groups are useful (close to home, monthly, specific to your situation) and which ones aren't (dynamics don't work, too far, resources not appropriate, not specific enough). I'd be interested in any other input you have. The internet is obviously such a great resource, but unfortunately not used by a lot of the population caregiving right now.
My AD wife and I have been going once a week to weekly support group meetings each Tuesday afternoon ... one group is for those with AD in early to moderate stages, and one is for spouse caregivers. Each is led by a well trained social worker and about a dozen people attend each group each week. At the spouse support group ... can't speak for the AD group since my wife often forgets what was discussed in her group ... all of us welcome each meeting and the opportunity to share what is going on in our lives, hear suggestions from others, etc. I've learned many helpful things from others in my group. We are able to help 'newbies' as well as learn from those whose spouses are further along. Many of the issues discussed on this site are discussed in my group ... everything from which adult diapers to use to pros and cons of various AD meds to when to place a spouse in an ALF or NH. We have bonded very tightly and are able to offer emotional support to each other. I didn't see any need for me to go to a support group when I started ... not true, now!
Long before VaD appeared in our lives, I went in search of a supportgroup. This was around1989. Therewere many. Once I found onethat was possible (ime and distance)I called to get particulars. It was a group for Caregivers of various relatives with different maladie. Even soi furtherinquired regarding location and accessibility. When that came up,I explained that I have adisability and needed esy access. The response: It might be better for you to look elsewhere. Your attendance could likely be a deterrent to the other Caregiver's participation. Many years later I found a group for Caregivers (again, mixed conditions),located much closer. Attended for about a year,but as time passed it became pretty much a place to report in and began to dwindle. Funding stopped. End of group.
Finally, went on Internet, well after Dx, found alittle help and then found Joan 's. Specialized; available 24/7; Home.
I went to the local az support group once and was the only one there except the director, a young woman "just doing her job". She said seldom anyone came to meetings. She gave me some material on what is available locally and was as helpful as she knew how. I found Joan's group by "googling" and am so glad I did. I think I like being anonymous when I sound off on this board. We live in a small town so anything at support meetings could be - altho shouldn't be - news around town. Thanks, again Joan, for this outlet you provide.
This site is the best support group I've found. I do have a local AD support group at our Senior Center and the leader is fabulous. However, there are so many people who attend now that only a few get to participate so I don't go very often anymore. I do have friends who are very supportive and I have all of you and that seems to take care of most of my needs, at this point in time. My take on Support Groups, having attended 2 is this: smaller is better if they are facilitated by knowledgeable folks. You must be able to voice your concerns and be helpful to others voicing their concerns and that cannot be accomplished if there are 25 others wanting just the same thing. IMHO
mothert, I agree with you. It’s ironic that this topic should come up. I attended a support group a couple years ago when I could still leave DH alone. I only went 2 or 3 times & there were only 3 or 4 other people there besides the facilitator. Then the facilitator passed away & that was the last time I went. I have a friend at church who takes DH out for lunch after church & comes a few times a month to stay with him & she wants me to go to the new support group. There are 2 sessions, one in the evening & one in the afternoon, so she is coming to stay with DH while I go to the one in the afternoon. I will go & see how it is, but like you said if there are too many people there it almost defeats the purpose. Someone here said that it is a good place to find out what services are offered locally & that will be helpful.
It is true that you often get very good info that many people wouldn't find otherwise and all of the others are always very supportive and caring. The facilitators should be very knowledgeable about what resources are available and just listening to others' stories are informative, as well. When we first get started with caretaking we are so unprepared and so distraut and it helps so much to have others who have been there done that to help you understand what to expect and that help should be sought. I remember feeling so wounded, emotional and alone all the time in the beginning - this is when the group was really, really helpful. I think all Support Groups are very individual - no two are alike.
Each support group IS very different. The social worker who leads our group admits that she's never been with a group that has bonded as closely as we have. For those who can find and join such a group, the benefits are tremendous. All the groups around here supported by the Alzheimer's Association meet monthly and usually only have a few people who sometimes come and sometimes don't, and almost all meet at night. The groups supported by the Alzheimer's Foundation meet weekly, all in the group come each week, and all meet in the afternoon. And, as I noted, they have a group for AD spouses to attend while we spouse caregivers meet on our own. We've learned the names of helpful doctors and attorneys, shared information about differences in ALFs and NHs in our area, and there hasn't been a week when I haven't come away from learning something helpful from my group. This site is awesome. I visit several times a day, learning a lot whether I post my own comment or not. But my spouse support group is also awesome and the personal friendships among people I can see each week ... others who 'get it' because they are paddling their spouse caregiver boats in the same Alzheimer's Lake of Confusion ... well, that is extremely helpful!
Every group is different, and I am fortunate to be in one that is all caregivers of persons with young-onset, ie, diagnosed before age 65. Most of us are spouses, but we have a few siblings. It was started by our local Alz. Association about the same time Joan started her website, and that was about a year into my husband's diagnosis. It meets once a month at night---some (but not all) of our group have also participated in a daytime support group that included the diagnosed when they were in the early stages, but that is a 6 week or so program; ours has been going strong over 4 years. We typically have at least 5 persons each month, and sometimes over 10. We usually just talk, but in February we are having a speaker about hospice care, and in Wednesday we are driving to Galveston (we are in Houston) to hear the author of Still Alice speak. Most of us email each other regularly outside the group meetings, and some of us meet for dinner, go to movies, etc. together. FYI, of the 4 "founders" of the group in 2007, two have placed their spouses, and one (me) has fulltime care for her spouse at home. Most of the other members have part-time caregivers unless the spouse was just diagnosed, since most of our group still works, a majority of us being in our 50s and some with children still at home. And I know several of us visit and post on this website also. I agree with acvann that if you can find a compatible group, it is awesome (despite the fact that all of us wish we weren't there to begin with!)
My husband and I attended an Early Stage support group conducted by the Alz Association, and it was a help to both of us. It was a limited-time group, and then the caregivers transitioned into a support group for caregivers whose LO's still live in the community. About that time, the facilitator asked me if I'd like to cofacilitate the group with her, and I've done that for a few years now. We are fortunate that although there are both male and female caregivers, and different ages, we have bonded and have a core group that attends every month. Although some of the spouses have passed, their LO's continue to attend (for the most part). I have found it a very informative and rewarding activity. It provides a different kind of support than I get here--as acvann noted, more tips on locally-available services. I found the home health care agency and elderlaw attorney (both of whom were excellent) because of the local group.
I have a comment about support groups, but I decided not to start a new thread. I searched & found this one where I commented about a support group. Well I went last night, my friend went with me & so did DH. The facilitator told me that other AD spouses come too. Well to tell you the truth, I was not comfortable with him there with me. To me a support group is for ME. Also, it was obvious that most of the people there had parents with AD. And then of course there was the one person who seemed to comment on everything. The facilitator was really good & I like her, but I don’t know if I will go back again. She has a group in the afternoon, but when I went to that one I was the only one there, so she spent the whole hour letting me talk & talking to me & I felt like I had a session with a counselor (which I really liked). My friend thinks I should go back to see if I can make any connections, but to be truthful with DH there I couldn’t really talk to anyone & I didn’t really get any vibes from anyone. Another thing, I think the group has been in existence for over a year & it seems kind of cliquish. I still think this is the BEST support group EVER!
I don't go, never have gone and don't intend to go. I have never liked "group" things or clubs of any type. When I first learned of my dh's problem I read everything I could and still do by going back and re-reading about Alz. This group has helped me more then I could explain. This is the "real" thing, the real problems and the answers come from true experiences and they relate to spouses I think it is great if that is what someone wants to do and good for those that sponsor and conduct the group....but, it is not something I want to do.
Bringing the AD person to a group IS strange . . . . The Alz Assoc had one where I brought my wife but 'they' went into another room while 'we' talked. It doesnt make sense to me to have them there(?) They have their issues certainly, but support is for about what we have to do.
I also agree, I dont have much 'empathy' (if that is the correct word?) for people who have grandparents with AD or even older parents. Again they have their issues, but as Joan says . . . . . "our issues are unique".
i tried several groups in our area, morning., lunch and evening. for me they all were the same. same question asked "are you sure it is Alz" . bobby was 52 and me 45 in 2007 at dx, do you think i would come for the fun of it. i did find one group that was a caregiver in general group. they had very interesting subjects once a month on laws, nursing homes, estate planning etc. i only go to it if the topic is one i would like information on. so thankful for this group!!!
I went to a support group ONCE. It didn't seem to me that anyone was in charge. The group was supposed to meet for 2 hours and one woman hogged the first hour. All her stories were horror stories to me. My dh had just been dx'd and I wasn't ready for horror stories so I left after the first hour and never went back.
I went to a support group once and was the only one there. The facilitator was very young and I felt just there because it was her job. She was nice and gave me lots of material to read. I live in a town of about 20,000 and I know some people with family members who have az but I suspect they may not have sitters so they can get away. My dh doesn't think there is anything wrong and taking him would be out of the question. I did receive a call a few weeks after the meeting from someone who was with the az assoc. I think. She asked how I was and if I needed anything. I told her thanks for calling and that's the last I've heard and that's been several months. I appreciate this forum and have learned lots from those that "have been there" and those like me who are plodding through each day. This is the best place for me right now.
These posts have identified some valid problems with support groups. If one lives in a major metropolitan area, there are Early Stage groups; Young Onset groups; groups for only spouses; groups for adult children, etc. Those breakdowns can provide a good support system because of their limited focus. However, in smaller towns, the groups are more general in nature and I can see where they can fall short.
I attended a FTD Conference at Northwestern University this past Saturday and as one of my break-out sessions, I attended a caregiver support group. I have never been to a group that was just for this type of dementia and have to say that I am no longer happy with the group I have been attending once a month which is more for Alzheimer caregivers. The meeting was very intense but helpful in that no one had to explain the disease to anyone else. We could just talk about our feelings to each other and even help some of the others with their guilt feelings. It was facilitated by two neuropsychologists. I really wish I could attend this support group (which is held once a month). But the distance and having no one to watch my husband in the evening won't allow me to go. It has spoiled me for other meetings.
All the ones in our area are in the daytime, and I work. I made arrangements to go to one - my boss agreed to let me leave early once a month to attend. It was at a rehab facility next to the medical center.
I found the facilitator and she said she wasn't sure if anyone was going to show up for the meeting. Strike one. She finally rounded up one person for the meeting, a woman who was a hospital volunteer and really had no intention of attending. Strike two. So the three of us sat there. The other woman said her mother has AD, and she is in a nursing home. The woman has several siblings who share responsibility with her, but pretty much all they do is go visit her. She and I had nothing in common. Strike three.
That is why I love this board. So many "outsiders" do not understand that it's totally different when it's your spouse who has dementia. But here, everyone understands.
I went to a wonderful support group in the other state I lived in before coming here. When I got here, I went looking for a good support group like the one I was used to. The first three I went to were each a disaster, but, the fourth one is very good. Of course, it is somewhat different, but, the people are wonderful and I not only enjoy it, but, get a lot out of it.
I go to a great group once a month for early onset dementia caregivers. Used to be around 8-10 people at a meeting, sometimes just 2, but it varies. I go mostly for seeing peers but also get (and give) practical advice. Most of us are spouses (but some have parents with dementia, still at an early age) but we have at least one caregiver who has a sibling with dementia. It meets one night a month.
It is important to find a group of people with similar situations. Relatively young, around 1/2 with children at home, and working outside of the house. While it varies around 1/2 are dealing with FTD (like me) instead of Alzheimer's, I believe this is related to the age of the onset of dementia.
It has been useful to be able to talk about our problems with peers. Having a good moderator is important so one person doesn't dominate the group, but to also give a person extra floor time when they are dealing with a fresh disaster.
Welcome paul c. Many of us on this site have spouses with FTD. I am one of those spice (plural for spouse). As you can see, many of us have this site as our only outlet or support group. Glad you've joined us.
Abby, you must have just run into some poor ignorant soul with no intestinal fortitude or we could go lower!!! Joan's is the best place to be and I can come here anytime day or night. I would be open to a group specifically for spouses because taking care of my spouse is my life and I don't have time to hear about other issues frankly.
Thanks, LFL. http://ftdsupportforum.com is my main support group. I think this site is very good and Joan does a great job running it, but comments are visible to unregistered visitors and at this time my wife wants to keep her FTD secret, so in respect to her wishes I need to avoid making comments that could become public.
Yes -- I attend two groups. One is sponsored by the Alz Assn and is facilitated by a woman whose husband died two years ago from EOAD. The second group is offered by the Adult Day Services organization in our area. It is facilitated by the social worker I see for counseling. I get something from each group. The first is open to anyone dealing with AD in a parent, friend, spouse, etc. The second is a general caregiving group, but so far most of us are dealing with AD in a spouse. As much as I find great information and empathy from this website, I find it very helpful to talk to people in my area who are also dealing with these issues. I don't feel so alone then.
I attend one support group meeting a month sponsored by the Alz Assoc, it meets for 1.5 hours at lunchtime, which is good for me since I am still working. I find the support very helpful, especially for local resources, as others have shared. Our facilitor is fabulous: she is a consultant to caregivers and ran a day program for many years. She has many tips to offer and is skillful at giving everyone time to share. We have had a few guest speakers. Attendance varies, at one time it was getting too big so a second monthly session was offered but that never took off and the large group size turned some folks off, so our meeting has been averaging 15 or so folks. I am very grateful my supervisor lets me count the time against my family medical leave. Overall, I'm giving my support group a big thumbs up.