A fellow member of my small church group has encouraged me to attend Alzheimer caregiver support group meetings, held once a month at the facility where his wife is being cared for. It might be a good idea. I have a couple of concerns.
1) My husband, though his capabilities have diminished in many areas, is still quite capable of considering the significance of me going to an AD support group, and I'm trying to think of how best to word it, should I decide to go. He doesn't really need to be left thinking "am I that hard to live with that you need support?" I suppose I can say something like "meetings for learning more about Alzheimer's, and how to deal with it."
2) Well, I guess I have to try it to see, but I still sort of think of myself as "not quite there yet," from the standpoint of Alzheimer "big issues." Another way of saying this might be that while I'm very cognizant of my emotional/companionship losses, our lives are really not all that difficult, yet. So I feel a little bit like a pretender. Kind of like when I was 2 months pregnant with my first child and I decided to go maternity clothes shopping. I ended up leaving because I didn't feel like I was really pregnant yet. And obviously I was, just as I am really married to a person who really has Alzheimer's.
What are your experiences with real-time support groups?
I'm putting it off for the same reasons you are. My husband, like yours, is mostly doing OK although I think he might be further along than yours is. I've had the 800 number for a couple of months, and recently found a 50+ newspaper that is published monthly. There are several groups in my area and now I have telephone numbers for those too.
I guess like you, I need to know if I ought to be going to one of those groups now, or if I ought to wait.
It depends on the TYPE of group. When you call the Alzheimer's Association, ask if they have any EARLY STAGE groups. Our social workers have told us that people who are dealing with early stages who go into groups that are discussing diapers and Hospice are scared away and never return. Completely understandable.
But to be able to sit with people who are trying to cope with the same Early Stage issues as you can be encouraging, helpful, and comforting. Just to be able to discuss and share the same problems has been lifesaving for me.
Our group is also somewhat unique in that it handles both AD spouses AND their caregiver spouses. We meet together for 1/2 an hour, then split up, each group going with a different social worker. Sid looks forward to those meetings. The only time he has ever missed a meeting has been when we were on vacation. One time, I was sick, and he went to the meeting by himself, because he didn't want to miss it.
As I have mentioned in Blogs, we have bonded with many of the couples, and we get together socially. Once a month, 4 couples, and sometimes more - we welcome everyone with open arms, go out to dinner, and then back to someone's house for coffee and dessert.
We "girls" go out to lunch every month or so, more often if someone is struggling and having a difficult emotional time - if she needs us, we're there.
Our guys try to get together once a week to do something fun. This week's fishing trip got postponed - hopefully they can do it next week.
I absolutely, whole-heartedly, recommend at least trying out an Early Stage group if you can find one.
My daughter who is an adult and living with me (we both work full time) go to the Caregiver group at a church once a month. Most are caregiver spouses, but a few are caregiver daughters. One was a caregiver sister ( the AD sis who had become very angry and verbally abusive and refused to leave the apartment and refused to go to the doctor for five months that I know of - even though we all encouraged her to get her sister to a doctor and get some help. The woman had no other relatives and she and her sister had been very close before AD. We kept encouraging her and told her about different doctors she could call and different local organizations that she could go to for help.)
Some of our group are just getting their spouses diagnosed, some have been diagnosed for 10 years. The new ones who are still allowing the spouse to drive after being diagnosed are the ones we make certain know the legal ramifications in our state. (It took them three months to convince me!) And our group discusses whatever problem someone is having from each of our own prospectives and we learn from each other.
This past month we learned that running water soothes the AD person. Whether flushing the toilet (some overloaded the toilet paper and caused the toilet to flood their condo for a $35,000 lesson in turning the water off after the bowl is full and when he is not around turning it back on and refilling the bowl. It is more work, but cheaper!), watering the lawn, leaving the water running while rinsing the dishes, wiping down the counter, cleaning the stove, etc. (it became an additional $10.00 a month on my water bill before I told him I wanted to wash the dishes now!!) The others said that they were running into the same thing in various stages.
I am mentioning this as an example of one of our discussions. Our group has become a big help to us. One friend of mine has started coming as her mother has been diagnosed with AD. However, she can still talk and calls her at work 15 times a day and can't remember that she has already been over to her house that day.
My husband can do the chores he's always done, but at 1/4 the speed at which he used to do them. He can sometimes relay to me what he wants in one or two words, but can't talk in sentences and when he tries, the sentences don't make sense and I have to figure out what he means, if I can. Sometimes he is concentrating so hard on one thing that he can't even hear me talk to him. He has to be reminded to take a bath, and takes a LONG time dressing himself, but still can.
The others have helped me figure out what the next stages I should look for, but every individual is different and some stages overlap. I am so glad I found this website, because we discuss things here that they don't.
Also, our group knows where to turn for grants and monies available for caregiver help. This has been wonderful.
Please check your group out. There is probably more than one in your area. I would suggest that you find one you are comfortable with.
I share Emily and Starlings feelings. Even if I could find a group such as the one Joan is in, which would be wonderful, I doubt if I could persuade my husband to go. He has always been somewhat of a loner. Moreover, he thinks we are doing just fine and I guess we are for now. I have done a little exploration on what's available in our area and it seems the only thing is for people in the early stages. Our diagnosis was 5 years ago so it is unlikely to be considered early. I have never brought myself to actually phone and am only going by what I am reading on the web. We do not belong to a church so that is not an option for us.
When I went to my first support group meeting about two years ago, my first comment was, " I don't know if I belong here." My wife's symptoms were relatively minor and we weren't sure of the diagnosis. One of the men there had just lost his wife and although I couldn't relate to his experiences in the later stages, I was impressed by the patience and love that he expressed. I do remember that even after his wife did not recognize him anymore, she still felt secure in his presence. It gave me something to strive for, at least. Of course, my needs are greater now, but I don't feel that I have to share them with strangers. I have made a few true friends and am glad to know people who are going through the same experiences as I am.
Last week, I went to another support group which is for fronto-temporal dementia. In one meeting, I met two other people whose spouses have PPA. One woman's desvription of her husband was almost word for word how I would decsribe my wife. Suddenly this "rare" condition wasn't really so rare after all. Although I was the newcomer, I left that meeting feeling that I truly wasn't alone.
My only complaint about the face-to-face groups is that they don't meet frequently enough. Ours are only once a month and although you can go to more than one, they tend to be clustered around the second week of the month.
I noticed that Inge mentioned bringing her husband along. This is apppropriate for some groups, but, for the most part, the groups are to support the caregivers. This is your time to discuss your problems and feelings and you may not want your spouse there. I always fear that it may be frightening for the spouse to herar other people tell about the behavior of their family member who may be much farther along. Check with the group facilitator.
Inge, you do not have to be a member of a Church to belong to a Caregiver group. The Churches just give the groups a place to meet that is free and safe. Usually one of the caregiver group would be a member. I am not a member of the Church that our group goes to (our Church doesn't have a caregiver group). Don't let that stop you from calling and talking to the association and finding out the leader of that group and call and talk to them. Our group does not include spouses in our meeting, nor do we socialize together. I could not talk freely about what is bothering me in front of my husband. He has too much pride. Ours is not a social group as well as a support group as Joan's seems to be, but ours is for the caregivers only. I wish we had one like Joan's here, but we don't.
Since we are traveling constantly I go on the Alz. site and find a group in the area. This is the big problem - what do you do with the patient? Sometimes I can go, but it is becoming more iffy to leave Hank by himself. One place would allow me to leave him with the convalescent unit - oh my, he isn't in that space and would be horrified if I left him there!
My husband is not yet diagnosed but it is clear the he has AD or some form of dementia. I can no longer ignore the symptoms because during the past month he has started getting lost going places where he always goes (store, MD etc.) I have been desparately trying to find out what to do now. I have had many sleepless nights worrying about his working, (he teaches a couple of college courses), his driving, getting lost and forgetting his cell phone or giving the same lecture twice. We have talked about his forgetting (he denies he has a problem) so I was constantly worrying how to get him to the doctor or recognize a problem and on and on. My mother heard about a support group and I went to my first meeting (very scared) but I got through it and learned so much invaluable information and everyone was so very supportive. That meeting was almost 2 weeks ago and because of the information I received, I have begun the journey..... with all the information (and this website) we have gone to the first evaluation appointment (I told him our MD set up the appointment), I have met with our attorney to start the process of estate planning, and we have an appointment with the neurologist in a couple of weeks.
The best thing is I am feeling more calm, and I am sleeping most nights. I don't yet know the support group members which is a mixed group of caregivers and AD spouses who are in all stages of AD. I would really love to spend some time with people who are in the same stages. For me right now it is too depressing to hear about caregivers bathing, dressing, feeding their LOs.
So I really recommend finding a support group and GO! It may not be for everyone but like everything else, you'll never know if it can help if you never try it. I felt I had nowhere else to turn-no one else can relate to what we are going through except others who have walked in our shoes.
Comment Author Nansea Comment Time3 hours ago edit delete
Hi Joan and all, I am wondering how the support group for the Alz people is handled. We both come to our Support Group, then the Caregivers meet in one room and the loved one with AD meet in a different room. A facilitator is with each group, but my DH would complain that she always asks the same question. Sometimes he would not even go. Now that he is farther down the road, he looks forward to meeting with his friends. Do they ever play games? Thanks for all your help - to you Joan and all. Nancy
Another caregiver and I asked to begin a support group where we attend church as there was not one in our area. In early stages, I did not want to hear all the bad things to come, etc.... just shutting it out made me not dread it or face it at that time!! I was not handling things well as I was so depressed and felt so let down over crushed dreams, and adjusting at first. When we ask, I was ready as I can't talk on the phone, as he doesn't want me to discuss how he is, etc... not even to our daughters. I couldn't talk as he is always with me when people ask how he is- we're just hanging in there. Now, he attends the meetings with me and is in the room, but I try to include there HIS feelings as well and he enjoys the meetings. I thought it would be a turn off for him , but they all talk with him ,and treat him kindly , so he enjoys the company and feels they are people he can "be around". so I am glad. I have learned SO much about the disease that I would not have known and I continue to learn from here also. My dad also has dementia so I told him it was to help me learn better how to help. He accepted that.
Today I attended my first face to face support group for caregivers. The facilitator was a worker at one of the local Hospice and Home Health Care Businesses. There were about 15 assorted people representing assorted stages. At least 4 of us were first timers. They have 75 enrolled but obviously do not attend every week. I felt like I knew more than the rest of them there, due to all I have learned from the posters here and this site, but I enjoyed the discussions with others, sharing some of the same situations I have. I plan to go back next month. The facilitator recommended we caregivers have at least 3 half days a week of respite care. GEEZ....Too much for me. Right now once a week works better. He gave out a pamplet about an Adult Day Care in the same building as a Generatic Doctor and operated through their offices. Cost is only $30. for 4 hours or $50. for all day. They have to bring their own lunch or have money for order-in. My DH is not ready for day care. He would be mortified.
I always feel like I know a lot more than the people who attend my support group, run by an employee in a research group which does various kinds of clinical trials, including but not just AZ. Others of you who go to support groups, who runs them? are they run by someone associated with a non-profit/church group, or by a business?
I have never been able to go to one. I work through the day and there is no one to stay with my husband in the evening. I think I would enjoy it though. I LOVE this site and have learned a lot, but since my husband has not been able to speak for so many years, I often yearn for the spoken word.
briegull i agree with you on that. i lose patience when in a group where so many are so clueless about the disease and here we rehash just about everything . joan you should rename the group "everything you wanted to know about AD" (and then some you didnt!) " the interaction of face to face has its merits of course and the respite time:) divvi
edis, can you track down a local group and call and tell them your situation? maybe they have volunteer sitters that can stay with DH while you are there?
At the first meeting I went to Wed. the facilitator spent the first 20 minutes time reading and describing the stages of AD. First the 3 stage, then the 4 stage, then the 5 stage and then the 6 stage -----from a Altzhimers for Dummies Book. The describing of the stages was good because half of them there had no clue but he sould have copied the information and left the book in his office.
The good thing is maybe he will learn something from me that I have learned here!!!!!!!!
Generally, it is best to go to a support group run by social workers from the Alzheimer's Association. They are experts in the field of Alzheimer's Disease, and understand the disease and its effect on the caregiver. Call either your local Alzheimer's Association or the Alzhiemer's Hotline - 800-272-3900 to find a group in your area.
It is just my opinion based on what I have heard from other caregivers, that counselors, clergy, and medical professionals who have no experience with Alzheimer's Disease do not make good Alzheimer support group facilitators.
I have been going to a local support group. This is a good place to make contact with other caregivers and have been there done that. Most are alot older than me and do not face the marriage issues that this site does. I told my wife about it and has no issues with me going. I told her that I wanted to talk to a therapist and she did not like that I was under stress and she felt guilty for me needing to talk to someone. This week I saw 2 therapist, the first one was clueless, I spent half the hour explaining what AD is and what issues I was dealing with. I then decided to look else where. The 2nd was great, she understood and knew the issues.
I talked to both about my extra relationship and both encouraged me to continue the relationship. So I feel good about getting some help.
Amen! Joan. Remember the time I shared with you all about my caregivers' group meeting at a neighborhood church. The facilitator was a retired minister. He admitted that he had not even KNOWN anyone with AD, but was there "for us". The third or fourth meeting I attended, we were talking among ourselves (caregivers) about how we feel so trapped at times and how we often wondered why "WE" were in this situation. The facilitator interrupted and began to rant about how wrong we were to even ASK that question...and that we needed to "BREAK THE MIRRORS" and stop thinking just about ourselves in this situation..etc. etc. I came home feeling so bad. Was I really so self centered. Was I wrong to ask "why me"... What kind of wife would put themselves ahead of a spouse who was sick...and go against our marriage covenant "in sickness and in health".
I shared this with Joan and all of you...and we decided we were OKAY...he had the problem because he had NO IDEA what life was like being a caregivser 24/7...and had NO BUSINESS being a facilitator for an Alzheimer's Caregiver group. He doesn't know he was fired. I do think he has noticed I'm not there anymore. It's probably a whole lot quieter in the room. :-)
We need to go to groups where learned people are in charge..not someone like I experienced. I felt bad enough as it was, and was looking for support and validation. I came away feeling guilty, ashamed and - had been chastised for thinking of myself in the midst of the big Alzheimer's Picture.
It was this group that reached out and put me back into an upright position.
I agree with Joan that the Alz Assn support groups are the best I have encountered, BUT as she said, they should be run by social workers or other professionals with the right education and training. I attended other groups--sponsored by the Alz Assn but at some residential facilities and an adult daycare--and they were not as effective. One group was run by a Nun, one by a former dementia caregiver, etc. There was merit to attending all the groups, but I think the ones by social workers, etc. are a cut above. The last thing any of us needs is an experience like Nancy described above, which adds stress to our lives, instead of reducing it!