The funny thing about support groups is that when I first wanted one which would have a section for both Jeff (the AD person,) and myself, none were available in our area. This was a couple of years ago. Last month, due to friend connections, I got wind of one very nearby, and we began attending. First there's an informational session on some topic or other, for everyone, then we split into the two groups for talk.
We've gone 3 times. I hoped it would be a positive thing for Jeff to meet others in his situation, and come away feeling less like the only man in a sinking boat. I'm reevaluating. I believe the bad may offset the good. After the last couple meetings he's come home somewhat grumpy and antsy. Partly, because in his group "everyone drives" but him. I know this is not true, but if it's his perception, it might as well be true. He spent the week following the last meeting ruminating obsessively over how he got to be "the guy with Alzheimer's." How did they make this diagnosis? Where did this stigma come from? He's no different from anyone else, he says.
I can see no point in causing him to confront the Alzheimer's specter by taking him to meetings if his brain would otherwise allow him to forget about it.
I agree emily. No point in causing more frustration for him and then you too. If you want to go and glean whatever you can from the group, fine, but I would not take my DH to such a meeting.
I believe Joan has that kind of support group and it seems to work well for them. Not all of them are the same, though. That would sure make it easier for us to go. I wouldn't have to leave him. Sorry yours didn't work out well, Emily.
Mine has minded in the past going to the once-a-month one we go to (at which I usually know far more than most of the others there, thanks to this site), because there were people there who were farther along than he. But the women who meet with him and the others are really good and he has gotten to like them. Or DID, but now hasn't been since May. We'll see come Mon. how it goes.
The VNA nurse who came today said when I said "dementia" as a diagnosis, "you know there are 12 kinds of dementia and there's a lot of overlap.." and I said exactly. That's why i *said* dementia instead of Alzheimer's.
For a year we attended the type of support group Emily described. The social worker who stayed with the people with dementia told us spouses that the ONLY topic that was discussed in their group was complaining about not being able to drive. Attending didn't seem to bother my husband, he just took it in stride. We spouses are still meeting several years later and we all get a lot out of our group.
For what it's worth, our doctor said that Dementia was the "symptom" of a brain disease. Just as Limping would be the "symptom" of a bad knee/hip/ankle. Headache would be the "symptom" of a brain tumor, sinus infection or a bump on the head. I've gone with that definition, because it's clear and understandable.
Our support group is as Emily described. We all meet for 1/2 an hour together to discuss upcoming events, and then we split up for an hour. The caregivers go with one social worker, and the AD patients go with the other social worker.
We caregivers spill our hearts out to one another, and our social worker is excellent at facilitating and keeping things on track. We really don't know exactly what goes on in the AD group, because both groups are confidential, and if we ask our spouses what happened, they can't remember anyway. But I do know that they talk about problems they are having, and often they play brain games. Some AD people do not like the group, and never come back, but for the most part, maybe because it happens to be mostly guys, they love going. They feel comfortable with each other - they derive comfort and support from knowing that they are not alone in their struggles.
And many of us have become very good friends outside of group. Our support group is our social circle. The ladies get together once a month for lunch. The guys now have a monthly outing just for them. And we get together as couples. We're very, very lucky that it has worked out so well for all of us, and we know it. We DO have wives, sisters, and adult children, who come without the person for whom they are caring, because that person absolutely refuses. And denies there is anything wrong with them.
But for the most part, it has worked out very well.
My dh came along to the "Alzheimer Cafe" the first two times, but he was grumpy and upset afterwards, so now I go alone. There is no separate group for patients. I mentioned these separate sessions to the organizer and she was surprised, had never heard of such a thing. The doctor who started this Dutch organization started it initially FOR the patients, and it has stayed that way in principle, although the patients at any meeting are usually much outnumbered by the caregivers and family and friends. I always go if I can. There is usually no new information for me there, but it is interesting nevertheless to talk to other people in the community, and always comforting to talk to other caregivers. Last time I talked to the supervisor of the AD unit in a local nh, so that is a useful contact. Also interesting to get the Dutch angles on practical things, since a lot of that kind of info here is not relevant to my situation.
We don't have a support group that includes the patient. And several times in the last few months I have been the only one attending the group (other than the leader). That's probably what comes from living in a rural area.
We go to a group similar to Joan's. We meet once a month for about an hour and a half. In truth it seems to end when the patients are ready to leave. Sometimes there is a program that caregivers and patients attend together. Other times we split into two groups. Some of us usually go to IHOP for lunch after the meeting. We talk about doing other things together, but we haven't yet.
I just don't get it. Taking the Alzheimer Spouse to a caregroup meeting. It would shut me down totally.
IF my husband COULD understand (and who knows for sure he can't) that we're sitting around talking about the challenges and difficulties in caring for them as they slide down the Alz. slide... how could that NOT affect his fragile self esteem and dignity. I believe taking them along belies the purposes of a SUPPORT group. Granted, we all know that since Joan has been administering this site for two years, her Sid would be reading our whines and wails and occasional proclamations of "wanting a way out of this hellacious life"... I would NEVER have let my husband read one word of what is written here. I think she has handled it differently with Sid. He has FTD,..and the site is Alzheimer's site...so he probably thinks this is really not about him at all. I'm only guessing,but it has to be different in their home.
I went to one only "in person" Support Group at a Methodist Church and the facillator (a retired minister) admitted he had NEVER had a family member with AD, nor had he had much experience with the disease. He is the one all of you heard about months ago. When I said something about 'not having a chance to live my own life'...he shouted that I should 'break the mirror of self indulgence"...and stop my selfish thinking. Sorry. I didn't go back. I like you guys so much more. True, you tell it like it is, but you come from the road of experience. I trust your words. What did he know about how it is???
I think if anybody tells me to "break the mirror of self indulgence" I shall cut them to shreds with the broken pieces! (Excuse me, got a little carried away...)
Weejun - getting carried away is good under some circumstances! . . . "the mirror of self indulgence" indeed. Not only wouldn't I go to his support group - I certainly wouldn't go to a church where he was pastor.
My DH & I went to a "combined group" for years through the Alz Assoc and most of the time the group "broke up" into the patients and the care-givers. My DH never really complained about going but know that others' spouses did and it was difficult. We had to attend the group together, or could not go at all...we went regularly. One thing I remember from 'early" in the group (2004 or early 2005) was that the patients were all at different levels...one in particular, my husband helped in the men's room after one of our meetings. On the way home he said "man that was sad. He didn't know how to hold his own weenie to pee"...I have no idea what I said, but looking at our life now 4+ years later, it has evolved to that and then some. This disease just marches on & on & on. I now attend a couple of different support groups without spouses...I think they are very helpful because alot of people even return to the group AFTER their loved one has passed, helping others with invaluable information. It's good to attend in our area because people who've gone before us are familiar with the resources in our area & offer that info as well. Needless to say, still learning alot as we march along...I truly encourage Support groups, altho I know it's not always easy to get to them.
Nancy, I agree entirely about being shut down entirely (I never said a word while he was along) and about the fragile self-esteem; Siem seemed to think it was all about his mother (who died of AD) but it was still upsetting for him.
I would never let him read these boards. He never looks at my computer screen, but the other day he came by and saw the word Alzheimer at the top of this one and was quite interested to know what it was about. He hasn't a clue in the world.
Nancy--At the support groups which are for both AD person and spouse--The people with AD DO NOT listen in on the group where the caregivers discuss the challenges of caring for an AD person. That would be bad, you're right. What happens is the group splits into two, with 2 different facilitators, and the AD people share their own struggles, from their perspective with each other. Usually--whoever said it is correct--they talk about the frustrations of not driving. Some of them do seem to find it useful and enjoy the socializing. Mine would just become moody about having to think of himself as "a guy with Alzheimer's," so it's not good for him.
We go to a group where the people with dementia meet separately from the caregivers. My husband doesn't complain about going or seem discouraged afterwards, though his best friend in the group died a few months ago. But he has Lewy Body Dementia and is quite aware of his deficits. He always had Attention Deficit Disorder so he learned a long time ago not to feel badly about himself when he makes mistakes. (So much so that I found his lack of regret frustrating, felt he wasn't trying to do better. Now I accept he can't do better.) I find the caregiver group only marginally helpful--we tend to talk about fairly surface things.
You are correct in saying that it's not appropriate for a patient to attend the same group as the caregiver, but in the ones like mine, where both of us go, there are SEPARATE groups for each. We are NOT together to hear each other's problems. We ARE together for the first half hour, but that's just for announcements about upcoming events, good news about families, and introductions.
The ones with the AD don't remember what they do in their group anyway. EXCEPT when Sid went on for MONTHS about the driving. EVERYONE remembered that. Except Sid.
Sid DOES have Alzheimer's Disease. It's just that lately, his frontal lobe area has been more affected than the other parts of his brain.
Pamsc said that her caregiver group tends to talk about surface things. I found that in my group, which is why I started this website. No one was talking about the deep EMOTIONAL trauma, especially related to marriage. And I needed to talk about it. In a group of strangers, sitting face to face, many people are uncomfortable discussing certain subjects (intimacy, resentment, changing feelings towards spouses), especially if it is a mixed sex group - men and women. That's why some of the women from my support group get together once a month, and REALLY talk.
Ours was today. My husband goes quite happily now - awhile back there was someone who was really far along, but still walking, silent; he was spooked by him I think - but that one died of a stroke last year. And now there are two or three cheerful men who seem to talk and laugh, and the women who talk to them are known to them now, and friendly, and today he tells me he ate three large cookies with pink sprinkles on them.
In the caregiver group, the facilitator doesn't know how to bring someone's laments to closure: today there were about 12 people and one man and a woman monopolized almost the whole first hour. The man is in yes-but mode; the woman was new and is now caring for her husband after caring for his mother, his sister - a whole family with AZ.
One woman there had a husband who had apparently had an absence seizure, just passed out but the doctors could find nothing the matter after a lot of tests and so now they're going to have a group meeting of all the doctors and discuss what to do with him, whether to put in some kind of pace maker that isn't a pace maker (!) ... and he's NINETY!! I was the only one who'd had experience with the seizures and tried to reassure her that she didn't really need to do everything they tell her to. Oh, and he's still driving. "But not FAR!"
briegull, I had the same problem at our group last time. I had an issue I really wanted to talk about, and one woman monopolized the whole time. Every time she paused one of the men and I tried to talk, but we didn't get to. Towards the end, I finally got irritated enough that I interrupted her and said that both he and I had something to say. He went first, and by the time he finished, the spouses wanted to leave and started coming into our room, so I didn't get a chance. The leader of the group is not at all a good facilitator. She said people have complained about the same woman before, but she doesn't know how to stop her constant talking. Duh... I prefer it here too.
You might just say "a meeting" Weejun...not sure how YOU think he would react. Do you typically leave him @ home for 1.5 hours or so and if so, is he okay w/that? I def would not give him any more info than is necessary because it might worry him, if he's in a worry-type stage. I never tell my DH when I'm going to a meeting as I don't think he'd be able to grasp it now anyway. :( Hope your meeting goes really well!!
Weejun, I tell him I'm going to a meeting that's planning all the senior activities that we go to, but "this time" the meeting is just for the ladies. By the next time he's forgotten and I can use the same fiblet again. So far he doesn't move from behind the TV, except maybe to raid the refrigerator, and it's usually set to the same channel as when I left. He does get a little disturbed if there's a phone call that he doesn't know how to deal with.
At our meeting yesterday, the woman whose husband had blacked out said, innocently, people don't DIE of Alzheimer's, do they? And NO ONE said YES, until finally I did. Even the good gent who has come out on the other side but who is there as a resource said, well, you can die of complications of Az. Which I guess is technically true. Somehow I just get impatient with people who can't begin to contemplate 90 year old people of ANY variety of ailment dying. WE ALL DO, FOLKS!! FACE IT!! You don't get out of this life alive, and *I* don't, and our beloved spice don't.
Nancy--Another thing on the combined groups--in our group, the word Alzheimer is never used in the presence of the people with it. It was called "Early Stage Memory Loss" and was handled very sensitively. One thing I've learned about the Alz Assn--the way the chapters are run vary very much from state to state. Apparently, there isn't a lot of control from the headquarters (Chicago). If anyone is disappointed with their local chapter, I'd recommend first going up the chain of command right to the director and make your presence known. Those of us on this website are the exact population they are supposed to serve. (This is especially important for those of us with EOAD spouses--EOAD has been a particular focus of the Assn for a few years now.) If you don't get satisfaction, I'd contact the national headquarters and let them know as well--check their website for contact info. They might not do anything, but things will never improve if no one complains. You have made a valid observation that your state's chapter doesn't serve the area you live in--that should be addressed.
On the issue of the retired minister's comments, if that was a group sponsored by the Alz Assn, again, what he said should be reported to them. If it is strictly a church group, I'd suggest talking to whomever he reports to. It sounds like he's doing more harm than good!
Could somebody explain to me why we try to keep the dreaded word "alzheimer's" away from our spice? Come on, it is what it is and it's not their fault so why the big secret??? This reminds me of when I was a little girl and my friend's mom died of CANCER. Everybody whispered about it. No wonder the medical community and the general population don't know much about it -- we won't even talk about it to the person WHO HAS IT.
I don't understand it either, Weejun. My DH and I have used the word "Alzheimer's" since day one. It is what it is. When he was diagnosed, his sisters asked how they came to that diagnosis. I said, MRI, MRA, EEG, blood work, coupled with the fact that their mother died from Alz. They said no, Mom didn't die from Alz. (I saw her death certif. and it clearly said Alz.)
Weejun, when I was 8 years old and my aunt was pregnant at a family reunion, NO ONE used the words Pregnant nor in a family way, or going to have a baby!!!!!!! Look how far we have come! <grin>
A lot of us don't think that there is a stigma attached to Alzheimer's, but apparently saying it aloud might be catching it, so people shy away from it. My husband, upon getting the diagnosis from the neurologist, after we got home, e-mailed the kids and our friends and told them he had Alzheimer's himself!! We have always discussed it, and we have known since the beginning that it causes death if something else doesn't kill you first.
Our support group here that I am the facilitator for at work seems to be "what do you do for this" and "how do you handle that" so I've brought up the medic alert information, the J.C. Penneys pants, the dead bolt key locks, and lots of brochures in how to stop them from driving! <grin> Most of them are taking care of parents rather than spouses.
This is my support group for ME!! I wouldn't have gotten this far without Joan and this website. Thank you again, Joan!
Well, I use the word Alzheimer's to everybody, but not to DH himself because he doesn't believe in it and it upsets him. He is angry at any medical person who uses the word to him. And there's no sense in making him angry at me by using the word. He's not going to believe it no matter what I tell him (and I did try, way back when I was trying to REASON him into not driving anymore -- useless). Complete and utter Anosognosia.
Although the term, Alzheimer's Disease, is used in our support group, the AD group is referred to as those with "memory loss" because not everyone has AD. There's Lewy Bodies, FTD, Vascular Dementia, and so forth.
We have also used the word ALZheimer's since DH was first diagnosed. The following Sunday at our regular breakfast with friends (20 of them); he announced that he had ALZ. Everyone thought he was kidding and some of the men said they had it too (they were kidding). They know better now. And there are two of them whom I know have it - but they nor their wives will admit it, or get any medical diagnoses. So sad -- the total denial. But we have always talked about it, he knows the good (??), bad and ugly about it.
Vickie, I have a friend who I believe is in denial. At the luncheon yesterday she was saying about her husband forgetting things. Apparently the family doctor gave him a mini mental and he had a CTscan. I forget what the CT scan showed but I told her about Aricept and Namenda helping my DH. I also told her that they don't cure Az they just slow it down FOR A WHILE. She seems to think it isn't that bad yet so I can't imagine what she is waiting for. It could end up being too late!
the stigma attached to the word Alzheimer is why we dont have the necessary funding and all the extras that cancer research gets. my opinion only. its time to scream the word to high heavens and to use the word at every opportunity and get it out into the public without hiding behind the 'memory loss' antic. undermining the severity of the disease by lessening the impact of the word is getting us nowhere in my mind with regards to getting the info of the horrendous changes that occur thoughout the disease. i do believe in not upsetting our spouse if they understand the connotation of the word- if that is the case then memory problems is a better choice to use around them.
how can it be useful to getting the word out if we dont use the WORD? but chose to lessen its intensity by the not so alarming words like 'memory loss">? loss of memory is only the beginning. there is so much more as we all are so aware.
I don't use the word ALZHEIMER'S because my husband doesn't have ALZHEIMER'S. It might make it easier for me with people who don't know that there are multiple reasons for dementia, which is a symptom and not a disease.
And I find it very frustrating that everything out there that I use for support takes it for granted that I'm dealing with ALZHEIMER'S because I'M NOT!!!
I really wish this forum was called THE DEMENTIA SPOUSE, but it isn't and that is reasonable because the person who owns it is taking care of someone who does have Alzheimer's. I'm grateful Joan is willing to let me in so I can be part of the group. I'm also grateful that the Alzheimer's Association takes care of all of us caregivers. But I've always been careful to make sure that if I send someone to the hot line that they know they will be welcome there even if Alzheimer's isn't the reason their LO has dementia.
I'm really grateful that Joan gave the reason her in-person support group doesn't call itself an Alzheimer's support group. They also want to be inclusive. Where would I go if they, and Joan, weren't willing to take me in?
I agree with you. My husband has FTD and when I tell people that I get a blank look most of the time. People don't understand that there are other types of dementia not just Alzheimer's. I do wish people where more educated about this group of diseases where dementia is one of the symptoms.
I suggested to Joan awhile ago that she put some kind of note at the top of the home page saying "..and related dementias.." My husband says he has Alzheimer's, and we've used it with others, no problem. We also say "dementia" because the neuro has never flat said Alz. That somehow, for some people, seems less scary for them! Other than the people in the support group, and one very helpful friend at the zoo, I don't know many people who have first-hand dealt with Az.
Joan, I would love to see "AND RELATED DEMENTIAS" ADDED. I would definately feel more included. As for a support group for couples, no way....we each need to vent seperately.
There was a lady who used to sit behind us in church and she said her husband had "Dementia not Alzheimers." That was before DH was ever diagnosed but I knew then which way her husband was headed. I guess they think it's less of a stigma to have dementia rather than Az. Well duh!
Jean, it has nothing to do with stigma. In my husband's case he just might have Alzheimer's too, but that is not what he was diagnosed with. As for the lady who used to go to your church, it is very likely that was true for her husband as well. Alzheimer's is the largest group with dementia, but I bet if you added up the next three largest groups we just might be the same size or bigger.
And think about the Parkenson and FTD people. The dementia drugs don't work for those patients. There literally is nothing for them and no one is even working on stuff for them BECAUSE it is DEMENTIA, not Alzheimer's.
I can say that I never even heard of FTD until it was brought up by the neurologist after his MRI. To me FTD was a flower company. Now I know more about it than most doctors, even his neuropsychologist said to me that you are probably an expert on FTD. I have always known about alzheimer's but it seems that no one I know has ever heard of FTD and I have to educate everybody about it. It is very different from Alzheimer's Disease.
The only support group anywhere near me for FTD is at Northwestern Memorial Hospital in downtown Chicago. It meets in the evening once a month but I can't leave my husband for that long to go, so online groups are all I have.
I've been thinking about this the past couple of days. And yes, it reminded me of when I was a senior in high school. A friend's grandmother was very ill and I asked what was wrong. My friend whispered in my ear, "Cancer." I went home and asked my mother what cancer was and she got real upset and said, "Where did you hear that word!!!" This was in 1948. Hard to believe. Is the stigma going to go away soon? Probably not. Look at the general ignorance of alcoholism that hasn't changed all that much in recent years. People just don't want to learn about things that scare them.
That minister tried to guilt you into feeling like a rotten person. How awful. I have a friend who told me that all the things that upset me wouldn't bother me if I'd just pray. Needless to say, I won't be telling her much of anything anymore.
I also grew up in a world where "pregnant" and "cancer" were whispered. I had a hysterectomy in 1972 and they found that I had some cancer cells in the endometrial lining of my uterus. Of course, they removed the uterus with everything in it. When I came home, one woman came to my door with a casserole in a pyrex dish. She said, "Throw away the dish when you've finished. I don't want it back!" People were that afraid! So, here we are with "DementianotAlzheimer's" being one diagnosis, as if Alzheimer's would be ..what...worse??? Divvi is so on target. SCREAM! If people stop whispering Alzheimer's - and begin to face the stats from the World Alzheimer's Assn. - they will start wearing purple ribbons on their underwear, tuxedos and in the middle of their foreheads.
My husband, btw, refuses to say Alzheimer's. I use the word when appropriate, and say Memory Problems when they are appropriate. I CANNOT, however, say Hospice yet. In time. - perhaps ....or not.
I tell everyone that Alzheimer's is extremely contagious, and that the only way to become immune to to spend some time exchanging conversations with the "infected" person. It builds instant immunity.
Does anyone remember the old Arthur Godfrey show and the young girl singer, Lou Ann Sims? When she appeared on the show in a maternity dress the public was so outraged at the thought of letting a pregnant woman appear on tv that she was immediately fired.