I just finished reading the article in the Breaking News section of the website, and then searched the board to see if a discussion on this topic had already been started. Finding none, here goes. I agree wholeheartedly that "coming out" makes life a lot easier for the caregiver as well as the AD sufferer. We are relatively new to the dx, but once that dx was made and we were able to make sense of the weird behavior that my DH had been exhibiting, that was a weight lifted from our shoulders. But telling people the news makes for some interesting reactions. Our daughter immediately went into a fit of depression. Our son was more practical and immediately began fund raising. Both children are now very supportive of me and their father. Our friends, on the other hand, are showing quite different reactions. We have some long time (25 years) friends (neighbors here and neighbors once upon a time when we all lived in the city) who seem to be shunning us. Other of MY friends are extremely supportive, and offer hugs (got one today) and understanding. My DH's social life is extremely limited (his choice) but those people he does associate with are taking it all in stride. I am gradually (picking and choosing the timing) letting our little community know the dx (although in a small community word usually spreads very quickly) just so that they would know what to do if DH starts wandering, or says something inappropriate. This is a hard thing to do, but once it is out in the open, life does get a little easier.
And as the article points out, most people know someone else who has dementia.
Everything you have described is quite common. Everyone has different reactions, depending upon, I guess, their personalities and experiences with Alzheimer's Disease.
I have written blogs about the "socialization" issue, (type "socializationin to the search box under the message board topic on the left side of the home page) and it has been discussed here. I have brought one of those up to the top for you.
The main problem (as I see it) is that when you have done activities as "couples", and one spouse is no longer able to participate in those activities, the friendshiip wanes. Also, many people are uncomfortable around dementia and just don't know how to react to it
I do, however, think it is MUCH better to tell people up front what is going on, not only for the reasons you described, but it takes the stress off of both of you.
Thanks for bringing the "socialization" issue to the top for me, joang. It made for interesting reading!
I wonder if one of the reasons that "coming out" makes the care giver and the dementia sufferer feel a little less stressed is because the timing and circumstances of the "coming out" is something that we can exert some control over, when control of everything else is slipping away?
Jim "outs" himself all the time, to almost everyone we stop to chat with on the street when walking our dog. Because he is so young, most people laugh when he says he has Alzheimer's, thinking he is making a joke. But people in the neighborhood who know are very kind and patient with him. He was always a standoffish guy so in a way, he's getting more interaction now.
My DH was dx in January of 2010. He was early stage 4 at that time and he told everyone that he has Alzheimers "but I have no problems". Fast forward to today, where he is now in stage 6, is anxious, delusional, paranoid and constantly trying to escape. Now I'm the one who tells everyone that we come in contact with that he has Alzheimers. Although I never thought about it before, I believe the adage "it takes a village" pertains not only to raising up children, but also protecting the vulnerable among us. I want people to see what Alzheimers looks like close up and personal so that it's not so frightening or foreign to them. I think I also share this information because I then feel I'm not so alone in this nightmare. To a person, we have received compassion, kindness, patience, support, friendship and help from everyone; friends and family, as well as strangers. It is always heartwarming and a bright moment in an otherwise dark day.
BQD, Yes, some people you have known over the years will shun you. I have found this to be more common than not--- even among family. My doctor pointed out, and I do believe he's right, that most people are afraid of it! I find this perplexing, disappointing, and very hurtful that old time friends and family will throw us under the bus.
Even a woman I I thought was my best friend has shunned me.She treats me the same when we run into each other but she used to call me EVERY day and now I could count the times she has called this year on one hand.WE have been friends for a good 40 yrs. The lunchs and shopping trips are over too.
You folks have made some interesting comments inre this subject and how you have dealt with it. I, personally, hid this problem from our friends and neighbors as long as I could. Until some of them started commenting about it. My DW was the sweetest and prettiest, most lovable, lady on the block and I tried to hide her problems. Was I wrong? Probably. But, looking back (and that is all I can do now), I made a lot of mistakes. But, I did the best that I could and I know that you are too.
Dean, I think each of us is trying to do what we think is best for our LO. My DH, to my knowledge, has yet to tell anyone that he has AD - I'm the one that is "coming out" for him. And yes, I am surprised at some of the reactions, particularly from one friend (her mother has AD). I thought she would show a little more understanding. We have been trying for 36 years to have my DH's younger sister and her husband come to visit us (they live 6 hours drive away), and they actually came to visit last fall after hubby's dx was made. Much prompting on my part to make it happen, but miracles do still exist! Now, will they be back? We'll see....
Bonnie everyone's experience is different, just like AD. My hb doesn' acknowledge that anything is wrong with him, so I am he one telling people because many of his behaviors cannot be ignored in public. In our situation we have lost all the close friends we had a a couple and no one in his family stays in touch; I think they are afraid since dh and his oldest brother were boh dxd with dementia. Only my sister visits and offers any help. The blessing however has been that several of our neighbors are now there for us if we need them. We were always cordial, not really friendly and now they have been very understanding and compassionate.
Hi Bonnie, when I joined this site a couple of years ago, that was one of my main stresses, the lack of support and caring and constant platitudes. MarilynMD was so right . I just recently had to let go of a lifelong friendship due to being treated so horribly. YET, I have renewed an old girlfriend from years ago. She spent 2 weeks here in October and sacrificed that whole time to helping us, cooking every meal, cleaning, and even watching mu guy if I had to go our for awhile. Yes. Out with the old, in with the new.
When my dh was still alive and either I told someone he had AD or they mentioned it to me because someone else had told them he had AD my response to them was..."Thank God it isn't contagious and there is little to no pain attached to this condition." That usually threw them off balance because most of them wanted to ignore the fact or make an unwanted comment.
When we started this 6 years ago we attended a program at the ALZ assoc. There were 5-6 other couples (1-2 were parent AD) but there was one couple in particular that left an impression. They were younger (late 50s) and she had the disease. She was entering the moderate stages (very confused but clear of speech) The official position of the AA is that they do not take a position on disclosure but the Social Workers lead a discussion on it.
This couple had not told anyone(!) Everyone kept asking "Whats wrong with Sally?" However the wife had insisted that nobody should (ever) be told. INCLUDING HER BROTHER!!
Her brother would visit and ask "Whats wrong with my sister??" and the husband would have to say "Nothing, why do you ask?" The husband was beside himself. He was carrying such a burden and it showed.
While the AA workers refused to take a stance on this stressful situation that was discussed weekly, all of us kept telling him to lessen his burden and share it. Especially with the brother. Finally after 6 weeks they attended group and told us that he finally had a family meeting and told the brother the situation. He was obviously and visibly relieved.
I think it was pure denial on her part. (who does want this diagnosis?) The final decision was made by the husband without input from the wife (Making a marital decision without a spouse's input is well understood around here) but you just could not deny it any longer.
I think denial is probably why most people dont want to tell. But I see it like trying to deny a pregnancy, everyone is gonna find out eventually.
It took me about a month to say it openly to coworkers and strangers (why hide it?) and now as mentioned above I give mini-lectures about AD in the market and other places explaining why she is acting up. YES, people should see it and get used to it, cause it aint gonna go away.
Friends? Sadly we never had many before the Dx (2 working professionals devoted to their careers) and now the few we did have are all long gone. One I still work with one and he has explained that the mental illness type of bizarre behavior just sets him on edge and he cant tolerate it even for a minute. But we still talk at work . . . . which is better than nothing.
While I believe in coming out of the closet also believe it is no one else's business unless you want it to be. So don't let my comments pressure you to come out if it would make you uncomfortable.
L doesn't want anyone to know. She thinks some friends don't know she hasn't been working for 4 years. She has slowly been telling family and friends. Some she tells she is on disability, others that she is retired. She has told some people about her TBI but not her FTD. She has told some close friends about the FTD.
Meanwhile almost everyone knows the truth. This has been very useful. I should have told her that she should come out for our son's sake, that we shouldn't have a family secret. But his teachers know, some of his friends know, their parents know, my office knows. This gives me much more flexibility at work and helps explain why I am not social with them and leave work at a set time. But work can be tricky, if Sony don't feel safe revealing your situation at work, don't. Many places discriminate against caregivers. If you are doing your job the bosses don't need to know.
So now that I am looking at ALFs it is important that people know. One of her sisters will go looking with me. I will need to take time off from work. Her family needs to know what to expect and her sisters insist on a family meeting so we can discuss how we will pay for the ALF.
However, I don't want to broadcast to the world right now. There are many people who will take advantage of someone with dementia. And I want to avoid the nuts who tell me there is a cure.
Judith - I like your response of "at least its not contagious" - its the kind of thing I would say to people who are really not interested in helping, just curious or have a "holier than thou" attitude.
In my opinion, I think its better to "come out" than to try and hide it. This does not mean I am going to put a big sign at the end of our driveway that says "my husband has Alzheimer's" :-), but I do think that relatives, friends, and people we come into contact with on a regular basis should know, and the reaction we get from those individuals will, as Marilyn pointed out, reveal their true characters, and help me figure out who we can count on for help and support in the future.
And to all who commented on the loss of friendship - I've lost some of my old friends, and I don't have as much time as I used to for my current friends (with whom I do volunteer work). And the deepest cut of all is that I can't share how I feel with my best friend, because my best friend was(is?) my DH. And he just can't be there for me anymore. But I am sure there are many on this board who feel the same way or we wouldn't all be expressing our feelings here.
And thanks for that, I know I am going to need it as my hubby and I move along on this journey!
Coming out? I forgot to add . . . and go ahead and call me crazy. . . .
Though Zazzle I bought two t-shirts that say "I am an Alzheimer's Spouse" and have Joan's web site on the back. (designed by Joan at my request) I also bought 10 buttons with the same message and I have given them to AD spouses at the senior center my wife used to attend.
I also bought 3 different ties that have the phrases: "I wear purple for my wife - Alzheimer s Disease", "I support my wife fighting Alzheimer's disease" and "I wear purple for my wife's lost memories"
Surprisingly few people read or notice the text. They are more attracted to the wife's behaviors (of course) But if it lets me start a conversation and if I get to explain the situation then I certainly will do so.
Sign on the driveway? While we dont talk much to the neighbors anyway, I have readily told them she has AD and it was certainly a help one day. While I was in the bathroom my wife forgot where I was and went out side crying my name while looking for me. (she doesn't wander but she was in a panic trying to find me) I couldn't exactly leave as quickly as I would have liked, and by the time I finished up and got outside, a neighbor had seen her and guided her back to our porch. So, there ARE some practical reason for not keeping secrets.
Though this would be insulting to people dealing with Lewy Body and other rarer dementias. When I say "The Other Dementia" I am playing off the pork industries "The Other White Meat" campaign.
One of our next door neighbors know. A few times our son went to stay at their house until I came home when L's behavior was disturbing (and the house was full of firemen and police in reaction to his 911 call). That was a few years ago. And they know how to respond if she came over to complain about the flag they were flying or something else. L hasn't done that yet but talks about doing it.
Coming out is also about 'raising awareness'. All the other diseases do this (especially the cancers!) and it does reduce or eliminate the stigma and it ALSO raises funds (and the need) for research.
The squeaky wheel is the one that gets the cure . . . .
paul, I like iit! Maybe "FTD, the dementia you don't know about". Or "Got dementia? If you're in your 50's or younger it might be FTD". I don't know just some possibilities.
paul, I try to get on the forums thru the www.aftd.org site and I am never successful even tho I am registered. Any advice on how to access the forums? No luck lately.
I thought of another "Ask me about FTD. You'll want to know". Or "What you don't know about FTD will kill you". Or "FTD, not just a florist". Thanks for stimulating my brain. I used to do this for a living when I was in advertising (many, many years ago)
I really like the "FTD, not just a florist" as well!
When my DH got his dx of AD, our son, who is taking PR as an adult student at one of our local colleges, immediately started fund raising for the local AD society. His campaign was called "Keep me in Mind" He is still spending time promoting AD awareness.
Maybe I should put up a sign at the end of the driveway - similar to a "children at play" sign just to slow the traffic down in case my husband is outside and not paying attention to where he is.
The first people I "came out" to, after the kids, was our next door neighbors. They have been truly wonderful - he plows the snow from our driveway, and helps with other " man type stuff " (no sexism intended) like sharpening the lawnmower blade, helping me start the grass trimmer, etc. and has offered me the use of his truck, since I no longer have one. My DH used to resent this, as he felt he should be doing these things, but he hasn't complained about it lately.
We have been going to breakfast with a group of friends for several years on Sunday morning. The first Sunday after his DX, he announced at breakfast that he had ALZ. Everyone thought he was kidding. Now after 10 years of this, they are all believers.