Boy did that hit home. So many of us retire to kinder climes where nobody knew us as we were. We left our friends and support systems behind us. We even left our families behind. Our new friends never knew the wonderful lives we had, our successes and loving relationships. Sometimes I think it is better that they don't see what happened. I am happy that my parents didn't live to see what happened to the husband of their only child.
I understand completely about friends. I have always lived within 30 miles of my birthplace and all in a rural area. Until a few years ago I knew or knew of just about anybody within 30 mile area. Almost anyone I talk to has a friend or acquaintance in common with me.
I don't make friends easily and most current friends are really acquaintances. I feel more comfortable in the presence of those I grew up with - culture etc. I would enjoy the warm climate in the winter but not enough to pull up stakes and move there and have to start all over again. Also, 2 of my 3 children live within a mile of me and help us dailey. If they lived somewhere else, then I would think about considering moving close to them.
Fortunately, or unfortuntely - not sure which, we had moved here 23 years ago - before AD. So, all our friends did know us "before". After dx, they slowly began to drift away. Not as many invitations, they don't come to our house as often. About 20 of us always had great parties at our house. I contined these - not as often - but some of them always had something else to do. We still have some very close friends here who do come over when invited, but very few. No other support system here - family lives all across the country. They support me and do what they can but it isn't the same as having them close by. So....I depend on this site for most of my support. Thank God for Joan and for all of you. I love you all.
joan, i am sorry you went through some bad times and glad his meds are helping, when we moved to az. no one knew us except daughters friends and there family,they were very understand of him, when we came back home friends would ask how is he but never would come to visit, he knew everyone in town and was so socialable talked to everyone, would see someone on the street or in town he would say hi no one wanted to talk, like they didn`t know how to handle it, dah talk to him like you always did, some would talk loud, isn`t deaf.i wouldn`t know what to do without my kids to help, we are the only ones to visit dh in nh, o he has one friend and wife to visit, our best friends, they never left us.do you think your old friends would have forgotten about you and dh if you had never left. what a sad thing to have to go through , lose friends because of this illness even having him in a nh my ex friends don`t call or come around and like Imohr i don`t make friends easily and yes than god for all of you
It is sad that you're not near the "old friends" who would know what you and Sid have lost and could mourn with you. Although it's not the same, I'm glad you have new friends here and in your local support group who do understand to some extent without having known you before. I hope you know how much all of us care about you and admire you for all you've accomplished since Sid's diagnosis.
In the early stages, we were able to maintain an active social life and friends were comfortable with that. As he progressed, the invitations were fewer and his ability to go out and enjoy people was a lot less. I could see that many of our friends were uncomfortable around him and seeing how he was.
He is in a facility now and I am his main visitor with an occassional other visit (1 every 2-3 months) from friends and one visit every 6 months to a year from his and my family. As he can no longer really interact with them, I can totally understand why they don't want to visit. I have been told by some that they don't want to remember him the way he is now. Even though I do understand, there is still a part of me that resents and mourns the loss.
Joan, it is a mixed blessing you have with the new/old friends. Old friends who knew the two of you way back "when" will see the changes but it is shocking. New friends without the history are in a different category.
It has surprised me which friends have stuck and which have left in many ways. Some I thought would stick have disappeared and others have stuck so well and been very supportive.
An idealistic person told me that "true friends will always be there". I have not found that to be true. Friends that can handle the situation will be there, good friends who can't handle it will back away.
There are a lot of aspects to this diease that really suck and some of those don't have anything to do with the disease itself.
Oh Joan, I'm sitting here crying, I read your post out loud to my Mom and cried while I read it. We too left Massachusetts. Where did you live? I grew up in Beverly, but raised my kids in Bradford/Haverhill. Here in Maine, because of our circumstances with FTD we have few friends. It is a lonely way to live.
We never stayed in one place longer than 5 years. I have found those who were friends while we lived there weren't once we moved. Yes, we would email for a while but eventually they stopped. I have some RV friends that we would meet as we traveled - ours paths would cross or we would go out of our way to see them. I hadn't heard from them since last November. We would talk a couple times a month. I finally called her last month to see when they were heading up to Washington for the summer and found they weren't coming due to having surgery. Normally it would be hard to get her off the phone but this time I felt like she couldn't wait. We have had that from others we kept in touch with - after telling of hb's diagnosis, we do not even get forwards from them. Sad world we live in.
Although I can't relate to the 'old friends, new friends' situation, I can totally relate to friends in general going away. It seems like once the AD dx is made, they get more and more aloof. We've had some friends for over 30 years, and we never hear from them anymore. Most of our friends have stopped calling and inviting us out. I call some of them once in awhile, but I get the same feeling as Charlotte, they can't wait to get off the phone. Not only a sad world we live in, but a lonely one as well. Even my own sister (my only living sibling) NEVER asks how my DH is doing when we talk, and we talk on the phone several times a weeks. It's like she thinks talking about it will make it contagious or something. (although, sometimes I wish it was so people would understand what we go through 24/7) :( ~Di
This did hit home. We moved to the mountains after Ralph had to retire. Our loving friends we meet accepted him as he was with AD, even tho they did not know him pre AD. Until Resperdal, things were much worse (especially the driving issue, Joan). I bought him a three wheel bike that he enjoyed, but did not help with not being able to drive. Now I just wish he could talk to me.
I can relate to the losses and hurts that are expressed here. I have been very surprised at the "friends" that have made it very clear they want nothing to do with us. Also our grown children are several hundred miles away - are just too busy with their lives. Before, we all spent Holidays, birthdays together. I don't stew over it as that seems to happen to folks as they age even when there is no disease. But, never thought we would be in that situation. If it weren't for this board, I would be a lot more crazy than I am :-). Thanks everyone!
I agree with therrja, it's a mixed bag. Fortunately I do not (yet) have to deal with the rage and hostility that so many of you are facing (I'm so sorry, Joan).
I'm considering taking some day trips and overnight excursions this summer and would like to visit old friends, college roommates, people DW and I worked with professionally for 35 years. I'd like to see them and I think they would like to see us, but DW does not remember them at all. I'm not up to explaining our situation over and over and I'm thinking that it might be better for people to remember the competent person that DW used to be rather than the AD shell she has become.
I try to think about what DW would want if she were healthy, and what I would want if roles were reversed. I wonder if the Reagan family didn't have the right idea. To me DW's dignity is just as important as that of a former president.
I admire Nancy Reagan so much. When she was asked about her husband's health, she always had a short, sweet reponse. Never details. No matter how much the reporter would pry for the nitty gritty details of Reagan's AD...."does he know you".."is he up and about", etc. She'd just smile a small tight smile and it was obvious that specific details were off subject. I try to remember how she was when people call me, they don't always want to hear all of the little details of our life, his behavior, my lonliness, etc. I wonder how many of us almost run people away with ourcontinuing tales of woe. That's why this site is so great. Here we can lit it all spill out...
I make it a point to thank people who ask about my husband. All I say is that he is safe and looks healthy. Most do not understand that he will not get better.
I believe it was "Bettyhere"..who coined the phrase, that I have begun to use. When asked if he knows us, I reply "He knows he is loved." That's so important for them.
I, too, think that speaking frankly about my life would turn people off. There are a few empathetic friends who I can let my hair down with, but I don't go into a lot of detail with others. People's interest/tolerance seems to vary so much! Most of our friends are in their early/mid 60's and have not experienced dementia care--yet. A few are just starting down that road with parents, which is hard, but not the same. The best support comes from others in the same situation, via this website and the Alz Assn.
In our case, people were very kind and always expressed concern over the situation that we found ourselves in. Friends did drift away...but, I also did nothing to encourage them to become involved. Their lives were unchanged....they were still working, still planning vacations, retirement, their futures....I was trying to keep my husband under control, safe, secure and also working very hard to maintain my sanity. The friends and I were living on different "planets". So, I never blamed them...I certainly could understand. Through it all our two children were wonderful...I am blessed in that regard.
Since we live in a retirement center I don't have a problem with people knowing DH has joined the many who are declining. It's so common that everyone understands and I don't feel at all isolated, because people here speak freely about any and all health problems. We have a lovely apartment in independent living, but DH still doesn't know many people here, even after 5 years. That's because he doesn't really want to socialize. And this is a man who was loved by everyone back in his town up north. Lately I've been making a point of getting away by myself for a couple of hours and explained to him that it's good for both of us to do that. He can still drive to places whan he's familiar with the route, but would be unable to find a new address, as map reading ability just isn't there. We've travelled a great deal in recent years, but on our last trip there were too many incidents of inappropriate behavior and I think this next cruise coming up soon will probably be our last. I've told him that, without giving the reasons, but he seems to know. I must add that he honestly doesn't think he has any problems with memory or cognition. The basic screening test didn't turn out well, but he said that was because the woman giving the test wasn't doing it right! Naturally, further testing was refused. His daughter and I are wondering just when we should confront the situation so that maybe appropriate mediction could be started.
Yes, AD does change your life, just like the disease the changes evolve slowly. My DW was a very gracious hostess, a wonderful, beautiful lady who was full of life, enjoyed life to it's fullest, everyone loved to be around her, she was always very outgoing, sharing, gracious and optimistic. As VaD/AD entered the picture we have seen our social life melt away, she always planned a party or dinner for every holiday and invited all of the family and friends. Everybody loved her parties and holiday gatherings.
Our social life now is centered around one of the organizations we belong to, we became a part of it after VaD/AD entered our lives, many of the people who belong are around our age and some are experiencing similar issues with parents or other relatives. There is another gentleman and his wife who attend, I am sure he has AD but I am not sure his wife realizes it at this point. These people have been very gracious and have accepted us as true friends, it is like we have known many of them all of our lives. DW wife has not been able to attend lately but I have been going alone to keep up my social contacts and maintain some sort of a social life.
It is a terrible experience to see the love of your life go through these devastating changes, but I am very thankful for her daughter and her two grown granddaughters who live near us, they have provided so much love and support and helped ease our journey through VaD/AD. Her sons live in other parts of the country, we don't see them as often as we would like, but they do check in with us frequently. But I am grateful to her for the best thirty years of my life and will continue to do what I can do to help ease her way through this terrible jouney.
I sent out CHristmas cards this past year, for the first time in a few years even to those who had not sent us any. Heard from an old friend, from college, friend of both my husband and me. Bachelor, as far as I know never had a major attachments except to his dog. We agreed to email about once a month and try to escape talking about our mundane lives, take in broader themes. (he was always an academic)
I find this almost impossible to do. My life is so focussed on my husband and observing his behaviors, I find it's very difficult to go beyond that or my sore knee, or, if I'm being adventurous, the netflix we've watched or the zoo babies of the season. I am aware that talking about ourselves, almost obsessively, is bound to turn people off. And yet I'll do it if I'm not very careful!!
I agree, danielp. I see some of our friends and family going and doing things, planning vacations and trips, having fun, etc., it really makes me sad. We truly are living on different planets.
Just to keep things on topic, I moved the comments and answers related to PrisR's husband's FTD and doctor problems to one of the FTD discussion. It is close to the top now, so you should not have any trouble finding it.
My conversations with friends was not really helping me much so I am trying somethng different. Last week I started a blog on the life of my wife and me and am letting the AD problems hang out. I praise you caregivers a lot but not sure my friends really want to really hear about Carol. At support groupl, some suggested that I have a little list of things to answer when I am asked -"call me if I can help you'll" I am thinking of adding a short list of things that would help Carol and me. It is an experiment in progress. I will keep telling you about it. do have a post from yesterday----Carol's blog--Are careguvers blessed???? I have had some nice comments from kids, friends and other caregivers. Joan actually made the suggestion several months ago and another thread talked about similer blogs.
Hope it turns into somethbin to help Carol and me but also to help my friends feel comfortable arund us. Even at church they do not talk much because they don't feel comfortable with Carol's rambling stories. But Carol is happy trying.
Will try to lkeep you guys up to date on my experiment. bill