I just got back home, after chaperoning my daughters' all night high school graduation party. I feel very thankful to have been able to attend, but discovered something {else} strange about living with an ALZ. spouse. I hardly ever get to socialize anymore and was really looking forward to visiting with the other parents. I am a notoriously social person and have no trouble getting along with anyone, but last night it was completely uncomfortable for me. I just don't feel like I know how to interact with people anymore! One part of me wants to reach out, but I also know that most conversations lead to questions that can only be answered by involving the ALZ. issue, ie "why I don't have a job", what does your husband do, etc. It is just too exhausting to explain my situation, and if I do tell people, then I just get pity. I feel like this huge freak of nature.
Check out the last Blog on the bottom of the front page of the website- Sinking into the World of AD, and look at the Message Board topic of the same name. There is also an older blog - Straddling Both Worlds - http://www.thealzheimerspouse.com/straddle2worlds.htm They all talk about this.
Once we get immersed into the AD world, it is so hard to relate to those outside of it. Honestly, that is one of the reasons for the two "dog blogs" of Friday and the weekend - Both my husband and I have to get out of this AD quicksand for awhile, and we're going to do it by getting back into the "dog world".
But I think you can talk to people, as individuals, and get beyond the banal cocktail chitchat that makes us think "everyone" (except us) is doing A, B, and C while we're doing Q. A lot of the getting bogged down in pity reactions can be dispersed quickly if one maintains a calm accepting attitude (not always easy, especially early on,) but the thing is--everyone (almost) is dealing with something, and when you relate to people honestly you usually find you're not the only one in an imperfect world.
On the other hand. Sometimes we just feel freakish and can't help it. It goes with the territory.
Absolutely many people are dealing w/something. As bad as AD is, it is not the worst thing in the world, but I always say it ranks up in the top 2 or 3 and that's bad enough. It just seems that other situations are not so 'hidden' from others. We can all related to cancer, accidents, death of a LO from something else, but AD and maybe a few other dementias seem to be in a class of their own. How can being forgetful hurt, can't you just remind someone? It's not like this awful thing--it's not like that awful thing--it's just forgetting--big deal! But 'we' know that it is a big deal and impossible to explain. So, yes, I do think we are in our own bubble-world, I know that I was and to some extent still am. Had a 60th class reunion last week, at least 3 others there had AD (I may have posted this already, my memory never was good!) and so many others came to ask me about it, and there was a SIL--can I have my brother call you--& other family members & friends and I am, in a way, a resident 'expert.' I really can't help except to always say, yes, call, I'll listen & understand that others they speak to will say 'I don't see any problem.' I've tried so often to speak of other things, but over and over again, AD intrudes into the conversation. I can't say I've ever felt freakish and I'm not a very sociable person anyway, but I sure have felt like I was in a bubble.
How often do you NOT tell people that you meet that your spouse has Alzheimer's? My mother (my dad has Lewy Bodies Dementia) enjoys going places and feeling "normal" by not telling anyone what she's dealing with. I, on the other hand, feel phony by pretending to be like everyone else. Sometimes I don't like the pity that people feel, but I'm always happy to answer questions and be honest about how hard this life is. I feel that the more people who realize how much this disease affects every part of my life, the more attention it will get and maybe the more research money. Maybe we can help someone else not have to live through this!
Something happened to me today that illustrates keeping AD to yourself when talking to people. I have a friendly business relationship with a woman I have known for TWO YEARS. Never once, in all that time did she ever mention a husband. I assumed she was divorced (did mention kids living out of state). Today, when I asked her if she could do some side work for me, she said she couldn't because when she finished her regular job, she had to go home to her husband with AD. I was shocked out of my socks. And honestly, I don't think she ever would have told me, but she mentioned that she saw my business card on the table.
She has somehow managed to keep the AD side of her life completely silent and separate from her "public persona".
I agree with FLgirl. I would feel a little phony; wouldn't feel as if I was being "me" if I didn't mention the AD part of my life.
I wish any lobbying that is done would be to get the word out on just what this disease does to the victim. Today at our bank I was apalled when the girl who was helping me said that her neighbor had Alzheimer also, as we continued to talk she always thought that with Alzheimer the mind just wandered back and forth, she was shocked when I told her it takes not only the mind but the physical body. I explained to her that it is a terminal neurological condition and that if a person goes through all stages of the disease process they can end up bed bound and in a fetal condition. She could not believe it. I guess now when she visits the neighbor she will be more aware. I just wish everyone was.
Countrygirl: You are NOT alone in feeling this way; in fact, you have described exactly how I feel everytime I attend any school-related function of my daughter, who just finished her junior year of high school. I don't know how long your husband has been diagnosed, but I have discovered that now that my husband has been officially diagnosed for 2-1/2 years, that enough of my friends and my daughter's friends know what is going on, so usually I can go alone to functions and enjoy myself with few questions. I guess the parents who don't know what is going on aren't the ones I socialize with anyway. My husband still joins me at some functions, but my daughter and I sort of choose the ones we think he will enjoy most and where there will be enough people who are close friends of his that they will spend time with him. With all that said, there are still times I go to a function and am not emotionally prepared enough to stay the entire time......I cannot tell you how many times I left football games (and I love football!) at half time and cried the entire way home. On the other hand, I started to cry at one of my daughter's varsity softball games and thought I was going to have to leave, but several of the other moms (one of whom has an ex-husband with severe dementia due to a brain hemorage) gathered around me, distracted me, and I recovered. As bettyhere said, most everyone is dealing with something, and is more than willing to support you. Anyway, please know that you are NOT alone! We are all figuring out how to live in two worlds......
I was with a previous MIL (how did a nice girl like me get so many?) in a hospital where the nurse said "C" - not cancer! I could hardly believe it! No, I believe in just stating what is - AD, and not pretending this isn't my life these days. I think most people (and definitely those I want as friends) understand and also do sympathize, just as I do with their children on drugs, broken marriages, wayward grandchildren and on and on. Life is too short to pretend. When my previous spouse was diagnosed with an uncurable cancer (not even 1%) I read "The Tibetan Book of Living and Dying". I really learned a lot from that book and would recommend it (through I'd have to read it again to remember exactly what it says!)
Once again I am taken by how people handle things differently but also the same. Not only do things depend on your own attitudes--to tell or not to tell--but if you are someone like Joan's business associate. She's out and about while others are homebound. We have so many different life styles, financial and social situations. It also depends on what stage our LO is in. Early stages, not much of a problem, but things change as the disease progresses and we change along with it. Obviously we each chose how to walk our own path and it does wonders to be able to discuss things and realize we are not alone. All we can do is the best we can do.
I decided to "go public" less than 6 months ago. I decided that in an emergency I might need help and the way to get it was to be honest with the people around me. I went public with extended family and my husband's long distance friends as well.
We live in new construction. I needed something from the "coordinator" yesterday and she wanted to phone me when she got it. I told her about my husband because it has been more than a year since he could take a message. And I wasn't going right home. He won't answer the phone if I am there; but will answer it if I am not. That is both a good thing and a bad thing. It is good becasue if I call I can talk to him. It is bad because if anyone else calls, that call goes into space.
Her reaction was that she would never have known. She had talked to him within the last month. Even with his verbal problems he had looked perfectly normal to someone from the outside who was only interacting with him for a few minutes.
By the way, this was not her in denial. It was simply surprise. She wasn't telling me I didn't know what I was talking about. She was just saying that she would not have known unless I told her.
I can certainly relate to not wanting to tell people. I started a new job about a month ago after working in the same place for almost 10 years. In a way, it was comforting to know that many of my coworkers at the old job knew about DH and the AD. But I haven't wanted to share the information with anyone at my new job (I told one person he was "disabled" and let it go at that.) I just don't want to deal with the pitying looks and "poor Kelly" mentality. I know people care but I hate feeling pitied. I tell only the parents of my kids' friends who need to know (like in Cub Scouts, I had to tell people after DH had to be brought home after a camping trip because he was disoriented.) It may be totally unfounded, but I worry that they won't let their kids play at our house (I usually try to have play dates at the other kid's house anyways, it's just easier.) People have different understandings of AD and what it entails. I just remember that my son's Kindergarten teacher a couple of years ago told me that she didn't want her MIL to watch her baby while she was taking care of a neighbor with AD. That was shortly before DH's diagnosis. I did end up confiding the information in her later and she was very sympathetic. Anyways, that sort of stuck with me.
Kelly, I understand and, of course, I can't possibly understand because I'm not dealing with little kids myself. In your situation I wouldn't tell my co-workers at this point in the game either. New job and all of that. Your boss will probably have to know before anyone else.
As for the teacher, it is possible that the person with AD was either violent, or spoke inappropriately. What I mean is that she might have had a good reason not to want her child interacting with that particular AD patient and not have problems with AD in general.
Remember that Vascular Dementia patients can be very different from Alzheimer's patients depending on where the brain damage is. I'm luckly in that I've only had one violent episode to deal with. Outside of that, my husband is generally not a problem in that way. Other people aren't as lucky.
My DH also has vascular dementia/and or combo AD. He is mild mannered and docile but was aggressive/verbal in the first stages. I had to let everyone know his diagnosis as on more than one occasion he got phone calls looking for him as an atty to take a new cases per recommendation from other clients! and before i knew it someone had sent them all their pertenant info for review. what a way to open up a legal malpractice lawsuit on himself! he just didnt get that he was unable to practice his profession anymore. i had to return his legal license and that was a very sad day. sometimes opening up is best but i can understand not wanting to expose conditions to outsiders as well. i think the stipulation of Ad also can mean that persons feel the AD person can become violent at any time so that may be why they dont want contact with them..Divvi
I look at a person's questions as an opportunity to educate someone else about AD and what it can do to a person. I have shared many things that I have run into with AD, nursing homes, doctors, etc. with friends and co-workers. They have all learned from me and it has opened up the way for many stories that I have also learned from. It took me a while to understand that while I don't go to a formal support group, that my friends and co-workers were filling that gap.
I do think that a lot of it comes from our own attitudes when we describe what is going on and how we talk about it. I have a friend who is a quadrapolegic (sp?) and he has a wonderful attitude about everything. He comes to work every day and is just happy that he can get here and be productive. I have watched other people who are much less diabled who have a "oh poor me" attitude and they don't do have as well my friend does.
Many people will say oh poor you to me, but I can come back with some of the beautiful things that I have seen or that my husband has said to me even now and it doesn't always seem so bad.