During a "discussion" with a friend, she told me, in so many words, that I talk too much about my husband's illness. It was a first for me to be told that--when close friends/family ask what's new or how he's doing, I do tell them what's going on. I don't complain, I try to make it matter-of-fact. The friend in question has many medical issues of her own, which she speaks of at length, but for some reason she feels that because I talk about the AD, I don't give her maladies enough consideration. I really didn't think it was a contest--who has the most to deal with--but clearly she has no real understanding of how dramatically dementia changes the lives of the person with it and their family. Ironically, both her MIL and FIL are in the beginning stages; it will be interesting to see if her attitude changes as they progress.
I think she is wanting pity for her illness and is not going to get any as long as you are talking about your DH. I always wondered why old people do nothing but talk about their illness or doctors visit. I guess because nothing eles is going on in their lives. I think until you are touched by AD it is just another illness and does not hit home unless you have to deal with someone. It may also be that people do not want to talk about something there is no cure for.
I wonder if your friend is uncomfortable because she realizes she will need to deal with many of the same issues with her MIL and FIL you are going through currently with your dh. Could it be when you explain, it scares her for her future?
I think you both make good points. The in-laws are already living in a continuing care retirement community, so in terms of the practical issues, everything should be a (relatively) smooth transition from the independent living area, to assisted living, to nursing home all on the same campus. So she will never have to be their hands-on caregiver. Of course, the emotional issues are always hard to deal with, regardless.
Marilyn sounds like her troubles mean more to her than yours. At least now you know where you stand with her. When people ask about my husband (and few do) I thank them for asking and give a brief answer as they really don't want to know.
Well, the funny thing is that some of the best ideas I've used as solutions for problems have come from discussions with friends and family. It's the old cliche about not seeing the forest for the trees--sometimes someone outside of the situation can see something I hadn't thought of. So if I didn't discuss how he's doing, I wouldn't get some valuable input. However, as time goes by and I can do less and less to help him, your option would make sense.
Well your friend sounds like she could be having a particularly bad day. I've noticed with some family of mine that if they have medical (or familial) issues that are preying on their minds, that they don't even tell me, knowing what I am dealing with. When they do its usually after the fact that I find out because they (I think) feel I'm all-consumed with AD. In retrospect I know I've distanced people because of the huige importance I let AD have in my life (like I have a choice) to the exclusion of other important stuff. Your friend might need a sympathetic friend who gets into her situation and tries top offer stuff that'll help HER. We all need ME time now and then and she must have needed YOU. Feel lucky and blessed a friend values your opinion ( because I suspect she does and that she wants you to herself-even if for a minute ) and keep your outside friends high on your priority list. If you don't then soon they'll gravitate away and you will be left alone with DH anD no outside relationships. Been there , done that, got the T shirt. We ALL need some body to lean on. ......from the voice of experience.
I have never been told I talk too much about AD. However, I have found myself talking too much or giving too much information and I try to stop it. Most people ask about him to be polite - they don't need a blow-by-blow description.
Vickie, I have that feeling sometimes too, I need to stop talking and ask people more about themselves. But I have the impression that people really do want to know. If I were to put them off, with Oh, we're fine, They'll never learn more about AD. A good way to judge (I hope): if they keep asking questions as if they really want to know, I keep talking. On Wednesday morning I swim with a couple good friends and they always encourage me to talk about dh. If I give a short answer and change the subject, they'll come back to it. These are good friends, knowing that I need to talk! And if they're only pretending to want to hear about it, then they're very good actors.
I'm actually afraid that I do talk about it too much. Sorry, that's what's on my mind... constantly. If I'm out, I need to get back. that's my life. If you ask how DH is, I'll tell you. sometimes I'll say 'it's a challange' and if they ask for more info, I give it. depends on who's asking.
When you life is consumed by the disease and there is nothing much else going on, what else are you going to have to talk about? It is like a mother that spends her days with preschoolers - she forgets how to talk adult!
I have a daughter-in-law where she wants it to always be about her. She has a real hard time when my siblings get together and we talk 'old memories'. She wants to be the center of attention and she is trying to bring the kids up that way. She gets upset when we ignore her or them.
I have always been one to listen not speak (safer when I was growing up), so I say little and just listen. But, I have been trying to change some but am always afraid I will 'expose' myself and get burned.
I have missed whole sections of friend's lives due to the requirements of this disease. Sometimes even when they tell me about what is going on in their lives, I listen but am so focused on my DH that I forget what they said. Lately, I have been making more of an effort to reconnect with people outside of the AD world. I've played games with myself to see how long I can be part of a conversation without bringing up AD. This is part of how AD not only consumes our loved ones but can also consume us.
Charlotte - my mother was always afraid of asking something of a person because they might tell her "no". A person might say no, but if you never ask, the answer is always no. The question is if you expose yourself and don't get burned is the risk worth it to you. If the answer is yes - go for it. I have run into many people along this journey that were very happy to tell me their opinion on what I should be doing for my DH - problem was that they weren't listening to what he wanted and nor were they taking care of him. I decided to be polite and listen (there are often good kernals in there) but think about what was said and determine if it was appropriate for my husband myself. I've taken a lot of flak from various family members by following this, but I think I am doing what he would want based on things that he has said to me over the years.
Oops, you got that right - how many times do we and others put our feet in our mouths only to close them and then put in the other foot!
Some days no matter what we say, it just doesn't come out right. That goes for the other side of the conversation too - imagine the "bride wars" when both people are chewing on their feet!
I have not had anyone tell me that I talk too much about my husband's condition but I KNOW that I do. Most of my co-workers have quit asking very often but when they do, I am now trying to keep it short. I generally say that he is "holding his own" and let it go at that. My family (and his) are very supportive of me and let me vent to my heart's content, but what I think has helped me the most is that now that Charlie is in a facility, I have the staff to talk to about it and that keeps me from telling everyone and anyone all about it.
I think that at times I talk too much about dementia because I NEED to talk, and to talk about dementia. I'll talk about it too much especially to my daughter when they visit.
ehamilton, you are so right. I probably wouldn't talk about it too much if there was someone I was supposed to talk about it to.
I have learned not to talk about it around my younger brother. Today I was talking about wanting to go to the big RV get together at Quartzite, AZ but due to my commitment to work the tax season, I can't. That I am torn between working and going to something we both have wanted to go to just once. That I don't know if hb would be able to go the following year (in January). He flat out told me I need to quit worrying about where he is in this disease, stop looking for signs he is loosing the battle, stop planning the future (as best I can regarding what to do) and be happy. This from a guy who has been mourning the loss of his 'boyfriend' for 4 years who died from AIDS after battling it for years and is still depressed and always talks of dying. Really I can't talk about it around my oldest sister either cause she keeps telling me she knows what I am going through. Just because she dealt with our mom who had dementia (I label them senile dementia because she could still talk, just lived in her childhood) and dealt with her husband dying. Both were in their 80s when died). Anyway, I regret so much coming back. I have to decide what to do.
I try not to talk about it too much with certain friends as they don't get it at all.....but..one very old and close friend who was very uncomfortable discussing it just had her oldest daughter DX with EOAD at 52...she listens now..and asks questions.
With the exception of the wonderful folks on this site, I don't think anyone else really wants to hear what I have to say about it, including family. That's why I come here. I can feel accepted and not alone.
Why shouldn't we talk about dementia. People talk about their kids, jobs, vacations, little aches & pains. So why shouldn't we try to inform as many people as possible as to what being a caregiver of someone with dementia is really like. I am sure people get tired of hearing me talk...but that's too d%*m bad. Hopefully, it will never happen to a family member of theirs, however, if they listen patiently, they may learn a valuable lesson, "to thank god their spouses are healthy"
I am enjoying this thread. It verges slightly on the topic of friends and relatives saying "You would never know he had Alzheimer's. He seem so good." It is a discussion ender. Usually said by folks who see him dressed up at a dinner or such once every 4-6months. People (most) do not really want to know about ALZ or what it is like to live with it, either having it or caring for someone having it. The comment negates your life experience with this disease. The life experience of commitment, financial distress, future uncertain, family disruption, and general total upheaval.