So what's it like ?

Just Bill

Well meaning friends and family will ask what is it like living with a wife who has dementia? I used to start to explain but knew I wouldn't finish before they lose interest and want to move on to how they have a great idea that they think may help. I pretty much have condensed the answer to "There are good days and bad days but it is always an adventure." and pretty much leave it at that. I have never really been a talker I just suck it up and pretend everything is great.You can't really have a conversation with any detail unless they have been there. I will say again this message board is a breath of fresh air !

David J

We all have our way of dealing with well meaning but clueless friends and family. A pat answer and moving on seems to work best. Your answer is as good as any.

A. Marie

Bill, you're absolutely right that no one gets it who has not walked a mile (or a marathon) in our shoes. I have a few dear friends who do try, God bless 'em. But everybody else--well, my standard answer is pretty close to yours. 

My particular pet peeve: folks who say, "Oh, I know all about Alzheimer's. My grandma had it." I just smile, grit my teeth, and think to myself that a grandma is NOT exactly the same thing as a beloved spouse and life partner of 40+ years...

Rescue mom

I agree with almost all you said. Most are being nice, but they don’t really want to know, and I feel like giving much detail would sound whiny. (But trying to pretend everything is great, is hard!) I have, very occasionally, told them to imagine being a single parent of a 2-3 year old, who is very large and active, with some disabilities. But even those parents can see and expect progress.

I was struck recently by some women in my IRL support group. They’re now married to someone in midstage dementia—their second marriage after losing first spouse to other terminal illnesses. They all say dementia caregiving is more unexplainable to others. 

I think although we here are all so caught up in dementia world, our numbers are still relatively few; and less in many areas than the various terminal illnesses. Others really just don’t get it. And they don’t want to. Spouses of some of DHs old friends say he makes them scared of what could happen to them. (Explaining why they don’t visit him).

Apologies for tangent…as said, it’s just hard to find people to talk to who know what we deal with. 

It also makes me think about the friends who volunteered to go on a short trip with my DH and me,to help with DH. They’d never been around anyone with dementia more than an hour or so, and they were and are angels and treasures to do what they did. And we’d traveled a lot together before Alzheimer’s.  But even they said (after about 36 hours) it was a lot more than they expected, or could handle.

Yes,those who say “oh yeah my gramma was forgetful,too” — well, yeah. What she said. Sigh.

billS

I guess I have a slightly different perspective. Maybe I have more sensitive friends, but when someone asks about my wife and I inform them of her dementia they of course express sympathy for us, but also always ask, "But how are you doing?" I explain in general terms that I am doing OK but that it is a hard journey. I than try to move the conversation back in their direction, how are you doing? How is your family? etc. so I am not Mr. downer. After all, I need contact with friends to maintain my sanity and I want my friends to stay in touch. We all know that dementia is an impossibly difficult and heartbreaking issue and there is nothing anyone can say or do to fix it. So I don't expect them to be able to offer more than sympathy and emotional support. Plus they typically have their own crosses to bear.

Sligo177

Hi Just Bill,

Yup, people do mean well, and they want to just solve the problem for you - I get  suggestions, like "well, just write down the directions on how to use the remote" thinking they have solved the problem.  Or they see your LO one time for a few minutes and declare that they are getting better.  Makes you want to get testy sometimes, and I try not to....  It's often my very loving family members that do these things.  But they do  mean well.  And they never, never will realize what we are going through unless they come into the same situation.  We understand here and we get it, feel free to write whatever you want.  This is our forum. 

Buggsroo

I have friends who get it and those who don’t. The ones that get it are few. The one friend understands quite well has her own awful grief having lost her daughter to suicide. We prop each other up, go for walks along the beach and greet the friendly dogs on the boardwalk. 

My other friends, well they talk about their great lives and the trips they are taking. I feel I can’t talk about my husband because I would be a Debbie downer. I don’t see these people often, I can’t deal with too much exposure. One of my friends always tells me that my husband sounds normal. That makes me see red, it’s like he is negating what I am living through. Right now, I have fallen a rabbit hole and am living a weird existence, I am lucky I have people around me who get it. 

Just Bill

My wife and I were at a family gathering last weekend and my brother said: "She seems a lot better than you said she was." I just said yup.

Dio

Thanks for this post. I never know what to say when people ask. My answers range from "good days and bad days" to "Dr. Jekyll and Mr. Hyde," and "I don't know if I'll survive this" (which is when I feel that I'm whining). The bigger question is "do they really want to know?"

Bob in LW

Just Bill wrote:

My wife and I were at a family gathering last weekend and my brother said: "She seems a lot better than you said she was." I just said yup.

I think that your brother just set a new standard for "clueless".

RobertsBrown

When I get this I thank the person who said it.  Then I tell them it took a lot of work to get Di looking like that, and I appreciate the compliment.

DrinaJGB

I stopped trying to explain to anyone what it's like after so many years. Now all I say is "you won't know until you have been there yourself.". It's a bit blunt, but it shuts them up.

  I don't care anymore what people think of me. I guess you would say I am just tired of the Bulls**t.

Done.

Paris20

Just Bill, you have uncovered the most difficult aspect of talking to well-meaning but dementia-ignorant friends and family. I have given up trying to explain. It’s not possible for me to convey the detailed reality of my husband’s AD, now coupled with the effects of a crippling stroke.When friends and family find DH on a good day, they tell me that he isn’t bad at all. I can only say that there are good days and bad days. When friends visited and DH was happy to see them, our friends were pleased to see how well DH was doing. Then, in the last five minutes of the visit, DH was wheeled into lunch by one of the caregivers and he went ballistic, cursing, flailing, threatening, growling. I reminded my friends that my previous reference to Jekyll and Hyde had just been demonstrated.

Gig Harbor

A.Marie I would ask them how long Grandma lived with them.

sandwichone123

I have one friend, and my dad, that I give regular, brief updates to. I'll give them just a short story and move on, but over time it helps paint a picture. Otherwise, it's, "fine, fine, how 'bout you?"