Friends commenting on my DW’s condition

brooklynborn123

Hello all. Just wondering if any of you have had this experience: friends and family offering encouraging comments about how my spouse doesn’t seem to be doing too badly based on spending a few hours with her/him. I know that they are well meaning and saying it to try to make me feel better but in some ways it makes me feel worse and as though I cannot trust my own perceptions of the changes i see in her. This is not logical on my part because as the one who is with her most of the time I see it and experience it all. Yet when a friend comments on how ok she seemed to be during their visit, I feel like they are gaslighting me, albeit out of love. And frankly I feel a little guilty about my reaction🤯. Anyone else experience this?

Katielu

Kappy55,

my DH’s sisters have called and talked to him, then they send me a text and tell me how well he sounded, what he could say or recall.

as much as I hate to say it, it made me angry! I thought “ am I doing something wrong? Does he only behave that way for me? Should I stop helping so much”

I finally shared with one of his sisters l, how I was feeling, she assured me, I am not crazy and she can see the changes, she is aware they had a superficial conversation that was not difficult to follow.

you are not the only one, and yes, I believe the comments are made with love. The store situation is just so HARD.

Jeanne C.

Remember that your spouse isn't showtiming for you because you're his/her safe space. You're definitely not perceiving it as worse than it is. In fact, you're probably underestimating it because it's hard to see the gradual changes. I've had the same feelings as you when people have made these comments to me. But you're the one living with him/her. And you're doing a great job.

Ed1937

When someone says something like that, just tell them he's having a good day, and he can appear healthy for a while.

SDianeL

Kappy55, I do think they mean well and are trying to cheer you up. They are also in denial. When that happens, I read them a list of the behaviors my DH exhibits daily. They are usually shocked and say something like "I don't see how you do it" -- Remember how those with dementia are masters at disguising it with others. When my DH goes to the doctor he's a different person so I also send all of his doctors a list of his behaviors and update is as new things come up. Also have them read the book "The 36 Hour Day" and send them the list of stages. Educating them will help.

Denise1847

Hi Kappy,

I think friends and family do this out of compassion and to perhaps make themselves more comfortable with the situation. I know our friends are getting sick and dying. When the friends look around and see my DH will Alzheimer's, they probably want to run away because it is a reminder of what might happen in their lives. It seems something is going to get us and it is just a matter of what. I would like to think they do it out of love but who knows. As Ed said, just tell them he is having a good day as they aren't going to understand it if you explain the "show boating" that can be done for short periods of time.

LJCHR

I get that a lot, too. My understanding is they can be good for a while, but can’t keep that up. An example is our son always thought his dad was doing fine-he wasn’t around for long periods. I was hospitalized with a pulmonary embolism late July and son had to stay with dad and care for him solely a few days. When I came home he admitted to me that he sees now what my life is like and he can’t thank me enough for what I do. I guess there was a blessing in my illness-now he understands. I tell doubters: walk in my shoes for a day.

I feel your frustration.

CStrope

My husband is a master at "appearing" to be normal. He can easily greet someone with "Hey how have you been" or "it's great to see you", all contributing to the facade of normalcy. Little do those people know that he is also giving these same greetings to absolute strangers.

We have friends that live a couple of hours away that meet up with us at a halfway point for lunch every 2 months or so. He is always great at hiding his short comings when we are out, and the group setting greatly contributes to his ability to do this. They always seem so shocked if/when I have the chance to relay some of the recent changes, or particularly unusual events we've been faced with lately. I know it's hard for them to believe my stories when they see such a different portrayal in the 2 hour meet up we have. Last week, I made a short video clip of him rambling and not making any sense. I sent it to them to show them what his "normal" daily actions are like. They thanked me and said now it was much easier for them to comprehend what his status is truly like.

harshedbuzz

@Kappy55

I have lived this twice. I have an adult son with high functioning autism-- so basically a very cute, quirky, bright and chatty child who always straddling the mainstream and disabled world. I got this a lot with my son. It generally came from one of two mindsets.

The first were those who genuinely cared about me and who felt minimizing his disability was somehow being inclusive and supportive of him. They didn't realize how dismissive this feels of the impact in our lives or of the effort DS and a whole team of professionals were putting into helping DS be the best version of himself.

The dementia version of this was when dad's brother, of the "every 6-week drive-by visit" fame, would insist that showtiming dad "didn't seem that bad" in response to us curtailing driving or placing dad in MC. My response was "yes, my mom takes very good care to support and scaffold him but it's starting to impact her health and I am not willing to lose both parents to dad's dementia."

The second batch were the disbelievers. These were the folks who just didn't get it. Often these were people who judged me for allowing my kid some accommodation in school or mainstream activities when he was younger. Since I wasn't sharing his medical history, I got a lot of unsolicited parenting advice. As a group, these folks probably aren't ever going to appreciate your situation, so it's best to conserve your energy and sanity and let it roll off your back.

HB

brooklynborn123

Thanks everyone for sharing your experiences—I am new to this board (relatively) and was not familiar with the word “show timing.” It explains a lot.

housefinch

I agree totally with @harshedbuzz and others. My stepdad (PWD) doesn’t know the date, can’t remember what he had for breakfast, etc, but 1 daughter insists he is capable of discussing quantum physics with her when she takes him out for breakfast intermittently. She is inconsistently involved in his life and I’m assuming she thinks his answering, “Oh, wow,” and “How cool!” at intervals during her monologue means he’s having a discussion and understands the content. Truly, my mind boggles at how some people either don’t notice or choose not to notice these changes. Keep believing in your truth and knowing that people here understand 💕.

Jo C.

My LO had a behavioral variant of FTD. When I say behavioral, that is over the moon behavioral.

When my LO was in front of anyone "important," doctor, social worker, nurse, son, etc., she would showtime with the best of them: When with someone "important," she was Julie Andrews running through fields of flowers ala, "The Sound of Music" . . . . when she got back to being in private; at home again, she could become a scene from Linda Blair in the, "Exorcist" . . . it was really, really bad.

Those who saw her in the fields of flowers never knew different. I could not begin to explain. It was not believed. What made it worse was she began to use blatant untruths regarding me as stealing from her and keeping things from her which had not a grain of truth and I never knew just who she told such falsehoods to. I had to learn to let go. It was what it was. Period.

She could hold a good conversation when in company. But truth will eventually out . . . . it takes tincture of time and then nothing can be hidden any longer; the brain damage is too severe.

I remember my brother, when he came for a rare short visit saying; "She is SO good; are you sure this is not an interpersonal problem?" She never, ever acted out in front of him.

Well . . . time passed; one Mother's Day, my brother, his wife and myself were visiting with her and brought gifts. Suddenly . . . she went off the rails - BIG time - she ranted, she raved, she shouted and swore, she yelled and pulled at her clothing and could not be calmed. My brother and his wife stepped outside while I tried to calm her. When I saw them next outside, brother was pale as could be and said, "WHAT the HELL was THAT?" He never doubted again. And sadly, by that time, the brain could no longer showtime. It was all out there and so very sad.

J.

Iris L.

When I told my close friend that I was deeply concerned about my memory, she said, "everyone has senior moments!" But not everyone takes memory medications. We didn't talk for a long time and our friendship suffered.

Iris

JC5

Agree with many of the responses. My SIL is always saying how great DH is doing when they talk for 10 minutes! And he’s fine with her, family, friends we occasionally see for all of 15 -30 minutes. It’s the 24/4 7 that they don’t see. Yes I at first thought it was me thinking/ seeing things but they don’t live with him and care for him each and every day !

Howaboutnow

I recognize those “encouraging” comments are not intentionally insensitive. However, they can be irritating AF. In the beginning, the comments made me feel as if i was over critical or sensitive. No. That was not the case. Those comments invariably come from someone with “drive-by” interaction with DH.

I don’t offer a list of behaviors or loss of abilities to those people. If i get a “he seemed really good” i respond with “I’m glad you felt that way” or some version of that. That’s it. I don’t need them to understand the situation or acknowledge anything about my reality. Frankly, the response gives them an easy retreat from a topic that is scary and ugly for most and a short response sincerely stating you are glad THEIR experience was positive, suggests a lot more than just that sentiment. You know what i mean?