What do you say? Suggestions?

Belle60 · August 21

As more family and friends learn of DH's disease, I have experienced an increase in the question: "How is he doing?" I am really at a lost as to how to answer this question. I want to say how do you think he's doing with this terrible disease- with a sarcastic tone but of course I do not. I usually say he is doing ok and change the subject. Someone will occasionally ask me how I am doing and I say I'm ok. It is really difficult to describe how we are both doing and I am at lost as to what to say.

I am looking for suggestions on how to deal with this question. I dont want to be rude but I honestly don't know how to respond.

charley0419 · August 21

I get same question, I say holding her own , or it’s a day by day experience.

Belle60 · August 21

https://alzconnected.org/discussion/comment/220056#Comment_220056

Yea I have said we are taking day by day too!

Jez975 · August 21

”There are good days, and not so good days “

Mint · August 21

I noticed this question comes up quite a bit on here.
For me, it depends on who asked the question as to how I feel about them asking that question

if it’s someone that I talked to frequently who I feel does truly care about me and my family the question doesn’t bother me. Like you, though I still find that question very hard to answer. I usually just say about the same or it’s challenging something to that effect.

if it’s someone I never talk to and rarely see but I know them, that’s when the question bothers me more. I try to think of it as they don’t really know what to say to you so they say how is your mom doing? It’s an easy out for them. Hopefully it’s an innocent question and I usually just say she’s OK .

CampCarol · August 21

My stock answer is “we’re hanging in there”, and that’s pretty much for everybody. What usually alters my answer is what kind of day I’m having. If it’s one of those like yesterday where I got zero sleep the night before, it's more straightforward, aka “this s*cks, and we’re dealing as best as we can”. Not really polite, I know, but nothing about this disease is!

fmb · August 21

Just because someone asks, it doesn't mean they're entitled to an answer. I'm in the "We're hanging in there" camp for most people unless I know them well and they truly care about us. Many people are asking just to be polite. For those who know me a little better it's "He has his good days and not-so-good days." Only those who I know who truly care and will truly understand get the full picture.

jfkoc · August 21

or "how much time to you have for my answer"…..

Stan2 · August 22

I think most folks are just trying to be kind and show that they care. It would be impossible to explain to them how she is. Anybody who has not lived this life simply can not comprehend it.

Denise1847 · August 22

I tell them the truth - he is declining to the point where his speech is difficult, he is confused almost all of the time and is struggling to grasp what is happening. That answer usually stops the conversation. It also lets them know in case they try to talk to him or misunderstand something. In the absence of information, people usually come up with their own conclusions.

trottingalong · August 22

I never take the question as a personal afront. Yes, it’s difficult to answer honestly, so most of us give a “Pat” answer. For me, it’s worse if someone doesn’t ask, or even acknowledge there is an issue. I like to think people mean well. For the most part, I say “his short term memory is shot to hell, but otherwise we are doing ok.” And then I change the subject.

Roberto Parmigiani · August 22

En general evitan molestarme con la pregunta, o la mayoría quizá no sientan real motivación para hacerlo. Cuando lo hacen me esfuerzo por narrar la verdad como forma de compartir mi sufrimiento

fmb · August 22

https://alzconnected.org/discussion/comment/220130#Comment_220130

Per Google Translate:

In general they avoid bothering me with the request, or most people will find there is no real motivation to do so. When I do it I force myself to tell the truth as a way to share my needs

CindyBum · August 22

I usually keep it short. I tell people it's awful, DW is not doing well and is progressing, but somehow we both get up each day and make it through it.

Shelly / Texas · August 22

"He has good days and bad days. Thank you for asking."

Kevcoy · August 22

I've been known to say, The disease is progressing more quickly then I'd want and I'm exhausted.

annie51 · August 22

I’ve answered as “hanging in there”, “it’s challenging, but I’m taking it day by day”. I appreciate anyone who asks, because I like to think they truly care. I know that they can’t understand the depth of what we go through, but I don’t want to sugar coat it either.

Buggytoo · August 22

I often say "hanging in there but this isn't easy for either of us."

orth · August 22

I say that it is like the man who jumped off a 29 story building as he passed each floor, so far so good.

Belle60 · August 22

https://alzconnected.org/discussion/comment/220110#Comment_220110

I know. I think that is what trips me up. Not sure how to explain what is it like.

Belle60 · August 22

https://alzconnected.org/discussion/comment/220175#Comment_220175

That is a good response. I just get tripped up by the question. I had one person ask me if DH was getting better. So obviously they did not understand what the disease is about.

PattiRN2 · August 23

I have often thought about this question and concluded people don’t know what to say. Why? Maybe because no one has taught us how to have this conversation. Brain diseases and mental health are stigmatized and it frightens people. Can we really be surprised when they don’t know what to ask and we don’t know how to respond.

Bring us out of the isolation. Its time we have a national conversation.

sandwichone123 · August 23

I've just quit trying. Unless someone has shown that they want genuine information and can provide genuine support I'm just saying, "He's fine." Having a pat answer means I don't have to think about it, and it avoids the pushback I receive if I include any reality in my response.

What do you say? Suggestions?

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