How do you respond when people ask you how spouse/partner with Parkinson's is doing?

With people in my circle of support, I answer candidly about what’s happening. With others, including close friends and family who don’t seem to “get it”, I respond he’s doing ok, that we adapt and adjust . Then I move the subject with a question about their grandkids or dogs. In a way, I’m ok that most people seldom ask, as it saves me tap dancing or dealing with their uninformed opinions and such. And I want to maintain privacy, as so much of the daily stuff of PD is just personal. And sometimes seemingly trivial things are major to someone with PD,

I don’t think some people know how to handle a long term illness, especially neurological illness.
The only people who ask how I’m doing are my circle, which includes loved ones who are or were caregivers. I’m ok with that too, because there’s no way I want to discuss feeling exhausted, overwhelmed, saddened, and a myriad of other things with people who don’t understand. To other people, I respond that I’m paddling fast but doing ok.

You're not alone...there are many of us who understand and share your struggle. I hope you get a decent sleep tonight.

It depends on who’s asking. If this is a friend who is more like family, or a friend who has shared issues in their life with you, it’s okay to go into a little more detail. But if it’s a casual friend who really has no idea what your life is like, a simple, short answer is the one that’s called for. You’re only being evasive if they continue to ask about him and you give short, noncommittal answers. But no one really wants to hear the down and dirty details of caregiving. I know in my husband’s case, he’s bedridden and I do everything for him but feed him. No one needs to know all those details. Someone who’s never done it doesn’t comprehend anyway

If you feel the need to unburden yourself, perhaps a therapist would be helpful.

ArtLover, you have described about 99.9% of all of us on this forum. None of us is going to say, “I feel like I’m doing an awful job and I’m losing it!” And, I certainly would never describe in detail what I have to do for my husband to anyone with the exception of my journal.

The important people in your life already know what you’re going through and believe me, they send up prayers for you even if they don’t advertise it. Because of the stress we’re under, it’s difficult to project our true selves. Life changes for everyone involved. People used to say my personality embodied my name (Joy) but no one has said that to me for a long while...but we do what we can as best as we can, and when it comes down to it, what other people think is really not all that important.

Artlover, I was fortunate in a way, that I went into the PD chapter of our life already knowing who's been there for us in the past, and who will stay on the sidelines. I know when I can let down my guard, and when I need to have the force field up. You're not being phony by giving simple, short answers. You're looking out for the two of you - you're protecting his privacy and dignity. We deal with a lot of things with PD that are personal or may seem silly to others. As for people not asking about you, I think most people don't realize how hard it is for the caregiver unless they've been there.

Authentic doesn't have to mean oversharing. I would try and find something that you can share about the situation that is not TMI. Some small detail, maybe that he's having a good day today and enjoyed having blah blah blah for lunch. We're having some challenges today but we shared this moment blah blah blah. We were at the doctors and I overheard this funny thing blah blah blah. Finding the happy snapshot of your days that you will want to share with others can help you focus on the good moments as well. If you can share something specific that is not giving an evasive answer it might help ease the feeling of being less connected with others.

Unless you feel they really want to know, and not just being polite - you say, we have good days and bad days. As it progresses, you can even add, 'worse days' to it.

When you're having an extremely bad day yourself, you can even say, "you know it's terminal, right?"

We started saying that because my DH was 96 and there is no cure for old age. Somehow it made my DH feel better that I was acknowledging old age is terminal.

There is nothing wrong with you saying that PD is a progressive disorder. It is neither unkind nor TMI. It is what it is.

My heart goes out to you. For your own sake and health, you might consider occasional respite care. Your area agency on aging may be able to help with this. As for how to answer, I often reply “it depends on the day, thanks for skiing. What’s new with you?” You’ve already gotten some great suggestions here. This one, I find does not take energy I don’t have. I do hope you are able to find some help and/or support for yourself through this. Wishing you strength and peace.

I would respond with a truthful answer. They are asking so share and if there is a time constraint ask if they have time to go to coffee.
Education is important for everyone and if it’s negative balance it with the positives you have had this week.
The Parkinson’s and Dementia process is hard and people want to know.

Best wishes,
Lisa

I've felt this way about my mthr, first with mental illness, then cancer, and now dementia. Mostly asking "how are you" is just a greeting, and you are right, folks are looking for the "fine/great" that just feels wrong. I started using " As good as could be expected" with a smile. If they want to know more, they will ask, but generally they don't want to know. Your real friends you can ask if they can hear you vent, but casual conversation just needs a shallow, open ended answer.

My issue is a bit similar. I have many pain episodes, and the best answer is often 'not too bad, thank you'. Talking about it is bad for me, it makes me feel worse. I want the chance to be more positive with other people, for my own sake.