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

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

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How do you feel when they do not ask you how you are doing? I often feel that people expect me to respond with a polite, "Fine" so they can express caring, yet not have to listen to a truthful answer. I often respond "Well enough," which is somewhat honest, but not fully accurate. When I feel I'm being evasive, I remind them that PD is a progressive disorder... then I wonder if that is an unkind response or simply TMI. I also feel frustrated because people rarely ask me how I am doing. Truth to tell, I sometimes feel he is doing 'better' than I am because I carry the emotional burden as well as the executive decision making that accompany PD.

Parkinson's Disease Spouse

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When people ask me how my husband is doing, usually I am short and brief! My theory is: Most who ask do not really care, because if they did they would just send or give you a note or card that expresses comfort and concern or reach out in others ways without inquiring about how a person is doing. Many who ask seem to want to hear the downside of the disease unfortunately!!!! I am like many others, I am very, very private and wish people to know very little. My husband is still very headstrong and independent and in denial about the disease, so he continues to carry himself like he is still the same and it makes my job harder. My advice to people who want to know is: EDUCATE yourself on the disease if you SINCERELY want to know how a person is really doing!!! Our lives will NEVER be the same, so let us have what little joy we can, when we can without constantly being reminded of what the disease is doing to us individually and as a family!!!!!!!!!!!

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I truly appreciate your response. It helps me feel seen and heard though we have not met. And isn't that truly what most of us yearn for (in addition to a multitude of other things). Warm wishes to you.

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When it's a bad day, I say "Not worth a darn, but thanks for asking!"

You know if someone really cares or if they don't by the look on their face.

I've read how you are doing on other answers and I just want to encourage you to keep up the good work, it is the most difficult job in the world and you sound well balanced and strong. May you find peace and unexpected joy in each day.

HUGS for all you do! Your husband is very blessed to have you.

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I hear that all the time. How is he doing? There is no straight answer to that so the reply is 'fine'. Not stuff like he just messed his pants or he punched me or he cant stand up straight or he wants to visit his mom. They wont be able to respond to that. Too much info.

Even better, they look at him and say 'you look really good! ". Of course he is a good lookin guy, I found a good husband. Smart and kind and good looking. I havent heard any say I look good or ask how I am doing in a long time. It used to bother me, but not anymore. I just appreciate that I must be doing a spectacular job of keeping him well taken care of. What else can you do?

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So as I wrote to ArtLover, How are you doing? I can't see you to say you look great, but considering what you have to do, I am sure you look just fine! If your hubby is smart, kind and good as you said(despite what he might be like now!), you must be in the same categories or why would he have chosen you? In the end, what matters more is how you look on the inside, and I think I see someone I really like...

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So ArtLover, how you are doing??

As for answering queries, as others have suggested it depends on who is doing the asking (close friend/relative? probably can be a little more candid - passing friend/neighbor? try some of the generic responses others posted)

When going to mom's condo, several neighbors will ask how she is. Only one truly cares much, so I don't go into details. I think the others are mostly nosy (mom was never really close with them.)

But, back to you - how you are doing? :-)

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Thanks for asking. So sorry I didn't reply sooner. "How am I doing?" is actually a tough question. Sometimes I feel like I am leading two parallel lives: one as a person who copes well with what lives has given her and tries to create a life based on my interests that is apart from my husband and his illness; the other person is angry, resentful, disappointed, sad, and very lonely. I truly do what I can for myself. I see a therapist weekly as an outlet and have a couple of friends I share life concerns with. However, everyone seems to be into positive psychology, always looking for the silver lining. However I feel that is phony because I clearly see the dark shadows quite clearly. I have been to a couple of support groups, but they avoid discussing real feelings, preferring to look on the bright side. Some people may see me as negative, but I believe I am truly realistic. Go figure!!!

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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.

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It is very nice that you have people and friends that care enough to ask. If it’s been a rough week for you, I think you can say that, without going into great length and thank them for asking.
With very close friends you could ask if they’re free for coffee or lunch because you need some time to vent. Some people are good listeners and some may have helpful offers or suggestions that could be helpful.
If people haven’t gone through what you’re going through they are helpless to understand or know what to do or what to say.
If you’re taking things personally it may just mean you are completely worn out physically and emotionally. If possible, pamper yourself whenever you can. It’s good for you, and you deserve and need it more than you realize.
May the Lord lift you up and guide you through each day.

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Yesterday--when I felt bummed out and had help at home--I took myself to a lake with a book, my computer, and Indian take-out. I just sat there enjoying the beauty, the food and my mental activity. I was surprised that my mood was elevated when I returned home, and remains so. Though the good feelings nver last, I comfort myself by knowing that the potential is there.

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Some people truly care about what's going on, but not a lot. Most people want to care but don't know how. And some are simply clueless. At a family gathering when my brother with PD was still able to get around in a wheelchair and still knew where he was most of the time, I was pushing him around and some person I didn't recognize came up and asked Do you know who that is? (Gesturing toward me). He answered, Yes, that's my sister; I only have one sister. She faded away, not knowing where to go from there. Just smile and go on, there's nothing else to do with that. Appreciate the ones that are good company, and don't take time with the others.

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Yes. Like you I am trying to prune my life of people who just suck the air out of me. I’ve too much on my platter to try to be nice to everyone these days.

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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.

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I will take your advice and respond “as good as can be expected.” Both non-invasive (TMI) and honestly descriptive.

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Yes, I agree with you. Instead of asking how our LO is doing, it would be more helpful for people to ask what they can do to help. Words without action are just words. Honestly, it doesn't make me feel better. That doesn't address our fatigue and loneliness. I think that it's appropriate to tell them that it's progressive and it isn't getting better and let them take it from there.

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Wouldn't it be wonderful if people would offer help. Sometimes I feel I end up reassuring them about my husband's condition.

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“Still fighting”

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Trust your instincts as to whether the person asking is truly invested or just being polite. A "doing OK, thanks for asking" will generally suffice.

I hope you have people in your life with whom you can open and honest. You NEED to share and verbalize your frustrations and anger to someone who will not judge you.

People are often kind of terrified by the illness and the feeling of "that could be me" that comes when disease hits. Or any terminal illness.

My DH has multiple health issues--we're working through them--but when he was waiting for a liver transplant 13 years ago I thought I would go mad from all the well meaning individuals, who were curious, but not very thoughtful. He had HepC and that ruined his liver---we were pretty open and honest about it, but people still judged him/us and were kind of awful at times. His own mother wouldn't eat or drink anything from our home as she thought she'd get it. (sigh)

He had 2 major heart attacks this summer. We're still reeling a little. We've chosen not to overshare. A very few people ( and I can say that our sibs have been pretty much MIA during this terrible time!) know all the stuff we went through and I liked keeping it "in house".

I REALLY appreciated the few people who bothered to ask how I was getting along. Caregivers definitely get the short end of the compassion stick.

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It is tough caring for someone with a long-term illness, both for the person with the illness and the carer(s). With my wife, now ten years into dementia--two years of vascular dementia and eight years of Alzheimer's, I find I need the support of carers outside the family. All of the children are engaged and helpful, but they have their own lives to lead and families to care for. You have a lot of good advice here, especially the need for a range of answers depending on the person who is trying to express sympathy. I tend to move onto an educational plane and start talking about what can be done to help the person with the illness. This is easier to do with PD than with dementia, because there are pharmacological products that do impact PD, whereas with all forms of dementia there is nothing that stops or limits the disease in a significant way. I find reading helps, especially books like Luke Tanner's "Embracing Touch in Dementia Care: A Person-Centred Approach to Touch and Relationships" (published by Jessica Kingsley, 2017) and Jane Nicol and Brian Nyatanga's "Palliative and End of Life Care in Nursing" (2nd edition, Sage 2017). Reading about the experience of others caring for those with long-term illnesses helps me to avoid mistakes and remain alert (a good novel also helps!). Ultimately, C. S. Lewis is right in his book, "The Four Loves" that love is the foundation of life. The four loves are friendship, affection, charity and Eros (the state of being in love with or without a sexual side). That's easy to remember, harder to live out--FACE, Friendship, Affection, Charity and Eros--but both with PD and dementia you have to add an "S" for Slowly to give the suffering person time to understand and respond.

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My answer to people who ask about the condition of my husband (he has ALZ) is "okay" or "about the same". I don't go into detail because, truthfully, they know what it's like to have the responsibility to care for someone with dementia. And I don't believe they want to know a blow by blow description of what my life is like and I appreciate their asking. It makes them feel better for having asked and it makes be feel better that they thought to ask how he's doing.

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Easy there doing great..thank u ..

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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

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I also would be truthful - it may help someone! And I like the idea of the coffee offer!
My husband has Alzheimers (diagnosed in 2011) and it is so difficult to tell all our old friends, because they all live a long way from us. Now I am thinking of keeping them in touch regularly (no, not F***book - I hate it); I think I may create a 'group email' and send to all once a month or so. That way people will learn about Alzheimers, and it will be no great surprise if he deteriorates, and i will not be blamed for not telling people!!!!
Also - I am planning to go on holiday again before Christmas - my husband seemed to get on ok at a local care home in the summer, hopefully he wont dig his heels in at another stay!
I heartily recommend 'time out' for carers (please dont use the term 'respite' in front of me!) because we have to do so much with no prospect of improvement, or even a thankyou.

Best wishes and love to you all from the UK
Emmdee

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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.

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Parkinsons is not terminal. People die WITH Parkinsons but not OF Parkinsons. (Though they may die of things that were induced because of Parkinsons, such as head trauma that occurred because of a fall that occurred because people with Parkinsons have balance issues.)

I agree that there is nothing wrong with saying PD is a progressive disorder. This is absolutely true and lets people know that the person with Parkinsons will not be getting better.

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It seems to me that bad experiences burn themselves into our cells while the good ones fly away on butterfly wings.

Do i remember the good times ??? Of course not. Lying in bed at nite/showering/driving to work ... what do i remember ... sadness of course. So i have to divert my memories ... which can be hard even tho i KNOW i had some.

Sad ? Pathetic ? Well yeah.

If im 78 now ... how much worse will it get ???

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I love your metaphor about butterfly wings. I'm 76 and still hoping to create good memories sometime down the road. Perhaps I am not as realistic as I think I am.

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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.

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I just started respite care half a day with a woman who also helps with cleaning. She has her challenges, but she is good-hearted and a wonderful worker. What a Godsend! My wonderful daughter also works from my home once a week so I can get out. I still wish I could have some spontaneity in my life so I can feel more connected to the world outside the walls of our apartment.

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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.

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Your advise to me is particularly useful in general, as well as responding to well-intentioned queries about my husband. I believe it was Rick Hanson--a neurologist--who wrote that the mind is velcro for negative events and teflon for positive memories. He attributed it to the old 'flight or fight' response, when early humans had to react quickly if their lives were endangered, Today, however, those negative experience can create channels in our neural pathways that become thought habits. I realize that I need to develop new habits of mind, just like I try to strengthen my muscles at the gym (when I go). Thank you.

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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.

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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.

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Thank you, Linda, for giving me a new perspective. Thus far in my life, 'authenticity' has been one of the personal traits I value most. I feel 'phony' when I give evasive responses to questions about my husband and my life with PD. I now realize that it's necessary to adapt to a 'new normal' by carefully editing my responses to people who express concern about me and my husband. I must admit, though, that this strategy makes me feel less connected with people in my circle who are not intimates. That, too, is a loss.

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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.

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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.

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Thank you Ahmijoy. To clarify, I guess I often feel like an imposter, acting as if I have my life all-together on many fronts, yet sometimes feeling unraveled due to constant caretaking. As a result, I sense that my true self is often hidden from many people in my life. As you suggested, I see a therapist regularly to unburden myself. I appreciate your suggestion of being selective in who I tell what.

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