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.

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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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ArtLover Sep 14, 2018
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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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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ArtLover Sep 13, 2018
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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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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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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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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ArtLover Sep 15, 2018
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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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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funnymomof3 Sep 16, 2018
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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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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Reply to MelissaPA2AZ
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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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Emmdee Sep 16, 2018
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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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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ArtLover Sep 18, 2018
I will take your advice and respond “as good as can be expected.” Both non-invasive (TMI) and honestly descriptive.
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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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