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Questions For You and Your Care Partner

Questions for you and your care partner. Parkinson’s not only affects you but also your partner, caregivers, and family. Every so often, it is nice and, perhaps, necessary to have a conversation. You may find the answers to these questions interesting. This was a conversation with my care partner:
How much did you know about Parkinson’s before my diagnosis?
Did any member of your side of the family have Parkinson’s?
What were your feelings that day in the Doctor’s office?
In looking back at the early years, what was the hardest part of dealing with my diagnosis?
You attended a Caregivers Support group during the early years. How did that affect you?
My progress has forced you to give up or modify plans. What are the top three, and how do you feel about them?
I have changed physically, mentally, and emotionally over the Parkinson’s years. Tell me about the changes you see and how they affect you?
How have you changed over the same time?
When you look back, what would you have done differently?
As my illness has progressed, our relationship has begun to change from Care Partner to Caregiver. What are your feelings about that, and what is the biggest/ most difficult part of this transition?
The pandemic severely restricted our outside social opportunities. How has our relationship changed over the years?
What advice would you give to people just starting this journey?

  1. My hubby has parkinsons but im not allowed to help him as he tells me its none of my bissiness and I am interfering he wont talk to our family doctor or go to his appointments with his parkinsons nurse he misses out on his meds as sleeps alot I am at my witts end debbie wife

  2. Debbie : It is your business as Parkinson’s progression means you will have to take more & more care of him as the disease progresses. Not taking his medications will cause more work for you over time. Not going to appointment, means they can’t change his meds when needed. Do you know someone he respects who will read him the riot act? Behavior like his will likely shorten his life. Is that what he wants? Caregivers have been known to give up. Do you have a Caregiver Support Group nearby? Does he realize he could lose you? My words may sound harsh. I ‘ve seen too many men act this way. I was diagnosed in 2014, I’m now 84, my Parkinson’s has progressed to the point I can’t dress myself, clean myself, or feed myself. I’m full time in a wheelchair and without my spouse/caregiver, I would be in a nursing home facility and all alone.

    Phil Horton

  3. Hello phil he has the capacity but my adult social worker who has discharged me now said it sounds like my hubby is choosing to do things the doctor also said the same all this is very very frustrating as whatever i say husband is ignoring this

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