Meet Jolyon Hallows, who cares for his wife.
Jolyon Hallows blogs on Parkinson's disease and caregiving at A Parkinson's Life.
What's your caregiving story?
My wife, Sandra, was diagnosed with Parkinson's disease about twenty years ago. Since then, as the disease has progressed, I've taken on more and more of the caregiving role. Today, she needs help in all areas of her life and, as her caregiver, it's up to me to provide it.
What's the hardest part of being a caregiver?
Three things. Initially, the hardest part was realizing it was necessary. Caregiving is not a job I expected or welcomed. For several years, I tried to keep the illusion of life-as-usual, but the growing need for care hammered home to me that I was now in a new role.
Second, it's hard that I can't escape the demands of caregiving. With the exception of times when a care aide is in, I'm "on call" all day, every day, without the ability to be spontaneous.
Third, it's hardest of all watching my once-vibrant wife decline into complete dependence.
What worries you the most as a caregiver?
That I suffer some event that makes me incapable of providing care. In that case, I'd have no control over what happens to my wife and no influence over the level of care she'd receive. I'm also concerned that I'll decline with age and, no matter what happens, I'll lose the ability to live my life as the younger me had hoped.
What do you need the most as a caregiver?
What I need is a cure for Parkinson's. More realistically, what I need is people who understand what I'm dealing with and can offer both sympathy and advice. I get that from my support group, because there are aspects of caregiving I'd never want to discuss with my family. I also some time away from the demands of caregiving. I get that with a part-time care aide and an occasional respite stay. Those moments are treasures.
If you got unexpected time off from caregiving, what would you do/where would you go?
"Unexpected time off from caregiving" means my wife has passed on. If she hasn't, if she's in a home or hospital, I'd visit her every day to watch over her, which still ties me down. If my caregiving came to an end, I'd get a massive motorhome and set out to visit all the places I've wanted to but haven't.
What do you want people to know about caregiving and your caregiving life?
It's not noble, it's not compassionate. It's drudgery and it's hard work. Sorry to be a grinch, but even though there are bright spots in caregiving, it's not a life I'd wish on anyone. My advice? Find people to whom you can vent: friends or relatives if you like, a support group otherwise, or a therapist. You need someone with whom you don't have to censor yourself.
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