Artist: Kim Radford Photo: Michele Bernstein
In an interview published on August 21, Dolly Parton told People Magazine “I am dealing with some health issues that I just didn’t pay attention to when I was watching over [late husband] Carl.”
Four days later, Parton died, leaving behind millions of heartbroken fans — and an important lesson for those of us in the Parkinson’s community.
Parton was wealthy — and well-connected — enough to have access to the absolute best in medical care for her and her husband. She could afford, if she wanted them, to pay for round-the-clock in-home caregivers. She could pay for someone to drive either or both of them to doctors’ appointments, shop for groceries, do the cooking, and keep their home clean and in good repair.
Yet when her husband was sick, she neglected her own health to take care of him. We don’t know if that’s what killed her, but there’s a reasonable chance it was a contributing factor.
What does this mean for the rest of us, who don’t have Parton’s resources?
We need to support the care partners.
Parkinson’s activist and writer Richie Pikunis put it this way.
They organize the medications. Drive to appointments. Watch for falls. Decode facial expressions, frozen feet, soft voices, and bad days. They sleep lightly because something might happen. They cancel plans without mentioning it. They become our legs, our memory, our advocate, our backup plan—and sometimes the only person standing between us and complete chaos.
Then everyone asks how the person with Parkinson’s is doing.
The Family Caregiver Alliance reports that
- Family caregivers spend an average of 24.4 hours per week providing care.
- Family caregivers who reside with those they provide care for spend 40.5 hours per week caring for this person
- Those caring for a spouse/partner spend 44.6 hours per week performing caregiving tasks.
Dealing with the equivalent of a second full-time job, it’s not surprising that many care partners neglect their own health.
When this happens, both the caregiver and the cared-for can pay the price.
A former co-worker of mine was taking care of his wife, who had cancer. It was a full-time job. He died suddenly last month of a heart attack.
I can’t prove the strain of caregiving was the cause. But if it was, everyone around them paid a price.
He lost his life, she lost her husband and care partner. The family is left scrambling to figure out a way to fill his role.
We need to take better care of the care partners.
WHAT CAN WE DO ABOUT THIS?
I’d like to recommend rebuilding the American health care system from the ground up.
Since I don’t currently have that authority, it may be best to educate ourselves on the resources available to us.
Depending on where you live, there may be local or regional resources available to you. Where I live, Parkinson’s Resources of Oregon has a helpline available to connect care partners in Oregon and Southwest Washington to support groups, educational events, and answers throughout the region. 800-426-6806.
Google “Parkinson’s Disease Support [Your Town]” to see what might be available to you.
NATIONAL RESOURCES
American Parkinson Disease Association Resources for Care Partners
ARCH National Respite Locator Service
Family Caregiver Alliance Parkinson’s Disease Caregiver Resource Guide
Michael J Fox Foundation Facing Parkinsons Together
National Institute on Aging – Caregiving
Parkinson’s Foundation Helpline: 800-473-4636 or by email helpline@parkinson.org
Parkinson’s Foundation Care Partner Resource Page
Parkinson’s Foundation Care Partner Learning Lab – “A series of self-paced online courses designed with care partners in mind.”
Parkinson’s Foundation Caring & Coping: Care Partners Guide to Parkinson’s Disease
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A final message for care partners: As Richie Pikunis put it in his essay,
Putting on your own oxygen mask is not selfish.
It is how you remain alive to help the person sitting beside you.
Care partners: please take care of yourselves. Do it for you, for us, and for Dolly.
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Bonus for Those Who Read to the Bottom
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Want to support this blog?
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Depending on your age, you might remember Bobbie Day’s original version (1958) of “Rockin’ Robin,” or Michael Jackson’s hit cover from 1972. But in between those two (1965) there was a very good garage rock version of the song by The Henchmen.
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There are oodles of “Thunderstruck” videos on YouTube. Most of them are boring – I know because I’ve watched them. This one is at least different.
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Aaron Pollock Delta-fies “Folsom Prison Blues.”
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White Stripes. “Jolene.” Just a little overwrought.
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“Jolene” is such a great song, and Parton was such an exceptional singer, that the record may even sound better when it’s played at the wrong speed. Thank you for everything, Dolly.
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