Like so many people around the world, I was deeply saddened to learn of Dolly Parton’s passing. Watching the tributes pouring in, she will be remembered for so many things-musician, writer, actress, philanthropist, entrepreneur, big heart and one of the most giving people ever. She truly represented the best of America. What may have been her most incredible role, but little discussed in the media, was caregiver to her husband, Carl Dean, who died over a year ago.
On August 21, just four days before her own death, she said, “I am dealing with some health issues that I just didn’t pay attention to when I was watching over Carl,” Dolly was the primary caregiver of her husband, and it took its toll.
Called the “widowhood effect,” more than one study has shown much higher rates of mortality in the first 18 months after a spouse has died. Missed medical appointments, ignoring symptoms, postponing social activities and figuring, “there is time for me later,” contributes to a high rate of death for the surviving spouse.
Time and again, I watch caregivers give their all to take care of their charge, ignoring their own health and well-being. A woman I worked with, whose husband had Parkinson’s Disease (PD) put together a support group for couples who were in a similar situation. When she was in the midst of chemotherapy, she noted that nearly all of the caregivers had already died, or were like herself, very ill, while those with PD continued to do okay.
Dolly was a straight shooter so in her honor and memory:
FOR PROVIDERS: A caregiver is a critical part of your patient’s care team. However, they can be easily over whelmed with jargon, responsibilities and aren’t always forth coming in discussing how they’re doing for a variety of reasons. It’s a real worry for some caregivers that if they say how difficult a time they are having, the person may be removed from their care.
Try not to make assumptions about what their capabilities are. Just because they were rock stars during your patient’s last hospitalization, it doesn’t mean they will be capable of a repeat performance two weeks later.
Most importantly, listen. Sometimes people just need to vent, other times they really need a referral and specific types of help and more often, they need both.
To help you in helping them, check out Support Caregiving’s Resource Guide for Health Care Teams. This guide offers busy health care professionals the tools and resources needed to include family caregivers in a patient’s care journey, helping to improve patient care and enhance the caregiver’s experience.
FOR CAREGIVERS
DON’T ignore your health and emotional needs. Make them a priority. When you see your medical provider, make sure they know you are a caregiver as it has a direct impact on your health.
OTHERS can help. Ask them. People like to help so give them an opportunity. Expand your horizons about who can share some of the responsibilities It doesn’t have to be family members but can include: neighbors, people you socialize with, friends, other caregivers, or volunteers connected with churches, social organizations, senior center and other community based organizations. Be clear what you need. If you can afford to hire help but don’t know how to go about it, ask a friend if they can help you do that.
LEARN about being a caregiver as well the person’s condition Join a caregiver support group, particularly a condition specific one. You’ll learn a lot of tips and tricks, get some of your questions answered and more. If you can’t go to in person meetings, join a zoom group, a telephone one or participate in a private Facebook group. You can find out about groups by asking a medical provider, checking on line and with your local hospital and health center.
Attend yearly meetings. Different conditions will hold annual meetings where vendors and speakers come and address issues and concerns of patients and caregivers. You can not only learn a lot but you can also find support.
Understanding what’s involved in your charge’s condition can help in multiple ways from knowing what to expect and how to prepare for it as well as not having unrealistic expectations of yourself or them.
Check out these resources.
• Taking Care of Yourself: Tips for Caregivers from the National Institute on Aging
• Caregiver Action Network: 10 Tips For Family Caregivers: Balancing Caregiving And Self-Care
• Caring Bridge: 14 Life Changing Tips to Relieve Caregiver Stress
LET people know what’s really going on: If you go to your charge’s appointments (medical or another type) and don’t say anything about your own needs and stresses, they will just assume you are fine, and will continue to pile on the responsibilities. There is no shame in saying, “I can’t handle it.” There are resources out there to help.
By the same token, be honest with family and close friends about the situation. If they don’t know they can’t help. More than one caregiver has told me how they aren’t telling their kids, who are actually adults, or friends about how bad the situation is because they a) don’t want to upset them or cause them unnecessary worry or b) “they,” meaning their charge, would be mortified for people to see them like this.
Sharing the difficulties of caregiving is not a betrayal of them or a poor reflection on you. No one is helped, particularly the person you’re caring for, if you burn out and get sick or worse.
YOU MATTER: Make yourself a priority. “You are enough. And anyone who tells you otherwise isn’t worth your time.” Dolly Parton
Dolly Parton, more than anything was a hope dealer through her music and various programs like The Imagination Library. It’s my hope that we can do so much more for our caregivers in her memory and by her example, thereby reducing caregiver burnout and improving care for those who need it most.
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