Kudos to the Caregivers

Guest Opinion

By Karen Mulvahill | March 9, 2024

Growing up, my younger sister and I alternated between being best friends and worst enemies—sometimes within a single hour. We fought the way two cats will, staring malevolently until one makes a move, then slapping at each other’s faces without really connecting until one turns away. Minutes later we’d be walking to the record store together.

In the last decade, we’ve spent a lot of time together, never even arguing, much less slapping. That’s why it was such a blow to both of us when she was diagnosed with Parkinson’s disease. Our outings have become more difficult, because she can’t walk far without tiring. Recently, she fell and fractured a vertebra in her back.

As my sister’s caregiver, I join the nearly 20 percent of American adults who provide “unpaid caregiving to an adult with health or functional needs” (AARP 2020). Caregiving may encompass medicating, dressing, bathing, and feeding the patient. Not to mention transportation to medical appointments, assisting with household tasks, providing emotional support, and acting as a medical advocate.

My sister’s back injury resulted in hospitalization, followed by a stint in a nursing home for rehab. It’s very clean, uncrowded, with mostly friendly, competent aides. But it’s also sterile and cold. Basic choices like what and when to eat are made for you. “Home is the one place where your priorities hold sway” (Atul Gawande, Being Mortal: Illness, Medicine and What Matters in the End).

No wonder that seven in 10 Americans say they would rather die at home than in a hospital or nursing home. So it is the family that must step in.

Medical advances are enabling longer lifespans, but as Gawande writes, this means “We need help, often for long periods of time, and regard that as a weakness rather than as the new normal and expected state of affairs.”

My sister and I come from a long line of do-it-yourselfers. We don’t ask for help. My father remodeled our kitchen, fixed our cars, and built a garage. When he got cancer, he fought it the way he lived his life, confident and determined. He never once admitted he might die, even when he could barely walk.

As a culture, we’ve adopted a transactional approach to illness. Get sick, go to the doctor, undergo treatment, get better. If we don’t get better, repeat until someone has the courage to say, There’s nothing more we can do, or I don’t want to any more. The last time we took my dad to the hospital, the doctor looked at us and said with exasperation, “Why did you bring him here?”

The nurse at my sister’s rehab facility told me, “She just stays in her room and never asks for anything.” Well, yeah. We don’t ask for help. As her caregiver, it’s my job to have that conversation with her, to identify unmet needs, like a desire for fresh strawberries, that will make her life more pleasant.

This is not to say it’s easy. I confess I had a meltdown a few weeks ago. I was scheduled to travel with friends and the day before I was to go, suitcase packed, I said flatly, “I don’t want to go.” I called my friends, embarrassed at what I perceived to be my weakness, and they couldn’t have been more supportive. I only had to ask for what I needed. And that was a few days of rest at home.

As a caregiver, you might get frustrated with your loved one for not doing what you think they need to do to get better. And there are times when you may feel resentment of the loved one or, in actuality, of the situation that is taking so much time and such an emotional toll. That’s a sign that it’s time to ask for help and to focus on your own needs. Just as you were willing to step up for your loved one, others want to help you.

Although it’s easy to put off your own medical appointments, or yoga classes, or hikes with friends, these are the things that nourish your body and soul and enable you to keep on going.

What would I do without you? my sister asked one day. And I shrugged it off but want to revise my answer. What would I do without you?

Who else to reminisce with about the time you tried to steal my boyfriend (a slappable offense then, laughable now)? Or when we got high one year before Thanksgiving dinner and dissolved in giggles to the puzzlement of everyone else at the table.

Caregiving is a two-way street. I am grateful to be healthy enough to be a caregiver. I am grateful to have a sister that I love. I am grateful that I can do things for her whether she asks or not. If you’re a caregiver, take care of yourself. If you know a caregiver, offer some help.

Karen Mulvahill is a writer living in northern Michigan.