I haven’t written recently about the rigors of providing care to a sick loved one, a subject that needs much attention.
But in the past week or two, I’ve been reminded of my omission by a pair of excellent articles on the subject.
The first, by Dr. Dhruv Khullar of Massachusetts General Hospital and Harvard Medical School, appeared in the New York Times online version. The second, by Robin Hamon of the Sanders-Brown Center on Aging at the University of Kentucky, appeared in the Herald-Leader.
Forty million Americans are caregivers, most of them unpaid.
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Using figures from an AARP study, Khullar estimates the economic value of caregivers’ efforts at $470 billion annually.
“Every day, they help a parent, grandparent, relative or neighbor with basic needs: dressing, bathing, cooking, medications or transportation,” Khullar writes. “Often, they do some or all of this while working, parenting or both. And we — as doctors, employers, friends and extended family — aren’t doing enough to help them.”
What I’m about to say overlaps with Khullar’s and Hamon’s pieces, but I’m speaking from my own experiences.
As some of you know, from 2000 to 2005, I provided care to my first wife, Renee, as she fought a relentless cancer.
Although I’d already been in the ministry 20 years and had visited innumerable sick people, I’d never recognized the toll that illness wreaks on those who provide care to the ill.
For five years, I did the best I could to help my wife. Those years were, of course, unspeakably hard on her. She ultimately lost her life.
But her illness almost killed me, too. I spiraled into depression, fatigue, chronic illness and despair.
To caregivers I’d say this:
You are not the only one. For a long time, I felt as if I must be the only person trapped in his house 20-some hours a day, changing bandages, cleaning up soiled sheets, banging my head against the walls as my poor wife slept her uneasy, drugged-up sleeps. But when I began writing about our struggles, I discovered there were many in the same boat; I heard personally from thousands of fellow caregivers. Somehow it helped to know I wasn’t alone. You’re not the only one, either. You’re one of 40 million.
Whatever you’re feeling on a given day is normal. When you’re under long-term stress, your emotions ricochet in unpredictable directions. Rage. Grief. Fear. Gratitude. Lust. Joy. Numbness. You never know from one hour to another what you’ll feel. That’s OK. As a wise counselor told me, emotions are neither good nor bad; they just are.
You are, by definition, a good person — stop beating yourself up. You must be pretty decent or you wouldn’t be sacrificing your life for someone else. Bad people don’t do that. Quit berating yourself for your shortcomings. Be merciful to yourself. Do your best on any given day, and leave it at that.
Pace yourself. You must take care of yourself first to continue taking care of someone else. That’s not being selfish; it’s being realistic. Arrange to get a sitter once or twice a week so you can have a day out. Eat healthy food. Go see a movie. Exercise.
Don’t ignore all the help out there. If you need counseling, get it. Hamon’s article includes several other types of resources for caregivers. Ask your doctor for tips. Do an internet search. There are people, books and websites to assist you.
Find a safe place to vent. You might not be able to talk candidly to the person you’re taking care of. But you might have a trusted sibling, friend, minister or adult child to whom you can speak honestly and safely — not in platitudes, not by mouthing all the chirpy, superficially happy things caregivers are “supposed” to say.
Remember, this too shall pass. It will appear that your tough situation is going to last forever, but it won’t. Nothing on Earth, good or bad, lasts forever.
To those who know a caregiver I’d say:
Pay attention. Look past the smiles and self-denial that caregivers feel duty-bound to exhibit. Look for the cracks. When the sick person isn’t within earshot, ask the caregiver if she’s struggling.
Ask specifically what help is needed — and don’t just announce what you intend to do. If you simply ask a caregiver what he needs, he’ll likely say, “Nothing.” And if you just announce what you’re going to do, it probably won’t be the thing he needs. Instead, make specific suggestions, but without imposing your agenda.
“Would it help if I sat with Edna a few hours so you could run errands?” you might say. “No? How about if I brought you all a meal? Yes? Great! Do you prefer homemade fried chicken, or carry-out from your favorite restaurant? What night works best?”
Never judge. Caregiving is the hardest thing I’ve ever done. Nothing else comes close. Unless you’ve held that job, you have no idea how you’d fare. All the old verities fly out the window. So never judge a caregiver for how she’s handling the situation. Is she surly? Has she lost her faith? Is she praying that Mama will just go on and flipping die, like, today? Don’t delude yourself that you’d do better. God might let you find out.
Reassure. Probably the best thing anybody said to me when I was low was, “Man, you’re doing a great job. You’re my hero. Hang in there.” Several friends told me that, and every time it gave me the strength to endure a few more days.
Paul Prather is pastor of Bethesda Church near Mount Sterling. You may email him at firstname.lastname@example.org.