When Caring For Someone You Love Nearly Destroys You
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(OPINION) The Washington Post published a gut-punch of a feature story about Annie Morgan, a California mom and former Oakland Raiders cheerleader who now spends most of her time taking care of her daughter Ava.
Ava, 14, suffers from a rare nervous system disorder called Angelman syndrome. It’s caused by the loss of function of a gene known as UBE3A on Chromosome 15.
As the Post explains, Angelman syndrome is “marked by severe developmental delays, intellectual disability, and lifelong difficulties with balance and movement.”
We readers witness a typical morning as Annie, five feet and 110 pounds, tries to get Ava ready for school. The process involves, among other things, wrapping her arms around Ava’s waist and guiding her toward the family minivan “in a slow, sideways shuffle.”
Once they’ve reached the car, Ava wails and slams her body against her seat so hard it rocks the vehicle. A six-minute struggle ensues. Annie blocks a swipe at her head, tries to catch Ava’s arms, dodges them when catching them fails. By the time she and her two other kids are ready to leave, Annie is already sweating from exertion. It’s not even 8 a.m. yet.
The article is written beautifully by reporter Ariana Eunjung Cha. It makes clear that Annie and Ava are a microcosm of a much broader struggle that upends the lives of millions of Americans. On practically every street in every town in every state, folks are caring for sick loved ones, often with negligible help from the state, the medical community or anyone else.
“Sons and daughters lifting aging parents out of bed,” Cha writes. “Spouses managing medications. Parents helping adult children get dressed.”
Roughly 63 million Americans are family caregivers, up from 43.5 million a decade ago. The needs keep growing. Aid programs have been cut. Baby Boomers are aging.
The Post piece affected me deeply. That’s partly because it’s a well-told story, but largely because caregiving is a subject that moves me like few others. I lived it. I’ve never wholly recovered.
I began writing about caregiving while watching my first wife slowly die. I’ve spoken or corresponded with thousands of other caregivers. Nearly all tell some version of the same tale.
In 2000, at age 39, Renee was diagnosed with advanced cancer and told her life expectancy was two months. That she survived five years was, our family doctor said, the most amazing thing he’d seen in four decades of practice.
But she was critically ill and more-or-less bedfast the whole time. She required help using the bathroom. Help with bathing. Help with eating. Help with her meds. Meanwhile, she wasted away. A former beauty queen, she weighed 50 pounds when she died.
All this was unimaginably horrific for her. Renee was tough and brave, and perhaps the kindest person I’ve ever known. But her disease altered her personality, and not for the better.
By the time she passed, I’d developed depression, hypertension and diabetes. I was spiritually and physically depleted. I’d considered suicide.
Renee’s cancer killed her, but it almost killed me as well. It didn’t do our adolescent son any favors, either.
Ever since, I’ve been on a quiet campaign to alert people to the needs of those taking care of ill loved ones. Caregivers’ pain routinely is overlooked. Medical workers, clergy and friends are, understandably, focused on the sick person.
So caregivers suffer in silence. I recall one telling me she suffered head and neck pain from wearing a brave smile.
Here are some pressures they wrestle with behind those brave faces:
Financial problems: Perhaps the sick person was the family’s breadwinner but can no longer work. Or the caregiver can’t hold down a job while tending a disabled kid. Then there are those medical bills.
Role changes: A man whose wife has suffered a brain injury may become mother as well as father to their children. Adults caring for elderly parents can find themselves acting as parents to their parents. It’s jarring, disorienting.
Confinement: Caregivers can be trapped at home for days or weeks on end. Their house becomes their jail.
Loss of affection: An ill partner may be unable to have sex, or even to rub his wife’s neck. Yet the caregiver still craves a physical relationship.
Loneliness: Caregivers feel robbed of work, friends, church. They may not be able to talk candidly to the sick person, for any number of reasons. They may withhold their true feelings from friends for fear of being betrayed or shunned.
Loss of faith: Caregivers struggle to maintain their trust in a loving God as they witness a level of suffering they’ve never encountered before.
Guilt: They feel guilty because they can’t cure their loved one, or because they’re slighting their other children, or because, on their worst days, they’d rather see the sick person die than for either of them to continue living in their present hell.
Dread: They worry about who’ll take care of them or their kids if they become ill, too.
Anger: They’re mad at the sick person for putting them in this spot. They’re angry at themselves for not being selfless. They’re angry at other relatives for not doing their share. They’re furious with God.
Not surprisingly, over time many caregivers find themselves drawn to self-destructive behaviors. They abuse alcohol, have affairs, run away. They also develop health issues of their own.
Fortunately, there’s quite a bit you can do to help carry their burdens.
First, never, ever judge. You might think you know how you’d react if your mom, husband or child fell ill. I promise you, until you’ve been there you don’t have a clue.
Second, give the caregiver a safe — a nonjudgmental and confidential — place to vent. Pour a lot of coffee and listen. Don’t offer bromides or, heaven forbid, solutions. It’s called the ministry of presence. Just be there. Just listen.
Third, lighten the caregiver’s load. Volunteer to sit with the sick person a few hours so the caregiver can get out. Better, hire somebody to sit with the sick person and take the caregiver out yourself.
Fourth, help the caregiver look after his or her own health. Buy him a gym membership. Give her 10 free yoga sessions. Share the bounty from your vegetable garden.
Fifth, pray for everyone concerned. Pray hard.
Paul Prather has been a rural Pentecostal pastor in Kentucky for more than 40 years. Also a journalist, he was The Lexington Herald-Leader’s staff religion writer in the 1990s, before leaving to devote his full time to the ministry. He now writes a monthly column about faith and religion for Religion Unplugged.