Caregivers face an overwhelming burden. Here’s how you can help | Opinion

The writer, Rachael Scarborough King, took care of her husband, Ady Barkan, as he suffered and ultimately died from amyotrophic lateral sclerosis, or A.L.S.

Barkan was diagnosed in 2016 and passed away this past November. Since 2019, he’d “needed 24/7 caregiving support provided by a team of nine caregivers,” King wrote.

Fortunately, Barkan and King were able to work out what she describes, somewhat cryptically, as “an ad hoc arrangement with our health insurance company that reimbursed most of Ady’s caregiving costs, which totaled about $40,000 a month for round-the-clock care.”

That’s a staggering bill — almost $500,000 a year for home health care. Few families would have any way of paying that.

The couple initially resisted hiring professional caregivers, thinking their presence in the home would further disrupt the family.

Instead, King writes, having those aides “allowed a little normalcy back into our lives. (Ady) and I could be partners again, rather than patient and caregiver. We could relax, chat and watch TV in the evenings, instead of my going through an hourslong routine — after putting our children to sleep first — to get him ready for bed. To be candid, hiring caregivers saved our marriage.”

Which highlights the point I want to make: Taking care of a very sick loved one by yourself can be so demanding it’s difficult for folks who haven’t tried it to comprehend. A caregiver is an amateur trying to do the jobs of a whole squad of pros: nurse, mental health counselor, bookkeeper, maid, legal advocate.

Over time, caregivers can disintegrate. They’re overwhelmed, sleep-starved, grieving, anxious, angry. Their careers suffer. Their finances suffer. They become isolated. Their own health declines. They grow depressed.

Everybody on the periphery instinctively understands the sick person’s plight. Typically, nobody thinks about the caregiver. None of this is the patient’s fault, of course.

A counselor once told me that caregivers disproportionately come to abuse drugs or alcohol, have extramarital affairs or simply climb into their cars and drive away, never to be heard from again.

They also die early in high numbers.

And caregiving a sick loved one is surprisingly common.

According to a 2020 report by AARP and the National Alliance for Caregiving, 21.3% of U.S. adults — 53 million people — had provided care to an adult or child with special needs at some time in the previous 12 months. The report is issued in five-year intervals, and those numbers were up substantially from 2015, possibly as a function of so many baby boomers aging.

I served as the primary caregiver for five years to my first wife, Renee, as she battled cancer. Unlike most cancer patients, she needed around-the-clock attention nearly the whole time she was sick.

Family members pitched in, including our teenage son. (Nationally, about 4 in 10 caregivers are male.) So did friends. Because Renee was under a terminal diagnosis, we got extended help from hospice, which was a godsend.

But mainly it was just Renee and me, in our den, staring at each other day after day, facing one crisis after another. Week after week, month after month, with no good news in sight.

Among the lessons I learned was that a serious, long-term disease becomes a disease of the whole household. One person occupies the sickbed, but everyone involved gets ill.

Please, then, allow me a few words of hard-won advice.

To caregivers:

You’re not a superhero. Everybody, including you, has a breaking point. Sooner or later, caregiving will find that point. Before that happens, learn to take care of yourself first. No matter how much you love the person you’re nursing, if you’re not healthy, you won’t be of much use.

Accept all the help that’s available — tell people what you need. Insist on getting sleep at night and respite during the day. Take walks. Take naps. Listen to podcasts. Work crossword puzzles. Whatever distracts your mind and refreshes your body.

Give yourself grace. You can eat yourself alive with woulda-coulda-shouldas. Don’t. Just do the best you can. When you’ve done your best, that’s all you can do.

Get counseling. Now.

To those who interact with caregivers (clergy, relatives, friends):

Never, never, never — never ever — judge the caregiver. Unless you’ve been there, you have no idea how you’d perform in their shoes. You think you know, but you don’t. Maybe if you judge too harshly, the universe will give you the opportunity to find out.

Do something useful. The humblest help accomplishes the most. Go to the caregiver’s house and clean the toilets. Sit with the sick person a few hours so the caregiver can go to a movie. Mow the lawn.

Listen. Caregivers need to vent. No matter what irrational, mean, ragged, self-pitying thing the caregiver tells you — don’t judge. And unless he’s threatening suicide or murder, don’t tell anybody else what was said. Safe venting mends wounded hearts.

Be an encourager. Caregivers are tormented by the sense that they’re failing, partly because they can’t “fix” their sick loved one. When I was caregiving, the most helpful people of all were those who just patted me on the shoulder and said, “You’re doing a great job. Keep going, brother.”

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