This year I joined the ranks of 40 million Americans who are family caregivers as I began to care for my 81-year-old father. As a physician, taking on this role has given me the chance to experience what so many of my patients and their families encounter.
As I've learned, no one is prepared to become a caregiver. It just happens.
My dad had been in good health until this past February when he had two disastrous falls, resulting in a subdural hematoma which nearly killed him. Fortunately, a neurosurgeon was able to drain out most of the blood under his skull, beginning a long, slow recovery process.
For several weeks my dad was "complete assist," meaning he required help for everything: changing position in bed, dressing, eating, and bathing. He couldn't even stand up, let alone walk.
Fortunately, this stage mostly played out in both the hospital and at an acute rehabilitation facility — so there were many hands on deck in the help department.
But as my father improved, and was transferred to lower levels of care (skilled nursing followed by assisted living), it became clear that family members would have to pick up the slack.
We've been fortunate that many of Dad's friends learned of his condition and have made genuine offers of help. The outpouring has been overwhelming enough that my family and I reflexively went into 'cocoon mode,' trying to shield my father from overexertion and fatigue so that he can focus on recovery.
Say yes to help
One thing I've learned is that when help is offered, it's important for caregivers to accept it.
"Make sure you ask for a little bit of help as soon as the crisis hits," says Katy Butler, journalist and author of the memoir Knocking on Heaven's Door, about her journey assisting her elderly mother in caregiving for her father. He'd suffered a major stroke at age 79.
"Right after a crisis, friends and family rush in and say, 'Is there anything I can do?' And you're often so overwhelmed you can't even think — but strike while the iron is hot and take advantage of it."
Caregiving for a loved one can be so overwhelming that Butler suggests looking for help in "bite-sized pieces." For example, if someone offers a meal, suggest a specific time and accept that generosity. Further, maybe it could be a recurring offer at the same time each week!
Get help managing help. In A Beginner's Guide to the End, authors BJ Miller and Shoshana Berger warn that accepting offers of help can itself be a challenging task. They suggest that you find a friend willing to help you organize your tasks — like regular health care appointments, getting groceries, or house cleaning — and assign them to other willing friends and family. And don't forget, one other task you might need a friend for is just to be there for you — to be a listening ear if you're feeling down. Asking a friend to sometimes call just to check in on you is another way to accept help. Know what to pay for
You can look for paid help in bite-sized pieces too. Hiring help isn't an all or nothing proposition.
Butler found that her father benefited from water aerobics. He looked forward to it, and it was an activity that would get him out of the house a couple of times a week. So she made it a priority to get him there. Eventually, she was able to rely on a medical van service to take him to and from the pool--which was a huge relief to both her and her mother.
Bedtime was another piece of her father's day where Butler and her mother looked for help.
"At night they would both be exhausted...and they would descend into my father's misery," she says. "I heard him whimpering and my mother would be shouting at him. It was just too much for both of them."
Thus Butler decided to outsource bedtime to an aide at $25 an hour. That's a luxury to be sure, but one that paid dividends in family harmony. Butler notes that it was more affordable because it was only a few hours per day, rather than full-time care.
Look for a program If your loved one has care needs that exceed your capacity and they can't left alone all day, an excellent and affordable option might be a PACE program: Program for All-Inclusive Care for the Elderly. These are government-funded community programs that provide transportation, daily activities, nutrition, medication and therapy all under one roof.
But PACE programs only operate in 31 states, so make sure to find out if there's one in your area.
Even if there isn't a PACE program nearby, talk with your loved one's health care team (probably a social worker or case manager) about subsidized programs for the elderly or care-dependent in your area. Many are grant-supported. You could also look for a geriatric care manager who can help coordinate and organize care and other support services. Schedule your own health care Caregiver stress is a well-known phenomenon and good one to avoid; it can lead to higher rates of anxiety and depression, and fuel a sense of burnout.
To minimize the likelihood of caregiver stress, be sure to take care of your own needs: See your own doctor or therapist, be mindful of your hobbies, be it yoga class or working out. Maintaining activities you enjoy and having me time allows for reflection and recharging.
The main takeaway is do your homework: Find out what resources exist, what you and your loved one can afford, and take as much help as you can get.
And even though caregiving is serious business, don't forget to savor the moments of joy that do come your way. When caring for her father with advanced dementia, Debbie Mefferd looked forward to the moment each day when he'd ask her if "the drinking light was lit."
She'd pour him his daily sweet and dry vermouth with a twist of lemon on the rocks and together they'd sit on the porch, enjoying the breeze. "It resembled a conversation and a little bit of normal life. And I thought it was a very good thing," she told me.
Savor those small moments. You and your loved one will be happier for it.
John Henning Schumann is an internal medicine doctor and serves as president of the University of Oklahoma's Tulsa campus. He also hosts Studio Tulsa: Medical Monday on KWGS Public Radio Tulsa. You can follow him on Twitter: @GlassHospital. Copyright 2019 NPR. To see more, visit https://www.npr.org.