In the spring of 2010, 15 years after my mother and stepfather had moved to a South Florida golf community for the good life, it became apparent that they were bankrupt and struggling. My stepfather had advanced dementia. My mother was hobbled with chronic back and knee pain. After conferring with my wife, we invited them to move into an apartment a mile from our home in Swarthmore, Pa., so that we could provide ongoing help to them for as long as they needed it.
I wasn't totally naive about the challenges of becoming a caregiver. At age 14, I had watched my mother serve as my father's caregiver during the year he was dying from brain cancer. As a clinical psychologist, I had specialized for 20 years in counseling families who were caring for chronically and seriously ill loved ones. I also had written a popular book on caregiving for aging parents. But now it was my time to walk the walk and show that I actually have the expertise I claim for myself.
Five years later, much has happened. My stepfather eventually had to be placed in a dementia unit and later died. My mother became frailer and was diagnosed with dementia herself. I've been to the emergency room with one or the other of them a dozen times for falls and changes of mental status, bleeding and suspected strokes.
Like many caregivers, I've experienced the maddening lack of communication and coordination among doctors, therapists, home health aides, pharmacists and nurses, but have also encountered many kind, helping professionals along the way who tried their utmost to provide us with guidance and comfort. Even though I pride myself on being ever-empathic with my patients, I've come up against the limits of my own kindness in my interactions with my family members. In truth, I can be curt and demanding with them at times.
Despite these lapses, I have hung in there with caregiving far longer than I thought I would or could. When I think of other caregivers I've known who've provided care for twice as long as I have with half as much strain or complaint, I can only marvel.
My mind has always been a kind of jukebox, recalling songs with lyrics that have pertinence to what I'm experiencing in the present. In honor of National Family Caregivers Month, here are some classic hits and insights that have occurred to me recently as I've tried to make sense of my caregiving years.
"Tired of Waiting for You" (the Kinks): I like being on the go, vrooming through life at a breakneck pace. But caring for an aging parent has been like abruptly going from fifth gear to second; I've suffered rapid deceleration. Whether during the 45 minutes it takes my mother to eat a meal or the hours necessary to get her out of bed, groomed and dressed in the morning, waiting for her has been a particular torment. I am prone to impatiently trying to speed her up with pressed encouragement. She resists and complains that I'm always rushing her. To prevent us from forever being at odds, I've had to consciously slow myself down, taking deep breaths and paying closer attention to the moments we're together. I'm aware that I have to savor these moments when my mother and I are both calm and reasonably content because there's no guarantee she'll be here tomorrow.
"You Can't Always Get What You Want" (the Rolling Stones): The best-laid plans go awry. As much as I strategize about getting my mother in and out of her doctor's office as quickly as possible, I have no control over the flow of his appointments that day. For all the environmental safeguards I've put in place, I can't prevent my mother from occasionally falling. Effective caregiving, I've learned, is about living the lessons of the Serenity Prayer and flexibly responding on the fly to any and all problems that arise. Mick Jagger was right when he sang that, if you can't get what you want, then "you get what you need" — not the timely, efficient, perfect provision of care, but muddling-along, doing-the-best-we-can-under-the-circumstances, still-loving care.
"Takin' Care of Business" (Bachman-Turner Overdrive): Most caregivers establish rote routines of washing clothes, doling pills and scheduling appointments that efficiently keep them on track each day. This is the workman-like "taking care of business, every day, every way" that Randy Bachman sang about. But when caregiving becomes a matter of checking the boxes on automatic pilot, it raises the risk that ailing loved ones are viewed as simply sources of chores. I've learned that it is easy to fall into robotic caregiving — doggedly and unthinkingly doing what needs to be done — and to thereby lose the emotional connection with my mother. Taking care of business should never trump being present and attuned.
"Running on Empty" (Jackson Browne): I've counseled family caregivers for years about the importance of replenishing themselves through eating and sleeping well, maintaining important relationships and just relaxing at times. Otherwise, depletion and demoralization set in. For me, though, this has certainly been a case of "do as I say, not as I do." It has been too easy for me to justify taking care of one more task for my mother and to forego my own needs. I've come to realize that this stems directly from my sense of guilt: How can I run off to have fun if my mother is stuck in her apartment, sometimes alone and lonely? But a life without any fun makes me a cranky caregiver. When I play basketball or see a movie, nap or read, I put energy back in my tank and then have more to give.
"With a Little Help From My Friends" (the Beatles): I mean the word "friends" in the broadest sense — old chums, new acquaintances and close family members, but also caring neighbors, reliable aides and trusted health care professionals. Caregivers need many helping hands providing many kinds of help. In truth, I'll take any assistance I can get for my mother, from driving her to appointments to picking up groceries for her. About this, I have little guilt because I'm juggling way too much most of the time. I'm delighted whenever I can hand a few balls off. I've also learned that it doesn't work to wait for others to volunteer to help. Even the most well-intentioned friends are wrapped up in their own lives. When I make specific asks to particular people, those true friends usually step up.
"Try a Little Tenderness" (Otis Redding): I often tell caregivers that there is a difference between loving the person you're caring for and loving caregiving. The latter entails many unpleasant tasks, including helping with toileting and abundant laundry and forever going on one more pharmacy run. As a caregiver often encumbered with these kinds of tasks, I can get testy. My mother can, too. It's hard for her to be on the receiving end of care and to feel diminished.
Because we're partners in this together, my mother and I, we need to be good to one another by drawing on the positive feelings that are there in our relationship, including love, appreciation and respect. Or, in the words of the great singer Otis Redding, we need to speak and act with one another with tenderness.
Barry J. Jacobs, a clinical psychologist and family therapist, is a member of the AARP Caregiving Advisory Panel.
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