Taking Care of the Caretakers

March 21st, 2012 by Stacey D'Erasmo

Why taking personal time is critical for those providing care to loved ones.

Brought to you by Liberty Mutual's
The Responsibility Project

Three women sit in the steam room of a hushed downtown spa on a chilly, rainy afternoon. They have all just come from their massages. One is in her twenties, another is 50 and the third is in her sixties. The steam is scented with lavender and eucalyptus; at odd intervals it gushes out from the vent in a cloud of warmth and moisture. They don’t say all that much to one another, in the way of people who know one another well, which they do. Or we do, I should say: the young woman is the daughter-in-law of the oldest woman; the 50-year-old is me, a friend to both. The steam opens our pores, makes our faces glow. “I could sit here all day,” says the oldest of us.

“Right?” agrees the youngest. “This is amazing.”

We lean back into the vibe, feeling pearly and taller. Time, for the moment, dissolves in the cloud of sweet-smelling mist. As delightfully sybaritic, and at the same time ordinary, as this scene is, however, there is an element that, just for now, the three of us have silently agreed not to discuss. That element is the reason we’re here: The husband of the youngest, son to the oldest, friend to me, has a vicious cancer. It has ransacked his body, the family’s economy and the minds, hearts and well-being of the people closest to him. It’s a good family, one of the best I’ve ever known, but their resources have been pushed to the breaking point. I can’t cure this man’s cancer, pay the medical bills or predict the future. But I can help take care of the caretakers by arranging afternoons like this one, where, for a few hours, the howling winds of crisis are a bit less audible. It’s not much, I think.

Or is it? The clinical name for what I was trying to stave off is “caregiver burnout.” It affects not only the devoted family members of someone who is ill, but also those in the helping professions, like medical and social workers, people who work suicide hotlines, even teachers. If you browse the internet for that phrase, you will find a wealth of practical advice. For instance, symptoms of caregiver burnout include depression, insomnia, exhaustion, withdrawal, a loss of appetite and a greater reliance on stimulants and alcohol. The suggestions for preventing burning out are sensible and kind: get enough exercise, don’t subject yourself to unreasonable expectations (you can’t cure your loved one’s Parkinson’s, cancer or AIDS), eat well, find outlets for your many emotions. The point of these interventions is to produce a more stable environment for the person who is ill. Ruth Drew, the director of the Alzheimer’s Association Family and Information Services, knows the terrain well, both professionally and as someone with a family member who had the disease. When caregivers burn out, she says, “They are less capable of caring well for the person with Alzheimer's or for themselves. This can also put the person they are caring for at risk.” With a disease such as Alzheimer’s, which continues at increasing intensity for years, caregiver burnout can be devastating for everyone.

True enough. And yet, these helpful, bullet-pointed lists overlook a few more slippery dilemmas. For one thing, caregivers are often so overwhelmed by obligations, anxiety and guilt that they can’t get to, say, that pick-up basketball game they love. Taking care of oneself can just seem like one more thing to add to the endless to-do list. The crisis presses, a war, and they don’t want to stand down until the war is over. Moreover, Drew notes, “in many cases the caregiver is older and has his or her own frailties.”

But there is another, more subtle aspect to the desire to prevent “caregiver burnout” that occurs to me as the three of us talk about nothing much in the steam room. I knew that I wanted to offer my friends the gift of touch, of warmth, of sweet smells, and an atmosphere of lightness. Serious illness is nothing if not ruthlessly practical, and it can be easy to forget that we also live in a generous world of the senses. I thought they must be tired, and the war they’re fighting has no end in sight. One afternoon of rest and relaxation might give them some respite. But if I was being honest, I thought, looking at the steam on the walls – and being naked and parboiled does nudge one toward honesty – it may be that this health crisis in a friend had produced in me a kind of rage against the dying of the light, a wish to assert the fleshy, ordinary, generous side of existence. In Just Kids, Patti Smith’s memoir of her long, intense friendship with the photographer Robert Mapplethorpe, Smith writes, “Robert was diagnosed with AIDS at the same time I found I was carrying my second child.” It’s a curious sentence, and it isn’t exactly true: In fact, Smith found out she was pregnant around the same time that Mapplethorpe was admitted to the hospital with AIDS-related pneumonia. Both the disease and the diagnosis pre-dated Smith’s pregnancy.

But the emotion rings true. Mortality and the will to live co-exist with equal ferocity, and we assert the latter in the face of the former. Smith devoted herself to Mapplethorpe during his illness, but even when he was on his deathbed, she was thinking, “He is still alive.” The sweetness, the girlyness, and the gentleness of this Manhattan spa were my misty, warm, lavender-scented weapons not only against the shadow of mortality falling across this family, but also, by implication, across me as well. The much-used word “burnout” is, perhaps, right on-target: Burnout suggests extinction, the light going out, being consumed. In the same way that my friend’s wife and mother were fighting to keep him from the abyss, I was fighting to keep them from the abyss, to keep them from being consumed, extinguished. My arranging our pleasurable afternoon, a small gesture during a large crisis, was at once an impulse of altruism and selfishness: I wanted to keep their light around me.

And for “caregiver,” one might also use the word “human,” since all of us, at one point or another, will either need a high level of care, be contributing a high level of care, or be near those contributing a high level of care. Difficult illnesses and emotional situations are more the norm than the exception; we are fragile creatures. We need company. When the three of us left the spa that day – three ladies pinkened from the heat, laughing, overtipping, talking about where to go for dinner – we probably looked pampered and urban, carefree. You couldn’t tell from looking at us that we had just pushed the darkness back an inch or two, that together we had kept the flame from burning out, nor that they had done me at least as much good as I had done them. We were all, I thought, still alive. We pledged to do it again soon as we went out into the night.

Stacey D'Erasmo is the author of the novels Tea, A Seahorse Year, and The Sky Below. She teaches writing at Columbia University.