Being There, and Far Away

From The New York Times' "The New Old Age" blog

When my parents were in their 50s — the age I am now — my father told me not to do for them what they had done for their parents: become their caregiver when they were old.

Years of responding to the needs of four elderly parents had taken a toll, especially on my mother. To protect me from a similar fate, my father told me that if the time came that he and my mother could no longer live alone, I should find a retirement community or nursing home for them far enough away to keep family visits to a minimum. Caring for an aging parent, my father insisted, is a duty best discharged from afar.

What my father didn’t understand is that whether one lives next door or across the country, the responsibility for elderly parents never goes away. Caring from afar is no easier than being there. It is simply different. On-site hands-on caregivers are like day laborers who do the actual physical work. Distant caregivers are like off-site managers who coordinate services and delegate responsibilities. Both have their roles and points of high stress.

At least, that’s what I tell myself. And if it weren’t for the guilt I feel, it would be true.

My father was spared what he regarded as the indignities of old age when he died suddenly from an aneurysm, five days shy of his 77th birthday. My mother, two years younger and destined to live six years longer, was not one of those women who enjoyed widowhood. She had emphysema, osteoporosis and a condition psychiatrists call “complicated bereavement,” a prolonged depression following the loss of a loved one. She was also geographically isolated in a small town in Kansas, five and a half hours by car from Denver, where my older brother lived. From Los Angeles, where I lived with my husband and two young children, it was two and half hours by plane, followed by six hours in a car.

When elderly parents live nearby, women do most of the caregiving, according to the Family Caregiver Alliance. But when generations are dispersed — as they are for a third of today’s caregivers — the geographically closest family member often bears the brunt of eldercare duties. Under those circumstances, men are as likely as women to be involved, a study by the National Alliance for Caregiving found in 2004.

My brother made the long trek across the High Plains every month or so to check in and do what he could, sometimes more than my mother wanted. For reasons of time and also temperament — my mother’s depression and inertia made me depressed and irritable — I kept in touch by phone. Every night as soon as I got home from work, I called my mother just before she went to sleep, a ritual that annoyed my family but was important to her. More nights than I care to remember, her voice would crack as she said hello. “Oh, it’s nothing,” she would apologize, clearing her throat. “I just haven’t had occasion to use my voice yet today.”

I didn’t give up the pretense that phone calls were enough until doctors found that osteoporosis had etched hairline fractures in her spine and left splinters of bone pressing against nerves. I flew (and drove) back to Kansas more times over the next year than I had during the previous several years, but it was never as much as my mother wanted. I recalled my father’s directive about finding an assisted-living facility. Instead, I brought assisted living to my mother.

I hired two women to run errands, cook meals, tidy the house, monitor medications and generally keep my mother company. She warmed to her surrogate daughters even less than to the dog my brother had foisted on her for company. (“At least I can cuddle with it. I have to make conversation with them.”)

There’s more to the story, of course, but my dominant feeling 15 years after my mother died is guilt and regret. Her life might have been better if only I had insisted she move to Los Angeles, if only I had been a better daughter. My brother harbors his own residual guilt, not about doing too little but interfering too much, a different and equally troubling side of the long-distance care story for another day.

Guilt and regret seem to crop up in all caregiver stories, but they are themes that dominate the experiences of long-distance caregivers, experts agree. A surprising number of distant caregivers — nearly 30 percent in one study — feel so inadequate that they don’t even identify themselves as caregivers, even though they, like local caregivers, change their schedules, miss work and take leaves of absence to oversee the care of relatives.

While they may not endure the relentless pressures of local caregivers or the grueling round-the-clock schedules of hands-on caregivers, three out of four distant caregivers spend the equivalent of a full day a week managing their relatives’ finances and overseeing daily needs, including meals, doctors’ appointments and transportation, according to the National Alliance’s 2004 study. Distant caregivers visit the people they care for three to four times a month on average, at a cost of nearly $400 in travel expenses. The average travel time for those visits is seven hours each way.

For all the time they put in, studies have repeatedly shown, long-distant caregivers do not feel the same sense of satisfaction and personal accomplishment that on-site and especially hands-on caregivers feel, nor are they as likely to develop strong bonds with the people they are caring for. As one researcher put it, distant caregivers experience all the “worry and many of the hardships, but almost none of the rewards.” Which may explain why so many long-distance caregivers return to guilt and regret. We have nowhere else to go.

Spring Hills Articles and Info Home