Caregiving and the End of Life, Part 1

“We all need to heed the warning we get from stewardesses on a plane: In the event of an emergency, oxygen masks will drop from the ceiling — put yours on first.” That’s the metaphorical advice of Suzanne Mintz, president and co-founder of the National Family Caregivers Association.

“You can’t help someone if you are gasping for air,” Mintz said, continuing the image and encapsulating the wisdom of professional and amateur caregivers across the country.

This advice is especially true for someone caring for a loved one with a terminal illness, a situation that has become increasingly common in recent years.

A Recent Phenomenon
A dramatic demographic shift in the past century has resulted in the growth of “caregiving” as a social phenomenon. William M. Lamers, M.D., whose Hospice of Marin was, in 1974, only the second such caregiving institution in the country, explains this phenomenon. “In and around 1900, most deaths occurred in children under the age of 15,” he said. “By 1970, two-thirds of recorded deaths were among people over 75.” People now not only live longer, but also take longer to die. The country’s healthcare system — in fact all its institutions — have failed to keep pace with the change.

As a result, there are an estimated 25 million family caregivers in America, according to “The Economic Value of Informal Caregiving” published in the March 1999 edition of Health Affairs, the journal of Project HOPE, a nonprofit organization dedicated to promoting health around the world.

As many as 75 percent of caregivers are “going it alone,” according to “Caregiving Across the Life Cycle,” a 1998 joint study of the National Family Caregivers Association and Fortis Long-Term Care. Of “intense” family caregivers (those providing at least 21 hours of care a week), 61 percent have suffered from depression, according to the same study.

When the End Is in Sight

Statistics do not distinguish between those caregivers providing long-term care and those caring for the terminally ill. There are similarities between the needs of the two groups, and important differences as well.

“In the case of the terminally ill person, there is a clear end in sight and a single, clear purpose — make the person comfortable,” said Lisa Giannasi Foster, an independent consultant in clinical social work and systems and social policy development. A “terminally ill” diagnosis means that, in all probability, the patient has less than six months to live.

The idea of “an end in sight” is a mixed blessing for caregivers, however, Foster says. Unlike long-term care, where the open-ended relentlessness and physical demands can lead to burnout and depression, care at the end of life has a kind of clarity and redemptive value.

“It is very possible for most people to be heroic in the short-term,” she said. “The psychological toll comes in having to make the adjustment up front that you are walking down the last hallway with a loved one.”

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