The Invisible Crowd of Caregivers

| 6/2/2010 1:12:23 PM

park bench

We live in a tell-all society, where people post their deepest thoughts online and political gossip is raised to an art form, while he-said, she-said scandals fill the evening news. Yet there are still some things that we simply do not talk about, burdens that we are expected to bear in solitary, stoic silence. Caregiving is one of those things.

In a quietly beautiful personal reminiscence, Jonathan Rauch of The Atlantic describes caring for his aging father, who had a neurological disorder and required more and more attention from his son. Rauch didn’t want to commit his father to a nursing home against his wishes, but he struggled to deal with the demands of his new full-time role without a support network.  When he finally begins to simply talk about his worries with people he meets, he is blown away—as was I—by the stories of love, anxiety, and loneliness that he gets back:

Above all, I got stories.  Some were in the past tense, but a surprising number were in the present, and they gushed forth with the same kind of pent-up pressure that I felt. Washington is a city of middle-aged careerists like me, proper and dignified and all business. Yet time and again the professional exteriors would crack open to reveal bewildering ordeals.

A lobbyist. At a reception hosted by a trade group, he asks what I am working on, and I reply “Taking care of my father.” Without missing a beat, he tells me of having spent that morning in tears, sobbing in a meeting with the staff at the care facility where his 100-year-old father now lives.

A scholar. He is working on a book about interest groups and we go out for coffee to discuss it. He asks how I am. When I tell him, our original agenda melts away and he tells me that his life’s work, now, is flying back and forth to remote Wisconsin, where he takes care of a father with Alzheimer’s. . . .

As I walked the streets, did interviews, conducted business, I took to wondering which of the middle-aged people I encountered were quietly struggling to cope with their own crisis. How many of them felt utterly out of their depth? . . . According to the National Alliance for Caregiving, about 50 million Americans are providing some care for an adult family member. I was swimming in an invisible crowd of caregivers each day.

Source: The Atlantic

Image by DeaPeaJay, licensed under Creative Commons.

6/11/2010 6:57:20 PM

Caregivers are invisible. They are the person who accompanies the patient. They are the ones who visit the resident. They are the ones tending to needs, not having needs themselves. Yet caregiving is a highly stressful, multifacted job requiring long hours, wide-ranging knowledge, and the willingness and ability to take over running the life of another person. Caregivers have many needs for support, information, help and solace. It is a painful task. Fortunately Gail Sheehy and others are beginning to talk about caregivers and their needs. My husband, sister and I blog about caring for our elderly parents at Inside Aging Parent Care Our focus is largely on the emotional experience of caregiving and how we are striving to be compassionate caregivers while staying sane and healthy ourselves. We'd love to have you visit us.

Sabah Farooq
6/8/2010 8:48:23 AM

Solitary, stoic silence, how true. Thanks for this article! I am one of those 50 million, one of five children. Recently my younger sister sent me a copy of Gail Sheehy's 'Passages in Caregiving' almost unfairly-five years after this journey started, but I guess Gail Sheehy needed to be ready as well. Gradually I see a silence melting, and so happy to be able to access the help that I need. It's better and bigger than 5 years ago.

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