Nov 23 2011
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Caregiving: A Transformative Experience Like No Other

By Jennie Chin Hansen, RN, MSN, Chief Executive Officer, American Geriatrics Society

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As societies around the world grapple with aging populations, the challenges to caregiving have garnered considerable attention. Already an under-supported group in so many countries, today’s caregivers face an array of new pressures that strain the vital services they provide to older adults. Around the world, unsung heroes assume caregiver roles without question, without hesitation, and without recognition. It is often said that caregiving is the backbone of our global long-term care system.

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While caring for an older adult can be one of the most rewarding experiences of a lifetime, it can also be stressful and frustrating. This is especially likely if the older adult has dementia or needs around-the-clock complex care. In fact, most family caregivers are spouses or children. They may have age-related health problems of their own; or they may have small children to care for, or work outside the home, or all of these.

In 1984, my father suffered a second debilitating stroke that left him unable to continue caring for my mother. Widowed and raising a 7-year-old, I decided to move my parents across the country to San Francisco where I was living and where I happened to work at On Lok Senior Health Services, which became the prototype for the now recognized PACE program, caring for elders who want to remain in the community despite their frailty.

I first brought my mother out with me, and she lived with me for a few months. When I went to see my father in Boston, I noticed that my father actually had greater capacity than many of the physicians at the nursing home thought he did. I didn’t agree with their treatment and decided we were going to bring him to San Francisco. So I discharged him “against medical advice” – there’s a term for that, called AMA.

My father had a feeding tube, which I removed before we got on the plane. When meals were distributed to all of the passengers, I took a meal for myself, and one for my father. I asked him, “Do you want to try this?” When he nodded “yes,” I cut it up, and he actually ate solid food for the first time in probably seven months. That night, when I helped my father and my mother into my bed, they slept together for the first time in seven months. I honestly felt that if either of them had died the next day, it would have been all right because I was finally able to bring them together again.

I know that the American Geriatrics Society and the Robert Wood Johnson Foundation can work together to increase the visibility and valuation of caregivers within the entire health care community – among policymakers, regulators, health care organizations, hospitals and health systems, employers and consumer groups. Caregiving touches all of us as members of families and as friends and neighbors. The focus is appropriately on those whom we care for, wanting the best for them, which includes their physical needs. But we also know we need to help ourselves to enable us to maintain their dignity. And in the course of that effort we hope to maintain our own dignity and capacity as the caregiver.

The caregiving of others spans the ecosystem of societal interdependency—the consideration of others during various stages of their lives and the fact that we need to realize that caregivers, too, have needs that are physical, emotional, and economic. For a number of us, the intimacy and depth of caring for those who once cared for us brings a transformative experience like no other. As a daughter, I am grateful for the role I was able to play during a vulnerable time in my parents’ lives. That gratification only propels me to continue in this vital work of caring for our elders and melding that commitment with an informed role of advocacy, research and policy. Still, that work faces a long road ahead. We need many more informed hearts and minds.

Let us share our knowledge and experience in a way that results in meaningful improvements in the care of older adults, who often need to manage complex health and day-to-day issues in their lives. My experience with my parents demonstrates that there are many ways in which elders can age in place, as long as they have the support of their families and services available and in place that are affordable—and that, of course, is not something we can take for granted. For others there may be the needed alternative of long-term care and assisted-living facilities, which merit an excellence we all would want, should that be our best alternative.

Let us give thanks during this holiday season that we have the opportunity to contribute further to this important societal mission – the dignity of all who need a hand of care and support.

Tags: Health & Health Care Policy, Caregiving, Voices from the Field