Close-ups

A Patient's Perspective

A Fall in the Dark

When my wife was felled by a stroke six years ago, my life, too, was struck down. Overnight, my active, capable spouse became a paralyzed, speech-impaired invalid, and I, a bookworm and scholar, became nurse and purveyor of a ramshackle household. I could write volumes about what life has been like in these past years. But here I'll just tell one story from our daily struggle as we together have tried to cope with a body that no longer works.

Our last home aide leaves at nine o'clock at night, after helping put my wife to bed. Then it's up to me to get my wife to the commode. Though we try to get by using diapers, once in a while I still do have to get her out of bed. We are both well over 80 and don't have much strength. That explains why, not long ago, as I was lifting her, she slipped from my arms to the floor. What could we do? We began our tussle with gravity, to no avail-I couldn't budge my wife, no matter whether I kneeled, squatted, or bent over her, grabbing her under her arms as I tried to drag her someplace where I could get better support. We finally gave up, looking at each other, not knowing whether to laugh or cry. Then suddenly, I heard a voice, the words of a true friend, a retired nurse who, with her husband, has stayed loyal to us: "You can call us any time, day or night, if you need help." It was four o'clock in the morning. It was cold outside, and dark. Our friends lived in the neighboring town. Still, I dialed the number. On the other end of the line, a trusty voice answered. "We'll be right over." Sure enough, my friends arrived and lifted my wife back into bed. We were saved.-E.S., 83

commentary

For a powerful read on the impact of caring for an aging, ailing relative at home, see Jerald Winakur's "What Are We Going To Do With Dad?"1 Despite the emotional and physical costs, home-based care is preferable to a care facility for many families. In one study assessing the impact on the caregiver of placing a relative in a long-term care facility, depression and anxiety were as high in caregivers after transfer as when the relative lived in the home.2 The death of an ill spouse, studies show, is better tolerated than any form of long-term care.3

Caroline Wellbery, M.D.

REFERENCES

1. Winakur J. What are we going to do with Dad? Health Affairs, 2005;24:1064-72. Accessed May 31, 2006, at: http://content.healthaffairs.org/cgi/content/full/24/4/1064.

2. Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S. Long-term care placement of dementia patients and caregiver health and well-being. JAMA 2004;292:961-7.

3. Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003;349:1936-42.

resources

Well Spouse Association
Web site: http://www.wellspouse.org
Support for families of persons with chronic illness, information about caregiver needs, quarterly newsletter, chat rooms, bulletin boards, assistance for new groups

National Family Caregivers Association
Web site: http://www.thefamilycaregiver.org
Support and information for family caregivers, referrals, quarterly newsletter, other resources

ElderCare Online
Web site: http://www.ec-online.net
Support for caregivers, biweekly newsletter with articles and self-care tips, chat rooms, message boards, free book, software for medical planners and taxes

The editors of AFP welcome submissions for Close-ups. Guidelines for contributing to this new feature can be found in the Authors' Guide at http://www.aafp.org/afp/authors. Submit patient scenarios via e-mail to afpjournal@georgetown.edu with the heading: Close-ups submission [your last name].

Submissions must include a patient story, commentary, patient photograph, resources, signed patient release form, author statement form, and conflict of interest form. Photographs must meet minimum quality standards (see Authors' Guide for more information).

Close-ups is coordinated by Caroline Wellbery, M.D., associate deputy editor, with assistance from Amy Crawford-Faucher, M.D., Tony Miksanek, M.D., and Jo-Marie Reilly, M.D. Questions about this department may be sent to Dr. Wellbery at wellberc@georgetown.edu.