Caring for caregivers

I will always remember the day my long-suffering sister-in-law, the "caregiver extraordinaire" in our family, declared with absolute clarity and a resounding sense of "uncle" that she was utterly exhausted. She had come undone.

Perhaps you know about a situation where this has happened. Someone has given the majority of hours in any given day, over months and years, to the physical care and ever-demanding needs of an aging and/or chronically ill family member. And then one day, they simply cannot do it anymore. The caregiving responsibility has swallowed them whole.

For decades my dear sister-in-law has cared for (and about) a bed-bound mother. Before that she nursed her terminally ill husband. Her life has been consumed (she would want me to use the word "enhanced") by her serial caregiving role.

She has done all this with enormous grace, never wavering in her willingness to provide the most intimate hands-on care, never faltering when called to round-the-clock expectation, balancing too many things with not enough resources — and not enough time.

"How does she do it?" someone in the family would comment as they got into their car to drive back home after their once-a-month visit.

"Anything we can do?" we would casually ask as we departed. And she'd typically respond, "No, I'm fine. Maybe this week I'll win the lottery," followed by a throaty laugh.

We all thought we were doing our part — gifts of money and regular calls and visits. In fact, the family prided itself on "having mom's care figured out so well."

And then it came undone. Just in time.

If you're not a caregiver — you will be. The exploding demographic of aging persons assures that at some point someone in your family or circle of close friends will need your caregiving attention. And it's easy to make the elder sister or the person in closest proximity to the situation the designated caregiver. They are willing — and available. And you thank them profusely and help them a lot — in the beginning.

And then you get wrapped up in your own issues and that caregiver designee is left with most of the coping and the inevitable stress that accompanies having too many balls in the air on any given day.

I don't know many families right now not involved in some form of caregiving. And usually there's a single centerpiece person doing most of the giving. Maybe my words will prompt you to step back and reassess what may be occurring in your particular family. Perhaps you will decide to hold a thoughtful family meeting and reassign roles. Maybe you'll elect to seek more respite opportunities or develop more of a team approach. Maybe you'll do all of the above.

Caregiver overload is real. Individuals experiencing caregiver strain are 63 percent more likely to die before their non-caregiving peers (Journal of the American Medical Association, 1999). Some experts say that figure is too low. Overloaded caregivers have higher risks of depression and more chronic illness ( There's more data — but you get the idea.

Please do this. Identify your family caregiver(s). And if that role involves you directly, this advice is even more life critical. Ask two questions: "What do you need?" (or "what do I need?") and "Be specific."

Wait for the answer, then take that ball and run with it.

Sharon Johnson is an associate professor in health and human sciences at Oregon State University and on the faculty of the OSU Extension. E-mail her at or call 776-7371, Ext. 210.

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