Caring Currents

The Least Productive Emotion for Dementia Caregivers

Last updated: Jan 08, 2009

Memory Lessons Cover

Hard -- sometimes tortuous -- decisions rain down on those who care for a family member. You're presented with the facts, and the options. And then, you must choose what to do.

I can see still the round, kindly face of Dr. Sunga, my mother's internist, as he sat opposite my sister and me in the guest lounge at the hospital, just a few yards from Mom's room. Our earlier numerous conversations with him had taken place standing, often bent over charts.  Now she was being transferred to home hospice, and we were spent. "Guilt is natural and should be expected," he told us. And then he paused and looked straight into my eyes. "You have nothing to feel guilty about."

I wonder if he knew how those simple words of reassurance would buoy me like a life vest for months after my mother died. He was right, and I knew he was right. But it was really powerful to hear someone in a white jacket say it to me.

I thought of good old Dr. Sunga reading the just-published book Memory Lessons, by Texas geriatrician and internist Jerald Winakur. It's a wonderful and unique perspective on caregiving by a doctor-son, who looked after his father through disability and severe dementia.

After a long decline, his father finally died at 89, probably of hypothermia, when he wandered out of the house one morning. His mother blamed herself for leaving a key out. Dr. Winakur wondered if it had anything to do with the risperidone, an antipsychotic medication, he had treated him with the night before to manage a bout of extreme agitation.

Sidenote: Risperidone is not approved for dementia, Winakur notes, although it's widely used in this way. In an interesting coincidence, this week the U.S. Alzheimer's Disease Education and Referral Center released its latest Progress Report on Alzheimer's Disease. The section on Caregiver Support highlights the need for more testing on the use of risperidone to treat agitation – it's effective but has more side effects than using antidepressants --  and on finding better drug options for this problem.

But back to guilt. Every caregiver, especially those caring for people with dementia, needs to know what Winakur writes:

"When the time came, I made the decisions. And still there is guilt. If I have it, chances are you do, too. You are there alone in the house with your debilitated or demented loved one. You have flown in from across the continent and are now at the bedside of your father or mother in a hospital ICU, wondering what to do next…You pace the halls of a nursing home…You feel guilty and powerless and abandoned and angry and bereft. You have decisions to make and no one to guide you…You are afraid that you will make a mistake, decide the wrong thing, choose the wrong path."

"But bearing this guilt will not ease any suffering, will not bring your loved one back, will not help you heal, and will not prepare you for the next ordeal which is coming. Devote what energies you can muster to being kinder, more understanding, more loving to those who are still on this earth and to whom you are responsible. And save some for yourself, because you will need it."

He's right. And you know he's right. Whether you're at the point of making life-or-death decisions or grappling with one of a thousand other guilt-producers caregivers face (home or nursing home? which medications? did I speak too sharply?) it's white-coat advice worth hearing again and hanging onto.