Long-Term Care Gets Personal

(Citation: Amanda S. Barusch (2012): Long-Term Care Gets Personal, Journal of GerontologicalSocial Work, 55:3, 211-217.)

Weeks after the JGSW editorial team decided to devote issue 55(3) to long-term care my family joined the ranks of Americans living our country’s long-term care nightmare.

My father, Gilbert, was diagnosed with Alzheimer’s in 2007. His primary caregiver was his second wife, Carolyn. They lived in the hills behind Santa Cruz, California. Dad was highly skeptical of the medical industrial complex, an outlook shared by his wife. With consultation from her naturopath, Carolyn implemented a program of nutritional supplements: from 25 to 50 pills and liquids ingested on a strict schedule, five times a day from morning to night. Carolyn arranged for daytime caregivers to come to the home Monday through Friday and was on her own most weekends. A male caregiver named Dan moved into the apartment downstairs. Never fond of the arrangement, Dad called him, “Dan the man.”

From time to time my brother David and I and our spouses would relieve Carolyn for a weekend or a week’s respite. We enjoyed spending time with him, but Carolyn never felt we were competent to care for Dad. Consequentially, our efforts never gave her any true respite. Eventually, Dad’s day-time caregiver, Mary Jo, agreed to take him home with her for one week a month. This arrangement worked well until Dad wandered off one night. The rescue squad found him miles down the hill, heading home.

As Dad’s abilities eroded, Carolyn took measures to limit the damage he could do. His car “went out for service” and never came back. A lock was placed on electrical outlets in his workshop so the power tools wouldn’t turn on. Burner knobs from the stove were removed and stored in a drawer. His weed-eater disappeared. I began to receive sporadic reports of misbehavior. Dad swore at Dan. He set the coffee pot on fire. He threatened to key the car of a visiting nurse. One day he picked up a two by four and chased Juan, a new daytime caregiver, off the property.

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