Carol and I just finished watching an episode of Wallander, a PBS mystery show originally done by the BBC. Kenneth Branagh plays a Swedish police inspector who is a brilliant detective with a mess of a personal life. In this episode, Wallander’s father, with whom Wallander had a difficult relationship, comes home from the nursing home. He had recently diagnosed Alzheimer’s and had become somewhat combative and erratic. The day after he came home he died.
The father was terrified about slowly losing his mind. Wallander was terrified about his recent divorce and being alone, having to be caregiver for his father, the possibility he might get Alzheimer’s, and finding out he was diabetic. All of this is going on while he is trying to solve some terrible murders.
Alzheimer’s should be renamed Terror Disease. It terrifies everyone who comes in contact with a victim. Most terrified are the children caregivers of a parent with the disease. They have to care for a loved one who is daily slipping away to a land where no one returns. They work, plan, get help, pray, and watch the inevitable happen.
Part of the terror is the helplessness everyone feels, but it especially falls on the caregiver. Another part of the terror is the realization that what they are seeing in their aging parent may happen to them. The future may a repeat of this terrible present with the caregiver as victim.
Bernie, Audrey’s husband and stepfather of Carol and Judi, died of Alzheimer’s. His decline was marked by two major incidents. One day he left on a drive to town. He didn’t come home. Hours later, the Myrtle Beach police called. They contacted Bernie after he ran out of gas on the highway. He told them he was on the way to Minnesota. Myrtle Beach is east across the state from Tryon where he and Audrey lived. Minnesota is where he lived before moving to Tryon, North Carolina.
The next incident was when he took his walking stick to the home health care nurse’s car outside their home. That got him a ticket to a nursing home and constant sedation. In the meantime, Audrey’s multi-infarct (mini-strokes) dementia progressed and she joined Bernie in the nursing home. At times lucid, she retained her cheerfulness and charm. At other times it was obvious her pain from osteoporosis and the dementia took her away.
After Bernie’s death, Audrey moved to Boise to be near Judi. She would tell Judi she had seen Bernie out in the hall. Judi would tell Audrey that Bernie is dead, and Audrey would grieve for him all over again. That happened several times.
That is the pain and terror of dementia that caregivers face. That there is a heritability factor just serves to amplify the terror.