The woman’s husband suffered from Lou Gehrig’s disease. She was caring for him seven days a week and confided that she couldn’t spare the money for in-home help.
Wendy Lustbader persuaded her that a few hours of respite was feasible with an aide. Next, to assuage her guilt, Lustbader, in her role as a social worker in Seattle, talked with the woman’s husband. “This is a chance for you to give your wife the gift of a few hours of rest,” she said. “Kick her out.” He nodded in agreement.
But how to spend those hours? “You forget what it is to have a life,” the woman said. Then she recalled being part of a walking club and, with some urging, found the members still met at the donut shop. And, if it was raining, they sat inside and chatted. A month later the woman looked like a new person. “I remembered what it was to be alive,” she told Lustbader. The ailing husband, in a position with virtually nothing to offer, also benefited from this chance to give a gift to the woman he loved.
“Take care of yourself so you can take care of the person who is ill” is Lustbader's theme. She recommends the concept of the Sabbath—one day of the week that’s different from the rest. She asks caregivers to write five things they would love to do that day that don’t cost money. “I’d love to take a long, hot bath; just soak,” one stated. “I’d go the attic and read some trashy novel,” another declared. “I’d like to make a phone call without him listening in on the extension,” a woman noted.
Lustbader strongly recommends that caregivers join a support group. They’ll learn there that guilt is part of practically every caregiver’s burden. It ranges from entrusting the care of a loved one to a stranger to the unspoken feelings of hostility toward family members who won’t help. Also, resentment crops up. “Resentment is poison,” Lustbader said. “It can be a line that cuts across your stomach. When that happens, you know you’re doing too much.”
The antidote often consists of the courage of telling the ill person the truth. In a support group, a caregiver learns that almost anyone can reach a breaking point, as in the case of the matron who arose in one session and declared, “I hit my husband.” And a real life saver is a sense of humor.
When Lustbader’s grandfather was in the late stages of Alzheimer’s, he stopped shaving and bathing, and refused his wife’s offers of help. So a visiting aide was hired. When the attractive young woman arrived, he smiled and a gleam appeared in his eye as the pair headed into the bathroom. Later, he could be heard singing. When he emerged, he was clean-shaven and fairly glowing, much to his wife’s discomfiture. “She never could find out what went on in there,” Lustbader recalled.
She finds that the nursing home is not the main fear of those who are ailing. It is the fear of abandonment. When the move occurs, it often improves relationships between caregivers and their loved ones because visits to the nursing home focus on talk that means something. At home, the toll of nursing, cleaning and household operation short-circuits dialogue that counts.
Lustbader is the author of Counting on Kindness: The Dilemmas of Dependency, published by The Free Press, and the coauthor with Nancy Hooyman of Taking Care of Aging Family Members by the same publisher.
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