BACK TO CALS CORNER
HOME
MGM
© ALS Independence 2003-10
July 1, 2009
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.
“The true danger is when Liberty is nibbled away, for expedients” Edmund Burke
BACK TO CALS CORNER
HOME
MGM
© ALS Independence 2003-10