In her book Passages in Caregiving, Gail Sheehy profiles the Colberts, a family of seven siblings devoted to caring for their aging mother. As their story shows, when it comes to caregiving, it sometimes takes a few tries to find the best solution.
“Harriet, the oldest sister—unmarried, with no children—assumed the whole burden of care for their mother the year after she’d been widowed,” says Sheehy. “But she neglected to recognize that she was also working 50 to 60 hours a week.” Unfortunately, all the siblings were putting in the same kind of work hours. So she fell into what Sheehy calls “playing God”—shorthand for a caregiver making herself indispensable to the loved one and thinking that she alone can ‘save’ that person. “After a year and a half, she got sick—but the mother was failing, too. She stopped eating and wouldn’t get out of bed.”
Harriet had to take her mother to the hospital, where she was diagnosed with ‘failure to thrive’—“really the worst diagnosis to get,” notes Sheehy, “because they [the medical establishment] give up on you when you’re that way.” Once their mother was discharged, Harriet’s sister Lisa joined in the caringiving, but the strain started to tell on her, too. “She began to fall apart and neglect her children,” says Sheehy. “So they let everyone know via email that they were going to have to put mom into a nursing home.”
That galvanized the family into action. “It got the attention of the brother, Louis, who was a professional social worker in charge of an aging agency, but who had never thought of himself as being a caregiver,” says Sheehy, as well as the other brothers and sisters.
They held a family meeting and systematically asked each person: What can you contribute? “The one who’s out of work can’t contribute money but has a little more time,” says Sheehy. “The one who has a little more money can throw a little more into the pot. What I thought was a great idea was that they all decided that if they gave up potato chips they could each put $20 a week into the pot and hire a neighbor to cover the holes [in the caregiving schedule] when none of them was available.”
For Sheehy, what happened to the Colberts is “a perfect example of how the primary caregiver has to get the concept that you alone are not marked for this role. Other members of the family need to be involved, and you need to know that you can and should ask them.” From a situation where one overtaxed sister was “playing God, with mom falling into depression and ‘failure to thrive,’” Sheehy says, the family moved to a solution where responsibilities are more equally shared. “Everybody is much closer, and much happier,” she says, “including the mother, who came back completely.”
Wish I’d had this knowledge and inspirational material available during the thirty some odd years I was sole caregiver for my husband, who was diagnosed with MS when he was thirty something.
During the first year after the diagnosis, he was impossible… As we gathered information on MS–of which neither of us had ever known–he was impossibly reluctant even to let our own children know what the doctors had said.
He stubbornly believed his doom was eminent, and that I should devote full time, energy, and concentration on making life livable for HIM. However, eventually, he would insist that I take a break now and then, to keep my sanity. He did not want anyone else to come care for him–just insisted he could go it alone (but I felt it necessary at least to let someone closeby know).
Anyway, with love and by golly, we did make it through the years.
But now that I’m a disgustingly healthy 86 year older mother of some very loving and dedicated children and grandchildren, I want to make sure my caregivers aren’t “put through the wringer.” I’m planning to buy Gail Sheehy’s “Passages in Caregiving” and passing it around.
Thank you so very much.
Lee Barker
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