Caregivers Share Their Stories

My column on caregiving generated a number of responses from readers who offered their own perspectives. “People not in this situation don’t have a clue, and that includes ‘experts,’ ” writes Ken Jarosch, sole caregiver for his wife, Kathy, who suffers from muscular dystrophy. “I went to several care-giving classes, where we were served a nice dinner and a sunshine talk. But the real help came from the people in attendance, who actually live this.”

I’m devoting this column to advice from people who have found ways to cope with caregiving, starting with the Jarosches. The pandemic and labor shortages have made it hard to find home care, and Ken and Kathy don’t want to be separated. Their solution: “A very good geriatric care manager who gives us emergency contacts,” says Ken. “We do the best we can, even if it’s not perfect.”

Allen Nixon was the caregiver for his wife, Eileen, who passed away of a rare disease. Nixon kept all of his wife’s information in a folder by the front door so he could grab it “if we had to run to the emergency room.” Because Eileen had lost her ability to speak and write, Nixon realized that if he had a health emergency, she wouldn’t be able to communicate with medical personnel. “So I put all of my information in an envelope and taped it to the fridge.”

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To prepare for possible caregiving responsibilities in the future, reader David Gelb recommends that families “seriously consider purchasing long-term-care insurance for themselves and their parents (if it’s not too late).” With encouragement and input from their widowed mother, Gelb and his brother made a family decision to buy long-term-care coverage for their mother when she was in her sixties. When she suffered a stroke at age 87, the insurance “was a godsend,” says Gelb. “Knowing that we had the finances covered allowed us to make well-thought-out, rational decisions.”

Tricky Topics

Other voices have weighed in on handling tricky situations, such as how to raise the subject of future needs and wishes with parents or adult children. Meredith Stoddard, vice president for life events planning at Fidelity Investments, says that when her mother was cleaning house, “she was focused on what would happen to her teacups.” Says Stoddard, “Knowing what she values makes it easier to follow her wishes. And having a conversation with a little levity makes it easier to raise other issues matter-of-factly.”

The prospect of moving is another one of those sticky issues. In a survey by SeniorLiving.org, 31% of adult children said they would expect their parents to move in with them if assistance was necessary, but only 10% of adults older than 65 preferred that option (62% would rather live at home with care services).

If moving is necessary, it’s all in how you approach it, says Suzanne Asaff Blankenship, author of How to Take Care of Old People Without Losing Your Marbles. “If we had talked to my parents-in-law about leaving Montana, they would have said no,” says Blankenship. “But if we put it in the context of what they were struggling with, which was the winter weather or having to drive so far for health care, they were more receptive.” They eventually moved closer to Blankenship in Colorado.

Postscript

Writing about eldercare has made me think that my husband and I need to share more of our personal information and wishes with our three grown children. Kids, hold us to it.