This article first appeared in the St. Louis Beacon, Sept. 3, 2012 - Cynthia Wilson was about to leave journalism and begin a career as a financial analyst when duty changed her plans. Health problems, including diabetes and blindness, were making it difficult for her mother to continue living alone in Brooklyn, N.Y. Wilson, now in her 40s, made the choice more than a decade ago to take in and care for her mom. She gave up the idea of becoming a number cruncher, but she did continue to work as a writer and editor. She also found time to get married and give birth to a son.
She has turned her experiences into a book, “Who Will Take Care of Mom?” It offers guidance to others confronted with the challenges of finding appropriate care for aging parents.
The living arrangement has worked well for Wilson and her mother in spite of bumps in the beginning. Wilson laughs now as she remembers feeling so much stress during the initial months that she ended up seeing a psychiatrist. What eventually helped to strengthen her resolve was the fact that her mother’s health began to improve, partly as a result of changes in diet. With Wilson shopping and doing most of the cooking, her mother learned the value of making good choices about what she ate. She encouraged her mother to replace sugar with artificial sweeteners, for example, and offered low-carb meals that can help control diabetes.
The change in diet also reinforced the value of teaching health literacy to the elderly. When her mother lived alone in Brooklyn, Wilson says, a nurse visited the home weekly to monitor her mother’s diabetes. But she says the nurse apparently didn’t explain which foods were bad for diabetics or didn’t explain in ways that her mother understood.
Wilson says she is practicing family-managed care, so named because it requires family members to come together and work out an alternative to institutional care for aging parents. While Wilson has taken responsibility for managing her mother’s home care, she gets encouragement from other family members and help each morning and afternoon from a home-care attendant.
“That’s one thing that makes family-managed care or family-coordinated care possible,” she says. While this care might require more work on the part of one or more relatives, Wilson says it offers the advantage of preserving family assets, such as property and savings, which the elderly or disabled might have to give up if they choose nursing home through Medicaid. In addition, she says caring for parents in the home eases worries about them being inadequately cared for in a nursing home.
But is family-managed care realistic for aging parents whose adult children might have children themselves or demanding careers? Wilson concedes that nursing homes will remain the choice for some people, but she thinks family-managed care is a good option for many even if it requires a lot of work.
“I’ve been doing it for 13 years,” she says, adding that a lot of others have, too. She points to reports showing that 65 million people devote roughly 20 hours a week to care for a chronically ill or disabled elderly relative.
Family-managed care is the right option, she says, if family members share common views about how best to meet the health needs of the parent.
“Family-managed care means that you support the person who is coordinating the care or doing the care. It works if someone in the family stands up and takes control. Often, someone is willing to do it, and others might be willing to let them do it.”
Although Wilson is partial to the family-managed model, her book also offers readers information on other types of care for the elderly. These range from adult day care, costing an average of $61 a day, to assisted living, costing an average of $3,300 a month, according to the book.
Parents unable to live alone used to move in with an adult child. That changed, Wilson noted, after more women began to work outside the home, either by choice or out of necessity. That trend led families to outsource care of parents to nursing homes and other facilities. Now, she writes, the trend of extended families living together is reemerging, due partly to economic reasons. She cites estimates by the National Alliance for Caregiving that 1 in 5 caregivers moved into the homes of loved ones to cut housing expenses.
Wilson and her mother first began living together when Wilson took a job as a business writer for the St. Louis Post-Dispatch. She eventually moved on to other work, including a job as director of communications at the Kansas Department of Education. She’s now a free-lance writer in Wichita, Kan., and blogs for caregivers of aging parents and seniors.
“People are living longer but not necessarily healthier,” she says. “I wrote this book to offer a roadmap. It’s for those who might have to care for a parent now or might need care for themselves in the future. The book puts the family in control of a relative’s care so there are fewer worries about issues of elder abuse and financial ruin.”
