Looking back, Susan can’t quite remember how she came to be the “designated daughter” for her parent’s care – it all happened so fast. Susan’s father and mother, John and Althea, were happily retired in Maine. But at age 69, three weeks after a checkup concluded with the news that John was in great shape, he had a massive stroke that left him paralyzed on one side.
Althea, who had some medical problems of her own, was quickly overwhelmed. She crashed both of the couple’s cars in a two-month period. By the time an ice storm hit and they were stranded without power, it was clear that something had to change. Fast. “All of a sudden, this charming existence that they had set up for themselves was like a time bomb,” says Susan, 54, who lived in North Carolina with her husband, Gregg, and their sons, then 12 and 8.
“Boom – there they were,” she recalls. “My sister was wheeling Dad off an airplane and I was thinking, Oh, my God.”
Susan set up her parents in an assisted-living residence five minutes from her home. John had always been congenial and capable, mastering everything he set his mind to. Being incapacitated left him depressed. He was not the grandfather her children remembered: He was irritable; they were scared. And his daughter was unprepared for the role reversal that occurs when children are suddenly charged with their parents’ care.
Susan hadn’t anticipated how heavily her parents would rely on her – to take them to doctors’ appts and on outings, to pay their bills and make medical decisions. And she hadn’t realized how quickly the costs would add up. One national survey has shown that caregivers typically spend more than $5000 a year on out-of-pocket expenses. Though Medicare and supplemental insurance covered her father’s medical bills, Susan was the one buying adult diapers, underwear, and other supplies. She can’t even count the number of extra miles she’s put on her car or the unpaid days she’s taken off from work.
Things came to a head seven years into her new role, in the summer of 2005. She was already anxious because her son Robby was by then in the U.S. military, stationed in Iraq. Then her mother got sick and had to be hospitalized. The family dog was diagnosed with cancer. And although her parents had purchased five years of long-term health insurance (“a financial godsend,” Susan says), she discovered that they were running out of money.
The long-term insurance plan had been covering only her father’s medical expenses; after many phone calls, Susan got her mother certified as eligible, too. She was also able to negotiate a lower rate with her parents’ assisted-living residence, in part because they were living in one room. But the whole process, she says, was “excruciating.”
At times, she could barely hold herself together. “Sometimes I thought, Maybe I’ll have a breakdown, and they’ll have to pack me away in a hospital, and I can just get some rest,” she says, laughing. “It sounded kind of appealing, actually.”
It’s been 11 years since Susan began care giving for her parents. Her father has had a seizure and a couple of bad falls. Her mother has been diagnosed with mild dementia. With her sons now in college, Susan works full-time as a teacher’s aide and in a book store during the summer. But her husband lost his job as a general manager of a software company in the economic downturn last December, putting new financial pressure on the couple.
Yet it’s the emotional anxiety that wears her down. “Raising my kids was a snap compared to this,” she says. “Children go through phases, and when you’re in the midst of one that’s not so fun, you think they’ll grow out of it, and sure enough they do. But with my parents, it’s not going to get better.” Still, there are rewards. “I’m trying really hard to do the right thing by my parents, and I guess there’s a certain satisfaction in that,” she says. “And I hope I’m being a role model for my children. At least maybe when their turn comes, they will have a more realistic picture of what to expect than I did.”
By Camille Peri, Reader’s Digest (Dec09/Jan10 issue)