Della Pruitt’s family, based in Lewisville, Tex., had a long history of Alzheimer’s Disease.
Her mother, four aunts and one uncle (out of a family of 12) developed the disease. So when Pruitt’s older sister, Nola, began to have memory problems in her early 50s, her husband, Harold, was worried.
He begged Pruitt to sign on as Nola’s guardian and medical power of attorney, in case anything happened to him. Della agreed, on condition that Nola’s husband (who was 10 years older than his wife) take out a long-term care policy.
Over the ensuing 10 years, it became clear that Nola suffered from early-onset Alzheimer’s. When Nola’s husband died suddenly of a heart attack, Pruitt’s life changed overnight. She moved her bereaved and confused sister from her Florida home to the Pruitt home in Texas and became a full-time caregiver.
“When my sister arrived, she could dress and shower herself and talk a little,” she says. But those abilities faded quickly – perhaps hastened by the shock of her husband’s death and the change in her living circumstances.
Soon, bathing required Pruitt to maneuver Nola onto a chair in the shower and then climb in herself, in shorts and a T-shirt, to wash her. Everywhere she went, Nola came too. “We couldn’t leave her alone,” she says.
At the time, Pruitt had two daughters aged 15 and 17 at home and she worked for the family business. When Nola arrived, Pruitt moved her base of operations into the family home so she could keep an eye on her sister. Between managing her job and her household, and ferrying her own girls around, she fed and bathed Nola and took her to numerous doctor appointments.
I can’t tell you how many times in the day I said, Give me strength, it’s so hard.
She persisted, as most caregivers do, out of love. “Nola was almost nine years old when I was born,” she says. “She took care of me a lot. She was like a mother to me and we stayed very close.”
For those who don’t feel such a strong connection and yet have been thrust into the role of caregiver, the burden may seem unbearable. Ultimately, whether you choose to take on the role will likely be up to you. For Pruitt, the two-and-a-half years she spent caring for Nola were sad and difficult, but worthwhile.
She kept her sanity by clinging to a few simple pleasures – singing in a choir, church on Sundays. “That was not negotiable,” she says. Eighteen months ago, it became clear to Pruitt that she could no longer give Nola the care she needed.
Her sister’s motor skills had declined to the point that falling was a constant threat, she wandered in the night and she had frequent urinary tract infections (UTIs), a sign that “incontinence was just around the corner.”
Because of Nola’s long-term care insurance, Pruitt was able to place her in a good facility with caring nurses on staff and plenty of planned activities.
In the U.S., 29 states have “filial laws” that require sons and daughters to pay their parents unpaid long-term care bills (but not necessarily to care for them at home). In 2012, for example, the Pennsylvania Superior Court ruled that the adult son of a woman who had received nursing care was responsible for $93,000 in unpaid medical bills after his mother left the country.
Are you on the hook?
Most Canadian provinces have laws on the books that require the children of poverty-stricken parents (including those with Alzheimer’s disease) to pay financial support.
It appears the use of such laws has been infrequent. And when they have been invoked, the courts recognize that your own obligations (to spouse and children) come first.
The Pennsylvania case hinged on the fact that the son could afford to pay his mother’s bills. In a British Columbia case where an estranged mother tried to force her grown children to pay $750 in monthly support, the court noted that the full amount of the son’s income was committed to his own family’s “needs, responsibilities and liabilities,” concluding he “does not have sufficient income to support the claimant.”
Camilla Cornell is a health writer based in Toronto.
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