Patricia McCormack could barely understand her mother's sobbing voice on the phone. It was 5 a.m., and Helen, then 83, was frantic. "I don't know where I am," her mother said. "I'm all alone. Where is everyone?"
Within days, McCormack, now 65, and her daughter were on a plane to Buffalo, N.Y. What they thought would be a quick trip turned into a life-changing ordeal. Daughter sold her home on the West Coast and daughter and granddaughter spent 2 1/2 years and a good portion of both their savings trying to provide the most appropriate medical care for Helen.
McCormack quickly learned a harsh lesson about caring for someone with Alzheimer's disease: It's expensive, and much of the cost comes out of the family's pocket. Medicare didn't cover the $108,000-a-year cost of the locked memory-care facility that doctors told McCormack her mother needed to ensure her safety right after the diagnosis. And it didn't cover the $84,000-a-year assisted living facility that Helen lived in for three years after that.
So where did the money come from? Helen, a widow and retired hairdresser, was not a wealthy woman. The $60,000 she had in the bank was gone within two years, leaving McCormack with no choice but to sign a home equity loan on her mother's property, currently on the market for a mere $75,000, to pay for the long-term care. Helen only qualified for Medicaid once her assets were depleted and she required nursing home care. By then, McCormack had spent $40,000 — more than half of her savings — on her move to Buffalo and her mother's care.
Two years ago, McCormack and her daughter moved back to California. McCormack, disabled 10 years ago after a bout with hepatitis C, now lives on earnings of less than $3,000 a month from Social Security and a pension. She's left with only $30,000 in savings and relies on financial assistance from her daughter to pay the rent.
"My mother's house is vacant, but we can't sell it," says McCormack who co-owns the house with her mother and brother. "We just got a tax bill for $1,778. We're going to have to heat it over the winter. And we have an equity loan on the house for $50,000, which I'm going to have to pay out of my savings because there's just no more money."
The financial strain of caregiving
McCormack's story is a common one. She is among the 56 percent of caregivers who say Alzheimer's disease has strained their family's finances, according to new findings. The Shriver Report: A Woman's Nation Takes on Alzheimer's interviewed caregivers of people with Alzheimer's or other forms of dementia and found the average cost of care for an Alzheimer's patient is $56,800 per year. Sixty percent of that average cost — $34,500 per year — is covered by caregivers and the rest of the family themselves. The bulk of this is in the form of uncompensated care, but the out-of-pocket costs to the family add up — an average of $7,259 per year.
The family of a patient living independently or with an informal caregiver pays about $850 a year in related costs. But once that loved one is moved to a health care facility, the families' costs skyrocket to $20,535 per year, according to the Shriver Report. This money goes toward adult day care, nursing home, assisted living and paid caregivers such as companions and home health aides. And that care can go on for years — one-third of caregivers have been in their role for more than five years, says the report.
The bulk of that average $34,500 cost — $27,200 — is uncompensated caregiving that helps 70 percent of dementia patients live in the community, rather than in a costly nursing home or assisted living facility. Family members are helping with bathing, feeding and housekeeping, and half of all caregivers have invited a loved one to come and live with them. The remaining 20 percent of patients living in the community are living with a spouse, independently or in another arrangement.