June 11, 2016
By Crocker
Stephenson of the Journal Sentinel
Like their lives back then, Steve and Peg Schultz's plan was
simple, one they could lay out with a pencil on the back of an envelope: They
would work hard. Save their money. Retire at 55. Then freedom.
"We thought we'd travel for maybe 10 years, while our knees
could still handle it," Steve Schultz said. "Then we'd settle down,
with a place in Florida and one up here, kind of like my folks did. We did not
see this monster coming."
That monster was — is — Alzheimer's disease. Steve, 68, and Peg, 67, hardly knew a
thing about it. It wasn't part of the plan.
So in 2007, when Steve noticed the phrase "what-cha-call-it"
creeping with ever more frequency into Peg's sentences, the idea that a
dementia of some kind was dismantling her vocabulary simply did not occur to
him.
"I need to make sure you understand," he said,
"that the woman I love was the most intelligent person I've ever
known."
Peg sits on a chair near the window of her room in the Memory
Care Assisted Living unit of the Lutheran Home in Wauwatosa. Steve, seated on
the edge of her single-size bed, takes her hand. Steve has covered the walls
with photographs of people Peg no longer recognizes.
Medicare does not cover Peg's care at the Lutheran Home. Peg's
care this year will cost Steve about $65,000. Out-of-pocket.
Peg and Steve worked hard. They saved their money. He'll need to
dip into their retirement savings, but he'll be able to pay for Peg's care.
But that wasn't the plan.
•••
More than 5 million Americans now have Alzheimer's disease, the
most common form of elderly dementia, and the prevalence of Alzheimer's among baby boomersis
expected to explode by midcentury.
The Alzheimer's Association projects that 10 million baby
boomers will develop the disease.
While studies and media stories that explore the emotional toll the
disease extracts from family and friends are all but legion, the financial
toll, which can also be devastating, is less understood.
And so, in December, the Alzheimer's Association interviewed
more than 3,500 people across the nation and asked them about the costs of
caring for family members or friends with Alzheimer's disease or other
dementia.
A report on the survey concluded that, on average, care
contributors spent $5,155 a year of their own money to take care of a relative
or a friend with dementia.
Amounts varied from less than $1,000 to more than $100,000.
Spouses and partners spent the most — on average, more than
$12,000 a year. Adult children spent an average of $4,800, though a significant
percentage — 16% — spent $10,000 or more.
These expenses, respondents said, jeopardized their own financial
security and squeezed household budgets:
■ Two in five had to cut back on savings. One in five dipped into
retirement savings.
■ One in five cut back on going to the doctor. One in 10 cut back
on buying medicine for themselves. One in 10 cut back on their children's
educational expenses.
■ Respondents said that to meet expenses, they sold vehicles,
furniture, jewelry, collectibles, even homes.
■ The cost of contributing to the care for someone with dementia
literally took food out of the mouths of caregivers. They were more than 25%
more likely to report that they ate less or didn't have enough money to eat
properly.
■ Income shrank even as expenses grew. Respondents reported
working fewer hours or taking early retirement to support someone with
dementia. Income losses averaged about $15,000.
■ Some
respondents said they met increased expenses by increasing the hours they
worked, or took second jobs, postponed retirement or went back to work.
•••
Peg Schultz had worked for the Social Security Administration.
Steve also worked for the administration, then for the National Labor Relations
Board.
He's perfectly comfortable with the Byzantine regulations that
govern Medicare, Medicaid, state administration of assistance programs, and the
whims of private insurers.
Not so for most of those surveyed by the Alzheimer's
Association:
■ Some
28% of those surveyed believed — incorrectly — that Medicare pays for nursing home care and another 37% didn't
know if it did or not.
It doesn't. Custodial care in nursing homes is not covered.
■ Some
36% believed — incorrectly — that Medicaid was long-term care insurance and 25% didn't know.
While Medicaid does help people with limited incomes pay for
some long-term care and medical costs, "in most instances, individuals
must have depleted nearly all of their assets to be eligible," the report
says.
■ About
30% of those surveyed believed their insurance covered long-term care.
"But national statistics," the report said,
"indicate that only about 3% of U.S. adults and about 10% of adults older
than 55 have long-term care insurance."
Couples find themselves doing things utterly alien to their
sense of love and marriage, including getting divorced, to protect their
assets.
"Medicaid does not recognize the modern family," says
Carol Wessels, an attorney specializing in elder law. "It's devastating in
so many ways."
Carol's own mother, Velma Wessels, died last year, at the age of
89, after living with Alzheimer's for 15 years.
Her father, Russell, died in 2008 of a bladder condition that
would have been highly treatable had he addressed it in its early stages.
"He let his health go while he was caring for her,"
Wessels said.
Wessels had been practicing elder law for 20 years when she
began to care for her mother.
"But I didn't realize what was going on — didn't have a
clue — what it was like to go through Alzheimer's," she said.
Steve Schultz figures he'll weather the financial strain of
Peg's illness. It wasn't the plan, but it's their reality.
Still.
"I'd rather be homeless and penniless if I could have her
back," he said. "Money doesn't matter."
The Southeastern Chapter of the Alzheimer's
Association offers classes covering legal and financial planning. For more
information, call (414) 479-8800. Or call the association's 24/7 helpline (800)
272-3900.
Crocker Stephenson covers public health. He has won many
regional and national awards for his stories concerning infant mortality, child
welfare, poverty, urban life and welfare reform.
http://archive.jsonline.com/news/health/lives-and-life-savings-pulled-apart-by-alzheimers-b99741437z1-382574781.html
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