Ted
Roelofs
Jackson — As is
her habit, Cathy Moore called out as she made her way through the kitchen
toward the living room where her mother lay in a hospital bed.
“Hey, Puddin’, how are we today?” she asked,
using her nickname for 92-year-old Willie Mae Dunlap, whose eyes fluttered in
recognition of her daughter’s arrival.
Moore and her brother, Melvin Moore, have
spent much of their lives since 2018 caring for their mother in her Jackson
home despite a progressive form of palsy that’s claimed her mobility inch by
inch.
Doing so has come with a substantial cost:
thousands of hours and thousands of dollars. Melvin, 66, is facing a bill of
several hundred dollars to place a wheelchair ramp outside the home. Cathy
Moore, 71, has an aching back from months of lifting and carrying her mother.
“It has been up and down emotionally. A lot of
people would like to tell you what to do, but they are not going through it,”
Cathy Moore said.
It can be lonely work, but they have plenty of
stressed-out, financially strapped company across the state. Nearly 1.3 million
Michiganians — more than 10% of the state population — serve as
uncompensated caregivers for relatives, spending an estimated $7,000 a year
apiece, according to AARP Michigan.
Statewide, the total economic value for such
unpaid care is $14.5 billion per year, according to the advocacy group.
The situation is getting worse.
By 2030, those older than 75 will increase to
13.3% of Michigan’s population from 7.5% in 2020, according to state data.
At the same time, national projections predict the pool of potential family
caregivers to shrink from seven relatives per senior in 2015 to four in 2030,
making it harder for the elderly to stay in their homes.
“Families still provide the majority of care,”
said Clare Luz, a gerontologist and professor at Michigan State University’s
College of Osteopathic Medicine.
“But there are fewer and fewer family
caregivers. We saw this coming, but we had our head in the sand. We are in big
trouble.”
A national survey by AARP suggests minority
groups bear more of the load, as African American caregivers report providing
31 hours of care each week and Hispanic caregivers 26 hours weekly, compared to
21 hours by Whites.Create Account
Michigan already suffers from a gap of paid
home care workers, with an estimated shortage of 34,000 direct care workers out
of a current workforce of 120,000. The shortage could stretch to more than
200,000 by 2026 as more workers leave the field, according to PHI, a New York
City-based policy and advocacy nonprofit.
Given those projections, family caregivers in
Michigan likely will have to dig even deeper to fill the void.
“I don’t know how this aging population is
going to be taken care of,” said Michigan demographer Kurt Metzger,
retired founder of Data Driven Detroit. “This whole idea of aging in place
and staying in your home and hoping to have someone take care of you — the
numbers just aren’t there.”
‘It’s my mom’
Cathy and Melvin Moore know well that numbers
aren’t on their mother’s side.
They grew up in the Jackson home with their
mother, Dunlap, and have done their best to cope as she gradually lost mobility
over the past three years.
Several months ago, when their mother could
still walk with help, the pair struggled to guide her upstairs to a
second-floor tub where they could bathe her. At one point, Melvin and his wife,
Jennifer, lugged his mother up the steps cradled in a blanket like a makeshift
hammock.
Melvin Moore moved from Louisville in fall
2018 to his childhood home to look after his mother, even as his wife now lives
in a separate apartment in Jackson. To help meet expenses, Melvin does
word-of-mouth auto repair from a garage across the street.
“She always took care of me when I was little.
It’s my mom,” said Moore, who broke down in tears as he said he “never
imagined” he would be changing his mother’s diapers.
Cathy, who retired from a management job some
15 years ago, said the years looking after her mother have prompted worries
about her own financial security.
“Sometimes I think I need to get a part-time
job, but I just can’t do that now,” she said.
Their mother’s bed is surrounded by scores of
photos of her extended family, a legacy that includes eight children, 21
grandchildren, nearly three dozen great-grandchildren and 17 great-great
grandchildren.
And while her mother can only speak with great
effort, Cathy explained: “She understands everything. Her mouth opens and you
have to read lips to understand what she is saying.”
Not long ago, as Cathy bid goodbye, her mother
managed to speak these words aloud:
“I love you.”
Michigan spends less to keep elderly in homes
The Moores are grateful for any outside help
they now get.
An aide comes for an hour a day to wash and
dress their mother, a nurse visits once a week, and they get four hours of
temporary relief from a home care aide, known as respite care. The services are
funded through Medicaid and the Jackson County Department on Aging.
“That’s all we have right now,” Cathy said.
Advocates say programs to help older adults
“age in place” in their homes — rather than go to nursing homes — are
woefully underfunded.
The federal Older Americans Act allocates $2
billion per year to states for home-delivered and congregate meals, in-home
assistance, preventive health services, transportation, including about $186
million for caregiver support.
Michigan’s share for family caregivers is
projected for 2021 at just under $5.8 million — which doesn’t go far with more
than a million unpaid caregivers.
Overall, according to a 2020 analysis by AARP,
Michigan ranked 30th in the nation in overall long-term care services,
including funds for home and community-based care. It ranked 23rd in support
for family caregivers.
The analysis, based on data from 2016, found
that Michigan spent 31.5% of Medicaid funds for long-term care on home and
community-based services for older people and adults with disabilities.
Most neighboring states spent more to keep
older adults in their homes. Ohio spent 37.1% on home and community-based care,
while Wisconsin and Illinois spent more than 50% and Minnesota spent
nearly 70%. (Indiana, in contrast, spent 18.4% of Medicaid funds on home
and community care.)
Lisa Cooper of AARP Michigan said it makes
sense to expand state support for home-based care because studies show that it
costs the same to care for one person in a nursing home as it does to care for
three who live in their homes.
“We know that if a person needs supports and
services, they overwhelmingly prefer to receive those in their homes. We can
save taxpayer dollars,” Cooper said.
Respite care — a vital lifeline to caregivers
who need a break — is available through nonprofit, government and private
agencies, and comes in the form of in-home care or drop-off care at adult day
centers.
Families who don’t qualify for Medicaid have
the option of paying for respite care themselves. But at costs of about $30 an
hour for in-home respite care and $100 a day at an adult care center, expenses
mount quickly.
“It’s better than nothing,” said Julie Alicki,
a licensed therapist who leads support groups for family caregivers in Kent
County and former consultant on aging issues to the Area Agency on Aging of
Western Michigan.
“But for someone providing care 24-7, especially
for someone dealing with Alzheimer’s, it doesn’t touch what they need.”
Caregivers can also turn to community support
groups that can be an emotional lifeline, including those for those dealing
with family members with dementia and Alzheimer’s.
Medicaid, the state-federal program that helps
with costs for people with limited income and resources, pays for in-home care
for recipients who meet its income guidelines and who would otherwise qualify
for nursing home care.
In Michigan, a program called MI Choice
provides home and community-based services for about 15,000 Medicaid
beneficiaries each year. The program has a waiting list of 1,800.
Under its guidelines, a married partner of a
spouse applying for Medicaid can retain assets excluding the primary residence
of about $130,000.
AARP Michigan backs a proposal to add $6.3
million in state funds to the MI Choice program for the fiscal 2022 budget,
which would add about 1,000 more slots.
Nicholas Ryan, a Grand Rapids attorney who
specializes in elder law, said his firm often hears from clients desperate for
help navigating the complexities of Medicaid funding formulas.
“We have clients coming in saying, ‘I’m
running out of funds.’ They are at the burnout point, where they are burning
the candle at both ends. The family picture I see the most is where adult
children are taking care of a parent. The time they are taking for the parent
is time they are not taking at work.
“They are literally doing this at the
financial detriment of themselves.”
‘Why am I doing this?’
A state official also said many caregivers
fail to reach out for help until they are desperate, either out of pride or
because they don’t know where to look for assistance. AARP Michigan offers a
detailed resource guide for family caregivers, listing a variety of state,
local and nonprofit resources to support them.
“Making sure people are aware of the programs
that can help is something we are forever working on,” said Lacey Charboneau,
field services representative for the state Aging and Adults Services Agency.
The toll can be especially steep for 500,000
in Michigan who care for a loved one with Alzheimer’s disease or dementia.
According to a national report on unpaid
caregiving by the Alzheimer’s Association:
·
Nearly 60% of caregivers rate the stress of caregiving as high
or very high. Up to 40% report depression.
·
16% took a leave of absence from work.
·
9% quit work.
Sitting in the dining room of her northern
Kent County home, Debbie Burton said she barely considered bringing in outside
help as she tended to her husband of 24 years, Jimmy, over the past four years.
“I was really the only person looking after
him,” said Burton, 69.
Like many family caregivers, she fell into
this role with no training about four years ago, as her husband struggled with
diabetes and Alzheimer’s.
“Twenty-four years ago, he made me promise
that I would keep him in the house instead of putting him in a home if it ever
came to that,” she said.
That came at a cost.
In their previous home, Burton ferried his
meals to him in an upstairs bedroom where he spent most of his time. She
estimates she made that trek up to 10 times a day, in addition to changing his
adult diapers and washing him down in the shower.
“I personally have arthritis and
bone-on-bone pain in my knee," she said. "It hurt like crazy going up
those steps.”
Two years ago, the Burtons moved into a
one-level home that Debbie hoped would ease the physical demands of his care.
But by then, the progression of his
Alzheimer’s led to jarring shifts in his personality. That sometimes obscured
the fond memories Debbie held of their marriage, highlighted by trips to Las
Vegas, pontoon boat tours with friends at a Kent County lake, playful times
with grandkids.
“There were times when he was mean to me. Here
I am doing everything I can for him, and he was yelling things to me, that he
hated me. I would say to myself, ‘Why am I doing this?’ I thought I would
actually go first because I was so exhausted and in so much pain.”
At the end of March, Jimmy, 77, died at a
Grand Rapids hospital after a fall at home.
Only weeks before that, Debbie Burton finally
considered applying for caregiver assistance through Medicaid and joining a
caregiver support group. She was reluctant during the COVID-19 pandemic to
bring in outside paid care to ease her caregiving tasks.
“I didn’t want strangers coming into our
home,” she said.
But she also recalled wedding vows that had
guided her through this time.
“When I made the vow, I said in sickness and
health,” she said.
East of Ludington, Eric Dolson moved back from
Arizona to the family home in November to tend to his aging mother and father,
Robert and Lorli Marie.
He did so after he was laid off from a job in
financial sales, as he decided to abandon his search for another job to take on
this role.
When he moved in, his father was in relatively
good health. His mother, however had battled emphysema for years, and more
recently, lung cancer that had spread. Doctors consider the conditions
terminal.
Near the end of April, Dolson’s father called
out for help from a bedroom.
He was in the midst of a stroke. He died two
days later, at 88, in a Ludington hospital after being removed from life
support.
Sitting at the kitchen table in the farmhouse
that was the family home for decades, Lorli Marie, 87, said she’s grateful for
the way her family of nine children rallied to her side.
Her memories spooled back to the decades she
and her husband spent tending to their 280-acre fruit farm, back to her high
school marching band, and then to childhood recollections of skating in
Wisconsin on a frozen lagoon with her parents.
She returned to the present, wondering aloud
what she would have done these past few months without Eric. With warmer
weather at hand, and flowers blooming, she treasures their short strolls in the
yard outside her house.
“He doesn’t replace my husband. But he has
been a godsend here. How do you measure something like that?”
As it turned out, Eric was the family member
to tell his mother that her husband of 67 years had passed away. At that news,
his mother nearly collapsed at the kitchen sink, as she clung to its edge and
cried out:
“Who’s going to take care of me?”
This story was produced through the New York
& Michigan Solutions Journalism Collaborative, a partnership of news
organizations and universities dedicated to rigorous and compelling reporting about
successful responses to social problems. The group is supported by
the Solutions Journalism Network.
The collaborative’s first series, Invisible
Army: Caregivers on the Front Lines, focuses on potential solutions to
challenges facing caregivers of older adults.
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