By Judith Graham AUGUST 23,
2018
“This
won’t go on for very long,” Sharon Hall said to herself when she invited her
elderly mother, who’d suffered several small strokes, to live with her.
That
was five years ago, just before Hall turned 65 and found herself crossing into
older age.
In the
intervening years, Hall’s husband was diagnosed with frontotemporal dementia
and forced to retire. Neither he nor Hall’s mother, whose memory had
deteriorated, could be left alone in the house. Hall had her hands full taking
care of both of them, seven days a week.
As life
spans lengthen, adult children like Hall in their 60s and 70s are increasingly
caring for frail, older parents — something few people plan for.
“When
we think of an adult child caring for a parent, what comes to mind is a woman
in her late 40s or early 50s,” said Lynn Friss Feinberg, senior strategic
policy adviser for AARP’s Public Policy Institute. “But it’s now common for
people 20 years older than that to be caring for a parent in their 90s or
older.”
A new analysis from
the Center for Retirement Research at Boston College is the first to document
how often this happens. It found that 10 percent of adults ages 60 to 69 whose
parents are alive serve as caregivers, as do 12 percent of adults age 70 and
older.
The
analysis is based on data from 80,000 interviews (some people were interviewed
multiple times) conducted from 1995 to 2010 for the Health
and Retirement Study. About 17 percent of adult children care for
their parents at some point in their lives, and the likelihood of doing so
rises with age, it reports.
That’s
because parents who’ve reached their 80s, 90s or higher are more likely to have
chronic illnesses and related disabilities and to require assistance, said
Alice Zulkarnain, co-author of the study.
The
implications of later-life caregiving are considerable. Turning an elderly
parent in bed, helping someone get into a car or waking up at night to provide
assistance can be demanding on older bodies, which are more vulnerable and less
able to recover from physical strain.
Emotional
distress can aggravate this vulnerability. “If older caregivers have health
problems themselves and become mentally or emotionally stressed, they’re at a
higher risk of dying,” said Richard Schulz, a professor of psychiatry at the
University of Pittsburgh, citing a study he published in the Journal of the
American Medical Association.
Socially,
older caregivers can be even more isolated than younger caregivers. “In your
60s and 70s, you may have recently retired and friends and family members are
beginning to get sick or pass away,” said Donna Benton, research associate
professor of gerontology and director of the Family
Caregiver Support Center at the University of Southern
California.
Caregiving
at an older age can put hard-earned savings at risk with no possibility of
replacing them by re-entering the workforce. Yvonne Kuo, a family care
navigator at USC’s caregiver support center, has been helping an 81-year-old
woman caring for her 100-year-old mom with vascular dementia in this situation.
“There’s
no support from family, and she’s used up her savings getting some paid help.
It’s very hard,” Kuo said.
Judy
Last, 70, a mother of three adult children and grandmother of six youngsters,
lives with her mother, Lillian, 93, in a mobile home park in Boise, Idaho. Last
moved in three years ago, after her mother had a bout of double pneumonia,
complicated by a difficult-to-treat bacterial infection that put her in the
hospital for eight weeks.
“You
don’t know if it’s going to be permanent at the time,” said Last, whose father
died of dementia in January 2016 after moving to a memory care facility. “Mom
had asked me several years before if I would be there when she needed help and
I told her yes. But I didn’t really understand what I was getting into.”
Feinberg
said this isn’t uncommon. “People in their 90s with a disability can live for
years with adequate support.”
Last
doesn’t find caregiving physically difficult even though she’s had two hip
replacements and struggles with arthritis and angina. Her mother
has memory problems and chronic obstructive pulmonary disease, relies on
oxygen, uses a walker, has lost most of her hearing, and has poor eyesight.
But
things are hard, nonetheless. “I had plans for my retirement: I imagined volunteering
and being able to travel as much as my bank account would allow,” Last said.
“Instead, I don’t take time off and leave my mother. A big thing I deal with is
the loss of my freedom.”
Hall,
who’s turning 70 in September and who lives in Cumming, Ga., managed her
mother’s and husband’s complex needs for years by establishing a strict
routine. Monday and Friday they went to a dementia respite program from 10 a.m.
to 3 p.m. On other days, Hall cooked, shopped, did laundry, helped them with
personal tasks, made sure they were well occupied, provided companionship and
drove them to medical appointments, as necessary.
“I did
not expect this kind of life,” said Hall, who has had two knee replacements and
a broken femur. “If someone had told me it would be years caring for my mother
and your husband is going to get dementia, I would have said ‘No, just no.’ But
you do what you have to do.”
A few
weeks after our conversation, Hall’s mother entered hospice following a
diagnosis of aspiration pneumonia and life-threatening swallowing difficulties.
Hall said she has welcomed the help of hospice nurses and aides, who ask her at
each visit, “Is there anything else you need from us that would make it easier
for you?”
Though
older caregivers get scant attention, resources are available. Over the years,
Hall has shared caregiving ups and downs at CareGiving.com — a significant
source of information and comfort. Across the country, local chapters of Area
Agencies on Aging run caregiver support programs, as do
organizations such as the Caregiver Action Network, the Family Caregiver Alliance,
the National
Alliance for Caregiving and Parenting Our Parents, an
outfit focused on adult children who become caregivers. A helpful list of
resources is available here.
Sometimes,
caring for a parent can be a decades-long endeavor. In Morehead City, N.C.,
Elizabeth “Lark” Fiore, 67, became the primary caregiver for her parents when
they moved around the corner from her, in a mobile home park, in 1999. “My dad
took me for a walk one day and asked if I could look after them as they got
older and I said yes. I’m the oldest child and the oldest assumes
responsibility,” she said.
For
years her father — a difficult man, by Fiore’s account — had heart problems;
her mother had a nervous breakdown and a slow, extended recovery. “They wanted
me to be in their lives and I wanted to do for them — I’m a Christian — but it
was killing me. My heart was in the right place but emotionally, I was a
wreck,” Fiore said.
After
her father’s death from kidney cancer in 2010, her mother became even more
needy and Fiore found herself spending more time responding to calls for
assistance — often about suspected medical emergencies. “My mom had a way of
acting as if something was horribly wrong and then it turned out it wasn’t,”
she explained.
Fiore’s
health isn’t good: She says she has chronic fatigue syndrome and thyroid
problems, among other issues. But she didn’t know how to ask for help and no
one volunteered it, even when her husband, Robert, was diagnosed six years ago
with dementia. “I always expected myself to handle everything,” she said.
Finally,
the stress became unbearable last year and Fiore’s mother moved to a senior living
community close to Fiore’s 62-year-old sister, 400 miles away. Now, Fiore
spends more time attending to her husband’s needs and tries to support her
sister as best she can.
“At 90,
my mom is healthy as a horse, and I’m glad of that but it’s been a long time
caring for her,” she said. “I’ve changed a lot as a result of caregiving: I’m
more loving, more aware of people who are suffering. I’ve found out that I am
willing to go the extra mile. But I have to admit what I feel is tired — just
tired.”
KHN’s coverage
of these topics is supported by John A. Hartford
Foundation and Gordon and Betty
Moore Foundation
Judith
Graham: khn.navigatingaging@gmail.com, @judith_graham
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