“After a while it just became she and Kizzie. They’d go to bed at 6:30,” she said.
Unlike
her mother, who stayed in her house until three months before she died
at 98, Lewis is open to someday selling or renting out her house and
moving to a senior facility. “I want more companionship,” she said,
“multi-age companionship in a group, and people who share some
interests, and stay as involved as I can in growth and development and
health.”
AARP estimates about 41 million Americans care for their adult family
members, a number that has increased as life expectancy has grown. About
4 in 10 such caregivers say they have plans in place for their own
future care, according to the organization’s 2015 Caregiving in the U.S.
survey.
Myrtle Lewis, who cared for her mother in the last eight years of her life, at her D.C. home. (Ricky Carioti/The Washington Post) |
Often,
people who are relatively young and healthy don’t spend much time
contemplating what life will look like when they get old and frail —
until they see it reflected in the life of a loved one.
“No
one wants to think about their own aging. Everybody puts it off,” said
Amy Goyer, a family and caregiving expert at AARP. “With our parents
living longer, we are getting more involved in it as an ongoing
situation. Our parents’ parents didn’t live as long, but for baby
boomers it gets harder to ignore — it’s a repeated smack in the face of
reality.”
Seeing a parent’s body or mind break down can inform decisions about
one’s own old age, from the practical — finding a house on a single
level, installing grab bars, touring living facilities — to the
philosophical, such as learning empathy, shoring up social ties or
accepting one’s own limitations.
Downsizing, Myrtle Lewis sets aside items to put in storage. (Ricky Carioti/The Washington Post) |
For
Richard Lui, 52, an MSNBC news anchor in New York City, becoming a
caregiver for his father, who has dementia, forced him to grow
emotionally. After his father, a retired pastor in San Francisco, began
to have memory problems eight years ago, Lui started flying there each
week to help care for him, as his father gradually lost his ability to
communicate.
The
experience, while wrenching, also resulted in a breakthrough. Seeing
his once independent father so vulnerable felt like holding up a mirror
on Lui’s own potential frailty. He also began to think more about
financial planning and long-term-care insurance. “Eight years ago I
thought I was forever young. But no, I’m not, and I need to think about
that for my own health and personally,” he said. “I have to run toward
the fire. I have to. I can’t run away from it.”
Now
when people ask how he is, Lui is more willing to share the hardships.
“I will try to answer as honestly as possible,” he said. He also serves
as a caregiving “ambassador” for AARP; the Alzheimer’s Association;
Embracing Carers, a caregiver advocacy group; and BrightFocus
Foundation, which supports research on Alzheimer’s and vision diseases.
Such
clearheadedness is typical of people caring for family members, said
Denise Brown, a Chicago-based caregiving coach who started
CareGiving.com in 1996. “When you’re a family caregiver, you’re not in
denial about death and aging and what happens when we get older,” she
said. “We know that we’re not going to live forever — we live it. It’s
not necessarily immediate for most people, but we live it.”
Brown
started caring for her parents in 2004 and made a vow to herself when,
after a medical crisis, her mother was unable to return from a
rehabilitation facility to her house. “It was awful to tell her she
couldn’t go home,” she said. “I want to make sure I’m set . . . where I
don’t have to rely on other people to pack up my house and move for me.”
To
forestall this, Brown, 56, has identified a continuing-care facility
she is considering for her next move: “It’s beautiful. It’s got a
campus. I feel like when I’m 70 I’ll have enough energy for the move and
then I’ll have enough energy after the move to enjoy it.”
It
wasn’t until he became his mother’s full-time caregiver that Dave
DiBella, 71, of Pittsburgh realized how unprepared he was for his own
aging. When she fell and injured her hip 10 years ago, he retired early
from his job as alumni and gallery director at the Art Institute of
Pittsburgh and moved in with her.
“That
was a year of being tested beyond anything I could have ever imagined,”
he said. “It made me so afraid that I’ll be dependent on somebody.”
To
stave that off, DiBella said, he is consciously staying fit. He is also
taking more seriously the idea of organizing his affairs, such as
writing a will and designating beneficiaries. “I was a bit of an ostrich
before,” he said. “Now I realize that I’m not the exception to the
rule.”
Dale
Brown, 65, a retired federal policy administrator in the District who
helped care for her parents, is shopping for a condo that, unlike her
current one, is all on one level, with an elevator and wheelchair
accessibility.
“Once
I get it, I’m going to set it up for the 95-year-old Dale,” she said.
“I’m going to get lever door handles. I’m going to try to get a walk-in
tub, and a room where I can put someone if I need help.”
Caring
for a parent can also crystallize what a person doesn’t want. Jeffrey
Slavin, 64, the mayor of Somerset, Md., and his sister have been
decluttering their 94-year-old mother’s house as they care for her,
secretly slipping out with books and other items.
That
has convinced Slavin to start getting rid of his own possessions,
including art and some pocket watches from a collection his father left
him. “I’m giving away things now that I want people to enjoy in my
lifetime,” he said.
Lewis,
too, is taking steps now to forge a path different from her mother’s.
Seeing her mom give up driving prompted her to get cataract surgery to
maximize her years behind the wheel. “I’m trying to hold on as long as I
can,” she said.
Some
have a more radical take. Seeing her parents grow old and frail made
Holly Tippett think she might consider ending her life rather than
become incapacitated. Tippett, 57, a fundraiser for a nonprofit group in
the District, helped care for her father as he was dying and was her
mother’s primary caregiver for a year.
“It
makes me realize that I don’t want to get super old and I don’t want to
be a burden on my children,” she said. “I don’t think the quality of
life is worth the burden on family and friends.” Recalling seeing her
father, a successful business executive, reduced to incontinence, she
said, “I don’t want to live like that, and I don’t want my kids to see
me like that.”
For
Roberta Youmans, 65, a retired Department of Housing and Urban
Development employee in the District, caring for her mother, who had
Parkinson’s disease with dementia, made her “a little more worried about
aging than I think some of my friends are.”
Because
of this, she signed up for Medicare B even though she already has a
government pension, and she thinks twice before spending money on things
such as travel. She also learned to appreciate small victories: “I
spend a lot more time being grateful for what I can do. ‘Oh my God, my
legs are still okay,’ having seen my mom not be able to walk. I can
still smell. I can still see.”
“Little
gifts, like, ‘Oh, she matched up two buttons, that’s great,’ when she
used to do 5,000-piece puzzles,” she said. “I really learned a lot about
life, death, aging, and what’s important.”
Full Article & Source:
In helping elderly parents, caregivers get a peek at their futures — and are inspired to plan for old age
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