Dr. Alison Webb took her 81-year-old father out of assisted living, to live.
Coleen Hubbard took her 85-year-old mother out of independent living, to die.
With the coronavirus moving through facilities that house older adults, families across the country are wondering “Should I bring Mom or Dad home?”
It’s a reasonable question. Most retirement complexes and long-term care facilities
are excluding visitors. Older adults are asked to stay in their rooms
and are alone for most of the day. Family members might call, but that
doesn’t fill the time. Their friends in the facility are also
sequestered.
In a matter of weeks, conditions have deteriorated in many of these centers.
At assisted living sites, staff shortages are developing as aides
become sick or stay home with children whose schools have closed.
Nursing homes, where seniors go for rehabilitation after a hospital stay
or live long term if they’re seriously ill and frail, are being hard
hit by the coronavirus. They’re potential petri dishes for infection.
Still, older adults
in these settings are being fed and offered other types of assistance.
My neighbor’s 80-something parents are at a continuing care community
outside Denver. It has started a concierge service for residents who
need to order groceries and fill prescriptions. At rehab centers,
physical, occupational and speech therapists offer valuable services.
But would be Mom or Dad fare better, even with all due social distancing, in the family home?
Of course, care there would fall squarely on the family’s shoulders,
as would the responsibility for buying groceries, cooking, administering
medication, doing the laundry and ensuring the environment is free from
potential contamination.
Home health care services could lend a hand. But they may not be easy
to get because of growing demand, shortages of personal protective
equipment and staffing issues.
Another concern in bringing someone home: Some facilities are telling
residents that if they leave, even temporarily, they can’t return. That
happened to a family in western New York, according to Roxanne
Sorensen, a geriatric care manager with Elder Care Solutions of WNY.
When this family took their elderly parents out of an assisted living
facility for a brief “stay-with-us” respite, they were told the parents
had been discharged and had to be placed on a waiting list before they
could return.
Sorensen has a client in her early 70s who’s in rehabilitation at a
nursing home after emergency surgery for a life-threatening infection.
The facility is on lockdown and her client is feeling trapped and
desperate. She wants to go home, but she’s still weak and needs a lot
more therapy.
“I’ve told her, stay here, get stronger and when you go home you
won’t end up in the hospital or with disabilities that could put you
back in a nursing home for the rest of your life,” Sorensen said.
Those in nursing care who have cognitive impairments may become
disoriented or agitated if a family moves them from an environment that
feels familiar, said Dr. Thomas Cornwell, executive chairman of the Home
Centered Care Institute. Some have behavioral issues that can’t be
managed at home.
Families with children need to think carefully about bringing an
older parent home, especially if he or she has underlying chronic
illnesses such as heart, lung or kidney disease, Cornwell said. “Kids,
generally, even in the past few weeks, have been exposed to hundreds of
others (at school),” he said. “They tend to be vectors of infection.”
Ultimately, every family must weigh and balance the risks. Can they
give an older parent enough attention? Do they have the emotional and
physical stamina to take this on? What does the parent want? Will the
pangs of displacement and disrupted routines be offset by the pleasures
of being around adult children and grandchildren?
Dr. Alison Webb, a retired physician, is a single mom raising a
3-year-old and a 7-year-old. Her father, Bob Webb, 81, has mild dementia
and had been hospitalized for depression before she asked him to leave
assisted living and move into her Seattle home.
“Initially he resisted. He feared change, and he was concerned that
his stuff was going to be left behind and he wouldn’t get it back,
ever,” Webb said. Even today, Bob talks about going back home to his
apartment.
Webb said a geriatrician on a Facebook group for female physicians
convinced her it was safer for her father to leave his assisted living
center. “‘You’ll do a lot better here with the grandkids. You can play
games. There’s a big yard. You can do some gardening,'” Webb said she
told her dad.
There’s another benefit. Because she’s a physician, Webb said, she
hopes “I’ll notice if he’s not doing well and take care of it right
away.”
Coleen Hubbard’s mother, Delores, whom she described as “really
resilient and really stubborn,” had loved living in a one-bedroom
apartment in a Denver senior housing complex for the past decade. In
October, Delores was diagnosed with endometrial cancer and decided not
to have medical treatment.
“Mom had a lot of surgeries and hospitalizations in her life,” Hubbard said. “She was done dealing with the medical community.”
Every time Hubbard suggested her mother move in with her, Delores
refused: She wanted to die in her own apartment. But then, a few weeks
ago, serious pain set in and Delores asked the Denver Hospice to begin
giving her morphine.
“That’s when I realized that we may be close to the end,” Hubbard
said. “And I felt an incredible urgent panic that I had to get her out
of there. Things were already starting to close (because of the
coronavirus). I could not fathom that she might be cut off from me.”
Hubbard prepared a room at home and found a small, tinny metal bell
that Delores could ring if she needed help. “We made a lot of jokes
about Peter Pan and Tinker Bell,” Hubbard remembered. “When she rang the
bell, I’d come in and say, ‘Yes, m’lady, what’s happening?'”
Five days after arriving, Delores passed away. “Grieving right now
happens in a space of solitude and silence,” Hubbard wrote in a Facebook
post. “Sure, there are texts and phone calls,
emails and snail mail, but no embraces, no questionable casseroles
delivered by neighbors, no gathering of family and friends to share
stories and memories.”
Amid the grief is relief that Delores had what she wanted: a death
without medical interventions. “I’m pinching myself that we made that
happen,” Hubbard said. “And I’m so glad we brought her home.”
Patricia Scott’s story is unfinished. The 101-year-old was living in a
retirement community in Castro Valley, Calif., before her son, Bart
Scott, brought her to his house in Santa Rosa, moving her into a
spacious in-law apartment.
Asked how she felt about the change, Patricia Scott said, “I’ve never
been particularly thrilled with the idea of homogenized residency with a
bunch of old farts, of whom I am one.”
Yet, she longs for her two-bedroom apartment: “It’s just that
everything is there. I know where crap is. I miss my regular life.”
Bart Scott has four siblings, and they agreed that it was untenable
to leave his mother alone during the coronavirus scare. “She is the
matriarch of this family,” he said. “There are a lot of people who put a
lot of store in her well-being.”
As for potential health threats, Patricia Scott is characteristically
sardonic. “I was born in 1918, in the middle of the influenza
epidemic,” she said, “and I think there’s a delicious irony that I could
very well exit in this one.”
https://medicalxpress.com/news/2020-04-mom-home-pandemic.html
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