Four years ago, Kate Phillips became a family caregiver without quite realising
what she was getting into.
Her father, then in his late 70s, was recovering from a series of surgeries
in a Denver nursing home, which was pressing the family to make other
arrangements for him.
Phillips, living near Seattle with her teenage daughter, and her brother
felt that returning to independent living at a distance from them would be
"disastrous" for their father, who was showing signs of mental
"The thought was 'I had a big house and I've got plenty of room – he
might as well move in with me,'" she recalled.
Today, Phillips' father still lives in her home. In hindsight, she said, the
arrangement might not have been the best choice.
With an ageing US population, many adult children struggle to care for
parents with Alzheimer's
or other forms of dementia without enough support to do so.
for Alzheimer’s care
Yet these informal caregivers provide a huge service. According to an
Alzheimer's Association report, they provided about 17.5 billion hours of
unpaid care in 2012 alone, "a contribution to the nation valued at more
than $216 billion".
Recently, a Johns Hopkins study delved into the lives of some Baltimore
residents with dementia and their informal caregivers.
The vast majority of volunteer caregivers lacked referrals to resources for
professional assistance or service. And they lacked education on how to perform
the day-to-day tasks of being a caregiver.
About three-fourths of caregivers were women. Their average age was 66, and
they spent nearly seven hours a day providing care.
Safety a constant concern
For Phillips, the reality of being a caregiver came swiftly. "Probably
within the first 10 days," she said.
Three days after moving in, since she didn't yet have a grab-bar installed
for her shower, her father instead took a bath. But he didn't have the muscle
strength to get out of the tub. She couldn't get him out either and she had to
Phillips' father also has diabetes,
and keeping his diet
and blood sugar in check is challenging.
Caregiving means meeting his small needs throughout the day: restroom and
hygiene reminders, bed changes, and meal preparation and supervision.
"Everything's got to be served, plated, and portioned and whatnot,"
Safety is an ongoing concern. One day, Phillips' father built a
"roaring, roaring fire" in the wood-burning stove in their living
room. He left the stove door open, she said, and she came home to find the fire
"sparking 12 inches away from the carpet."
With incidents like these, Phillips felt less and less able to leave him
"I just basically changed my entire career in business so that I could
work from home," she said. The financial impact, she noted, has been
Among caregivers with jobs, about 65% report having to go into work late or
leave early because of their caregiving duties, and one in five has had to take
a leave of absence, according to the Alzheimer's Association.
Family caregivers report positive feelings such as family togetherness and
the satisfaction of helping each other, the association also found. But 67% of
dementia caregivers report high or very high levels of emotional stress.
A personal decision
Whether it's best to take a parent with dementia into your home "is a
personal decision," said Beth Kallmyer, vice president of constituent
services for the Alzheimer's Association.
"One of the things that I talk to families about is what the impact
might be," Kallmyer said. "It can be different for everybody. But you
can walk it through... 'Do we have space, first of all? Are we going to be
able to provide the right level of supervision as the disease progresses? How
are we going to do that? What's it going to mean to my relationship? What's it
going to mean to my kids?'"
Services and programs are available, Kallmyer stressed, including through
the Alzheimer's Association 24-hour helpline, federal and state elder care
locators, and local caregiver-support networks.
for someone with Alzheimer's disease
Phillip's father now spends two days a week in an adult day health program.
It's professionally staffed, it's social, he enjoys it and he "comes home
with a sparkle in his eye," Phillips said.
The respite is important to her as well. For a few hours, she can turn off
the feeling she has as a caregiver -- "like you're always failing, not
doing enough for yourself or your loved one."
Sara Shelton, a gerontologist and owner of Seattle Aging Solutions,
described some of the tipping points when caregiving at home becomes too
"A lot of times with Alzheimer's or dementia there's changes in sleep
patterns. So you're sleeping during the day and up all night," Shelton
said. Or, she said, it's a change in the person's condition, when the physical
demands become too great for just one person.
But most often, she said, the breaking point "usually comes down to
emotional stress – the caregiver begins experiencing anxiety or physical
problems they can't manage."
The Phillips family is starting the transition process.
Phillips is working with Medicaid through a program called PACE (Program of
All-Inclusive Care for the Elderly) to get her father on a waiting list for a
long-term care facility that would meet his medical needs. She believes the
change will benefit them both.
"I feel like I have kind of a vision of life after caregiving again,
which is great," Phillips said. "And also, I think I've come to the
recognition that it would be nice to be my father's daughter again and not be
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