By Judith Graham September
21, 2017
DENVER — Every time Jacque Pearson tried to
devise a plan to move her 81-year-old dad, who has Alzheimer’s, from his home
in Boise, Idaho, to hers in Denver, she felt stuck. Then, two weeks ago, she
had a breakthrough.
It happened at an AARP-sponsored session in
which Pearson created a “CareMap” — a hand-drawn picture showing all the people
she cares for as well as the people surrounding those individuals and her own
sources of support.
On one side of the paper, Pearson sketched out
her father’s situation. There were three friends from Alcoholics Anonymous and
his longtime doctor — the people he relies on most. There were three sisters
and two sons in Arizona, not very involved. And there she was, the primary caregiver,
far, far away.
As she peered at the drawing later that
evening, Pearson saw what she had to do. “I’m going to contact each of his
Alcoholics Anonymous friends and his doctor and ask them to convince my father
to come to Colorado,” she told me when I called a week later.
How could a quick sketch of stick figures
(representing the people in her father’s life), triangles (representing his
medical providers), arrows (representing relationships between people) and
box-like houses (where she and her father live) have this kind of impact?
CareMaps are an intriguing new tool created by
the Atlas of Caregiving, an ambitious project that
hopes to gather comprehensive data about family caregivers. The project’s pilot
study examined 14 families in the San Francisco Bay Area who wore miniature
cameras and sensors, kept a log of their activities and participated in extensive
in-person interviews.
One of the goals was to understand what Rajiv
Mehta, the project’s founder, calls the “ecosystem of family caregiving, the
relationships that surround caregivers and that shape their experiences.”
One family caregiver might be at odds with her
siblings but have a close group of friends she can turn to for emotional
support as she cares for a disabled husband, for example. Another might be
divorced but have a son living at home who can help with practical
responsibilities as he cares for his mother with Parkinson’s disease, who moved
in a year ago. Yet another couple in their 60s, both struggling with serious
illness, may rely primarily on their three children, all living nearby, but
have few friends.
How could these webs of relationships — people
who are caring for each other and who are cared for, in turn, by others — be
portrayed? Interviewers started drawing them quickly as family members were
speaking. Symbols were assigned to people, pets, health care professionals,
facilities and households.
Over time, refinements were added.
Bidirectional arrows, for example, could show support flowing between people in
both directions and the amount of assistance being provided (multiple times a
day, daily, weekly or occasionally). Instructions for drawing CareMaps —
anyone can give it a try — are available on the Atlas of Caregiving website.
At conferences, Mehta displayed some CareMaps
and was surprised by the interest they generated. Somehow, seeing these
pictures helped social workers, psychologists and other professionals
understand what caregivers were experiencing in a different way.
In California, the Santa Barbara Foundation launched a
series of caregiving workshops last year, using the CareMaps tool. Carol
Levine, who directs the United Hospital Fund’s Families and Health Care Project
and advises the Atlas of Caregiving, attended some of those sessions and was
struck by how many participants seemed to have “aha moments.”
“There’s something visceral about making these
pictures — it seems to open people’s vision to a broader view of what they were
doing as caregivers,” she said.
Phylene Wiggins, director of the community
caregiving initiative at the Santa Barbara Foundation, recalled leading a group
at one of the workshops. “After people drew their CareMaps, we started going
around the table and talking about their maps, and it was so heartbreaking,”
she remembered. “One by one, each caregiver said ‘I am so alone.’ ‘I am so
alone.’ ‘I am so alone.’” Encouraging those kinds of conversations and
discovering ways to address that social isolation are among the foundation’s
priorities, she said.
Cynthia McNulty, a social worker at Family Service Agency in
Santa Barbara County, said her agency is using CareMaps in individual and group
counseling sessions as a conversation opener. “Many of the people we work with,
especially Latinos, don’t even acknowledge themselves as caregivers,” she said.
“This is a useful way to shed light on the responsibilities they’ve taken on
and needs that might not be met.”
“There’s no stigma attached: You’re just
drawing a picture, not complaining,” she said.
AARP is testing CareMaps in six cities this
year — Charleston, S.C.; Denver; Houston; Los Angeles; Phoenix; and Tulsa,
Okla. It may roll out workshops more widely next year, depending on feedback.
And the Atlas of Caregiving is preparing a web-based version, set to debut by
year‘s end or early next year, Mehta confirmed.
In Denver, Alice Jordan, 69, is the primary
caregiver for her partner, Vickie, 64, who has multiple sclerosis. When she
drew her CareMap recently, Jordan saw that almost nobody was supporting Vickie
other than her brother Bob, the only one of four siblings who checks in to see
how she’s doing.
“MS isn’t a warm-and-fuzzy type of illness,”
Jordan said, when I contacted her after attending one of the AARP sessions.
“I’m going to call Bob and tell him how much we both appreciate him.”
For her part, Jordan initially felt that the
circle of people who care for her would be empty. “When we started doing the
diagram, it was like, ‘Bloody hell, I don’t have anybody,’” she said. But she
found herself drawing Steve, a neighbor, who helps out when she goes out of
town; Mary, a former colleague whom she walks with once a week; Onna, one of
her sons whom she has lunch with regularly; Irene, a friend with Parkinson’s
disease who’s always ready to talk; and her church, a source of comfort and
connection.
“It made me realize I had more support than I
thought,” Jordan said. And for that, she added, she’s very grateful.
We’re eager to hear from readers about
questions you’d like answered, problems you’ve been having with your care and
advice you need in dealing with the health care system. Visit khn.org/columnists to
submit your requests or tips.
KHN’s coverage related to aging &
improving care of older adults is supported by The
John A. Hartford Foundation and coverage of end-of-life and
serious illness issues is supported by The Gordon and Betty Moore
Foundation.
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