Caregiving: A Special Report

The quiet force caring for an aging America. Explore the online version of this report.


wednesday , march 5, 2014


The quiet force caring
for an aging America

Barbara Tucker Parker gives her mother, Dorothy Tucker, 87, a bath at home in University Park, Md. Bathing Tucker involves hoisting her up a flight of stairs and persuading her to get in the water.

Endless demands,
relentlessness routine




caregiver continued on AA3

toward a crisis


itting at the breakfast table where the morning sun streams in,
Dorothy Tucker winces as the brush tugs at her hair. Her
daughter, Barbara Tucker Parker, strokes more gently, drawing
her mother’s long white ponytail through an elastic band. “Okay,
is it better?” she says. ¶ “Yes,” says Tucker, 87, a vague look in her
blue eyes. ¶ This is how their day begins. When Tucker wakes and
emerges from her bedroom, her daughter sets out her morning
pills and brings her shredded­wheat cereal with 2 percent milk and three prunes.
She kneels and pulls compression stockings over her mother’s legs to keep them
from swelling.¶ Each day, as Tucker Parker performs these rituals, she reminds
herself to focus on what her mother can still do. She can put in her false teeth by
herself, if they are set out in front of her. She can put on her clothes, if they are laid
out. ¶ But there is plenty of “can’t” since a 2009 stroke left Tucker with dementia.
Once a talkative, vibrant woman, she can’t hold a thought long enough to read a
book or carry on a meaningful conversation. She can’t be left alone, for fear she
will walk out the door and disappear. ¶ So Tucker lives with her oldest daughter,
one of millions of working Americans who also take care of an aging parent.


How to


Perhaps the most memorable moment of President
Obama’s State of the Union address in January was
when he introduced Sgt. First Class Cory Remsburg.
Nearly killed by a massive roadside bomb in 2009
during his 10th deployment to Afghanistan, the Army
ranger was found facedown in a canal. After nearly
three months in a coma and dozens of surgeries,
Remsburg — who was blinded in one eye — tried to
acknowledge the standing ovation on Capitol Hill by
standing up. But he needed help. At his side was his
father, Craig, who lifted his son from his seat. Once up,
Cory flashed the cheering crowd a thumbs-up.
It was a high-profile spotlight on this country’s tens
of millions of family caregivers, whom Obama has
called “humble heroes” who toil quietly, caring for
loved ones: a child with autism, a parent or spouse with
Alzheimer’s disease, or a wounded warrior.
“We are heading toward the caregiving cliff,” says
John Schall, chief executive of the Caregiver Action
Network. “Family caregivers are the backbone of longterm care services in this country, and I’m concerned
that we won’t have the capacity to meet the demand,
especially as the country ages.”
The Pew Research Center found last year that nearly
4 in 10 American adults identified themselves as a
family caregiver and the need is only growing.
crisis continued on AA2








The changing rhythm of life for many families
As Americans age, and living well into
the 90s or even past 100 is increasingly
common, the nation is facing a crisis in
caring for the elderly.
It can be particularly hard on the middle class — those not poor enough to
qualify for federal benefits for long-term
care and not wealthy enough to afford the
high cost of assisted-living facilities or
in-home helpers. In fact, much of the
daily care for aging parents is done by
family members — typically a middleaged daughter who also is juggling a job
and raising children.
It’s not always older relatives who need
help. Severely injured veterans and chil-

dren with special needs require constant
care, too. Neighbors and friends also are a
growing part of this quiet army of caregivers whom President Obama has described
as “humble heroes.” Many of them, he said,
“have put their own lives on hold to lift up
someone close to them.”
To spotlight an issue that is changing
the rhythm of daily life for many families,
The Washington Post recently held “Caregiving in America” forums in Chicago and
Seattle. Excerpts from speakers at those
events are included in this special report.
“Budgets reflect our values,” Illinois
Gov. Pat Quinn (D) told the crowd gathered in downtown Chicago. He said more


resources should be directed toward supporting caregivers. Without them, he said,
the financial toll on our health-care system
would be astronomical.
It’s a job with a high burnout rate, many
speakers said. Former first lady Rosalynn
Carter said caregivers need to take breaks
and talk to others facing similar circumstances. It’s critical not to be isolated, she
said in an interview. “The chances are that
we will all become a caregiver at some
point in our lives,” she said.
Rick Steves, a travel writer and television host, urged those caring for parents
with Alzheimer’s disease and dementia to
“take them out in public with no apolo-

gies. . . . It’s amazing to me how many
things can be closeted in this great nation
of ours.”
With demographic shifts and growing
worries about who will care for the aging
in years to come, there was talk of government incentives for in-home caregivers
and turning to the “young old,” those in
their late 60s and 70s, for help.
“I am a great believer in being useful,”
said Alene Moris, a women’s rights leader
in Seattle who at 85 has recently served as a
caregiver. She said the elderly don’t want
to be viewed as a problem, and certainly
can be part of the solution.

Heading for a care cliff
crisis from AA1
Once Craig Remsburg got the news that
his son was going to have a “lifelong recovery” from his war injuries, the family
scrambled to put a plan in place to help him
24/7 with family members and paid aides.
At first, Craig and his wife, Annie, commuted from their home outside Phoenix to
Tampa, where Cory was at a veterans’
hospital. With the joy that their son survived came the challenge of helping him
live — and no training manual for caregiving.
“As a father, probably my toughest moment was every time I had to get on an
airplane and go back to work, ” Craig
Remsburg said. But while in Tampa, “I was
able to watch my son come out of a coma,
slowly emerge into consciousness and start
doing things.”
Annie Remsburg ultimately quit her job
to help Cory with his physical therapy
full-time. After more than two years in
Tampa, Cory was transferred to a California facility for intensive physical and occupational therapy. Last year, he moved back
to his parents’ house and over the summer
to a specially equipped home nearby to
provide a “feel of independence,” although
he still needs someone around the clock to
help him with daily living.
In some ways, Craig and Annie Remsburg are among the lucky ones. Their employers, Telgian and Kelly Services, have
been flexible in allowing time off and Annie
was given the chance to take an extended
unpaid leave and work as a consultant.
Seriously wounded veterans are entitled
to many benefits for caregivers that the
private sector doesn’t offer. In his State of
the Union address, Obama urged businesses large and small to offer employees more
flexibility to all types of family caregivers:
“A mother deserves a day off to care for a
sick child or sick parent without running
into hardship — and you know what, a
father does, too. It’s time to do away with
workplace policies that belong in a ‘Mad
Men’ episode,” he said.
Schall said that in the past three to five
years, businesses have begun recognizing
the need to help employees who are also
caregivers. “We’ve gone from zero miles per
hour to 10 miles per hour,” he said, noting
that there is still a long way to go. But, he
adds, “if businesses are smart, they don’t
want to lose employees who are caregivers,
because to lose them, hire and train someone else, is actually more costly than providing flexibility.”

For parents of the growing number of
children with autism, “overwhelming” is
the most common word used to describe
caregiving. But that’s about all that is common across the autism spectrum. Jennifer
Berzok of Bethesda, Md., whose 9-year-old
son, Ben, received an autism diagnosis at
age 21/2, was told by a doctor, “When you
meet one kid with autism, you meet one kid
with autism.” Unlike cancer or other diseases that have a prescribed treatmentbacked
by science, caregivers for kids with autism
face a bewildering menu of expensive therapies that may or may not be effective for
their child’s issues.
“Given that autistic children often have
sleep disorders, parents are exhausted,”
said Julie Fisher, executive director of the
New York Center for Autism Charter
School (NYCA) in East Harlem. But, she
said, the “culture of the ‘super parent’
makes it hard for them to ask for help.”
Shaniqua Gregg said she feels lucky to
have “won the lottery” that allows her son

Joshua, 14, to attend NYCA. But it’s still
difficult at home. “Each year becomes
harder because his hormones are raging,
he’s unable to express himself and he’s 5-8
and more aggressive,” she says. “We don’t
have a lot of down time or a moment to
regroup or get away from it.”
As exhausting as it is now, perhaps the
hardest part of caregiving for a child with
autism is the realization, as Berzok says,
that “this might be forever. Ben might
always be dependent.”

Younger-onset Alzheimer’s
In 2006, when Jacques Benjoar of Silver
Spring, Md., was 52, he was driving down a
road he had taken countless times, but had
to think about which exit to use. At the
same time, he started to struggle with the
bookkeeping part of his courier business.
Without telling his wife, Kathleen Lockhart, he had a doctor do a full work-up, and
eventually found out that he was one of
about 200,000 people younger than 65 in
whom so-called younger-onset Alzheimer’s
is diagnosed each year.
Because there is no cure or effective
treatment for Alzheimer’s, caregiving becomes increasingly challenging as your
loved one loses the ability to communicate.
“It was an honor to help him get dressed.
He never said ‘thank you,’ but I knew he
appreciated it,” said Lockhart who had to
split her time between her husband and
making sure their two daughters weren’t
negatively affected by their father’s illness,
continually wondering, “Should I be up
there with him or down here with the
The girls were 12 and 6 when Benjoar’s
condition was diagnosed, and as it worsened, Lockhart says, “our older daughter
even joined me at asupport group. The kids
helped Jacques change the channel on the
TV, made him a sandwich or were always
on the lookout for him getting lost in the
house and they would redirect him.”
Benjoar eventually transitioned to a care
facility and died last spring at age 59. “We
were supposed to grow old,” Lockhart says.
Given Lockhart’s experience, she tells others dealing with loved ones with Alzheimer’s: “Get help and get it early. There is often
so much denial in many families it often
takes an outsider to help.”

The coming storm
An AARP study said that in 2010 there
were seven potential caregivers (typically
adult children ages 45 to 64) for adults
older than 80. But by 2050, that ratio may
drop to 3 to 1.
Unpaid family caregiving was valued at
$450 billion a year by AARP’s Public Policy
Institute in 2009, more than the federal
and state Medicaid budgets combined. To
help family caregivers, legislation was introduced in Congress late last year that
would guarantee up to 12 weeks of paid
family and medical leave annually that
would provide partial wage replacement
for working caregivers. “This law is absolutely needed — it’s just the right approach
— but given the current climate, I wouldn’t
give it great odds,” Schall says.
“It may be time for a bold idea,” he says.
Because of the coming demand for caregivers, he’s mulling over a “Caregivers Corps,”
modeled after the Peace Corps. He thinks
such a program could recruit from recent
college graduates by offering debt forgiveness, retirees looking for new challenges or
from the ranks of experienced caregivers
who want to help others when their own
responsibilities have ended because their
loved ones have improved or passed on.


Injured Army Sgt. 1st Class Cory Remsburg, with first lady Michelle
Obama, receives a standing ovation during President Obama’s State
of the Union address in January.


Vikki Helperin, 84, dances with her husband, Sidney, 88, a retired
anesthesiologist, at the Longevity Center at the UCLA Medical Center.

Helping families cope with
a loved one’s fading memory


Kaiser Health News


ust as they had so many times
during the past 60 years, Marianna and Albert Frankel stepped
onto the dance floor. He took her
hand in his and smiling, waltzed
her around the room.
“I remembered how it used to be and
we could really do the waltz and he would
whirl me around until I got dizzy,” said
Marianna Frankel, 82, who is 10 years
younger than her husband.
For just a few minutes as the music
played, she didn’t think about Albert’s
memory loss, the long days of silence or
how much he had changed.
The Frankels and about 20 others had
come to the University of California at
Los Angeles Medical Plaza on a breezy
Tuesday afternoon to learn ways to boost
the memory and help patients and caregivers cope with what had been lost.
“Why are we here?” asked Ashley Curiel, a psychologist and instructor at the
UCLA Longevity Center. “This is like the
gym for your brain. You are going to do a
workout for your brain.”
Gathered in a bright conference room,
they played games, told stories and used
images to improve recall. They did tai chi,
slowly moving their arms in the air and
breathing deeply. And, after chairs were
pushed to the side, they waltzed, memorizing and practicing the steps — left,
right, right, left.
Memory loss can have a profound
impact on patients, leading to an erosion
of independence, a sense of helplessness
and depression. Yet in some ways, it can
affect their caregivers more. It’s hard to
be the only one who can remember
shared times.
“It is extremely stressful for the
spouse,” said Barry Gordon, a professor of
neurology and cognitive science at Johns
Hopkins University School of Medicine.
“It is like taking care of a child . . . and it
never stops.”
That’s where the UCLA Longevity Center comes in — helping patients and
caregivers live with diseases that fray
their bond of shared memories. In addition to giving those with memory loss
techniques to improve recall, the program helps the caregivers better understand the disease and provides them with
a place to connect with others facing
similar challenges.
Psychiatry professor Gary Small, who
leads the center, said he and others are
researching how to strengthen memory
and brain function. In one study, they
found that doing physical and mental
exercises, managing stress and eating
healthfully can improve cognitive abilities.
Retaining memory, he said, is about
much more than recalling daily activities.
“It is really a sense of having control of
your life,” he said. “Your memory defines
who you are.”
Many of the memory-impaired participants in the UCLA program had successful careers as lawyers, doctors, professors, researchers. But now, their lives are
vastly different: More quiet. More confusing. More frustrating. Most of the patients have neurological problems that go
beyond basic aging; some have Alzheimer’s disease or other types of dementia.

Vikki Helperin, 84, started coming to
the memory program in December with
her husband, Sidney, 88, a retired anesthesiologist. His Alzheimer’s was diagnosed about four years ago. She hoped the
exercises would slow the memory loss.
“He can’t find the words he wants to
say,” said Helperin, who worked as a
psychologist. “And he is very aware of it.
That makes it doubly difficult for him and
for me.”
Helperin said she misses the conversations they used to have, as well as his
sense of humor, which made him the life
of the party.
“Part of what originally attracted me to
Sid is that he was so intelligent and so
quick- minded,” she said. “At times, I have
lost the person I married. . . . He is just not
the same.”
Because he has started to forget, she
has taken responsibility for everything
around the house. “I have had to change
as well,” she said. “Sometimes it is kind of
Sally Hanes, a former research analyst,
said watching her husband, a retired
statistics professor, forget is difficult at
best. “It’s heartbreaking. It’s so different
from what life was like before.”
Hanes said the program has meant she
gets to meet other caregivers and see that
her husband’s new and peculiar behaviors — such as collecting napkins or
closing all the blinds — aren’t unique. She
also has gained some tips, she said, including putting a bright-colored sticker
on the microwave to show him which
button will heat his coffee without causing it to explode.
Overall, she said, “it has probably
helped me more than it has helped him.”
During the last hour of the UCLA
session, those with memory problems
continued working on recall techniques,
and the caregivers gathered separately
for a more informal support group.
The caregivers reminisced and commiserated, and shared how their lives
have changed. One woman said her husband couldn’t follow the dialogue on
television anymore. Another said hers
asked the same question again and again.
Marianna Frankel told the others that
she had trouble getting her husband to do
much. Occasionally he likes to play Scrabble, but mostly he just wants to lie down.
“I’m afraid he’s regressing,” she said.
The memory sessions are the only time
he really talks to people, she said, adding,
“Al is just so different when he’s here.”
His memory loss is taking a toll on her,
too. Recently she was hospitalized with a
flare-up of rheumatoid arthritis — made
worse, she fears, by stress. It has been
helpful, she said, to talk to others in a
similar situation.
Frankel said she is realistic. Her husband is 92 and won’t ever be as sharp as
he was when they first took to the dance
floor decades ago. But as he led her
around the room, she enjoyed a glimpse
of the life once had. As the music wound
down, the Frankels took one last spin. He
wrapped his arms around her, and she
kissed him on the cheek.
Kaiser Health News is a national health policy
news service. It is an editorially independent
program of the Henry J. Kaiser Family







From left, Shirley Brooks, Beverly Island, Dorothy Tucker and Jacqueline Hamlin participate
in a movement and dance class at Iona Senior Services, an adult day program in Washington.

Barbara Tucker Parker pulls compression stockings over her mother
Dorothy Tucker’s legs to keep them from swelling.


Tucker, bottom center, is reflected in a mirror among framed photographs at her daughter's home in University Park, Md., where she lives. A stroke in 2009 left her with dementia.

caregiver from AA1
The day unfolds in her house as it does in a
growing number of homes across the country. A
combination of nurse and nanny, Tucker Parker
guides her mother through a world she can no
longer navigate alone.
The petite, high-energy Tucker Parker is a
costume designer for American University’s
department of performing arts. She lives with
her husband in a two-story house in University
Park, Md., where they raised two children, now
in their early 20s.
The couple used to run 10k races together
and go for long bike rides. They had planned to
spend this period of their lives doing some
traveling. But after the stroke, Tucker Parker’s
mother is not the same woman she remembers
having five books going at once and playing the
piano into the night. Seeing her now, Tucker
Parker said, “it’s horrifyingly sad.”
It’s also stressful. At a time when she and her
husband thought they’d be close to having an
empty nest, the nest is full again.
Their 24-year-old daughter, who lives on her
own, occasionally spends a night with her
grandmother if her parents need to leave town.
Their 21-year-old son, who still lives at home,
helps, too.
“But it’s ultimately my job,” Tucker Parker
says. “My husband is really good with her, but I
can’t abandon her to him. . . . It’s not his job to
watch her; it’s my job. I’ve taken it on, and she’s
my mother.”
So she incorporates her mother into her day.
On Tuesday nights, the mother sits quietly while
the daughter rehearses with a local choir. Three
days a week, the daughter drives the mother to
an adult day program at Iona Senior Services, a
D.C. nonprofit organization that provides her
with art therapy and fitness activities. Staff
members there have taught Tucker Parker caregiving techniques, little things that help such as

giving her five crayons instead of 20, so she
doesn’t become overwhelmed.
Iona costs up to $110 a day, however, and
although Tucker’s Social Security check helps
pay for some of it, her daughter can’t afford to
send her daily. So two days a week, mother
accompanies daughter to the costume shop and
sits amid the sewing machines and half-sewn
capes as college students come by for fittings.
Tucker was always artistic. In her daughter’s
shop, she is surrounded by work she did years
ago: a wooden table she painted a deep red with
gold trim; a fanciful rhinestone-studded crown
she made for a character in a play. On the walls
are her paintings — outdoor scenes with flowers
and sky that she thought would keep her daugh-

ter from feeling cooped up.
Tucker still likes to be helpful, so her daughter gives her tasks — sorting buttons, ripping
seams and, recently, inserting metal stays into
corsets for a production of “The Alchemist.” It
makes her happy, her daughter says, “when she
can do this thing and she feels a pride.”
Tucker Parker and her husband don’t take
vacations — it’s too hard to find someone they
can trust to care for her mother. They don’t even
go to a movie unless they can take her, too.
The relentlessness of the routine can feel
wearing. Bathing Tucker involves hoisting her
up a flight of stairs and persuading her to be
scrubbed in the tub. She sometimes resists.
“One day she’ll be fine and another day you’ll

Tucker Parker brushes her mother’s hair, just one of the daily rituals she
performs. Caring for her mother is “ultimately my job,” she says.

go in and she’s sitting there surrounded by all
her clothes, and she’ll take every single sock
out” of her drawer, Tucker Parker said. “It’s like a
child you have to keep doing for because they
don’t get older to do for themselves.”
Plenty of people place their relatives in an
assisted-living facility, but Tucker Parker does
not want to do that. “She knows my name, she
calls my name,” she said. “Where can I put her
that’s better than this? Who’s going to take care
of her better than me? Nobody.”
Tucker Parker knows she has it better than
many other caregivers, whose workplaces don’t
allow for dependents to tag along or who must
contend with dementia-related aggression or
anger. “She is grateful for it; she does say thank
you,” she said of her mother.
And caregiving has brought the whole family
closer together, said her husband, Art Parker.
“We work pretty hard to spell each other and
get some assistance from our children,” he said.
“I think it’s probably made us a little stronger.”
There are also moments of grace. Mother and
daughter like to sing along with Sirius radio’s
Elvis station. And they have made a game of
comparing the newspaper’s weather forecast
with what they see out the window.
“Flurries,” Tucker Parker reads from the paper.
The two look outside, where the sun is brightly shining, and her mother giggles.
“There are people who focus on it being a lot
of work,” Tucker Parker said. “It’s work, but
there’s also a lot of fun involved, and you have to
kind of give, to get it.”
One day, Tucker Parker says, she will feel lucky
to have had her mother so close by. Until then,
the routine repeats itself, from morning until the
end of the day. At night, there are more pills. And
then she squeezes toothpaste onto her mother’s
toothbrush, makes sure she takes out her teeth
after cleaning them and tucks her into bed.








Looking after the
family as a whole
Shilpen Patel
Oncologist, Univ. of Washington Medical Center


Caring in America’s Heartland
Gov. Pat Quinn
(D) Illinois


aregivers have servants’ hearts. I think we
always should understand that they have
that ability to help another person.
Service to others is the rent we pay for our
place on God’s Earth. That is why we have
to make sure everyone in our state and our country
understands how important caregivers are.
Our budget reflects our values, and so does how
we behave toward our parents and those who are
older than us. We have a program called Community
Care that we’ve spent almost $1 billion on for low­
income adults who need help to stay in their homes.

We want folks to be able to stay in their homes and
in their neighborhood. We have individuals [to help
older people] who are hired at modest salaries but
with benefits, and with an opportunity to grow in
the job. We also have a volunteer program called
Senior Companions, where folks who are at
whatever age can volunteer to be a companion to
somebody in their neighborhood or someone they
know. The heart of Illinois is the heart of a
volunteer. We want programs that engage everyone
and do things that are necessary — mow the lawn,
shovel the snow, listen and talk, read together,
watch television together. I think companionship is
very important.

From the health-care-provider perspective, when
a patient comes to me with their family, it is not only
about addressing the patient, but their support
structure as well. I’ll often spend just as much time
talking with the patient as I will with the family as a
whole, addressing their needs and making sure that
they are also well taken care of. If they’re not taken
care of, they can’t take care of the patient.
We are often taking care of our friends. I am
seeing that more and more as a health-care
provider — individuals come in and it is not
necessarily their children who are there caregiving
for them. It’s their best friend or their neighbor who
they’ve known for 20 or 30 years.


Record parents talking about their life
Joan Lunden
Journalist and caregiving advocate
In 1930, the average life expectancy in the
United States was 591/2. Today, it’s about 81 for
women and about 76 for men. The fastest-growing
part of the population today is the oldest old, those
over 100. They say that the person who will live up
to 120 has already been born. Now that’s exciting
— and that’s really daunting.
In the old days, you had one or two parents who
were going to have to be financially and
emotionally responsible for. But now when you
have parents and stepparents and each parent
remarries, you could have four or five people that
you feel emotionally and financially responsible for.
Start a conversation with your parents about
what they envision their later decades to be like. I
also highly recommend getting out a video camera
and asking them questions about what life was like
when they were young. This is going to be the most
priceless possession you’ll ever own.
Ask them what life was like when they were a
child. What was life like when your parents met?
And when you’re going down this road, make sure
you get all the health details of who had polyps
and who died of colon cancer. You’ll get it as long
as you take them down Memory Lane. Because
the older you get, the more you connect with your
past. You might not remember what you had for
lunch but you can remember a lot about your
young life.

Employers must
offer flexibility
Jack Watters
Vice president for external medical affairs, Pfizer
Caregivers are not sick. They don’t want sick time.
They don’t want unpaid sick leave. Caregivers are
active members of society who are doing an important
job at home and they’re also doing an important job at
work. [The challenge] is to get employers to
understand that. We all have to work from inside. We
all have to talk about it. I manage various people who
are caregivers. They can telecommute; they have the
flexibility. We just have to show it and talk about it and
just act and walk that walk. I think that’s how it starts.
Legislation makes people do what they have to do. But
I really believe that when corporations can start before
it’s required, that builds incredible loyalty and you want
to work there.


Embrace the
challenges of
Rick Steves
Travel writer and television host


When you are in a situation where you’re
dealing with a loved one with Alzheimer’s,
which is my story, take them out in public
with no apologies and let the public see how
you’re enjoying your life together. I think it’s
important to take [older people] out and let
them make a noise in the middle of a
concert. We made a point to do that and I
always felt support from people. It saddens
me to think that a lot of people never
venture out. They’re so self-aware or so shy
about it. It’s amazing to me how many things
can be closeted in this great nation of ours
because we have so many hang-ups and
concerns that way.


Seeking resources,
sharing support
Trudi Inslee
First lady, Washington state
The main thing for a caregiver to know is you’re not
in this alone. Don’t let yourself become isolated. Reach
out to the resources and share what you know,
because you have so much to offer. You can help other
people in the same situation and you’ll find you have a
lot of friends in the same boat. I’d like to see support
groups [for caregivers] just like book clubs everywhere.








What employers
can do to help
Donna Wagner
Associate dean, academic affairs, College of Health
and Social Services, New Mexico State University
I was interviewing employees of a large company
that had a really good package of benefits. One
employee was telling me that he needed to take his
father to his chemotherapy or he wouldn’t go. His
supervisor had told him that if he missed any more
time from work, he was going to be fired. So he stopped
taking his father to chemotherapy. A lot of the issue is
that managers are not 100 percent on board with this
culture change that needs to take place. In 10 years, I
hope that everyone in America will have an employer
who actually cares about employees’ ability to manage
their multiple roles. Whether it’s a small employer just
giving some informal flexibility or a large employer
saying, “You have a right to take this time off. You have
a right to sit in the office of the geriatric care manager
down the hall and solve your problems.”


Troubleshooting, and tailoring how you help
Rosalynn Carter
Former first lady


here are four kinds of people in the world:
those who are currently caregivers, those
who have been caregivers, those who will
be caregivers and those who will need
There are going to be many, many more older
people. We’re living longer. There’s the baby boom­
ers. There’s also the veterans coming home with
physical problems, mental problems, PTSD, trau­
matic brain disorders. Somebody’s going to have to
take care of them. There’s a dearth of geriatric
professionals and those who know how to care for

people with mental illness. There’s going to be a
greater need for them.
We [care experts from the Rosalynn Carter
Institute for Caregiving] go into the home of a family.
We ask them to name five problems they have and
then we work through the problems.
For instance, there was one woman whose hus­
band had Alzheimer’s. He wouldn’t go into the
bathroom. But he loved plants. And so when our
trainer, our care coach, was working with him, one
day they decided to put a plant in the bathroom. And
he went in and watered it. Now he goes in and gets in
the tub. He takes a bath and goes to the bathroom.
You have to tailor how you help.


Turning to church
Rev. Dennis Mitchell

The elderly don’t want to be a problem

Senior pastor, Greenforest Community Baptist
Church, Decatur, Ga.

Alene Moris

It’s a stress on people’s marriages, it’s a stress on
their careers, it’s a stress on their finances. One of the
most powerful, helpful things that a church — or any
organization can do — is connect people who’ve had
common experiences. There is something very real
about going through an experience with other people.
We call it the “theology of presence,” just being there.
The church is in a unique position to marshal
resources from the medical community, the academic
community, the public health community and certainly
the faith community. Being able to share information
and resources really gives people a source of
encouragement and a sense of hope.

Right now, we see the elderly as a problem. Why
don’t we look at the elderly as a resource? We want to
help. We don’t want to just be trying to keep ourselves
busy. I hate that. There are important things to do in life
and we need to be able to continue being useful. I’m a
great believer in being useful.
We’ve got all these healthy, “young old,” people who
go into retirement from 60 to 75 [years old] — and what
do they do with themselves? They want something
meaningful to do. I think we need to look at ways in
which they go into caregiving. They understand it.
They’re close to it. They see it. They know that they’re
going to be there.

Women’s rights leader





Finding help
Monica W. Parker
Assistant professor, Department of Medicine, Emory
Many people who are working can’t afford $17 an
hour for a caregiver for eight hours a day. If you’re too
rich to be poor — and too poor to be rich — you’re in a noman’s land. You can’t get somebody to come to your
house to take care of you or assist you. Maybe there isn’t
an adult day-care program near you. There needs to be
more services available for working families to help
them care for retired workers.
There’s a growing acknowledgment that many of us
are caring for our relatives and we do need assistance.
It’s affecting everybody. The people I come in contact
with feel a lot better when they know where to go for

A child’s duty
E-Shien Chang

The financial toll
Eleanor Blayney

Researcher, RUSH University Medical Center

Consumer advocate, Certified Financial Planner Board of

The Chinese community is one of the fastestgrowing populations in the United States, but we know
so little about their needs. A lot of the expectation is
intertwined with what we call “filial piety,” the
Confucian ideal that really dictates each child’s
obligatory responsibility to take care of their parents
when they grow old. However, there is a reciprocation.
Parents are also expected to provide overall guidance
and wisdom to their family member. When you’re
growing up, your parents are supposed to give you
unconditional love. But at the same time, the children
will also reciprocate in the way that the piety, the filial
care, is not only practical support, it’s not only material
support, but also emotional support. That’s really the
relationship, the expectation, that’s binding all the
families together.

We talk about a pain scale in the medical community, one
through 10. How bad does it hurt? If we had the same thing in
talking to caretakers about cost: What is your financial pain? It
probably would register nine or 10, if not off the chart. There are
ways to find cash [including] reviewing life insurance policies,
annuities. If the person qualifies for Medicaid, there is a way to pay
that caretaker under Medicaid. I’m not promising it’s a lot, but it’s
something. Tax planning is huge. A lot of expenses can be taxdeductible.
If a caretaker is named as a trustee on a trust, he or she can
often step in and make decisions about the financial assets without
taking title to those assets. So it can be an important mechanism
to have in place. For example, I have a trust, my daughter is trustee.
If I begin to get a little flaky and she gets a couple — or maybe three
— doctors’ opinions, she can take over. She can become my acting
trustee, governing anything that I put in that trust.


The excerpts on these pages are from Washington Post “Caregiving in America” forums in Chicago and Seattle that
were sponsored by AARP in partnership with the Ad Council, the University of Washington’s School of Nursing and the
Caregiver Action Network. Former first lady Rosalynn Carter and others were to speak at a third forum in Atlanta that was
canceled because of severe weather. Highlights of interviews with them are also included. The Washington Post maintains
full editorial control over the content of the forums and this special report. Video from the forums can be found at





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