MIAMI - In
the United States, someone develops Alzheimer's disease
every 72 seconds.
Someone, too,
must rearrange their life to become a caregiver. A daughter
must be there to remind her mother who her grandchilden are.
A husband to brush his wife's teeth. A grown child to keep a
parent from turning on the stove.
"It is
the most terrible thing in the world to have someone go
through," said Iraida Garcia, 55, of Kendall, Fla., who
takes care of her 79-year-old mother, Irma. "The body
is there but the mind and the memory are not. You sit and
you look at them and talk to them. And there is no
connection. And as selfish as it may sound ... it's really
hard on me."
While the
consequence of caregiving has been a trendy subject among
sociologists, very few have studied the impact on Hispanic,
African-American and Haitian-American caregivers in South
Florida.
Until now.
The
University of Miami's Center on Aging is rolling out a
two-year project that will evaluate the toll of taking care
of a loved one on nearly 200 caregivers of color in South
Florida. Nationwide, 9.8 million people provided unpaid care
for someone with the disease in 2007, according to the
Alzheimer's Association.
"People
don't plan on becoming caregivers," said Dr. Sara Czaja,
co-director of the center and principal investigator on the
project. "It's something that just happens to them.
It's not one size fits all. Culturally, we have different
ideas about family, about caregiving - maybe technology can
play a big role."
MAKING A
CONNECTION
Part of the
program involves connecting caregivers to others through
video phones installed in their home. Through their video
monitors, they can reach out to other caregivers, social
workers or medical experts and watch pre-recorded videos
about caregiving and Alzheimer's.
"I've
never been able to get out to a support group," said
Celestine McCrea, 63. McCrea spent much of the last 10 years
taking care of her mother, Leona Cooper, who passed away in
July at 87. "I never left my mother alone."
In her years
of caretaking, McCrea had read a lot of literature on the
disease but didn't know many other caretakers until she
started attending the tele-support groups from her home.
"I've
never met them," McCrea said. "But I do feel like
I know them. I knew other people went through this, but I
had no idea how much so."
McCrea, an
only child, moved her mother from South Carolina to her
Miami Gardens, Fla., home after she had her first heart
attack in 1998. Five years later, "she started acting a
little differently."
It was
Alzheimer's, the mind-destroying illness that robs people of
their memory, their personality, their perceptions of
reality. While there is no cure, a new experimental drug is
showing promise in halting the progression of the disease,
according to research presented last month at an Alzheimer's
medical conference.
For McCrea,
the next five years were consumed by doctors' appointments,
pharmacy runs and worry over her mother's erratic behavior.
"She
went through quite a few stages," McCrea said.
"She was very violent, she would throw things at me.
She would try to leave the home. She would just start
walking. Then I'd find her and she'd say I wasn't her
daughter."
Her mother
broke her shoulder, had several more heart attacks and
eventually stopped walking.
"Caregiving
is socially isolating," Czaja said.
McCrea, a
retired great-grandmother, gave up much of her life. "I
used to be very active in my church, singing in the choir,
volunteering. I have not attended church in 10 years."
Struggling
with her own health problems - diabetes and vision loss -
she started experiencing anxiety attacks.
"The
first one I had, I was in the emergency room and all I could
think about was who was going to take care of my
mother," she said.
This is
common behavior, says Dina Caceres, a therapist at
University of Miami's Center on Aging.
"Caregiving
is like a full-time job. If you have a conversation with
them, they don't talk about how they are. And what we keep
seeing is one person who's sick taking care of another
person who is sick."
Raul Pere,
78, has been taking care of his wife of 54 years, Reinaida,
since she started displaying symptoms of Alzheimer's eight
years ago. He suffers from diabetes and gout and now,
depression. Part of the study group, the Northwest Dade man
says his depression reached such levels that his doctors put
him on anti-depressants, which he says are working. A 2002
study in The Journal of the American Medical Association
found one-third of Alzheimer's caregivers have symptoms of
depression.
A little over
a month ago, Pere had the video hooked up in his house.
"There are people who have support systems built in.
But for me, it's just me and my wife. So this is good. I can
get therapy without even leaving my house."
With
Americans living longer, 7.7 million are projected to
contract Alzheimer's by 2030 - double today's rates. That is
expected to create a physical, emotional and financial
strain on caregivers, as 70 percent of people with
Alzheimer's live at home, according to the Alzheimer's
Association. A 2003 study by The New England Journal of
Medicine found that 72 percent of family caregivers said
they experienced relief when the person they were caring for
died.
___
WHAT'S
EXPECTED
For McCrea,
relief is the farthest thing from her mind.
"For 10
years my mother has been my life," she said. "I
don't know what to do now."
For Garcia,
caring for her mother is what she always expected.
In Venezuela,
where her family is from, children, often daughters, usually
take care of their parents in their old age. Garcia has five
brothers who live in Venezuela. Garcia, who is divorced,
lives with her mother, her daughter, her son-in-law and two
grandchildren in a Kendall, Fla., apartment. Her mother's
illness is in the early stages.
"She's
still OK," she said. "She remembers things that
happened 45 years ago, just not five minutes ago. I can
leave her alone. It will get harder as she gets worse."
For Pere, he
worries his wife may outlive him. "It's because I'm
taking such good care of her - not as good as I'm taking
care of myself."
