9/12/2003 News media contact: Tim Tanton · (615) 742-5470 · Nashville, Tenn.
NOTE: A sidebar (UMNS story #439), a UMTV report, photographs and audio clips are available.
A UMNS Feature
By Tom McAnally
Sharon Rhodes-Wickett. Photo number W03011, Accompanies UMNS #438
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Al
and Sharon Rhodes-Wickett go over the day's calendar during lunch at
their home in Los Angeles. The United Methodist clergy couple is
learning to deal with Al's Alzheimer's disease, which struck when they
were in the prime of their ministry and raising two young children. A
UMNS photo by Tom Keller. Photo number 03-295, Accompanies UMNS #438,
9/12/03
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The
Rev. Al Rhodes-Wickett plays the piano at his home in Los Angeles. He
was an effective pastor and a gifted musician before contracting
Alzheimer's disease, according to his wife, Sharon. The United Methodist
clergy couple is learning to deal with the disease, which struck when
Al was in his late 40s. A UMNS photo by Tom Keller. Photo number 03-296, Accompanies UMNS #438, 9/12/03
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Rachel Rhodes-Wickett. Photo number W03010, Accompanies UMNS #438
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Ben Rhodes-Wickett. Photo number W03003, Accompanies UMNS #438
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Music and Memories. Photo number W03009, Accompanies UMNS #438
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Like a computer virus, Alzheimer's disease has
invaded the home of a California clergy couple, Al and Sharon
Rhodes-Wickett, and turned their lives upside down.
The
comparison to a computer virus ends, however with the realization that
this disease that slowly steals memory cannot be stopped.
The
ordeal for the United Methodist family began when Al was in his late
40s. He had trouble completing tasks and became unusually forgetful. One
day, he forgot to pick up his young son, Ben, from school. When Sharon
was asked to serve as superintendent of the Long Beach District in 1990,
Al took leave from active ministry to be home with Ben and daughter
Rachel. Sharon served as a district superintendent for four years and is
senior pastor of Westwood United Methodist church in Los Angeles.
Al's condition worsened. After months of observation and tests, the diagnosis finally came: Alzheimer's.
Like
many people, Sharon had thought of Alzheimer's as a disease that
strikes the elderly. All of us know of Ronald Reagan and have seen the
blank stares of frail individuals who populate nursing homes. Here
Sharon and Al were, in the prime of their ministry, with two young
children.
"I had that sinking feeling that so many people have
when a disaster or a train wreck happens," Sharon recalls. "I just felt
swallowed up … my gosh, now what?" However, she wasn't surprised by
the final diagnosis, since Al's father had also suffered from the
disease. "'This is it,' I thought. 'This is what we are going to have to
live with.'"
Al was an effective pastor and a gifted musician
who used his brain a lot, according to Sharon. "He bought a computer
long before they were commonplace and began writing programs that were
more suited to what he wanted to do. Right now he can barely figure out
how to go online or switch the printer from color to black ink. It just
breaks my heart because he's really a smart person."
The husband and father they once knew is disappearing. Sharon sees the disease as death by a "thousand subtractions."
In
an interview with UMTV, Al describes the joy of being a pastor and the
pain of going on disability leave. "That was kind of tough because I
knew something was wrong, but then all of a sudden, bam, I'm out."
He
describes the disease as "microscopic little persons that like to eat
the memory (and) consider the newest memories to be the tastiest ones of
all." In addition to medication, he said he has fought the onslaught of
the "little persons" with three W's: walking, writing and wishing.
As
a pastor of a 600-member congregation, a wife and a mother, Sharon
finds herself in the dual role of caregiver and care receiver. She is
trained to care for others, a role she loves. But she admits that
receiving care, such as a weekly dinner for the family prepared by women
in the church, is difficult. "I feel like, well, I'm capable. I
shouldn't have to take help. I shouldn't have to receive this.
"I
really can't imagine going through this without being grounded in God's
presence," she says. "I know that God gives us the strength and
capacity to take the next step. I know that my future is different than I
thought it was going to be, but whatever it is, God's in it."
For
her, being part of a faith community is critically important. "So many
people tell me they pray for us all the time, and I know they do. It is
very sustaining to know there's that kind of support."
Looking
for a support group was almost impossible. "People can't believe that
someone Al's age has Alzheimer's," Sharon says. "When I went looking for
a support group, I was pretty much told that either you can have a
support group with people your age who are dealing with their parents or
you can join a spouse's group where everybody would be the age of your
parents.
"I wanted a support group for people like me - younger,
still working, with children." She finally found such a group, the only
one of its kind in Los Angeles County. "It is new and experimental," she
says. "We're writing the book."
Al is 58, Sharon, 54. Ben, 17, is a high school senior, and Rachel, 21, attends Scripps College in Claremont, Calif.
Because
her dad was so young when the disease emerged, Rachel says she has had
few places to turn for support. "I'm so glad I have my brother. He's the
only person I know my age that knows someone that has a dad with
Alzheimer's disease."
Although no one tracks early onset cases,
the Alzheimer's Association estimates that as many as 10 percent of
Alzheimer's patients, or 400,000 of the 4 million people diagnosed each
year, are younger than 65. An unknown percentage of that group is still
caring for children. Shin Yi Wu, a health researcher with the Rand
Corp., a Santa Monica Think Tank, told the Los Angeles Times that if
trends continue, more than 513,000 American men and women between 45 and
64 might be affected by the disease by the beginning of the next
decade.
Sharon expresses amazement at how the children are
coping. "What they're facing with their dad is really tough, and they
don't have the experience and the resources that come from being batted
around in life. I think there has been a drawing together for us, all
four of us, to figure out how do we get through this."
Ben ticks
off the accomplishments of a father who was a university math major,
musician, licensed pilot, and teacher in Africa, where he learned the
Shona language.
"He's the most amazing musician I think I've
ever met in my entire life," Ben says. "He's written three musicals and
is working on a fourth. He plays banjo, guitar, piano. He sings. He
does everything."
Watching his father's musical skills disappear has been painful. "He plays (the piano) every day, but he seems to get worse."
Because
of the disease, Ben says he has matured fast and appreciates things
more. Rachel agrees. "I credit some of our family's closeness to this
disease, partly out of necessity and survival, but partly out of a
genuine care and concern for each other."
Sharon and the children like to accent the accomplishments and good memories of their husband and father.
"It
truly is an unjust disease," Rachel says. "In my father's case, he's
lucky because he lived an amazing life. He did more than most people do
in their entire lives by the time he was 50. It is comforting to know
that he really did complete a lot of things he wished to complete before
the disease began to hit him hard." # # # *McAnally is a former director of United Methodist News Service.
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