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Male Caregivers
A Growing Segment of the Alzheimer Community
P at Moffett, an energetic corporate executive, had spent
years caring for his wife Carmen, who had younger-onset
Alzheimer’s, when he received a stark message
from her doctor, Gisele Wolf-Klein.
“You’re through,” Mr. Moffett
remembers Dr. Wolf-Klein telling
him. “As we’ve been watching
Carmen, we’ve also been watching
you. Your weight has dropped
tremendously, your heartbeat is off ,
it’s racing all the time, you don’t
look well, you’re losing your color,
and all this is becoming very stressful
on you.”
The doctor ordered Pat to take a
three-week vacation while Carmen
went into the hospital. He started
sleeping again, he began to relax,
and he started fixing up the house
for Carmen’s return, though more
troubles loomed in his future.
Pat’s story is part of an important
shift in Alzheimer’s care, as more
men become responsible for looking
after relatives with this devastating condition. Social
science researchers have only begun studying these male
caregivers as a distinct group. Yet understanding these
men and their experiences is essential, both for helping
them stay healthy, and for getting them the resources
they need for effective caregiving.
Jed Levine, Executive Vice President of the Alzheimer’s
Association’s New York City Chapter, sees men as a vital
emerging group in his Chapter’s mission of providing
services and education. He’s concerned that not enough
male caregivers are taking advantage of what the
organization has to offer.
“What really dismays me is that only 20 percent of the
callers to our helpline are men,” says Levine. “I know
that there are more men out there who are providing care for a parent, for a spouse, or for another relative. I
want them to know that help and support is out there
for them.”
In the past 15 years, the share of male Alzheimer’s
caregivers nationwide has doubled,
from 19 percent to nearly 40
percent, according to two recent
studies by the Alzheimer’s
Association and the National
Alliance for Caregiving. And
that share will only increase as
Alzheimer’s cases in the United
States rise from about five million
today to an estimated 15 million
by 2050. With the disease afflicting
women at a higher rate than men,
along with less rigid gender roles
in our society, men will continue
shouldering even more of the
caregiving load.
This shift brings up special concerns.
In many ways, caring for a person
with Alzheimer’s has little to do
with one’s gender, with caregivers
almost universally facing physical
and emotional exhaustion, social
isolation, and financial hardship.
However, male caregivers often differ from women in
how they approach the demands of the role, and in how
they respond to its stresses.
As Levine’s experience with the helpline suggests
and available research bears out, men are generally
less likely to seek assistance, or will delay doing so,
sometimes adopting a “go it alone” mentality. Men may
compartmentalize caregiving, approaching it as a series
of tasks, or as an extension of their job. Men also tend to
hold in the emotions that arise during caregiving, or to
express them in a more restrained way.
Sharon Shaw, who supervises group leaders for the
Chapter and leads two groups herself, notices a
difference in how men express the emotional effects of
caregiving. Joining a group, says Shaw, “can be a learning process for men, who may be less accustomed to talking
about their feelings.”
Yet that initial discomfort does not mean men can’t
express themselves, Shaw stresses. One man’s being able
to talk about his emotions often opens the floodgates
for others, she has found. “There is a man in one of
my groups who has had a lot of psychotherapy in his
life,” she says. “He is very familiar with the language of
feelings, and he’s been a leader in helping other men
express themselves.”
What’s also clear is that these emotions — especially the
slow sorrow of losing a loved one with Alzheimer’s —
can build up and have a dramatic
impact on male caregivers.
Pat Moffett experienced this, with
his physical near-collapse closely
followed by an emotional collapse.
His wife Carmen had gone for what
he had thought was a three-week
hospital stay. He had begun to relax
and fix up the house for her return.
Then her doctor called to tell him
Carmen should not come home
and should instead enter permanent
nursing care.
“That crushed me completely,”
Moffett remembers. “A trap door
had opened up and Carmen fell
through it. It’s like somebody telling
you your wife just died. It’s on that
level. I had to go into therapy and
was on anti-depressants for months.”
Yet even as more men face the stresses of long-term
caregiving, they are also working to find meaning in the
experience.
Ted Comet, who has been a caregiver for twelve years,
takes inspiration from his wife Shoshana as he grapples
with what he calls the “open wound” of her Alzheimer’s.
Before she had this illness, she had turned her own pain
as a Holocaust survivor toward helping others, first in
work as an artist, then as a psychotherapist.
“She always made clear,” Comet says. “the biggest
challenge everyone faces is how we deal with trauma.
What’s the advice we usually get? Put it behind you
and move on. But there’s something profounder [sic] to
do, and that’s to use it, and transmute the trauma into
creative action and energy.”
Today, Comet puts this lesson into practice by trying to
help others, especially newcomers, in his support group.
He’s also made a booklet of the tapestries Shoshanna
wove, a DVD of her speeches about the holocaust that’s
now being shown in multiple classrooms, and has started
writing down the memories he has of her.
Pat Moffett also responded to his caregiving experience
with creative action, writing the well-reviewed book
Ice Cream in the Cupboard in order to “do something
for Carmen,” who had always loved reading, as well
as to increase awareness of younger-onset Alzheimer’s.
Moffett is now working on the screenplay for the book,
and continues working with a dinner group he helped
start especially for younger-onset
Alzheimer’s caregivers.
Pat Moffett and Ted Comet both
show that male caregivers can
find some solace, healing, and
community by reaching out to
others who share their experiences.
However, men overall still represent
only a fifth of callers to the New
York City Alzheimer’s Association
helpline, and that remains a
troubling indicator.
“I hear it from men all the time: I
wish I had known about you five
years ago, so we wouldn’t have had
to struggle without the support,
without the information that your
organization provides,” says Jed
Levine. “My goal is to make more
men aware that help is available.”
If you or someone you know are currently experiencing
the physical, emotional, social, or financial stresses of
caring for a person with Alzheimer’s, a wide range of
help is available. Call 1-800-272-3900 to learn about
the services that Alzheimer’s Association provides in the
New York City area.
Shortly after this article went to print, Ted Comet's wife
Shoshana passed away. The Chapter extends its deepest
condolences.
Jamie Bennett is a freelance writer living in Brooklyn and a
student in the Writing Division, Columbia University School of
the Arts.
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