More and more guys are
stepping into the role and discovering the emotional and physical toll
by Liz Seegert | January 22, 2019
For Tony Tran, the
biggest problem was the isolation and cultural pressure to keep it in the
family. Barry Applebaum struggled with the stress and trying to remain stoic
for his kids. Larry Bocchiere lost a sense of normalcy when he had to retire
from his job.
What these men, and
millions of others like them, have in common is family caregiving—providing
ongoing help for an aging parent, a spouse who is ill, or both.
Although women still
make up the majority of family caregivers, more and more men are stepping into
the role: Some 40% of family caregivers are now men, according to the most
recent research from AARP and the National Alliance for Caregiving,
up from 33% a decade ago.
Like their female
counterparts, these 16 million male family caregivers face tremendous
challenges as they simultaneously try to balance work and raising a family with
the physical and emotional demands of helping an ailing or aging loved one. But
they’re also dealing with issues unique to their gender—from sometimes being
less familiar and comfortable with the more personal and intimate aspects of
caregiving to fighting stereotypes about the nature of their role.
One upshot: Despite
their large and growing numbers, male caregivers often feel invisible and
ignored, says Christina Irving, a social worker with the Family Caregiver
Alliance Bay Area Caregiver Resource Center.
That may be partly
because they tend to distance themselves from the label. “Many men don’t
self-identify as caregivers,” Irving says, “they just see themselves as the
good husband, son or grandson.”
Here is a closer look
at the experiences and challenges faced by the growing numbers of male family
caregivers.
The son also rises:
helping Mom and Dad
Nearly half of male
family caregivers are helping an aging parent or in-law, making this by far the
most common care scenario, according to the AARP study. And contrary to popular
misconception, these men are not just lending an occasional hand: Some 63% of
male caregivers are their loved one’s primary helper, the research shows.
Count Tony Tran, 52,
among them. Tran came to San Francisco with his family from Vietnam as a child.
As the only one of his six siblings who is unmarried, the bulk of caregiving
has fallen to him as his mother’s dementia has worsened.
“While she’s
physically healthy, she needs 24-7 supervision because she wanders,” he says.
Tran took a
three-month unpaid leave from his job to care for her full time. It wasn’t long
before he was physically and emotionally exhausted. Even with community support
services and some help from paid caregivers, it was still a struggle. He says he
thought he could do it all, but never felt he was doing enough.
“Being a caregiver
can be very lonely and isolating, especially being an Asian man,” he explains.
Cultural pressures
and a tradition of filial duty make the situation even more stressful. No
matter how hard it is, he says, you don’t ask for help.
That’s why his new
job is so important. Tran now works part-time with the Family Caregiver
Alliance in the Bay area, doing outreach with their many Asian communities.
Taking on unfamiliar
responsibilities
Men are taking on tasks that go well beyond stereotypical male roles
of providing transportation, doing home repairs, and managing finances.
They’re handling
personal care—some 44% of male family caregivers help their loved one get in
and out of bed or chairs; one in three assist with getting dressed and going to
the bathroom; roughy a quarter help with eating, bathing, and showering,
according to the AARP report. More than half are also providing medical and
nursing help, including complex tasks like wound care, injections, or tube
feeding.
“Men
are less likely to ask for help and may be more reluctant to accept it, if
offered.”
Carol
Levine
United Hospital Fund
“We’re managing medications,
cooking, the whole nine yards,” says Jean Accius, vice president, independent
living and long-term services at the AARP Public Policy Institute.
These activities take
a significant toll on any caregiver, but men often find them especially difficult.“Men
are less likely to have any previous background performing these activities,”
Accius says.
The research backs
this up. More than half (54%) of the male caregivers in the AARP-National
Alliance of Caregiving survey reported they found it difficult to help the
people they are caring for with their personal, intimate needs.
Caregiving also
affects men and women differently, according to Carol Levine, director of the
families and health care project at the United Hospital Fund in New York.
“Men are less likely
to ask for help and may be more reluctant to accept it, if offered,” she says.
“They’ve been brought up to think they can do it all themselves, that asking
for help is a sign of weakness.”
Husbands are
especially challenged
That seems to be particularly
true when the person men are caring for is their spouse. Although just over
half of male family caregivers reported they had some help from other unpaid
caregivers, more than three-quarters of those caring for a spouse did not.
Barry Applebaum, 60,
has experienced both kinds of caregiving—and dealt with both in different ways.
He was raising five
kids in a blended family in Lancaster, Pa. while juggling a job in sales, when
he first began caring for his mother, who had multiple health problems. She
lived with his family for four years after his dad died.
But eventually, her
physical and mental health issues became too much to deal with, and he made the
tough decision to place her in a long term care facility. “It was very
stressful,” he says.
After his mother’s
death, Applebaum thought his caregiving days were behind him. But just a few
years later, his wife suffered a major stroke at age 50.
“At first, we were
under the impression she would get better, but she’s never going to be who she
was,” Applebaum says.
There is the emotional
and physical strain of caring for his wife: “No one thinks at age 50 your wife
is going to become a quadriplegic. She needed help with everything.”
And then there is the
financial strain. Huge medical bills and other costs lowered their bank
account.
“Can
I do this for the next 30 years, do I want to?”
Barry
Applebaum
Husband, father, son,
caregiver
“I changed jobs three
times because I had to stay home and care for her—the insurance didn’t cover
what she needed,” he says.
The two had been
looking forward to becoming empty nesters, traveling and living life together.
“All of our dreams were taken away from us,” he says.
Issues of spousal
caregiving are totally different than caring for a parent, he says.
“My wife’s become my
child,” he says. “I had to realize, I can’t rely on my kids, I can’t share with
them everything I need to share. A lot of your friends eventually disappear.
You’re really alone.”
Sometimes, he
wonders. “Can I do this for the next 30 years, do I want to?” he asks.
His kids encouraged
him to talk to someone, and he eventually found the Well Spouse Association, a group he calls
lifesaving.
“For me, it was about
relating to people who were in my shoes,” he says. “This is the new
normal.”
Work hours on top of
care hours
Men and women also
often face different challenges juggling caregiving and work. About two-thirds
of male caregivers in the AARP survey were likely to work full time while caring for
a loved one, compared with 55% of women. Most employed male caregivers worked
40 or more hours a week.
Unlike some European countries, there’s no national paid family leave
in the United States. The Family and Medical Leave Act assures some employees
time off to care for a sick parent or child without putting their job in
jeopardy, but employers don’t have to pay you.
Only a handful of
states—New York, California New Jersey, Rhode Island, Washington State and the
District of Columbia—have a paid family leave policy. But many caregivers must
use vacation and sick days, or cut back to part-time employment. Some
quit their jobs all together.
The AARP survey
found, for example, that 62% of male caregivers had to make changes in their
jobs to accommodate their responsibilities for their loved one, including 15%
who took a leave of absence or shifted from full-to part-time work and 6% who
retired early or gave up working entirely.
Like trying to spear
a mammoth
Larry Bocchiere falls
into that last category. He chose to retire early from the U.S. Postal Service
so that he could care for his late wife, who had emphysema, a progressive lung
disease.
Now 67 and remarried
in Bethel, Conn., Bocchiere looks back at his time as a caregiver.
“The first few years
weren’t too bad, but as she got sicker, her activity decreased,” he says. “I
had to assume a lot of household duties and eventually help her bathe and even
get to the bathroom. “
It wasn’t easy.
“You learn how to do
these things because you have to,” he says.
How was it different
for him as a man?
“A man looks at a
problem and tries to fix it,” he says. “It’s real easy to get frustrated when
you can’t fix it. That’s what happens with a chronic illness.”
“A
man looks at a problem and tries to fix it. It’s real easy to get frustrated
when you can’t fix it.”
Larry
Bocchiere
As her condition
worsened, Bocchiere left his job, giving up one of the few things that had kept
him grounded.
“We started losing
touch with our friends,” he says.
There were fewer
people left to lean on, “which made it really hard,” he says. He had to learn
how to give injections and manage a multitude of medications.
We used to take care
of each other,” he says. “Then it became like trying to spear a mammoth.”
Their town had no
services for caregivers like him. Bocchiere found a spousal support group about
20 miles away and “started learning how to keep myself sane.”
What caregivers of
both sexes need
The more society can
acknowledge caregiving, help people get information and de-stigmatize it, the
sooner people can reach out for help and support, according to Irving. “It’s
better for the caregiver and better for the person they’re caring for.”
Levine, author of
several books on family caregiving, says caregivers need
support, whoever and wherever they are. “I see this as a human responsibility,
not a gender-related responsibility.” Her advice:
·
Look
for and accept as much help as you can get.
·
If
you’re not ready for a group, find someone to talk to—a sibling, a good friend,
who will listen and offer helpful feedback.
·
Contact
your local Area Agency on
Aging which can point you to community-based resources like support
groups, respite care, or volunteers who can help with tasks at home.
·
Take
care of yourself first. You can’t do a good job for anyone if you’re
overstressed and neglect your own health.
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