Most of us become caregivers at some point in our lives – mates help mates,
parents take care of children before aging requires a role reversal, siblings extend
kōkua to each other. And we all do our best to look after aunties, uncles, and other
loved ones in our ‘ohana.
The National Alliance for Caregiving estimates that in 2009, 65.7 million people
in 31 percent of American households provided care to loved ones with various disabilities.
Nearly 13 million Americans are also part of the “sandwich generation”
– men and women in the prime of productive work lives who must simultaneously
be responsible for their parents and children – and sometimes their grandchildren,
as well.
In 2011, a “caregiver tsunami” officially began when 79 million baby
boomers started turning 65 – one every eight seconds. For the next two decades,
four million of us face an increased risk of Alzheimer’s disease every year,
an always-fatal illness. Five million Americans suffer from Alzheimer’s today;
that number is expected to increase to 13.5 million people by 2050. All will need
extensive caregiving, frequently over decades.
No wonder burned-out caregivers – overwhelmingly women – already are
labeled our nation’s “hidden patients.” Spending a minimum of
20 hours a week dealing with a debilitated loved one’s emotional, physical,
financial, and spiritual needs can overwhelm them to the point where they neglect
their own needs. Many caregivers die before their patient.
“When I see a caregiver, the first word that comes out of my mouth is ‘respite,’”
says Martin Johnson, Psy.D., founder of the Hawaii Center for Psychology.
“Taking breaks, even a few hours a week, isn’t just something nice to
do for themselves, but is essential for them to fulfill their role as caregivers.
“Usually their first reaction is, ‘I can’t possibly do that.’
The next is, ‘nobody can care for him the way I can,’” Johnson
says. “Caregivers suffer guilt, resentment, anger – all of those reactions
are normal and human – and worry about losing patience because they are exhausted,
stressed, and grieving. That is why it is essential that caregivers practice ‘self-care’
to keep some semblance of balance.”
Johnson tells his patients they must regularly go for walks, to the movies, have
meals out with friends, and spend quiet time alone reading, meditating, exercising,
or “anything that helps them prioritize their needs.” He assures them
it is important to their health to find substitute caregivers so they can have a
vacation without responsibility. He tells them there are a multitude of resources
available, both private and public, to help caregivers if they will give themselves
permission to seek help.
June Ching, Ph.D., a past president of the Hawai‘i Psychological Association,
says it is easy to establish credibility with her patients because, “I am
a ‘sandwich generation’ caregiver” who fights their daily battles
along with them. “I understand the stresses and must make an effort to take
care of myself, too.
“I used to think I was resilient and capable, but life now is a constant moving
target,” says Ching, who cares for elderly parents as well as her husband
and children. “Every time I think I have it under control, things change.
“Caregiving makes you give up perfectionism; often I just have to say, ‘this
is the best I can do,’ and let some things go.”
According to the American Psychological Association, 63 percent of caregivers are
at a higher risk for depression, illness, and accidents than the general population.