3 family caregivers share their hard-fought battles
by Lee Woodruff, AARP,
August 28, 2019
En español | Until I became one myself, I
associated the word “caregiver” with nursing shoes, some kind of formal
training and the ability to administer a shot or change an IV line.
While those qualifications may be true, the
reality is that caregiving has many faces. And behind each person is a story, a
piece of advice, a pearl of wisdom or some nugget that can connect and carry us
through the hard days. Shared experiences and stories are what help us feel
less alone and isolated. They give us the juice we need to put our feet on the
floor and attack the day.
Carol Roche's husband Dave was diagnosed with
multiple sclerosis (MS) at 61 and in the five years since he has progressed to
using a walker at home near Milwaukee. She went from caring for her
mother-in-law with dementia, to becoming caregiver for her
husband, all of which has turned her into what she describes as an accidental
activist. Carol has learned volumes about MS and how to manage it, as well as
how to fight for parity, including handicapped parking spaces in her town and
registering her husband as a “fall risk.” What can others do to ease the burden?
“It would be nice if people reached out to help more. We have a great list of
friends, but people feel like they are intruding or don't know how to offer.
When friends ask what they can do, my answer is, be there to help before I have
to ask. It's hard to be the one always asking for help."
When my husband, Bob, was recovering from traumatic brain injury (TBI) one
of the best pieces of advice I ever received was to subscribe to the “chit
system.” At the beginning of a crisis or diagnosis, everyone swoops in and
wants to help in the midst of chaos. Give each person a verbal chit and tell
them you'll circle back when you have an idea or item with which they can help.
Using that advice, I was able to call on friends who were thrilled to have a
tangible way they could help, from fixing a broken hot water heater to giving
rides to soccer practice or picking up an extra grocery item. It enabled the
“givers” by allowing them to do something useful.
Eleven years ago in Southern California, Susan
Davis was thrust into the world of caregiving and brain injury at age 50 when
an aneurysm left her now-wife in a coma. “Karen woke up like a 6-month-old
baby, unable to care for herself or speak,” explains Susan. “Without a manual
and on a limited budget I had to learn everything overnight — from medication,
bathing and sourcing a caregiver — so I could return to work.” She soon learned
the No. 1 rule of caregiving: “You're going to lose yourself if you don't take care of yourself."
Today, while Karen can walk, talk, sing and
beat her at Jeopardy, short-term memory issues mean she cannot
leave the house alone. Finding patience is one of Susan's biggest struggles,
something we can all relate to. “I give myself a time-out,” she says. “I walk
away, go in my office and sometimes I call someone and say I just need to go
out and get a cup of coffee and a time-out.” She acknowledges that every time
she walks out the door, “it equates to a check I have to pay someone.” Like so
many caregivers she has to weigh the times and the level of importance in leaving
the home. “You're on call 24 hours a day, whether you have someone at home with
them or not. It all comes down to you.”
But through perseverance and incredible
planning, Susan was able to go from small time-outs to earning two master's
degrees on the East Coast. “I want everyone to know that anything is possible,”
says Susan.
In 2017, Amy Moss was 44 when her 19-year-old
son, Brandon, was shot in the head under circumstances that are still
mysterious. His life was miraculously saved by doctors, but as a single mother,
the real work began when he came home from his rehabilitation hospital. His
challenges include loss of mobility and memory, and he has found it harder to
connect with old friends, leaving him with a sense of isolation. The Moss
family lives in rural North Carolina, where the challenge to locate the
appropriate support services and assistance is even greater.
"I'm scared and anxious inside,” admits
Amy. “But as his mother I have to find the balance to deal with his emotions
and mine. Will he walk again? Will he be able to live independently? I try to
let him vent and we do a lot of talking and praying."
Amy tried to join a gym in March, knowing that
she needed to do something for herself, but even that was difficult since she
still needs someone to stay with Brandon when she goes out. Amy would love to
hear someone say, “Cry on my shoulder and let it all out.” And that's something
I can relate to in my own journey, but too often we feel as if we have to be
the strong one, the noble caregiver. “This is the hardest job I've ever had,”
says Amy. “And if something happens to me, my son will be in trouble. I urge
every caregiver to get their affairs in order."
When my husband returned home from the
hospital and was still recovering from his brain injury, I have a moment that
is seared in my brain. I was physically and emotionally depleted caring for him
and four young children. I'd gotten them all out the door to school and Bob to
his therapy and I suddenly collapsed on the couch, racked with sobs. I remember
a flash of light behind my closed eyes and a deep, measured voice in my head
telling me, “It's going to be OK.” I immediately felt a sense of complete calm.
To this day, I have no idea where that voice
came from. Perhaps it was an answer to my prayers and my crazy anxiety over
what our future would look like. But I will always remember that experience as
some kind of turning point that kept me going for the rest of that day and
beyond.
Do you have a moment when you were at your
lowest ebb and someone or something changed your outlook or energy level? I would love to hear your story.
Lee Woodruff is a caregiver, speaker and
author. She and her husband, Bob, cofounded the Bob Woodruff Foundation, which assists
injured service members and their families. Follow her on Twitter and Instagram.
No comments:
Post a Comment