My mother, an 86-year-old widow, lives alone in a
small town in the farming country of central Kansas.
Born and raised in the town, she returned there with
my father after his retirement, leaving the big city
in order to spend their “golden years” with her
sisters, brothers, and childhood friends back home.
Unfortunately it wasn’t long after my parents’
return that the siblings became ill and died; many
of the old friends died as well. Mom took care
of her family, one by one, through dementia,
strokes, and cancer; and just when she thought she
could take a break, my father was diagnosed with
Alzheimer’s disease and her caregiving resumed
again. During those years, Mom had her own
share of health problems that required the care of
family, and that care always fell to me. Like
mother, like daughter.
I
moved from Kansas to Colorado back when my parents
had plenty of family and relatively good health.
But over the last 20 years, in addition to regular
visits, I’ve probably made two dozen trips to Kansas
to be with them during each health crisis.
When my father was in the late stages of
Alzheimer’s, I frequently went home to relieve my
mother and helped her move him to a nursing home a
few months before his death.
My brother
lives only an hour from my mother and he provides a
lot of support—but of a limited kind. My
sister also would be willing to help, though she
freely admits she is not a nurturer. Having a young
son with health problems makes it difficult for her
to get away. It appears that I’m the ideal
caregiver: female, nurturer, no kids.
My mother’s most recent health problem is a
condition that has caused her much discomfort and
stress for more than a year. Her doctor has
been reluctant to recommend surgery to correct the
problem because of Mom’s age and history of heart
disease. Mom has tried her best to live with
the condition, but finally she can’t deal with it
any longer and insists on the surgery, with the
understanding that the choice could endanger her
life. Soon after, Mom calls to tell me about the
planned surgery. Though she doesn’t ask me to come
home, I know she’s hoping I’ll volunteer.
After the call, I switch into “caregiver mode,” and
everything else in my life takes a back seat to
Mom’s urgent need and my concern for her. I
quickly arrange for unpaid leave from work.
It’s easy to do, thanks to employers and co-workers
who are sensitive to the issues of family
caregivers, but still I feel guilty about leaving.
I find myself justifying the need to go by
explaining, “Mom’s 86 and she has heart
problems...,” as if the surgery alone isn’t
important enough to require my leaving to be with
her. I know my employers understand, so why do
I feel the need to dramatize?
On the
long drive to Kansas, I have too much time to dwell
on the possible outcomes of Mom’s surgery.
She’s basically strong, but she is 86. Will
she come out of the anesthesia? Will her high
blood pressure cause a stroke? Will she have a
heart attack? Or maybe, just maybe, will she
be fine? I remind myself that Mom has
weathered dozens of health crises. Whatever happens,
we’ll find a way to deal with it. But in the
background, in spite of my “Whatever will be, will
be” line, is the whispered prayer, over and over:
“Please let her be okay, please let her be okay ...”
During the drive, I also have a talk with
myself about taking care of me while I’m taking care
of Mom. Usually, in these situations, I become
Super Caregiver—that amazing and tireless woman who
handles rude nurses, bodily fluids and insurance
forms with equal aplomb. A lot gets done, but
“little me” gets lost when that mission-driven woman
takes over. This time, I’ll try to keep a bit
of time for myself and remember that I don’t have to
be the perfect caregiver. Perhaps there can be room
for Adequately Competent Caregiver and me.
I
arrive at my mother’s home on Saturday night, and we
have all day Sunday to catch up, pack her bag, and
talk about her hopes and fears. Early Monday
morning, Mom checks into the hospital, and we spend
some time in her room before the orderlies come to
wheel her to the OR. I think a lot of “last
time” thoughts: last time to tell her I love
her, last time to hold her hand, last time to hear
that she loves me ... I’m painfully aware of the
possibilities. After the surgery begins, my
brother and I sit together in the waiting room
making small talk and looking up every time somebody
walks by. Finally, several hours later, the
surgeon comes to the room and tells us that Mom is
fine, and my brother and I breathe simultaneous
sighs of relief. (Whew. This is not the
“last time.” Thank you.)
The
next few days are a blur of long hours spent sitting
by Mom’s hospital bed, fluffing her pillows, giving
her water, calling the nurses, straightening her
blankets, entertaining her visitors, walking her and
her IV pole and catheter bag up and down the halls,
and making quick trips to her house for meals and
sleep. Mom does well in spite of minor
complications and sleepless, noisy-hospital nights.
Each day she’s a little more energetic, and each day
I’m a little more tired. By Thursday, she’s
well enough to come home and I’m nearly exhausted.
But I have only two more days to spend with her, and
I want to enjoy the time and get as much done as
possible before I go.
Once Mom comes home,
my adjunct care becomes primary and hands-on.
She needs help with bathing and toileting and things
get a little messy, so I put on my “this doesn’t
bother me” face and clean up. I know she
thinks I can handle anything (after all, I used to
work on an ambulance), but inside I’m reeling a
little. I’m glad she’s not embarrassed in
front of me, or maybe she’s just putting on her
“this doesn’t embarrass me” face. If she can
give up her modesty, I guess I can put aside my
squeamishness.
Right now, we don’t have
the luxury of indulging in either.
Before I leave for Colorado, I make
arrangements for home health care: someone to
help Mom with bathing, housecleaning, grocery
shopping and meals. Her nieces and nephews
call to check on her, and I imagine I hear
disapproval in their voices when I mention outside
care. One offers to take Mom to her home and I
am both touched and a little offended. Does
she think I should do more to help her? Does
she understand that I can’t stay here indefinitely
and that Mom couldn’t—and wouldn’t—come home with me
to stay in Colorado?
My brother visits Mom
often while I’m there, and he sternly advises her,
“Mom, you’re going to have to give up your gardening
now and take it easy.” I know he means well
and only wants to hang on to her as long as he can;
but after he leaves, I counter with, “Mom, please,
keep gardening and walking and doing all of the
things that make you happy. Don’t give up any
part of your life until you have to.” We talk
about the benefits of staying active and
independent, and Mom agrees that she wants to go out
kicking. (I like to imagine that when her time
comes, she’ll keel over into a flowerbed with a
trowel in one hand and a fistful of weeds in the
other; but I know her passing isn’t likely to be
that easy.)
By Sunday morning, when
it’s time for me to go, I feel reasonably
comfortable that Mom will be all right on her own,
with help from the health care agency, her good
friends and neighbors, and my brother. Still,
it’s hard to leave. I always wonder if I’ll
see her again, and it saddens me to know how lonely
she’ll be after our non-stop time together.
Nevertheless, I climb into my car and pull out of
the driveway, and Mom smiles bravely and waves
goodbye.
Driving away from her house,
I start to cry—from tiredness, from relief, from
knowing that there will be another crisis all too
soon. Mom made it through this time, but next
time—or some time after—she won’t, and I’m already
starting to grieve. I know that I can’t cure
her or hold on to her; I can only love her and be
there when she needs my care. Sometimes, that
doesn’t seem like a lot, but of course it is—it’s
all we ever have—and I’m thankful that I’ve had the
chance to love her and care for her once again.
Nine more hours of driving … better stop for a cup
of coffee.
Emily Cooper, a resident of
Longmont, Colorado, is Caregiver Initiative
Coordinator for Boulder County Aging Services
Division and editor of “Care Connections,” a
bi-monthly newsletter for caregivers, in which this
article previously appeared. Emily remains a
sometimes caregiver for her mother, who is now
92—and still gardening.
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