| BY JEFF HANSEL Lincoln
Journal Star Shadows of ceiling
fans spin in the subdued light of Bonda Ehlers'
home.
Muffled
sounds of rustling pets and the bubbles from a
fish tank are the only interruptions of the
night's hushed silence.
At 1
o'clock, Bonda, 52, passes quietly down the
hallway.
On this
night, she is up early. Normally, her alarm wakes
her at 2 and 6 a.m. so she can get up and turn
her mother. On doctors orders, she will reset it
for 5, giving her four hours of uninterrupted
sleep.
"I
turn her at least every two hours during the
day," said Bonda, who has cared for her
mother, Martha "Mildred" Haeffner, for
the past three years. "I was doing it every
two hours at night. He said to go to every four
hours so I could get some rest." After
turning her mother in bed, Bonda caresses her
head, kisses her on the cheek and wanders through
the darkened hallway back to her bedroom. Martha,
78, is diabetic and has had quadruple heart
bypass surgery, several strokes and seizures.
"I
think of myself lying in one position for an hour
and not being able to turn myself. That would be
terrible," Bonda said. "I love to walk
and I love to go for walks, and I think it's
because both my mom and dad have lost their
ability to walk so early in life." Caring
for a loved one is not new to this family, and
they are not alone.
Nationwide,
there are more than 25 million family caregivers,
according to the National Family Caregivers
Association. In Nebraska 158,000 people are
taking care of disabled or chronically ill family
members and friends, a 1999 study released by the
Alzheimer's Association showed.
The care
they provide saves the health-care system in
America $196 billion a year, more than double the
amount spent on nursing home care, the Hospice
Foundation of America reports, citing information
compiled by the National Health Council.
In the case
of Martha Haeffner's family, caregiving is a long
tradition.
Bonda's
daughter, Marcie Sheets, 29, said her three
children remember their great-grandmother taking
care of their great-grandfather, and now they
watch Bonda care for Martha.
"Through
all the years that I've known my grandma, she's
taken care of somebody," she said.
Marcie said
her kids help their grandmother care for their
great-grandmother.
"They
like taking care of her. They like giving her
water. That's just part of their job when they go
over there. It's everybody's responsibility. It's
just what we do." First, Martha took care of
her own mother for about two years. Then, she
took care of Bonda's dad, William Haeffner, for
about eight years until she broke her leg and
could no longer lift him. He was still living in
a nursing home when Bonda and her husband, Chuck,
moved in with Martha.
Bonda took
on the role of around-the-clock caregiver
gradually. She started dropping by during
mealtimes to make sure her mom was eating
properly, and grandson Kevin Palmer lived in
Martha's basement and looked after her at night.
When Martha lost control of her blood sugar and
blood pressure, Bonda began monitoring
medications and meals. She would eventually quit
her job as a secretary at Nebraska Wesleyan
University, and she and Chuck rented out their
home and moved in with Martha.
Kevin, 25,
comes over most days after he gets off work as an
activities assistant in the Alzheimer's
activities unit at Lancastor Manor and helps his
mom turn and bathe Martha.
At first,
Martha could still play cards and feed herself,
but her medical problems took away one thing
after another.
If her
mother is uncomfortable, Bonda gives her drops of
pain medication from a medicine dropper. She
mixes her other crushed pills in a slurry of
yogurt or applesauce and feeds it to her mother
spoonful by spoonful, just as she feeds her
breakfast, lunch and dinner.
"You
just kind of watch the facial expression for
signs of pain," Bonda said. "She eats,
most of the time, with her eyes closed, just kind
of like a little baby bird." Bonda said
attending to her mother's personal needs --
giving her sponge baths, emptying her urinary bag
and cleaning her up after a bowel movement -- is
not as difficult as she expected.
"I
thought I would be real uncomfortable with it.
But, after doing it once, it's not a problem, as
long as I have my rubber gloves. That's just what
you do when you take care of somebody."
Sometimes, though, when the alarm clock rings at
2 a.m., it is 2:30 before she can force herself
to get out of bed. There are days -- she calls
them "weepy days" -- when her mother
takes a turn for the worse, and mortality seems a
little closer.
"My
mom's basically had to give up her life in every
sense of the word," said Bonda's daughter
Trisha Conroy, 31. "My grandma needs care 24
hours, around the clock.
"It's
kind of like a long-term grieving process,"
she said. "I've seen her become a little
depressed here and there. You can see sometimes
the effect the strain has on her. But she just
doesn't give in to it." A survey of 817
members of the National Family Caregivers
Association found that three out of every eight
caregivers were depressed, six times the national
average for clinical depression. Those who
reported depression were more likely to be
helping with such personal care as bathing,
dressing, helping with personal hygiene and
eating.
Bonda
Ehlers is not the only member of Martha's family
who sometimes struggles with emotions.
"There's
lots of guilt that goes along with having your
sister take care of your parent," said her
brother Bill Haeffner, 44, who lives in Lodi,
Calif.
He comes
when he can, but short-notice plane tickets are
expensive.
"We've
pretty much used up most of our vacation for
emergency trips," he said.
As a way to
participate in his mother's care and offer
support to his sister, Bill installed an 800
number so Bonda can call when she needs to talk.
Still, he
worries about his sister and the frustrations she
faces.
He saw
firsthand one of the aggravating facts of a
caregiver's life -- transportation. When William
Haeffner died April 1, the family ended up taking
Martha to her husband's funeral in a borrowed van
because they could not find public transportation
for any trip not deemed medically necessary.
In
frustration, they talked to a neighbor who
happened to use a wheelchair. He loaded Martha
into his own accessible van and drove her to the
funeral himself.
"Thank
God for good neighbors," Bill Haeffner said.
But
caregiving certainly has its rewards.
Bonda's
daughter Trisha Conroy said her family has
received much more in return than it has
contributed to Martha's care.
"She
still tells me that she loves me. That's
priceless. Nothing's worth more than the smile
that you see on the person's face. That is the
basic reward right there. They've given so much
of their life, the least you can do is give back
a little.
"I
would do the same thing for my own mother, I mean
I plan to do it for her when she needs it,"
Trisha Conroy said.
Bonda knows
her kids will be there for her.
"Marcie's
in charge of hairdo and wardrobe," she said.
"Kevin's in charge of back rubs and feet
rubs, and Trisha's in charge of mashed potatoes
and watermelon." The duties involved in
caring for her mother are endless, but Bonda is
well aware how important it is to take care of
herself as well.
"It
wouldn't do her any good if I got so worn out
that I couldn't take care of her any more,"
she said.
Still, she
doesn't get away often, and taking care of her
mom doesn't leave much time for her marriage.
She and
Chuck attended a marriage retreat in September,
the first time since February they had been away
from home overnight. Bonda had to find three
people to take care of Martha for the 34 hours
she was gone and leave three pages of notes so
everyone would know their responsibilities.
They had
plans to get away for their fifth anniversary as
well but had to change them.
"Our
wedding anniversary was Labor Day weekend, so we
had to cancel our anniversary plans because Mom
wasn't doing too good," Chuck Ehlers said.
Martha
Haeffner is now a hospice patient, not expected
to live longer than six months.
"When
she does pass away, it's going to leave a very
big hole in my life because she's been so much a
part of my life," Bonda said. "I wonder
what I am going to do when she's gone. I'll miss
her an awful lot. I'll have to start looking for
a job again and start restructuring my life.
"I'd
like to have her live forever, but I hate to have
her in this state, too," she said. "I'm
just glad that I do have faith in God and that
when I do have to say goodbye to my mom that
it'll only be until I can see her again some day.
"They
were very good dancers," she said of her
parents. "I learned how to dance on my dad's
toes. I stood on his toes, and away we'd go. I
like to think of my mom and dad dancing in
heaven. I like to just close my eyes and see mom
and dad dancing, dancing in heaven." National
Stroke Association: (800) 787-653; www.stroke.org
American Heart Association: (800) 242-8721;
www.amhrt.org Amercan Diabetes Association: (800)
232-3472; www.diabetes.org/default.htm
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