The
demands of caring for their aging parents are putting a strain on the
generation born after World War II. But the children of baby boomers
will face an even greater burden.
Maggie Jessen was once the death of her mother — a teenage wild
child who smoked and ignored schoolwork and left home at age 16 after
an argument with her father.
Now, she is the lifeline keeping her 91-year-old mother, Maurine Martin, out of a nursing home.
Maurine has lived the past four years in Maggie's home in St.
Paul, in a bedroom that Maggie's husband built in place of the back
porch. She is forgetful and hallucinates about cats and children.
Sometimes, she thinks her room is an apartment and calls her daughter's
house "the building."
Caring for Maurine takes energy and patience — whatever Maggie
has left after working with special-education students at Central High
School. Friends tell Maggie she's "done her time," but they don't
understand.
"You can't understand unless you've been through it," she said. "I mean, it's my mom!"
A cluttered nursing home may be the stereotype of elder care in
the United States, but spouses, friends and adult children provide more
than 90 percent of the care to the nation's frail and elderly. This
informal network is the backbone of the nation's long-term-care system,
and it will be needed more than ever as baby boomers age.
But studies show that caregivers such as Maggie are under strain and that the next generation will be overwhelmed.
Caregivers are prone to anxiety and depression, they suffer higher
rates of injury and chronic disease, and they sacrifice their jobs and
savings taking care of loved ones.
Perhaps the most tragic tale of family caregiving came in
Hudson, Wis., last month, when 83-year-old Claire Erickson allegedly
killed himself and his wife. Erickson's son believes his father was
trying to spare his children from the caregiving burden he endured for
years with his 81-year-old wife, who had Alzheimer's disease.
The pressure is only going to get worse. Many of today's
caregivers are boomers — the 78 million Americans born between 1946 and
1964. But soon the boomers will need the help, and they simply didn't
have enough kids — especially daughters, who most often step into
caregiving roles.
While the number of seniors increases by 2.3 percent each year,
the number of likely family caregivers increases only 0.8 percent,
according to Georgetown University's Center on an Aging Society.
Boomers may be expecting their children to help care for them,
but surveys show that their children haven't thought much about the
responsibility. Maybe they've envisioned stopping by the folks' house
to change a furnace filter, but most are unprepared for the more
demanding roles — the lifting, the changing, the help with showering —
that can be required.
"The discrepancy between who they think they should be and
their actual duties as caregivers can cause them great stress," said
Krista O'Connor, of Eldercare Partners, a grant-funded program in West
St. Paul that supports and trains family caregivers. "This can come
either way. They may feel stress because they're doing more than they
should, or they're feeling guilt over the fact that they're not doing
enough."
THE CHALLENGES
Maggie never envisioned being the primary caregiver for her
mother, and yet in some ways the role was handed down to her. Her
mother at different times took care of Maggie's ailing father and her
grandmother. Another grandmother took care of a great-grandmother, an
ornery woman who ran a turn-of-the-century boarding house for oil-field
workers in Kansas.
The great-grandma used to ring a dinner bell for help. Maggie's
mom has a whistle and is audible at night through a baby monitor. Many
a deep sleep has been disrupted by Maurine's calls for help.
"Margaret! Margaret!"
Maurine calls for her daughter to get to the bathroom, but
sometimes Maggie thinks that's just an excuse. She wishes her mother
would just ask to talk, because it's hard to lift her out of bed.
Not that the transition has been easy for her mother, who spent
her life caring for her family and mothering students as a secretary at
Macalester College.
Maurine waters plants, washes potatoes and sorts socks to feel
useful. Her need for a purpose explains why it's hard to just ask her
daughter to come into the bedroom for a talk.
"It's silly," Maurine said from a comfy chair in her room,
"when you don't feel like you've got enough strength to get up by
yourself and go to the bathroom."
Maurine takes an antipsychotic for delusions and needs a walker
to get around. Her condition would qualify her for a nursing home. She
could afford one, too. Her husband worked in marketing for The St. Paul
Cos. and left Maurine financially secure.
Maggie was surprised how rapidly her mother declined after her
father's death. A retirement community might have been OK for Maurine
when she was in her 70s. But after a fall in her late 80s, and obvious
signs of dementia, it no longer seemed like the right choice.
Maurine lives simply now.
Poor vision makes TV blurry, so she listens to books on tape and
fiddles with a basket of sewing crafts. She squints at the painting of
a wheat field — it reminds her of the Kansas of her youth. And she
relishes the visits from great-grandchildren. Maggie takes some relief
in caring for her patient mother compared with her not-so-patient dad.
"Dad wouldn't have lasted 15 minutes," she said.
Family caregiving is an enormous financial dilemma.
On one hand, even a 1 percent decline in family caregivers would
generate $30 million more in state and taxpayer spending on nursing
homes and other care services. On the other, an increase in family
caregiving takes people away from their jobs and erodes their
productivity.
The pressure is greatest in states such as Minnesota, where
two-thirds of married women are in the workplace. That's the
third-highest rate in the nation. The conflicting demands of jobs and
loved ones stretch them thin.
"We have to figure out how to take care of the people who are
taking care of our seniors," O'Connor said. "If their health
deteriorates, then who is going to be able to take care of their loved
ones?"
One role for O'Connor's organization is to assess caregivers
who are struggling and identify the support services that could help
them. Other companies such as Pathfinder in Minneapolis help adult
children and spouses manage the care of loved ones. The company even
monitors seniors for long-distance children and keeps them informed.
State and federal lawmakers are offering solutions as well,
though they may be long shots in the lean economy. One idea is a tax
credit for family caregiving. Another is to professionalize family
caregivers by assessing their abilities and needs and giving them
required training.
Government reforms that legitimize family caregiving will be
essential, said Rhonda Montgomery, a caregiving expert at the
University of Wisconsin-Milwaukee. "Until that time, family caregivers
will continue to be the unsung and under-supported heroes of elder
care."
THE ROUTINES
Maggie runs a tight schedule. Her mother promises to stay quiet
in bed — often with the family cat tucked under the covers — while
Maggie gets ready for school. A paid nursing aide then watches Maurine,
often taking her to a favorite bench along the Mississippi River after
lunch.
Maggie's husband, Peter, is then in charge — usually while Maurine takes a nap — until the late afternoon, when school lets out.
A key lesson for Maggie has been to let the harmless delusions go, like when her mother watched the Olympics last summer.
"Guess where we are right now," Maurine told someone on the phone.
"Beijing!" she said excitedly.
When Maurine grew fretful because she no longer had her own
street address, Maggie found a sticker with the numeral 1 and placed it
on her mother's bedroom door.
Privacy is rare. Maggie doesn't argue with Peter much — it upsets her mother — so the stress can build.
Someone always has to be at home. Once, her sons took turns at
the house while Maggie and Peter took a weekend vacation. Maggie, at 54
a baby boomer herself, wonders if her sons will care for her one day.
Sixty percent of family caregivers are women, who are more
likely to take on prolonged, hands-on duties. The number of male
caregivers is growing, but they tend to seek paid support services.
Experts believe both genders will have to change. Women will
burn out if they don't seek respite once in a while. Men will need to
pitch in more. Professional services could become in short supply when
the aging boomers flood the market. Families spread across the country
will need to talk clearly about the care needs of loved ones.
Maggie and her brother are co-trustees of their mother's
estate. It's been difficult for them to always agree on the best care
for their mother and how to manage her finances.
Despite the pressures, Maggie never wants her mother to move out.
After four years in one house, everyone has heard Maurine's favorite stories, especially about the old days in Kansas.
There's the one about the family Model T and how it struggled up steep hills and over cattle grates.
There's the one about her brother firing a BB pellet into her buttock when she tried to scare away rabbits from the hunters.
On a sunny Thursday in April, it seemed a fine time to hear them
all over again. Maggie lifted her mother up to her walker, and they
slowly moved through the house to the front porch.
Maggie helped her mother into an easy chair. After tying a long
bib around her mother's neck, Maggie placed a bowl of vanilla ice cream
on her lap.
Sitting next to her was her great-granddaughter, 18-month-old Olivia, who was eating a bowl of macaroni and cheese.
Maggie enjoyed the moment. It's a big reason why this has worked for so long.
"I guess, we really feel like we benefit," Maggie said, "as much as mother does."