Taking care of our aging parentsFor millions of us, it can be a heartbreaking rite of passage:
realizing that Mom and Dad can't cope. For one daughter, it was a
voyage of discoveryBy Cathy Booth/Los Angeles
August 23, 1999
Web posted at: 10:40 a.m. EDT (1440 GMT)
My dad and I are sitting in a booth at El Torito. I am nursing a
margarita, Dad's got a bottle of beer, and the Mexican food will
arrive soon. This has become a ritual for us, eating out three
times a week, since we sold Dad's house in Texas and moved him to
California a year ago at age 83. "Kick 'em!" he says, and we
clink our glasses and connect--more than we ever connected before.
Since Mom died more than two years ago, we hug and kiss--things we
never did when I was growing up and he was a workaholic architect
out to change the world.
"So what happened to that guy in our family who works for TIME?"
he asks, smacking his lips in pleasure after another swig. My dad
has been having trouble keeping relationships straight for a few
months now. At his worst point, after a fall last September, he
thought I was his mother. When I'd kid him about the mistake,
he'd laugh hard, turn really red and run a hand over his balding
head, his lifelong gesture of consternation. But even then, when
I was his "mother," he still managed in some convoluted way to
hold on to one thing: he was proud of his daughter at TIME, who
had interviewed Fidel Castro and traveled with the Pope.
Now suddenly I don't exist.
"Dad, that's me, your daughter, Cathy, who works at TIME. I'm
here. It's me. There is no guy in our family. I'm your only
child. Remember?"
Surely, I think, I can reason him out of this. But he looks angry
and tells me I'm wrong and relates--in great detail--a late-night
meal of takeout chicken we once consumed at my desk when I was
working late. "Yeah, Dad, that was me," I tell him. His blue
eyes--destroyed years ago by glaucoma and cataracts--stare
forlornly back at me. "Well, that's what you keep telling me," he
says. He looks sad, confused. He starts making a thin whistling
sound, a sign I recognize as his signal of distress.
Easing the trauma: What you can do
The crisis might start with a fall that cracks a parent's fragile
hip, or with the mental confusion that signals the fading of a
loved one's faculties. But however the debilities of age arrive,
they mark a turning point both for seniors who can no longer live
alone and for busy children who must suddenly take charge of
their parents' housing and medical needs. Here are some tips for
navigating this difficult rite of passage:
--Don't wait
The first step in coping with an aging parent is to be prepared
when infirmity strikes. This means exploring options like
assisted-living communities before they are needed, so that both
children and parents know what to expect.
--Seek support
Children who are thrust into the role of caregiver should seek
out all the help they can get. Physicians trained in geriatric
medicine can spot conditions and recommend treatments that other
doctors might miss. Social workers skilled in geriatric
counseling can assess a senior's needs and develop action plans.
Such people may be especially helpful in those painful cases when
children must take needed steps in spite of the objections of
mentally declining parents.
--Shop around
Most providers of senior housing are businesses, not charities,
and their products should be scrutinized for cost and quality.
Families should visit as many facilities as they can and return
to view them on different days of the week and hours of the day.
Pay attention to your gut feelings about a place--and be sure to
consult your parent before any decision is made.
--Take care of yourself
The stress of looking after a parent can swiftly take a toll on
you. Discuss your feelings frankly with family, friends or
therapists. "Be realistic, and have a sense of humor," advises
Bette Ann Moskowitz, author of Do I Know You? Living Through the
End of a Parent's Life. "You couldn't live through something like
this without one."
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All around us there's the revelry of sports fans watching a game
on TV. I register the girl at the next table sitting on her
boyfriend's lap, the guys screaming at the TV screen, the happy
faces all around, and I feel utterly alone. I am alone. My dad is
gone. He's here, but he's not. I want to cry, but instead I sit
there with my margarita, my face contorted, holding it all in, my
soul ripped in a thousand places.
I'm hardly the only one going through this experience. It has
become the baby boom generation's latest, and in some ways most
agonizing, life crisis: what to do when the parents who once took
care of you can no longer take care of themselves. The age wave
is mounting: 33 million Americans, an unprecedented 13% of the
population, are over 65. Their ranks will more than double by
2030. The number of Americans 85 and older has nearly tripled
since 1960, to 4 million, and will more than double that over the
next 30 years. Along with that explosion has come a growing, and
often confusing, array of living and caring options. (See
following story.)
The moment when we must take charge of Mom's and Dad's lives is a
wrenching rite of passage for baby boomers, who in many ways are
still struggling to grow up. "As a generation, we haven't seen
much death, and we haven't experienced a great deal of hardship
ourselves," says psychologist Mary Pipher, author of the
best-selling book Reviving Ophelia and the recently published
Another Country: Navigating the Emotional Terrain of Our Elders
(Riverhead Books, $24.95). "We weren't in a Depression. We
weren't in World War II. For many baby boomers, this is the first
really rough patch in their lives."
It can be rougher for those who are facing the dual pressures of
the "sandwich generation": trying to raise young children and
take care of aging parents at the same time. That's a problem I
don't have to face. Yet with no brothers or sisters to help make
the decisions and share the load, I'm facing the whole ordeal
alone. Friends console me with tales of sibling squabbles over
finances and accusations of who's not spending enough time with
Mom and Dad. Others I know are trying to make up for years of
seeing their parents only a couple of times a year, over
Christmas turkey or at summer picnics. No matter; we all end up
feeling guilty.
Things are better, in some ways, than they used to be. For the
most part, our parents have put away more money than their
parents did. Many can afford to live in retirement communities or
pay for full-time nursing care. But throwing money at the problem
(better hospitals, better doctors, anything to avoid facing the
alternative) isn't the solution. Nor is micromanaging our
parents' lives--buying the groceries, doing the laundry, anything
rather than actually sitting down and talking. Eventually we have
to face the fact that the parents who nurtured us are now the
ones who need nurturing. And unlike child rearing, there are no
Dr. Spocks out there with time-tested advice. It's a personal
journey for which there are few reliable road maps and precious
little reassurance.
My own descent into elder-care hell began in 1995, when my
mother, then 69, was found to have Lou Gehrig's disease. It
robbed her first of her speech (and boy, how she had loved to
talk!), then of movement of her limbs. My mom and I had lots of
issues never resolved since my teenage years. But rather than get
therapy, I decided to spend more time with her, taking months off
from work to listen to old records, watch Masterpiece Theatre
videotapes and look at family pictures with her. I found old
notes from her years as a decorator, and I found love letters. I
got to know her friends at Ursuline Academy in Dallas, where she
had had a second career teaching history. I learned things I'd
never known: that she had paid for my Catholic-school education
by herself; that she was adored by her students; and that the
attitudes I had so rebelled against came from a Southern
upbringing that required her to be a "lady"--always.
As my relationship with Mom improved, my dad and I had
knock-down-and-drag-outs over her treatment. He and the doctor
wanted her in a hospital. She wanted to die at home. Dad
wouldn't, couldn't pay for round-the-clock nurses. Part-time
aides came and went, unable to take the hours and the unrelenting
attention Mom needed. After she had a tracheotomy and required a
tube down her throat, I had to learn how to apply suction to the
tube when she felt the saliva backing up--a procedure most of the
aides were either unable or unwilling to do.
She died almost exactly a year later, on Labor Day weekend, 1996.
During that year, I loathed my dad at times, and I'm sure he felt
the same way about me. As some men do, he just withered away
after she died. He wouldn't let anyone into the house to clean
except me. He ran off anyone who tried to help, then complained
about loneliness. He picked up women on the bus, talked about
getting remarried (always to someone in her 30s or 40s, I
noticed), confided details of his marital life that I really
didn't want to know. It was as if his internal censor had gone to
sleep. And he began to lose his mind. He was convinced that city
workmen were partying at night in his bathroom, that preachers
were stepping out of the TV to say prayers with him in person,
that a child had fallen behind the bed and was crying.
The doctor was adamant: Dad couldn't live alone anymore.
Pipher says that moves cannot be avoided, that being near family
is what's important for the elderly when they live alone in a
distant city. But I still wonder whether my dad's move wasn't the
worst thing I could have done to him. I ripped him away from his
foundations: from the pub he went to three times a week, the bus
route he knew even blind, the house he could navigate in the
dark, the newspaper that chronicled men he knew in the Jaycees,
the people he had built houses and warehouses for.
He came to California and stayed with me for a while. Then we
began to search for assisted-living places where he could have an
apartment--with communal meals and activities, but where he could
still come and go on his own. The most helpful guide was New
Lifestyles, a glossy pamphlet published in many cities that
explains the levels of care at each facility in town, from
assisted living to hospices and dementia care. Social-service
agencies, churches, hospitals and rehabilitation centers have
similar listings. Friends recommended other places.
Dad and I visited all of them together. I was cheered by the
activity in some; at others the rows of zombie-like elderly folk
in wheelchairs lined up at the front door depressed me. There is
no formula for choosing one. You have to inspect them thoroughly,
check into state-agency reports--and ask, ask, ask questions.
What's the ratio between staff and residents? Is there a doctor?
What's the food like? (Eat there!) What kind of entertainment is
available? (Go sample it!) What happens if my parent develops
dementia? Will he be kicked out or moved to another, escalated
level of care?
My dad chose a nice assisted-care facility with a spacious
one-room apartment overlooking a courtyard in the Los Angeles
suburb of Tarzana. But after just a month there, Round Two of
elder-care hell began. While taking a walk around the block, he
fell. I was out of town on assignment. By the time I got back to
the city, 12 hours later, the local emergency-room doctors had
doped him to keep him calm. He had gone crazy, they said, when
they strapped him to the hospital bed. (I'd fight too!) He'd had
three beers, they said, and was uncontrollable--a man who weighed
only 130 lbs. In just three days my father went from being
self-sufficient to an invalid. His injuries? A two-stitch cut on
his head.
I took him home and detoxed him. Getting him in and out of the
tub alone was a nightmare. He got up for the bathroom every hour
all night long for two nights. By Day Three I was a sobbing mess.
I hired a 24-hour "helper" to get him back on his feet and let me
return to work. My dad was atrophying, physically and mentally,
before my eyes. I put him in a rehabilitation facility. They did
their best but were short staffed. His doctors wanted to put him
on the harshest psychotropic drugs available. When several nurses
warned me against the drugs, I fought for and got a milder drug
regimen. But again, fearful that he'd get up and break a hip,
they strapped him to his bed. He began to wither away,
uninterested for the first time in food, because he was no longer
allowed salt. He couldn't see to ring the bell for the toilet, so
he would sometimes lie for hours in wet diapers or sheets until I
or his 74-year-old sister would arrive for a visit. Half the time
he didn't recognize me.
When Medicare and his supplemental insurance coverage ran out
after a month, I was desperate. He clearly couldn't go back to
his apartment. Luckily I didn't have to embark on a long search:
the social-services lady at the rehab center recommended a nearby
facility, actually two houses with six residents each, built
around a garden, with a locked gate and round-the-clock nursing
aides. It's what California calls a "residence for the elderly,"
far cozier than most of the corporate- or church-run rest homes
and assisted-living facilities I had seen. The food is home
cooked; there's a Friday-night Jewish service my Catholic dad
loves; and no one straps him to the bed. But it's expensive:
nearly $3,500 a month for room, board, doctors and medicine. How
many people on a retiree's income can afford that?
Physically he's doing great, but he's dying bit by bit mentally.
Now 84, he thinks he's been fired from his job; sometimes he's so
lonely he imagines Mom is still alive. Over and over, he makes
lists of family and friends so he'll remember them; each time the
list is shorter as he forgets more names. He thinks that he's
been abandoned in a house of strangers, that he sleeps in a
vault, that everyone in the world now wears diapers. I'd laugh if
it weren't so awful. Even with two aides on duty during the day
and one at night--an astoundingly good ratio for a home with six
residents--they can't watch him every minute. It took the new
doctors forever, in my view, to diagnose an underactive thyroid,
which caused some of his confusion. He is in what doctors tell me
is the early stages of Alzheimer's. Yet both his father and his
aunt lived to 96. Will he have another 12 years of living in this
netherworld?
In my world, I see lots of old men in worse condition, half
crazy, living on the streets, abandoned by their families. I
don't loathe my dad anymore. I cry a lot. Sitting down to a
margarita and a beer (nonalcoholic these days) at El Torito with
him again recently, I felt forlorn and, oddly enough, lucky too.
Lucky to have discovered late in life how to love all over again.
I only wish he could understand the wonderful gift he's given me.
MORE TIME STORIES:
Cover Date: August 30, 1999
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