Upper Saddle
River, New Jersey - When Suzanne Cooper’s elderly mother moved in three years
ago, her Alzheimer’s was in an early stage. The 84-year-old
was still fairly lucid, so Mrs. Cooper could leave her home, while picking up
her son, Griffin, from nursery school or going food shopping.
But in time,
the mother turned more inward, having long conversations with herself at the
kitchen table or just staring. “She goes into the other world and you try to
pull her back, but it gets harder,” Mrs. Cooper said. She would come home with
Griffin, 5, and find her mother sitting by the back door holding her blanket
and looking lost.
Soon, the
49-year-old Mrs. Cooper couldn’t leave her alone and the days became logistical
brainteasers, as she tried to balance the needs of her son and those of her
mother.
If she had
errands, it could take three hours to get her mother fed, groomed, bathed,
dressed and out the door. “Mom can still brush her teeth,” Mrs. Cooper said,
“but I have to put the toothpaste on the brush.”
“In fall and
spring I could take her on errands and she was content to sit in the car,” Mrs.
Cooper said. “There’s no law against leaving an 84-year-old woman in the car
with the windows down. But summer and winter, I can’t do that — I’m tied to the
house.”
Mother and
daughter were sitting on the back deck recently, when Mrs. Cooper jumped up and
said, “I need to check on Griffin.” He was supposed to be playing a computer
reading game inside. “Sometimes, he finds his way onto the Internet,” she said.
“I’ll be back.” Her day is all back and forth: Comfort her mother, mumbling and
sobbing at the kitchen table; stop Griffin from biting the sofa cushions.
While she
was inside, her mother, Irma Stitz, a retired nurse, carried on a conversation
with herself: “God bless you, but you know that. There will be a tomorrow. Yes,
because of your hate, hate, hate.”
When Mrs.
Cooper returned, her mother said, “The people all may be changing.”
“Mom, can I
get you to come in the house and have some soup?” said Mrs. Cooper, moving to
help her up.
Mrs. Stitz
shooed her away. “I can do it myself,” she said, and she walked into the
kitchen and ate her soup.
Mrs.
Cooper’s mantra had been, “I want to be a stay-at-home mom, and a stay-at-home
daughter,” though for a long time she worried she did neither well. She spent
20 years building a career, rising to become a corporate vice president, and
was finally ready to be home. Married late, at 43, to Peter Cooper, an
architect, she felt blessed to become pregnant right away. Mr. Cooper was also
caring for his parents — now deceased.
They loved
this about each other. “Family loyalty,” Mr. Cooper, 55, said. “Other women
said, ‘Oh, he’s never married, caring for his parents.’ Suzanne found that
appealing.” About 20 percent of baby boomers — 14 million — take care of an
aging loved one, according to a Natural Marketing Institute report done for the
AARP,
and as the Coopers know, it can be a struggle.
Mrs. Cooper
was determined not to put her mother in a nursing home. “I don’t want someone
else to be there when Griffin scrapes his knees and I felt the same about my
mother as she comes to the end.”
“I was sure
I could do this myself,” she said. The remodeled house — on a cul-de-sac in an
upscale suburb — provides Mrs. Stitz with her own bedroom, bathroom, laundry
room and living room.
A widow for
30 years, she had been independent, hard-working and proud, taking care of
herself in her Pennsylvania home. It was a long time before the daughter
realized the mother had been masking the disease. If the mother came for a
visit, she would leave the next morning, before anyone could notice lapses.
During one stretch, she and her dog repeatedly had the stomach flu; Mrs. Cooper figured out they were
eating spoiled meat. When Mrs. Cooper made stuffed artichokes, a favorite
family dish, her mother couldn’t remember how to eat one.
Mrs. Cooper
loved her mother’s sense of wonder and her laugh, but this last year, the joy
kept contracting. They used to go to the beauty parlor together, but the other
day, Mrs. Cooper couldn’t get her mother to their appointment. “Where are we
going?” Mrs. Stitz asked. “How will we get there?” She sat back and closed her
eyes.
“That’s when
I back off,” Mrs. Cooper said.
The less the
mother would do, the less the family could do.
“We became
increasingly isolated, it was unbearable,” Mr. Cooper said. Nor did the economy
help; Mr. Cooper’s firm went from three employees to one. He worked long days
and often had night meetings.
The Coopers
— attracted by a shared commitment to their elderly parents — began seeing a
marriage counselor. “My husband tolerates an awful lot,” Mrs. Cooper said, “but
he was worn down.”
She had
trouble hiring help; they live three miles from a bus stop. When her mother had
heart problems, a home health aide came, but it wasn’t much relief. The mother
always took baths; the aide was only supposed to give showers. “If Mom refused
to take a shower, the aide wouldn’t come back,” Mrs. Cooper said. “So I gave
her a bath before.”
“I kept
making phone calls,” Mrs. Cooper said. “There were pages and pages of options.
Home aides, nursing facilities — some insisted you have $125,000 before they’d
talk to you.”
In June,
Mrs. Cooper finally pressed the right button. She found Nancy Bortinger, a
geriatric social worker for 33 years. Mrs. Bortinger — who works for Vantage Health
System, a local nonprofit agency, and advises parentgiving.com,
a Web site aimed at people caring for elderly parents — interviewed Mrs. Cooper
for three hours and a few days later made a home visit.
“Suzanne was
stuck seeing this in black and white — put Mom in a nursing facility or keep
her home,” Mrs. Bortinger said. “We needed to get her unstuck fast, before the
family and marriage had a crisis.”
Mrs.
Bortinger suggested an Alzheimer’s respite program, where the mother could
spend an occasional day, and Mrs. Cooper could get a break. It still took three
hours getting Mrs. Stitz out the door. When she resisted, Mr. Cooper suggested
to her that as a nurse, she would be able to help with the patients there, and
Mrs. Stitz agreed.
Mrs. Cooper
savored the day alone with Griffin. Mr. Cooper noticed. “Suzanne’s mood
improved enormously, knowing she has choices,” he said. “She gets a break, but
doesn’t feel she’s shirked her responsibility.”
Two weeks
ago, the Coopers took the next step. They signed up Mrs. Stitz for a week of
respite, so they could go on vacation to New England. While not covered by
insurance, the cost was manageable — $190 a day. When Mrs. Stitz resisted, Mr.
Cooper was able to summon a lucid moment. “Irma, we’re going to take a few days
to see my family, you don’t mind?” he said.
“By all
means, Peter,” she said.
Mrs. Cooper
spent the week before with a Sharpie marker, labeling clothes as if her mother
were going off to camp.
The first
few days, Mrs. Stitz’s stay was shaky; her doctor was on vacation and there was
a mix-up with her medications. But after that, things went smoothly.
The Coopers
were supposed to pick her up last Sunday, but the traffic back from Boston was
horrible. When Mrs. Cooper called to say they’d be late, a supervisor suggested
that instead of rushing, she could let her mother stay one more night, and Mrs.
Cooper agreed it was a good idea.