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http://www.nytimes.com/2009/08/23/fashion/23genb.html?_r=1&ref=health

 

August 23, 2009

 

CAREGIVING - WHEN YOU ARE YOUR MOTHER'S KEEPER

 

Ageing - Alzheimer's - Multiple Care Roles - Challenges - Choices

 

By MICHAEL WINERIP

 

 

Jennifer S. Altman for The New York Times

STRETCHED THIN Suzanne and Peter Cooper with their son, Griffin, hugging his grandmother, Irma Stitz.

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.





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