Caring for two disabled parents hasn't been easy for this family ----- but it's their way of giving back to the couple who raised them.



"It's our turn."

Elizabeth always had been a candy lover, but when she began hoarding it, her family knew it was yet another symptom of what they had come to deal with: the Alzheimer's disease that was slowing debilitating their mother.
Elizabeth sometimes loaded three grocery carts full of Snickers bars. She hoarded other items, too, buying 50 light bulbs at a time.
"We probably found 150-200 Snickers all throughout her socks and stuffed between the mattress and the box springs, tucked away in the curtains," says Mary, Elizabeth's daughter.
"She had Snickers bars and M&M's everywhere.
Elizabeth, 68, once loved to go to rummage sales and buy dolls. She liked to make homemade meals, bake apple pies and cinnamon rolls and to can tomotoes.
"She was good to talk to when I was growing up," says one of her now-grown daughters."She was really loving with the little kids." Now, Alzheimer's disease has robbed Elizabeth of the ability to communicate, walk or feed herself.
While Elizabeth still was mobile, one of her daughters convinced her dad, Robert, to let her take her mother to St. John's Hospital Adult Day Care. She dropped off her mother on her way to work that first day. She hadn't made it to work before employees were trying to contact her to pick up her mom.









Story by Tamara Browning
Photographs by Chris Young


Right: Grandson and daughter help Robert to the dinner table. Robert suffered a disabling stroke in 1994.
Above: Elizabeth was diagnosed with Alzheimer's disease in 1989.









Left: Eager to help, a 4-year-old grandaughter offers her grandmother an orange slice.



"They said she was walking around and yelling and scaring the other people," says her daughter, who says her mother was taking a drug that made her irritable.
"She was turning the tables over and throuwing things."
Alzheimer's disease can have that sort of effect. It's a brain disorder that causes memory loss and changes in behavior, personality and thought.
It's progressive, irreversible and incurable, and ultimately it renders its victims incapable of caring for themselves.
The cost of diagnosing the disease and the medical and long-term care associated with treating it is estimated at millions of dollars each year, a portion of which is paid for by the federal and state governments.
"The rest of the bill ...is mainly in cost
of caregiving to the affected individuals, all paid for by the families of the victims of Alzheimer's disease," says Dr. Dennis McManus, assistant professor in the department of neurology at Southern Illinois University School of Medicine.
Elizabeth's family, included her husband, Robert, has been helpin to keep both parents at home and out of a nursing facility.
They raised us, and it's our turn to give back to them and raise them now," says one of her daughters.
Their eight children are determined to give primary care to their parents to avoid placing them in a nursing facility that probably would cost $6,000 a month for both.
At present, it costs$1,500-$2,000 a month to care for Elizabeth and Robert. Once an airplane mechanic at Capital Airport, Robert has an annuity and retirement that provides income along with Social Security.
"If they had more affordable service, it would be so much easier for people who are in this position to keep their parents at home," says another of their daughters. "To get help from some of the day care is like $14 an hour. That's prohibitive."
The expense involved often causes Alzheimer's patients to end up in long-term care facilities sooner than they should, says Susan Knox, executive director of the Land of Lincoln Chapter of the Alzheimer's Association.
"Medicare does not pay a lot for Alzheimer's," says Knox. "They don't pay for in-home care to keep a patient at home."


Below: Before their illness set in, Robert and Elizabeth
liked to get away on their Harley-Davidson motorcycle.

Caring for the disabled Elizabeth at her home comes with complications for her children. Even a seemingly small thing, like the shower that has a lip on its floor, can be an obstacle.
Giving her mother a bath with the help of a granddaughter, they struggle to position Elizabeth into a wheel-chair.
"We have to lift her over the lip," says her daughter. "If we would have known how difficult (it would be), we would have spent an extra $2,000 to get a real handicapped one."
It was in spring 1989 that Elizabeth was diagnosed with the disease.
Initially, Robert, her husband of 42 years, cared for her. Then, in 1994, he suffered a stroke and no longer can care for himself.
"That made it much more difficult because where we did have one person taking care of mom the majority of the time, we now had two toddlers," say her daughter.



Seven of the eight children who live in the community have stepped in to help care for them. A son, who lives out of state, is too far away to help with day-to-day care. At first, each family member worked a 12-hour shift once a week and spent one night a month at the home. Now each does what he or she can. The day-to-day care involves doing four loads of laundry and using diapers, rubber gloves and disinfectant for cleaning. A granddaughter and their oldest daughter do the majority of the cleaning, laundry and cooking. Another granddaughter does most of the bulk shopping. Managing thier finances has been passed around among several family members because of the time and stress involved. "There are family squabbles as to what someone may think is a necessity and what I thought was a splurge," says one daughter, who currently is managing the finances and averages about five hours a week helping her parents. She maintains a part-time job and has a four-year-old daughter. "We're a close family, but these kind of circumstances are really stressful." Alzheimer's disease affects 2 to 4 million Americans each year. As of the 1990 census, there are approximately 8,000 Alzheimer's patients in the 11 counties served by the Land of Lincoln Chapter of the National Alzheimer's Association. In Illinoi, there are 200,000 patients.

Seventy percent of the people who have Alzheimer's are at home, says Know, whose organization works for people with Alzheimer's and their families in Cass, Christian, Logan, Macon, Mason, Macoupin, Menard, Montgomery, Morgan, Sangamon and Scott Counties.
"That tells you that people want to take core of their loved ones who have Alzheimer's at home," says Knox.
Science doesn't know what causes the disease. And a definitive diagnosis is possible only with an autopsy. But the disease does present warning signs, including:
Recent memory loss that affects job skills.
Difficulty performing familiar tasks.
Problems with language.
Disorientation of time and place.
Poor or decreased judgement.
Problems with abstract thinking.
Misplacing things (putting things in inappropriate places, such as an iron in the freezer.)
Changes is mood or behavior.
Changes in personality.
And a loss of initiative.



Above: Today, Robert and Elizabeth rarely recognize each other.
Below: Weariness shows on the face of a granddaughter, right, who helps
provide care during the day after working an overnight shift at her job.

Research continues. The FDA-approved drugs Cognex and Aricept improve the personality of patients who are withdrawn and may help some with their memory.
Expected to be available soon is the drug metrifonate (research of which began at SIU School od Medicine ) that is similar in effectiveness as Cognex and Articept, but is taken only once a week. Another upcoming drug is Exelon.
Ginkgo biloba extract, vatamin E, estrogen and the anti-inflammation drugs ibuprofen and naproxen appear to slow Alzheimer's progression.
"Awareness of the fact that the loved one has dementia is the biggest hurdle because frequently they blame the patient and not the disease," say McManus.

"It's not the patient's fault. It's the danged disease."
As her mother's condition worsened, a daughter adopted a minor daughter, who originally had been adopted by Robert and Elizabeth. The adopted daughter has been living with them to help in exchange for room and board.
"She feels like they gave her a big portion of their life by adopting her and taking care of her. She's trying to return that back to them by staying here in the house and taking care of them as much as she can," says her adoptive mother.
The granddaughter soon will move to her own apartment and Robert and Elizabeth will move in with their oldest daughter who lives in the community. "I think part of the reason why we try so hard to keep them hjome is we saw them model that with their parents," says one daughter. "Mom took Grandma to church every Saturday and Mom visited Grandma, I think every day, and my father every weekend he went to his parents." "It just comes natural when you've seen it modeled."



This story was published in "The State Journal-Register" in "The Heartland Magazine." The names have been removed because of the recent loss of our parents. I wish to respect my family's grieving process. This story has been added to help encourage children to help take care of their parents. It was a long hard struggle, but in our eyes it was worth every moment of it. We do not seek gratification from the article because we have received it knowing that we have done every thing in our power to allow our parents to die peacefully in their home.




Last updated 23 May 1999