One afternoon Pearl Kays hopped in her car, telling her husband, Bill Kays, she was heading to the Safeway just blocks away. After three hours, Pearl Kays had not returned, and Bill Kays was slowly becoming frantic. Just then, Pearl Kays pulled into the driveway and sat in her car.
Bill Kays went to the car and asked, "Where have you been, darling?"
"I've been lost," she replied.
The pair went into their Vienna home and cried.
Shortly after, Pearl Kays, then 60, was diagnosed with Alzheimer's disease. That was in 1990.
"Every year we would go to the beach with some friends, and when we told them she had been diagnosed, they said they had known for five years before that," Bill Kays said. "I didn't know it. I was in denial."
Bill Kays cared for his wife for 5 1/2 years at their home before he finally moved her to an assisted living facility, Royal Haven, in Front Royal. Pearl Kays died this past February.
According to information provided by the Alzheimer's Association, National Capital Area, "An estimated 460,000 people, including those diagnosed, their families and caregivers, living in Northern Virginia, suburban Maryland and Washington, D.C., are impacted by Alzheimer's disease."
ALZHEIMER'S DISEASE is the most common form of dementia. It is a progressive, degenerative disease of the brain. Early onset of Alzheimer's can affect people beginning anywhere from their 30s up to their early 60s. A person with Alzheimer's will live an average of eight years and as many as 20 or more years from the onset of symptoms. It begins as memory loss that affects job or home skills, difficulty in performing familiar tasks, problems with language, disorientation of time and place, poor or decreased judgment, problems with abstract thinking, misplacing things, changes in mood and behavior, changes in personality and loss of initiative. During the last stage of Alzheimer's, patients are no longer able to take care of themselves and typically lose the ability to communicate.
Statistics provided by the Alzheimer's Association, National Capital Area, report that seven out of 10 people with Alzheimer's disease live at home and that almost 75 percent of home care is provided by family and friends.
"It pretty much sucks," said Linda Hadley of Falls Church. "When my mother was diagnosed [in October 1997], she was living in Philadelphia, so I kept her up there. Within three months, I had to move her into an assisted living facility there. She met new people, got a boyfriend. … It improved her quality of life for six months. But then her quality of life decreased rapidly, so I moved her here. You end up swapping roles.
"My mother was a very classy lady, well-groomed, enjoyed the finer things. And now I watch her being diaper-changed. It's hard," said Hadley.
Hadley lives alone and felt she could not adequately care for her mother, Marjorie Thomas, at home, so she hired caretakers before making the decision to move Thomas to an assisted living facility.
Hadley would travel to Philadelphia every weekend. She took over her mother's finances and became responsible for taking Thomas to her medical appointments. After moving Thomas closer to her, Hadley visits several times a week, playing her mom's favorite Perry Como compact discs and decorating her room to match the holidays.
"She'll still have moments where she seems to recognize me. She smiles or laughs, but there is no way for her to communicate," Hadley said. "She doesn't know it's Halloween, but she does get pleasure from good food."
WHETHER SOMEONE cares for a loved one with Alzheimer's at home or through the assistance of professionals, the stress on the caregivers takes a toll.
"My son came to me one day and said you have to do something. We had an Easter party for Pearl, and I took her to Royal Haven the next day. It was the most difficult day of my life," said Bill Kays. "Three months later, I had a heart attack. … I never had a blood pressure problem or a cholesterol problem. My doctor said I had caregiver stress. I didn't realize it. I got used to it."
Kays said the Alzheimer's Association’s support group helped save his life. He began attending before he moved Pearl Kays to Royal Haven and now co-coordinates the group. While Pearl was still at home, Kays became a virtual prisoner in his own home, afraid to even go outside to mow the lawn. Some nights, when Pearl — forgetting who he was — wouldn't let Kays sleep in the same room as her, he slept in the hallway to make sure she didn't get up in the middle of the night and fall down the stairs.
"It can be very stressful, and as the disease progresses, the patient needs more and more care. It gets to a point where one person can't do it anymore," said Karin Udler, help-line manager for the Alzheimer's Association, National Capital Area. "It is just a very stressful disease, and the family has to adjust because they just can't respond to the person in the same way they used to. For some family members, it's a hard process."
According to the Association, the average cost of a nursing home is $42,000 per year, and in some areas it can exceed $70,000. Medicare or private health insurance does not cover all of the long-term care needed by most patients. It costs corporations more than $33 billion a year due to lost productivity of the employee caregiver and in health and long-term care costs. Two-thirds of employees acting as caregivers sacrifice promotions, pay raises and training opportunities to accommodate their caregiving schedule, and 16 percent will be forced to leave the work force entirely while caring for their loved one.
THE EXPERIENCE with her mother has changed Hadley. She says she has more tolerance toward older people and an appreciation for life. She also works part-time for the Association. Her father's sister has also recently been diagnosed, and Hadley is also helping take care of her. The knowledge that Alzheimer's runs in both sides of her family, increasing her chances of being diagnosed with the disease, is never far from her mind, and she hopes that in 30 years there will be a cure. In the meantime, she continues to focus on caring for her mother.
"I want to show up to make sure she is getting good care, to make sure her surroundings are nice," Hadley said. "Even if a person has Alzheimer's, I think they sense people who care about them are there. I like being there for her, like she was for me."