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Alzheimer's slow unraveling Sue Miller's'Story of My Father' is the story of many
By Kathleen Fackelmann One morning in June 1986, Sue Miller got the call that many middle-aged Americans dread: The police had picked up her elderly father, disoriented and wandering far from home. So began Miller's journey into the world of Alzheimer's disease, a world filled with hallucinations, difficult behavior and the grief that comes along with a parent's slow descent into dementia. Miller, an accomplished novelist, decided to write a memoir about her father's struggle with a disease that afflicts 4 million people in the USA. The effort took Miller 10 long years, far longer than it took to write fiction, she says. But the process helped Miller heal some of the pain associated with her father's death. The Story of My Father is the result, a story of one man's battle with a degenerative brain disease. This family's story will resonate with anyone who has watched Alzheimer's decimate a human mind, says Kathleen O'Brien, a vice president at the Alzheimer's Association in Chicago. O'Brien should know: Alzheimer's killed her mother, her father and two close relatives. She says some 19 million Americans have helped care for family members with Alzheimer's. Family members often have trouble accepting that something is wrong with Mom or Dad, O'Brien says. And in fact, people often write off the first signs of the disease as a normal part of the aging process. Henry Walker, a 55-year-old middle-school teacher, in Durham, N.C. thought his mother was suffering from mild forgetfulness at first. She seemed unable to pay her bills on time and couldn't sort through stacks of junk mail anymore. But as the years passed by, his mother's problems worsened: She heard music no one else could. She had uncharacteristic bouts of anger. Still it took years to get a diagnosis, he says. In fact, the disease is tricky to identify, says Sandra Weintraub, an Alzheimer's expert at Northwestern University in Evanston, Ill. Patients must undergo a battery of memory tests. In addition, doctors must rule out other conditions that cause memory loss, she says. Hallucinations and more Miller says she noticed subtle signs early on that her father's mind was slipping. But by June 1986 there was no way to ignore the symptoms of dementia in her father, James Nichols. He told his daughter that he had seen stop signs morphing into strange-looking people on the night he got lost. Much later Miller learned that Alzheimer's disease can bring on hallucinations, visual and audio disturbances caused when the disease destroys or damages brain cells that make sense of such information. Nichols was lucky in one way: He had a combination of Social Security, pension and other savings, enough to pay for care at a well-run nursing institution about 40 minutes from Boston, where his daughter Sue lived. O'Brien says that many American families struggle to pay for the sometimes astronomical cost of caring for an Alzheimer's patient. At-home care can run about $20,000 a year; the cost of an institution can reach $100,000. Miller visited her father often, reading to him, taking him on walks. And yet she could never shake the nagging sense that she hadn't done enough. ''People feel guilty about this disease,'' Miller says. In addition to guilt, caregivers can suffer from denial, depression and burnout, says O'Brien. For two years, 33-year-old Stacy Deprey of Sun City, Ariz., cared for her mother, Bonnie Deprey, at home. ''I cried every day,'' Deprey says, describing the painful emotions that surfaced while watching her once-vibrant mother slide into the dark night of Alzheimer's. ''You feel like a complete failure, even though you are working so hard,'' she says. Alzheimer's first destroys the memory regions of the brain. But as the disease continues to kill brain cells, patients lose the ability to reason, talk, or even walk. 'Harder every year' Such information helped 33-year-old Brian Hill of St. Paul, Minn. Hill, who has cared for his father at home for 11 years, used to get very frustrated with some daily chores. For example, Hill says he would fix dinner for his father and then return 20 minutes later to find a plate of untouched food. But contact with the local Alzheimer's Association helped him realize that his father had literally forgotten how to eat. ''It gets harder every year,'' he says of the 24/7 job of diapering, feeding and caring for his father. But the Alzheimer's Association also helped Hill get some respite care so that he can run errands or just decompress. As the disease progresses, people with Alzheimer's often experience agitation, and they may lash out when frightened or angry. Miller describes an episode when her father, normally a very peaceful man, turned violent and shoved her. Yet such difficult episodes brought Miller and her father closer, she says. The nursing home staff would call Miller when her father became agitated. She would read or sing to him. ''Sometimes I just held him and stroked him as you would a frightened child,'' she says. Simple acts like singing, reading or talking softly can offer great comfort to someone with Alzheimer's, O'Brien says. But Miller says they also helped her get to know her father in a fuller way: She realized that her father's religious belief had given him the courage to accept and face this frightening disease. ''Even in the end he was able to respond to the cadences of the Bible,'' she says. ''I came to understand the depth of his belief.'' Copyright
© 2002 Global Action on Aging
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