by Jeannette Scott
After raising two sons, running their farm in West Marlborough Township, Pennsylvania, and expanding the family mushroom business, Robert and Donna Sharpless approached the next stage in their lives anticipating a little more freedom, a little less worry.
But just before they could grasp it, they were cruelly robbed of the midlife pleasures most people assume they will have. Instead of more time for trips to the mountains, dinner dates, and sharing a passion for music, they have day-care arrangements, financial concerns, and communication problems.
The Sharpless family is a victim of early-onset Alzheimers Disease, with which Robert was diagnosed in 1991. It is a progressive, degenerative disease attacking the brain, resulting in impaired memory, thinking, and behavior. Alzheimers afflicts an estimated four million people in the United States, making it the fourth leading cause of death in adults.
Bob displayed the first signs of his illness in the mid-80s. He gradually became more forgetful, and Donna noticed discrepancies in his business management. This was out of character for her husband, who had always been an intelligent and gifted businessman. After a while his favorite saying became I forgot. Anytime there was a problem his answer was just I forgot, she said. Donna initially attributed his behavior to depression, possibly resulting from the struggle to keep their business going in a poor economy.
Eventually, the Sharplesss were forced to close their once prosperous business. While doing so, Donna lost her mother to cancer. And the void where Bob’s friendship and support had always been was growing.
At her mother’s home, after the funeral, Bob went outside to warm up the car. A few minutes later, their son asked Donna why his dad left without her. Later, when their other son asked why he didn’t bring mom home, Bob could only stare blankly at him, as if he truly did not understand.
Relatives found the incident humorous. But to Donna, it was a painful reminder that this exasperating problem was not going away. At the same time I was dealing with closing the business, a lawsuit, and the deaths of both our mothers, with no help from him, she said.
It became increasingly difficult for Bob to maintain employment. He bounded from job to job for a while. Soon Donna became the family’s sole breadwinner. Out of both economic and emotional necessity, Donna took a job at the Pocopson Home in Lenape for a short time. She had her first contact with known Alzheimers patients there. Seeing many victims in the advanced stages, Donna quietly wondered if this might be what was happening to her husband.
But the fact that Bob was only in his mid-50s, and not yet experiencing advanced symptoms, cast plenty of doubt. Like most people, Donna associated Alzheimers only with those in their 70s or beyond.
It was during that time that Donna finally convinced Bob to visit a psychologist. This was the first in a string of physicians whom they would consult over the next several years, hoping to identify and correct the problem. Most of them, including the Sharpless family practitioner, also thought Bob was depressed. Until the first hallucination.
Donna watched, perplexed, as Bob stopped their car suddenly in the middle of the street, and got out hollering at a child for playing in the road. There was no child.
This 1991 incident finally led the couple to neurologist Dr. Bruce Bogdanoff at Crozier Chester Medical Center. About six years after the first symptoms had appeared, Donna’s secret fear was confirmed. Bob had Alzheimers disease.
Dr. Bruce Bogdanoff was a doctor who sat and talked to you for quite a while which is important because its often mis-diagnosed, said Donna.
The diagnosis crushed all hope of returning to normalcy. There is no cure for Alzheimers. There is also no proven treatment. Robert does take Cognex, a new drug which at least one study reports as mildly effective for a minority of patients. But Donna believes it has been helpful for her husband. The only other means of coping with the illness is education and support for caregivers of Alzheimers patients.
That is what the Alzheimers Association hopes to accomplish. The Greater Philadelphia and Delaware State Chapters will conduct a series of free training session for family caregivers of Alzheimers and dementia patients this month. The sessions will be held a the Kennett Area Senior Center, Kennett Square, Tuesdays from 7:00 p.m., beginning this week.
Sessions will cover a medical overview of Alzheimers; coping with behavior and communication problems; activities of daily living and community resources and legal and financial planning. The sessions are free, but pre-registration is required.
Alzheimers has cruelly robbed Donna of the spousal support she treasures. I had to take on all the responsibility myself, she said. Her role is more one of a parent than a partner to her husband now.
Now Bob spends the day at Adult Care of Chester County in West Chester. At first there was resistance. It was like having a child in kindergarten and having the teacher call about bad behavior. But the experienced staff at the center helped Bob adjust. They’ve been a godsend, Donna said. Now it’s his home away from home.
And, once in a while, there is still a flicker of the romantic, witty husband she once knew. Every moment is so precious now, Donna said. For better or for worse, that’s what its all about. As hard as it is, I don’t want to miss one moment of what we have left.
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Originally published in Daily Local News, West Chester, Pennsylvania. April 7, 1996.
Jeannette Scott is a freelance writer from Christiana, Pennsylvania.
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Published in U S Legacies Magazine May 2005
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