OSSINING – “I describe it to friends that Stephen King couldn’t create a worse disease,” said Nancy Keane of Ossining, whose mother was diagnosed with early-onset Alzheimer’s disease in her early 50s. “Think about your child’s development, how they’re able to walk and run and do things for themselves. Take that progress, and put it in reverse. To say my family was shell-shocked was an understatement.”
While they knew what Alzheimer’s was, Keane said her family didn’t think it could happen to someone so young. They first noticed something was awry when her mother, an avid reader who worked in a local library, began having trouble reading.
“She used to read a lot. She would pick up a book and not make it through the first chapter,” Keane said.
Eventually they took her mother to a neurologist, who diagnosed her with Alzheimer’s after ruling everything else out. Keane said there likely would have been no suspicion of Alzheimer’s had her mother gone to her regular doctor, because she was so young and seemed fine on the surface.
“She presented very well — I remember that’s how one of the doctors described it. Even when she went to the nursing home, she looked more with it than she actually was,” Keane said. “Once, I remember, I had gotten her a new outfit, and she really liked it — and then she proceeded to change in front of us. I remember that like it was yesterday. Because she looked like she had it together, this was a glaring thing.”
When Keane went to the Alzheimer’s Association’s Purchase office, she found a wealth of helpful information, including descriptions of the stages of the disease and advice for legal and financial planning.
“We couldn’t have gotten things straightened out without that information,” she said. “I look back, and I know that if my parents hadn’t had three educated kids to get it done, and without the help we got from the Alzheimer’s Association,” they would have been in trouble.
This year Keane is planning to participate in the Westchester Walk to End Alzheimer’s, set for Sunday, Sept. 24, at SUNY Purchase.
“It’s the least I can do considering all the help the Association has provided my family,” Keane said. “The support groups, the education on legal and financial matters were an invaluable resource during my mother’s illness.”
Her mother’s condition deteriorated rapidly. “By the time she was diagnosed, she was in the moderate stage, and within two years, she was in a nursing home.” There she received Hospice care for about six years. “The expectation is that you are going to have Hospice care and that their life expectancy is going to be six months. She was in the nursing home for 12 years.” Keane’s mother died in 2007.
“When I think back on my mother’s struggle, it wasn’t only painful for me, but to see the pain in my Dad, brother and sister was awful and made me feel powerless. After years of healing, this was the year to get involved,” Keane said. She also attended the Alzheimer’s Association’s Advocacy Forum in Washington, D.C., earlier this year.
However horrible the disease was, Keane there was another side to the situation, including a deeper connection forged with her siblings.
“I have an amazing bond with my brother and sister because of it. I’m grateful for that,” she said.
She said it has also changed her priorities and perspective on life’s challenges.
“I want to take care of myself. I feel like I have a higher threshold for stress. No matter how upset I get, I remember what we went through with my mother, and that is my benchmark for the worst situation in my life. Nothing a boss can throw at me or a job can throw at me is worse than that.”
The idea that anything good could come out of it took a while to recognize.
“You don’t see it when you’re in it,” Keane said.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s research, care and support. Its mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org/hudsonvalley or call 800-272-3900.
If you go:
What: Westchester Walk to End Alzheimer’s
When: Sunday, Sept. 24. Registration starts at 9 a.m., opening ceremony at 10 a.m. followed by the Walk.
Where: SUNY Purchase West Lawn, 735 Anderson Hill Road, Purchase, NY 10577
Web: Register at WestchesterWalk.org
Contact: Chris Brandt at 646.946.2063 and firstname.lastname@example.org with questions