The Western New York Chapter of the Alzheimer’s Association will receive a share of 50-million dollars over the next two years. The unprecedented funding comes from the new state budget. For many people it will mean support for the high cost of care-giving at home.
Nancy Switson spent a decade caring for her mother, and describes the cost as astronomical. The two women lived together, and while Nancy worked full time, she would place her mother in adult daycare.
“So she’d be the first one to arrive at adult day care, and the last one I would pick up at the end of the day,” said Switson.
Daycare was expensive, but necessary for socialization and daily care that Nancy sometimes had trouble providing. As her mother’s illness progressed, Nancy took out a home equity loan to support the cost of one project each year, like a walk-in shower and wheelchair ramp. Eventually she needed a new vehicle just to keep getting her mother to daycare.
“The used five-year-old wheelchair van that I purchased was more than I even earn in a year,” Switson recalled.
When her mother passed away in 2005, Nancy was deep in debt. Despite the cost, she said it was worth it, because keeping her mother at home was important for both of their well-being.
“When I would say to her, ‘Where’s home?’ she maybe didn’t know the exact street," Switson said, "But she would say like, ‘right here.’”
Nancy’s story isn’t unique. Across Western New York, an estimated 55,000 people live with dementia-related illness; 400,000 in the state. But thanks to the new grant, the services Nancy and her mother depended on will not only continue, but may expand. Programs like support groups, education classes, and a 24/7 helpline.
“Because at two in the morning when you’re having an issue, you need to reach out and they’re there for all these people,” said Switson.
Nancy’s experience, and the help she and her mother received, drove her to become a devoted advocate for the Alzheimer’s Association. The Western New York Chapter’s Executive Director, Leilani Pelletier describes Nancy as the perfect picture of what an advocate can do. Nancy brings her passion for the cause to lobbying, letter-writing, fundraising, and dying frosting purple in bakeries across Western New York. She says being a caregiver for her mother was the hardest, yet most rewarding thing she’s ever done. Fortunately she had support.
Switson said, “Without the Association, I never could have got through it. So I’m just hoping that I can help make a difference with this horrible illness.”