Heartbreak of dementia drives woman's efforts to end Alzheimer's

As a 15-year caregiver for her parents, who both eventually suffered from dementia, Kathy Wills of New Windsor knows the heartbreak it entails.

Her parents, Thomas and Eileen Wills, had moved to Florida from Long Island after retiring in 1985, and as they got older, Kathy Wills flew down every few weeks to help them clean and shop. Her father was in his mid-70s when he began showing signs of memory loss.

“He would ask you the same question over and over again. He was in a loop -- he would start telling a story, and then when he finished, he would start over again,” she recalled, adding that another sign was when he no longer knew how to use a screwdriver after a lifetime of being handy at plumbing, carpentry and electrical work.

Triple-bypass surgery when he was 85 worsened the dementia and left him unable to speak coherently.

“He never recovered from that, he almost never spoke, and when he did speak, it was gibberish,” Kathy Wills said.

When her father was later hospitalized with blood sugar over 800, she realized her mother could no longer handle the caregiving. It turned out that she had stopped monitoring his blood sugar when the machine had stopped working. Once her father entered a rehab facility, Kathy Wills knew she needed to move the two of them to an assisted living facility.

A case manager at the hospital put her in touch with the Alzheimer’s Association in Florida, who helped her handle the situation.

“They helped me approach the drastic change in their life,” Kathy Wills recalled. “I really did need that guidance on how to approach the subject. There was no getting around some difficulty, but I did manage to get them up here with the help of my sister, Patricia.”

Her parents initially lived in the assisted living facility together until her father’s condition required more care, when he was moved to a dementia unit.

As she navigated these changes, Kathy Wills said she found the Alzheimer’s Association website very helpful, “Once I had them in assisted living, I was on the website constantly. I read everything I could to try to guide me through the expectations of the next stages as the disease progressed.”

She advises others in the same situation to accept that they cannot change what is happening to their loved one.

“It’s out-of-control on every level, on their part, on your part – and there’s nothing you can do. You have to accept that it’s happening,” she said.

While the desire to handle things on one’s own is understandable, she said it’s too hard to handle without help.

“You can’t do this by yourself,” Kathy Wills said. “You need the help. You need the guidance. You need to stay a step ahead of this, because it’s going to catch up to you so fast you can’t tell what’s happening.”

Wills is now is active as an Alzheimer’s Association advocate who traveled to Albany in March to push for more state funding for public awareness. She also participates in the Orange/Sullivan Walk to End Alzheimer’s coming up on Saturday, Oct. 5.

“I’m giving back. The Alzheimer’s Association was there for me every time I called,” she said. “I’m at full steam ahead now, because nobody should have to watch this happen to someone they know and love.”

The Orange/Sullivan Walk to End Alzheimer’s will be held at Thomas Bull Memorial Park in Montgomery on Saturday, Oct. 5. Registration starts at 9 a.m, and the opening ceremony is at 10 a.m., followed by the walk. Those who would like to make a donation or register to participate may do so at OrangeSullivanWalk.org.

About the Walk to End Alzheimer’s

The Walk to End Alzheimer’s is the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research programs. Participants learn about Alzheimer's disease, advocacy opportunities, clinical-study enrollment and support programs and services.

About the Hudson Valley Chapter

The Hudson Valley Chapter serves families living with dementia in seven counties in New York including Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster and Westchester. To learn more about programs and services offered locally, visit alz.org/hudsonvalley.

About the Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. 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 www.alz.org/hudsonvalley or call 800.272.3900.

If you go

What: Orange/Sullivan Walk to End Alzheimer’s

When: Saturday, Oct. 5. Registration starts at 9 a.m. Opening ceremony is at 10 a.m. followed by the walk.

Where: Thomas Bull Memorial Park, 211 State Route 416, Montgomery

Register: OrangeSullivanWalk.org