Father's death from dementia drives daughter to take icy plunge

On Feb. 8, Amanda Hinski of Saugerties will be among the 102 Subzero Heroes registered to jump into icy Berean Lake in Highland to raise money for the Alzheimer’s Association. She initially became involved with the cause when her father, Peter Hinski, was living with Alzheimer’s disease, participating in The Longest Day fundraiser first in New Jersey and for the past two years in Saugerties in partnership with Perfect Blend Yarn & Tea Shop.

She got involved with Subzero Heroes after attending a joint celebration at Hudson Ale Works in Highland last summer to thank Longest Day participants for their efforts in 2019 and launch the 10th Anniversary season of Subzero Heroes.

“It was a great day for the Subzero Heroes people to meet the Longest Day people, and it was a great way to get people involved. I met a few people there, and they kind of roped me into it. Now that it’s a few days away, I am wondering what I was thinking,” she said. “I am excited to be with other people who understand the impact of this illness and do something very much out of my comfort zone, but also I know I’ll feel good about it.”

Peter Hinksi was diagnosed with early-onset dementia more than a decade ago.

“He was in his late 50s at that time, and it was a big shock to us. We really didn’t know what that meant,” Amanda Hinski said. “The diagnosis is one thing because it happens on a random day at doctor’s appointment, and everything’s the same” -- until suddenly it isn’t.

She said her mother, Christine Hinksi, and she were not prepared for the course the disease would take.

“We didn’t know what dementia was or what to expect, and I would say we were very ill-prepared for what was ahead of us. He and my mom owned a bicycle shop together, which she still runs in South Jersey. She was still taking care of him, and he was still at the shop. She was still trying to keep him busy even though he couldn’t repair bicycles or work with customers anymore. It became apparent that she couldn’t run the business and take care of him anymore.”

Yet even then, they didn’t fully realize the extent of his condition.

“We realized had had memory issues -- he got confused, he couldn’t drive anymore. We knew he really couldn’t be left in the house alone because he might get confused, but we didn’t know how much supervision he would need,” she recalled.

She described a frightening incident that drove home the reality of their situation.

“There was one day when I was staying home with my dad, and I was up in my parents’ house in my old bedroom, and I came down and the front door was open, and he was gone. So I walked around the house and the yard and couldn’t find him, and it was dark, so I just got in my car and started driving, and I found him in the middle of the road. He had gone out with the trash and just gotten lost. That’s when we realized he needed a lot more supervision.”

She and her mother found a day center for people with Alzheimer’s and other forms of dementia.

“We met with them for an intake interview. At that time, almost no one but my mom could take care of my dad, and she knew what the trouble spots were for him. When we went to this interview, I went in first, and she stayed in the car with my dad, because she couldn’t leave him alone and no one else could really take care of him.”

The person at the center recognized this as a red flag that things were worse than the family realized. She said it would only continue to get worse and that if her father could no longer be left alone, there were people who could take care of him. She added if he couldn’t go to the bathroom alone, he was probably beyond what their facility could provide.

“When we went to the intake at that day center, she pointed out to us what we hadn’t accepted,” she said.

“We did eventually find an assisted living facility for him that specialized in memory care, and that was probably when we saw the biggest decline,” Amanda Hinski recalled. “He was in that facility for about two years. Eventually, I got a call that he had taken a turn for the worse, and I needed to get there.” Peter Hinski passed away in January 2015.

She said she thinks many people don’t really understand the full impact of Alzheimer’s and other forms of dementia.

“I think of lots of people think that with Alzheimer’s and dementia, you just lose your memory, but it’s so much more than that. I think that’s why it’s so important we share these stories. People don’t realize it’s an epidemic. It is growing so much faster than other issues that get a lot of attention. I always tell people this will affect all of us at some point in our lives.”

She said she was grateful she was young enough to have an impact on her father’s care.

“In some ways, I feel fortunate that I was younger when it happened to me, because I was still healthy and independent, and I was able to advocate for him. We went to so many support groups and met so many people in the facilities, and many of them were not able to care much for themselves, let alone for another person. The resources they were able to get were so much less. While I am young and am able to fight for this issue, now is the time to do it,” Amanda Hinski said.

She advised others living with the disease to seek support.

“The only thing I would say is that you are not alone, if anyone is going through this. There are so many people out there that can relate. Reach out to them. Those support groups really are helpful, even though I was the youngest person in them. Learning from other people, the resources they found, and there’s something therapeutic in being able to take your experience and help other people,” she said.

If you go

What: Subzero Heroes ice jump to benefit the Alzheimer's Association, featuring a costume contest, hot chocolate bar, gourmet soup, raffles and a drone photographing jumpers.

When: Saturday, Feb. 8. Sign-in starts at 10:30 a.m. with jumping beginning at noon.

Where: Berean Park, 1 Reservoir Road in Highland. Participants are asked to park in front of Tractor Supply in the Bridgeview Plaza on Route 9W to be shuttled to the park, as parking is very limited on site.

Cost: Free to attend. To jump, Heroes must raise at least $200. The amount raised determines the jumping order, with the top fundraisers jumping first.

Contact: Lauren Voorhees at lvoorhees@alz.org or 845.763.4697.

Web: Register or donate at subzeroheroes.org

About Subzero Heroes

Subzero Heroes started in February 2010, when 25 Heroes jumped into a frozen lake as approximately 80 others watched. The event has expanded dramatically since then, and more than 1,000 people are expected to participate this year.

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 alz.org or call 800.272.3900.