Loss of mom to Alzheimer's spurs woman, family to take icy jump

This year, for the second time, Terry Malone of Greenville, Orange County, will jump into icy Berean Lake on Feb. 8 as a Subzero Hero. After several years participating in the Orange/Sullivan Walk to End Alzheimer’s, she made the jump for the first time last year.

“We had been talking about doing this plunge. My husband said to me ‘How are you doing this? You don’t even go in the pool if it’s under 80.’ My sister and I talked each other into doing it.”

Their motivation was their mother, Marian Descharnais, who had been living with Alzheimer’s for several years. It was about 7½ years ago when Terry Malone and her mother first began to realize something was different.

“She started noticing that she was forgetting words for things, just easy words. Right in the middle of a conversation, she wouldn’t be able to remember a simple word,” she recalled.

For her part, Terry Malone noticed there was something different about her mother’s eyes, “There was a different look about her.”

As things got worse, they went to a local neurologist who did an MRI and a CT scan and put her on Aricept. Unfortunately, the drug did little to help her, so they tried going to a specialist at Montefiore. He ran a variety of tests before diagnosing her with Alzheimer’s disease.

Six months later, tragedy struck when her brother, Frank Descharnais, died suddenly from an embolism. The loss hit her parents especially hard since they had been very close to her brother, who had visited them from Pennsylvania practically every other weekend.

The loss moved the family to start Team Frank for the Orange/Sullivan Walk to End Alzheimer’s.

“He was just one of those very generous guys, and we wanted to pay it forward in his name because he was very close to our parents,” Terry Malone said.

The family did some fundraisers and continued to participate in the Orange/Sullivan Walk to End Alzheimer’s each year. Marian Descharnais took part in the walks, the family pushing her in a wheelchair. Last fall was the first time she was unable to participate, as her health was rapidly declining by that time.

About a year after Terry Malone's brother's death, shortly after her parents celebrated their 60th wedding anniversary, her father, Jeff Descharnais, fell and broke his pelvis, an injury that ultimately led to his passing. Terry Malone and her husband Larry Malone built an extension onto their house so her mother could move in with them and their daughter, Grace Malone, who was 11 at the time.

Terry Malone said before her mother moved in, she took one of the Alzheimer’s Association’s educational classes, “Living with Alzheimer’s: For early-stage caregivers” at Braemar in Middletown taught by Donna Davies, Care Consultant/Senior Director of Programs & Services for the Alzheimer’s Association Hudson Valley Chapter. She said she was initially worried whether she would be able to handle the caregiving, having heard troubling stories from others.

“You talk to a lot of people who are in the middle of it, and it’s such a defeated conversation sometimes,” she said. “I remember in the beginning asking Donna, ‘Is this something I’m going to be able to do at home?’ I made my father a promise, and my mother deserved to be with me. She said, ‘If you have the resources and the help, you can absolutely do it, if that’s what you want to do.’ ”

Seeking to give Marian Descharnais as much social interaction as possible, Terry Malone and her husband made a point of hosting family gatherings at their home.

“That doctor from Montefiore said the most important thing we could do for Alzheimer’s was socialization, having people around. My parents’ house had always been the center for holidays, birthdays, get-togethers in the summer, with people coming in and out. Now our house became that. My younger sister would come usually every other weekend and stay over. We tried to take care of her as my father and brother would have wanted,” she said.

Over time, their range of activities decreased. “In the earlier days, we would go on little trips to the beach, and then at the end it was just more of less and less,” she said, adding that only a couple of months before her mother’s passing, they still able to go to the movies together. “I’m not sure how much she grasped everything, but at least it got her out.”

She said her mother retained a positive demeanor living with Alzheimer’s.

“Even with Alzheimer’s, and even at the end, my mother always had a smile on her face. It was amazing, because she had eight kids and was the kindest most selfless person -- and stayed like that. I was really blessed with her,” Terry Malone said.

Even so, it was often very hard. Her mother would get very frustrated trying to tell a story that she couldn’t finish. She loved to read, but unfortunately lost that ability early on.

“They told us she should do the Word Finds. It was like we were asking her to do homework; she would get so annoyed with it. And after a while, she couldn’t read the paper,” which was also due to the fact she had glaucoma.

Throughout it all, Terry Malone said her husband, Larry Malone, and daughter, Grace Malone, were a great help.

“My daughter was 11 -- she is 16 now -- and so that was a little bit of a challenge, too. In the beginning, my mother was fine, we would go places and do things together, but as it progressed, I was more limited, and my daughter was a teenager, so she had to deal with a lot, too. My mother until the end loved my daughter; she was very good with her. And my husband, I never could have done it without him. My mother loved him. He was so easy going and loved having my mother here.”

Ultimately, her mother’s disease advanced more rapidly than she expected.

“She had been hospitalized in June for two weeks. They wanted to put her in a nursing home, but I didn’t want that, so she came back here, but then it was just one thing after another. She was on Hospice for about 12 days.” Marian Descharnais passed away in October 2019 at age 86.

“I was just so grateful that I was with her until the very end,” Terry Malone said.

Now, as she adjusts to “the new normal” without her mother at home, she plans on bringing a bigger team to Subzero Heroes, including her husband and more of her siblings.

“My younger sister is like, ‘This year we need to go all the way under!’ My brother and my nephew and cousins, they did cannonballs and went all the way under last year. We just jumped in; I think that’s good enough, but we’ll see,” 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.

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.