Grandmother's fight with dementia spurs creation of 5K

Jocylen Roberts of Tarrytown recalled the first time her family realized something serious was happening with her grandmother, Phyllis Roberts.

“She was driving one day in Las Vegas, and she called a friend saying she was lost. They never got lost in Las Vegas. They had lived there for 14 years. That’s when she went to the doctor, when she was diagnosed with Mild Cognitive Impairment (MCI), and she wasn’t able to drive anymore.”

At first, Jocylen Roberts said her grandmother’s symptoms were barely noticeable. But over time, after her husband passed away, Phyllis Roberts’ condition worsened to the point where the family moved her closer to them. She and her husband had formerly lived in Tarrytown prior to their retirement, after which they had moved to Las Vegas.

“She lived here at the Atria in Ossining from 2011 to about 2015. When she moved to the Atria, she was in independent living and memory care. She was just a little bit forgetful,” Jocylen Roberts said.

A former piano teacher, Phyllis Roberts had a passion for music.

“She went to a music school for college and then started teaching. She taught at the Ossining Elementary School. Her ear was amazing. She could play anything she heard,” Jocylen Roberts said.

Music remained an important part of Phyllis Roberts’ life during her time at the Atria, when she played for fellow residents, even giving some of them lessons. But eventually the disease eroded her precious talent.

“It got a little sad when she forgot,” Jocylen Roberts recalled. “In the really late stages, it was almost like she forgot the keys and the fingerings. She was a piano teacher for years, and that was her passion. For her to forget that was like … wow.”

When her condition worsened, she was moved to the memory-care floor and ultimately to the Brightview in Tarrytown.

Toward the end, Jocylen Roberts said her grandmother’s condition varied from day to day.

“She’d have good days and bad days. Sometimes, she would start her thoughts and wouldn’t even complete a sentence -- she’d start a sentence and look away. Other days, she would just be completely silent. Those were the bad days. For the most part up until the end, she was verbal, but she couldn’t start a conversation anymore. She would respond to you based on the question you asked,” she said.

Phyllis Roberts passed away two years ago. Jocylen Roberts has held a 5K at Kensico Cemetery in Valhalla for the past three years.

“I was looking to do a 5K having to do with dementia, and I didn’t see any in the area, other than the Walk to End Alzheimer’s,” she said.

She ultimately reached out to the manager of the Westchester Walk to End Alzheimer’s, Karen Finnegan, who told her the Alzheimer’s Association would love to have a volunteer start a 5K, and that they already had a venue that would be interested in having it on their property. Finnegan put her in touch with Judith Mitchell, who works at Kensico Cemetery in Valhalla. The cemetery, which has been there since 1847, features scenic grounds and historic structures.

“Kensico is a really beautiful location,” Jocylen Roberts said.

Now in its fourth year, the event raised $37,000 in 2018 – far beyond its goal. This year’s goal is $32,000, but given the event’s history, it is likely to surpass that as well.

“Every single year, we’ve exceeded the goal, so that’s been great,” Jocylen Roberts said, adding that the reason the 5K has been so financially successful is that Kensico covers the costs, making it possible for all the proceeds to be donated.

“It is really amazing in the sense that they cover everything for the event, and then everything that’s raised goes to the Alzheimer’s Association. Kensico covers the catering. All our sponsorships, registration, raffle, donations – those all go to the Alzheimer’s Association. It’s not like the difference goes to the Alzheimer’s Association. It costs a lot to run the event,” she said.

Lauren Voorhees, Event Manager for the Alzheimer’s Association Hudson Valley Chapter, said the organization is grateful for Kensico’s support.

“The relationship between Kensico Cemetery and the Hudson Valley Chapter of the Alzheimer’s Association is one of mutual respect, and I am deeply grateful to all of the folks at Kensico for their commitment to helping us realize our vision of a world without Alzheimer’s,” she said.

The event benefits the Alzheimer’s Association’s Longest Day fundraiser, named in honor of the long days spent by caregivers of people with Alzheimer’s and other forms of dementia. Participants create their own events to raise money any time they choose; their efforts are celebrated on the longest day of the year, the summer solstice.

“I’m just glad I got involved with Karen, and she put me in touch with Judith at Kensico,” Jocylen Roberts said. “It worked out great. We’ve added and improved things. This year’s number 4, and we’re really looking forward to it. So many people just love the event, and we are so glad.”

If you go

What: Kensico 5K
When: 8:30-11 a.m. Sunday, Oct. 27
Where: Kensico Cemetery, 273 Lakeview Ave.,Valhalla
Register: endalz5k.wordpress.com
Cost: Online fee for adults $50; children 12 and under $15. Walk-in cost for adults: $55; children 12 and under $15.
Donate: Visit Jocylen Roberts' Longest Day page.

About the Hudson Valley Chapter

The Hudson Valley Chapter serves families living with dementia in seven counties in New York, including Duchess, Orange, Putnam, Rockland, Sullivan, Ulster, and Westchester. To learn more about the 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.