Alzheimer’s: It shouldn’t be a lonely journey

By Elaine Ezerins

Staff Writer

The Facts

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FAIRFAX – One woman in Fairfax has devised a solution to the lack of information and support regarding Alzheimer’s in Franklin County.

“When you’re diagnosed, it would be really nice to have a team,” Sheila Dooley said. “On the team you would have a social worker, a counselor, a speech pathologist, nutritionist. They would help guide you through all the tangles that we had to deal with and learn.”

Sheila came up with the idea after her husband was diagnosed with the disease three years ago.

Jim participated in an Alzheimer’s Study at John Hopkins University in Maryland in September of 2013. It was through research, including blood work, magnetic resonance imaging (MRI) and a positron emission tomography (PET) scan, that Jim discovered he had the disease.

He is, most likely, the fifth person in his family to have the disease. His mother passed away from the disease in 1998 and two of his aunts and his grandfather were suspected to have Alzheimer’s as well.

Sheila said Jim was “wobbly” for a couple years at the beginning, but she contributed it to stress and his being overworked. He was a counselor at Veterans Affairs for 22 years and a veteran himself.

In the 1968, Jim got his orders to fight in the Vietnam War. Six weeks in, he accidentally detonated a grenade, sending him back home to recover in a hospital for eight months.

Sheila wasn’t sure if Jim’s concussion from the blast had anything to do with his diagnosis. According to the Alzheimer’s Association, there is a correlation between brain injuries and the disease.

What the pair did recognize was that Jim’s veteran status was the only reason they could afford to pay for a caregiver.

“Financially, we’re careful because we don’t know what’s down the road,” Sheila said. “Even though the VA does help, you have to look at caregivers. They’re not cheap.”

“When I first sought out help, two months ago, I was told there weren’t any available caregivers,” she said. Veterans Affairs came up empty after checking with Franklin County Home Health Agency in St. Albans, TLC Nursing Associates and Home Instead Senior Care in Shelburne.

“Finally we found someone with Armistead Caregiver Services,” Sheila said. “But because we live in Franklin County, they had to come in three-hour blocks at a time.”

At $75 a day, “if I were paying out of pocket, this would wipe us out,” she said.

Right now, Jim is in the fourth stage of Alzheimer’s. This means the symptoms of the disease are “clear cut” and “apparent,” according to the Alzheimer’s Association.

Patients at this stage have a difficult time with math, forget details about their lives, have short-term memory loss and cannot do the work necessary to pay their bills anymore. Sheila said Jim sometimes has a hard time with words and processing things.

She said that they mainly need a caregiver to help him with meals and keep him company when she needs to step out. “We need more people trained to help come into the homes,” she reiterated.

Another concern Sheila expressed was the lack of support groups in the area. The first support group for caregivers began just recently, on Dec. 29, started by Amanda Wilson, the sole Alzheimer’s educator in Franklin County.

“Before that, there weren’t any in this county,” Sheila said. Instead the couple attended a couples group in Essex to network and “find out what other people are going through,” Sheila said. “It’s a safe place to talk.”

“It helped us,” she said. “When we were looking at doom and gloom, we went there and saw, “Oh, you have Alzheimer’s too.”

“It gave us hope,” she continued, “and it also taught us that we can be a voice and that’s when we started becoming more active.”

The couple has gone on to share their story on Alzheimer’s Day the past two years and to speak on multiple panels.

“We talk about the fact that we don’t want to be left behind,” Sheila said. “We don’t want to be put behind closed doors. We want it to be in the forefront because it’s an epidemic.”

“If you look at the numbers, it’s just staggering,” Jim chimed in. “And its not getting any better.”

In 2015, 12,000 Vermonters aged 65 and older had Alzheimer’s, according to the Alzheimer’s Association.

“We want people to be helped,” she said and guidance and support from a team of professionals for people diagnosed with Alzheimer’s would be a step in that direction.