Editor’s Note: This is another in a series of Messenger reports regarding efforts locally to battle dementia and Alzheimer’s disease and to assist those affected by it.
ST. ALBANS — In Franklin County an estimated 900 people currently suffer from Alzheimer’s disease and live with fear, denial and a sense of helplessness.
There is no warning.
There is no cure.
“Alzheimer’s has a huge impact on our community every day,” Amanda Wilson, of the Alzheimer’s Association’s Vermont chapter told more than 30 people that turned out to a community forum on Saturday. The event, held at the Northwestern Medical Center, was organized by the Franklin County Dementia Care Coalition (FCDCC).
Among those attending were two women who learned all two well the incredible impact dementia and Alzheimer’s has on a family.
Lisa Moss, of St. Albans, lost her father Joseph “Roland” Benoit to Alzheimer’s disease on Dec.15. However, she and her daughter, Cherie Chaloux-Warren, Mr. Benoit’s granddaughter, had joined FCDCC when it just first formed.
“Then things just spiraled downwards for us and we had to back off to take care of my father,” Moss said.
Her family suffered the effects of Alzheimer’s for six years, and Moss felt that not having a proper diagnosis was a huge part of the problem.
“The last four months of us caring for him was non-stop chasing him; he would get in the car and drive, we ended up having to give him a fake set of keys,” Chaloux-Warren said.
“We had to put an alarm on the door,” Moss added.
“He thought he was going back to where he grew up by the bay, and he often ended up at our house,” she said.
“It was like he thought I was his mother.”
“They changed his medications and put him on Risperidone (an antipsychotic used to treat schizophrenia and bipolar disorder), and within 24 hours he was having fainting spells and we took him to the emergency room,” Moss said.
“They sent him home and within five hours he was back and the next morning he suffered a massive heart-attack and actually died. We pulled the plugs, and took him off everything,” she added.
“Within a few hours he was awake,” she said.
“But he was very confused.”
“My father went from being on comfort care measures to being transferred to a locked floor at University of Vermont Healthcare,” Moss said.
“He didn’t know what he was doing, he was combative, and for four months he was in a room on a locked floor.”
“No nursing homes wanted to take him because he was combative and needed one on one attention constantly,” Moss said.
“I ended up having to be there every day to help handle him,’ she said.
“My mother was in denial pretty much from day one; wanting to take him home,” Moss said.
“Her sister passed away from Alzheimer’s and my dad also had a sister that did a few months prior, but she was still in denial,” she said.
“Denial, denial, denial!”
Finally, her father was taken to Birchwood Terrace Healthcare, in Burlington.
“It was like as soon as he was brought through the doors he had a sense of relief; it was such a big change,” Moss said.
“I can’t say enough about the staff and the care there, it made such a difference,” she said.
Several other people from the audience also shared their experiences, voicing frustrations ranging from lack of educational opportunities to limited resources, and affordable care options.
Some, like Moss, just wanted to share their stories of grief with heartfelt passion.
Alan Shannon, who acted as moderator for the FCDCC forum, said, “This certainly resonates with all of us.”
“Alzheimer’s is such a hard thing to deal with, because the person you love is still there,” said Shannon, who is also admissions coordinator at St. Albans Healthcare and Rehabilitation Center.
Shannon said the one thing that is very clear is the need for advocacy.
“We all need to come together to create change, this coalition is just taking off,” he said. “Our next step is to start looking through the comments and information and to look at what we can do moving forward.”
Following the event, Wilson, said, “Interestingly from the narratives, as well as the caregiver assessment results, overwhelmingly caregivers reported that they don’t know what resources are available to them.”
“So clearly just education and connections are so important,” she added.
Wilson explained that FCDCC is a group of community volunteers that formed after getting together to discuss bringing the Walk to End Alzheimer’s back to the area.
“We knew that we needed so much more than just a walk and fundraisers, so we created a larger coalition with the mission of enhancing the quality of life for persons living with Alzheimer’s and connecting people, growing our resources, and engaging in advocacy,” she had told her audience.
She explained that the estimate of 900 local victims only included people actually diagnosed with Alzheimer’s disease, not the many others that have various forms of dementia.
“What our coalition is asking you to do today is to ask questions, to share concerns, to tell your stories, and to voice your complaints because we want to hear what is working and what isn’t,” Wilson had urged the crowd.
She said that while there are many programs that were designed to assist Alzheimer’s caregivers, they were created on a national level, and often do not fit the needs of our local residents.
“They are just not always working in our setting; in our communities,” she added.
The challenges already identified by FCDCC are problems inherent in the rural nature of the community, lack of caregivers, educational opportunities, resources and assistance.
The strengths locally are seen as: the increasing number of those showing support, the fact that the Alzheimer’s Association has a Vermont chapter, and that Franklin County is known for being a close-knit community.
“We will look into the need for education and support, and ways to help people find the local resources they need,” said Wilson.
She announced the new FCDCC Resource Line, which is being sponsored by Franklin County Home Health Agency. The FCDCC Resource Line number is: 802-582-5900.
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For more information visit www.fcdcc.org or email Amanda Wilson at firstname.lastname@example.org