2014-06-13 / People

Caregivers are focus of fundraiser

By Alex Acquisto
Staff Writer

KENNEBUNK — A Place to Start is focusing on the often-overlooked role of caregivers for its annual fundraiser later this month.

The Kennebunk-based organization was started by Executive Director Sally Tartre, whose mother, Connie Roux, died in December 2011 of complications from Alzheimer’s disease.

Tartre and her two sisters founded A Place to Start in September 2012 as a way to help others dealing with complications of Alzheimer’s disease by offering free consultants, information about treatment, available facilities and general support.

“We have helped over 40 families in some capacity in the last two years,” Tartre said of the nonprofit, which relies exclusively on donations and fundraising for its services. “Maine is the oldest state in the nation, and it is estimated that 37,000 people in Maine are living with an Alzheimer’s or related dementia; by the year 2020 this number is expected to rise to over 53,000.”

This year, Tartre said, the fundraiser being conducted via a newsletter and a social media campaign is focusing on “how caregivers are the forgotten people in this disease.”

“I just don’t think people really understand the time that these people put in and how devastating this disease is,” Tartre said. “I think people think of Alzheimer’s as affecting only an older generation, but we’re seeing a much earlier onset. We’re talking about 60-year-old people living with this.”

One of those people was Karen MacGregor, whose husband began developing signs of Alzheimer’s disease in 2011.

MacGregor’s experience was different, however, as her husband was barely in his 60s, and she was just 57.

Disoriented and lonely after the diagnosis, MacGregor quickly found she was navigating in the dark when it came to seeking treatment. “When you get a diagnosis of Alzheimer’s, there’s no support system in place to help you,” MacGregor said. “It is overwhelming to try to navigate the caregiving system, especially when you have a younger person who has it. I can’t tell you how lonely and isolating it is.”

MacGregor said, upon learning about her husband’s diagnosis, the only direction she received was to go to the Maine Alzheimer’s Association in Augusta. “I think a family should be meeting with a social worker right at that moment,” MacGregor said.

It wasn’t hard to find support groups, but attendance isn’t really an option when someone has to be monitored around the clock, MacGregor said.

That’s when MacGregor saw an ad in a local newspaper for A Place to Start.

“I went to her (Sally) looking for help. I wish all doctors’ offices had her name and card,” MacGregor said of Tartre. “There needs to be more agencies like this.”

Tartre pointed MacGregor in the direction of various caregiving facilities.

“She actually toured them with me. She has the unique ability to connect with all kinds of clients because she doesn’t present only one solution to a problem,” MacGregor said.

Echoing Tartre’s earlier point, MacGregor said, “What I’m going through (younger onset of the disease) is unique to other people (who are dealing with Alzheimer’s). I’m still working and a lot of us still have kids at home.”

In her testimonial on A Place to Start’s website, MacGregor wrote, “When I started working with Sally, at A Place To Start, I felt immediate relief. She is knowledgeable about the disease and the resources in Southern Maine. She is someone who ‘has been there,’ drawing on that experience, yet valuing the individual differences of each person’s situation. Sally’s willingness to help me, in whatever way I want, has made me feel like someone is watching out for me. I know that I can contact her as my husband’s disease progresses and I am faced with new challenges.”

“I think we are so lucky to have this in our community,” MacGregor said.

For more information on A Place to Start or fundraising, visit www.aplacetostartfordementia.org.

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