Portland Daily Sun article
A Place to Start
Published Wednesday, 02 October 2013
Written by Karen Vachon
I’ve had those scary moments when I run into a familiar face, and cannot, for the life of me, remember a name or in what context I know that person. Other times I walk into a room to retrieve something; but when I arrive, have no idea what I went in there for.
I begin to wonder: Is this the onset of early Alzheimer’s? What follows naturally is denial: I’ve got a lot on my mind; I know too many people from various interactions — business, social, recreational; of course it makes sense that a person seen out of regular place would throw me off. I can make lots of excuses. But deep down, I wonder: what would it be like to lose my mind? And how would my family cope with it?
This week I met Sally Tarte, founder of A Place to Start, in Kennebunk. She was the booth next to me at the Maine Senior Guide Expo in Freeport. Maine Senior Guide’s goal is to provide all the resources needed for aging on-line in one place for seniors and family members who care for their aging parents. Traffic at the Expo was heavy, but when there were lulls Sally and I spoke. As is typical in life’s journey; we often don’t know where we’re going. It would be a life event that points you in a direction, giving you purposes to make a difference in the life of others. Sally Tarte’s story does just that.
Sally’s mom, Connie was a vibrant fun loving, silly woman with a boisterous laugh; she loved life; and loved her family. Living life to the fullest, she went back to college while raising six kids. She cared for her husband throughout his journey with kidney cancer — he died in 1993. She had found balance, was comfortable with her independence and joy being with her grandchildren and children.
Eventually, things would change, according to Sally: “Things started to feel a bit different when she would call my house looking for my dad who passed away 15 years ago. She started getting lost when driving. She had sticky notes all over her condo reminding her of daily life. We would find her packed, not sure where she was going. We knew something was not right. We brought her to a geriatric psychiatrist who diagnosed her with Alzheimer’s and vascular dementia. We were all devastated.”
For Sally and her family, there were questions: “How could this vibrant, independent woman have Alzheimer’s?” There was no history of Alzheimer’s in her family. Eventually it was clear, she couldn’t live by herself anymore. Connie was cognitive enough to tell her children she didn’t want to be a burden on them; easing the guilt — living with any one of them was off the table. Still, Sally and her siblings felt guilty; they wanted to honor Connie’s wishes. “We knew nothing about Alzheimer’s and the awful road ahead; we were very naive and not prepared”, said Sally. Unlike most diseases, there is no cure for Alzheimer’s; a disease becoming more prevalent in Maine, with its aging population.
From Falmouth to Kennebunk, the search for facilities began. The goal was to find a place that would keep Connie safe and preserve her dignity. Days were filled with visits, questions; weighing options — add an addition to their home and get around the clock care, discussed, but quickly ruled out: “The costs were astronomical.”
Eventually, Connie settled on Huntington Commons in Kennebunk, impressed by the beautiful environment, it had the progression of care available “if needed.” When Sally and her family toured the Alzheimer’s unit, they all believed their mother would never need this. “Boy were we wrong!” said Sally.
Once the care arrangement was in place, “the fun really began,” explained Sally, as she rattled off the stuff that nobody really wants to think about: Putting in place a Health Directive, Power of Attorney, selling the family home, packing up a lifetime of stuff, taking over finances, taking away the car and the drivers license — all while raising her children and trying to keep up with her day job. “This was very painful for everyone. My mom settled in and we also found her a companion who checked in with us, and took my mother places. We got an e-mail everyday [from her companion] called “Connie’s Day”; boy, do I miss that now,” said Sally.
Despite the comfort and support systems in place, Sally still describes the ordeal as always feeling uncomfortable; “in crisis mode.” Role reversal is hard to grasp — “you’re now making decisions for a parent; such as figuring out medications, scheduling doctor appointment, and advancing levels of care. We advocated a lot; we were present and diligent about my mother’s quality of life” explained Sally, whose mother eventually moved to the Alzheimer’s wing where “her world became very small, but safe and comforting.” This whole period of time and experience taught Tarte a lot: “We learned to enjoy the moment, gently lie, and how to help our kids understand what was happening. It was a very moving time in my life.” Connie’s condition changed quickly; she passed away in December 2011. “We had lost her once, and now we had lost her again. It was so sad, but she was not suffering anymore.”
After this lived experience, Sally began to ask herself: What do people do who have no support? Coming from a family of six kids herself, she wondered: What does an only adult child do; especially if they need to hold down a paid job? So overwhelmed was she and her five siblings; Sally knew this was an impossible task for most people. She started doing advocacy work for the Maine Alzheimer’s Association. She became a member of the Maine Strategic Planning Committee for Alzheimer’s and Related Dementia. She spoke at Alzheimer’s events; she went to local government offices; she told her family story to Olympia Snowe, Susan Collins, and Chellie Pingree’s staff members — advocating for funding and awareness.
Called, was she, to help people and families with this disease. A Place To Start was born. This 501(C)3 nonprofit offers free consultations, and develops a customized action plan for families. “We listen and help put a plan in place,” explains Sally. A Place To Start assists family members on the journey; helping them tour assisted living facilities, adult day-care programs; they direct and connect people to all available resources, but “most of all [we] listen,” says Sally; whose personal journey knows that acceptance comes along the way; it’s nice to know someone who has been there, and done that. This organization doesn’t charge for their services. Rather, they rely on volunteers, donations, fundraising, and grants.
On her trade show booth table, were purple bracelets, with a sign: $5 donation. As people made their way around the various booths scooping up the many offered freebies like Halloween trick or treating, I observe a man approach Sally’s table, with $5 in hand. He hands it to Diana Dubea, a volunteer, saying: “I can see that this is for a noble cause.” He admits, he doesn’t completely understand it, but he just senses the organization does good work. That about sums up this mysterious disease, that has no cure. The bracelets where made by eleven year old, Phillip Rossborough. So touched was he by the work that Sally’s organization did for his grandmother and family, Rossborough began making the bracelets, where he donates 100 percent of the profits to A Place to Start. His bracelets have raised over $1,200 for the organization.
As for my inability to recognize a face, or remember what I went into a room for, Sally suggests I visit the 10 signs of Alzheimer’s (http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp) to see if I have any signs. I’m pleased to say, I don’t. But, if you are wondering for yourself, or for a loved one, this is a good place to start. And if you’d like some help sorting out a diagnosis of Alzheimer’s A Place To Start welcomes you. They also are looking for volunteers.
Karen Vachon is a Scarborough resident. She is a licensed health and life insurance agent and active community volunteer.
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