MY WORD

I cannot take full credit for this article, although it does reflect my most personal sentiments. It was Jack Pearpoint of the Marsha Forest Centre, working with Maurice Voisin, who largely penned this article. Maurice is one of a small group of friends who helped ensure that a gentleman by the name of “Edgar” experienced an end-of-life experience filled with dignity – and surrounded by compassion.

In part, Edgar’s story is extraordinary because he had only just arrived at a new home two weeks earlier. For decades, he had been “institutionalized,” and then, on the eve of his becoming emancipated from “care,” he was diagnosed with a terminal illness.

Prior to his diagnosis, an individualized plan had been developed to allow Edgar to be supported in his own home by a small community living service agency, South East Grey Support Services (SEGSS) in Flesherton, Ont. SEGSS has a history of design- ing supports around each individual’s needs. When SEGSS heard that Edgar was not in good health, the staff asked to speed up his arrival in Flesherton. An accessible house was in the plan a few months before Edgar’s arrival, support staff were trained, special short-term nurses were contracted – and thus, in early September, Edgar moved to Flesherton.

In many ways, the last two weeks of Edgar’s life were uneventful by SEGSS support standards. Edgar was able to decide little things like what he wanted to eat, where to go, what to do – small daily decisions that may seem trivial, but prior to his move, he had limited opportunities to exercise choice. Over the last two weeks, there were family reconnections. Edgar’s mother and stepfather travelled from New Brunswick; his sister and her family from Toronto; his brother and his family from Brighton, Ont. Edgar and his family spent precious time together. They all felt welcome and tasted dignity and “community life” in Edgar’s new home.

Life, of course, is out of our control, and Edgar’s cancer was in the late stages. He passed away after approximately two weeks in his own home. He died holding hands with one of the supporters who gathered to give him a life and death with dignity.

And so Edgar, in addition to having two weeks of life in his own place, also became a powerful teacher for all of us. He reminds us that “it’s never too late”; that a full life is the best life for everyone – no exceptions; that with a little help from a lot of people, a new life can be started. And, to borrow from an old idiom, what goes around actually does come around!

Edgar’s short “life” in Flesherton was a powerful lesson that dignity matters, and that relationships matter. Sometimes, in the daily rush, we forget, and Edgar reminds us. And in his death, he taught us that however shattered foundations are, there are shards that can be glued and mended to some degree. And there are others who will stand in and fill the gaps. We all have a need for belonging, for community, and Edgar showed us how it can be done – sometimes merely by the power of his presence.

If Edgar had died a month earlier, before moving into the community, things would have been different. With Edgar living in Flesherton, his family had the advantage of being closer. They were offered a room at Edgar’s home to stay in during their visits.

After only two weeks, dozens and dozens of people gathered to pay tribute to a man who taught them about the importance of relationships and the power of belonging. Not everyone had even met Edgar, but they had rearranged schedules and made dozens of small daily accommodations so that he could move into the community on short notice; so he could have a taste of the good life; so there would be time for his family. Everyone had made accommodations to make Edgar and his family welcome.

Now a postscript. A legacy of Edgar’s time at SEGSS is an opportunity for another individual to live in a new, accessible home in a beautiful country setting! And the lives of Edgar’s staff have been enriched by the opportunity to support him for a brief period of his life.

The lesson here is about the power of an individual in the context of family, of community. Without Edgar, there would have been no place and no reason to rally. With Edgar, the story is about family and community – and reciprocity. A perfect circle.