LORI GALLAGHER Fredericton Daily Gleaner

January 17, 2014

Special keepsake: Andy Scott asked Judith Tompkins, a volunteer with the narrative care program at Hospice Fredericton, to create a book about his special relationship with his seven-year-old son. The title of the book is Noah’s Dad.

To be remembered, to make an impact on someone else’s life, to let the people in our lives know we love them, these are things most of us want.

Individuals with end-stage illness are discovering a wonderful way to do all of this by sharing their stories and photos through Hospice Fredericton’s narrative care program.

Working with Judith Tompkins, a Hospice Fredericton volunteer, they’re creating a book to serve as their life story, a piece of them that will be remembered and treasured long after they’re gone.

“I became interested in narrative care probably two to three years ago when I attended one of the aging conferences that is done by the York Care Centre,” says Tompkins.

At the time, she was volunteering with Hospice Fredericton and was also on the board of directors.

“I saw this was a perfect fit for what we as volunteers do when we go into the home because we spent two to three hours, once or twice a week, sitting with the clients, talking with them, while the primary caregiver has a break,” she says.

Once the idea for the narrative care program was planted, the universe began to unfold as it should, she says.

Tompkins was matched with a new client, a woman in the last stages of cancer.

“At the end of our first visit, the husband of this woman asked me, out of the blue, ‘Do you know how to operate a Mac?’”

She had purchased a Mac about a month before and was learning to use it. He told Tompkins his wife wanted to do a book of photos from their last trip to Italy.

“I went home that day and for the next week, until my next visit with the family, I sat down in front of my iPhoto program and spent a solid 40-hour work week learning that program.”

She decided the best way to do that was to create a book, which she did using photos of the Saint John River she’d taken from the balcony of her condo.

“When I went back to her the next week, I felt I had learned enough of the program, so we sat down with her Mac computer and lo and behold her iPhoto program was a different version than mine,” says Tompkins, laughing. “However, I stumbled my way through it.”

They worked together for four or five weeks before the woman died. At that point, they had put together some draft pages.

“He called me about three months after her death and he was so excited. He’d gone into her computer and found the book and thought it was just about done. He tweaked it and added some text to it and finished it.”

He even printed off a copy for Tompkins.

“It was such a revelation for me, what this book meant to him and what kind of closure this gave to him,” she says. “Because he felt that this was a last gift from his wife, of their last trip together with their young son.”

After that experience, she knew she had to do something with the narrative program, creating books for those who wished to do so.

“I worked with another family and we did a book of his life. I was with that family for about five weeks,” she says. “I started from day one, the first visit I had with them.”

They went through photo albums, he told her stories and in between visits Tompkins worked on his book.

“The process was very fulfilling for me, but more than that, I truly believe it helped the family because they were going back and looking at times past and wonderful memories and sharing stories from those times instead of staring at this frightening future that was coming down the tubes at them,” she says.

Unfortunately, he died four days before Tompkins received the book but his wife and his sons and his mother were thrilled to have the finished product.

The third book she created was unique, as all these books are, but this one began with a request from a special client — Andy Scott.

“He knew Hospice was doing this and he requested our services to help do a project for his seven-year-old son, Noah,” she says. “He wanted something just for his son that had nothing to do with him as a politician or his public life.”

And he wanted it to be called Noah’s Dad.

“I spent about an hour with him learning what he had in mind. He had stories he didn’t want to get lost that he wanted Noah to know,” says Tompkins.

“He was just a delightful man. I had never met him before and I was so inspired by him and by his energy and by the way he was handling this whole thing.”

They first met on a Friday, she wrote the stories on the weekend, then returned on Sunday to meet with Scott again. She noticed a marked difference in his energy in that short time. They decided at that point to tell the rest of the story through photos.

“The whole book is basically Noah’s relationship with his father for the seven years he had his father,” she says.

The last time she saw him was that Sunday. He went into the hospital that night and died the next night.

Following his death, the project went on the backburner for a couple of months as she didn’t want to trouble his family. In September, she contacted his wife, Denise Scott, to see if she wanted to continue the project. She did.

“Part of my process is I always take the book in a PDF format to the primary caregiver or the one who knows the client the best and they proof it,” she says. “I asked if Denise would do that for me. I took it on a memory stick and we went though it and she was very touched by it even in that format.”

Normally, the volunteers with Hospice Fredericton would never share the details of a narrative care project, but this is a special case.

“When Andy asked for this narrative care project to be done, he did it from the perspective of raising social awareness for Hospice Fredericton,” says Tompkins. “We had his permission and Denise’s permission to use this book to help promote Hospice.”

That was the kind of person Scott was, she says, always wanting to help others.

Tompkins says being part of the narrative care program has been a wonderfully enriching process.

“I have many people say to me, ‘Oh, you’re a Hospice volunteer. I don’t know how you can do that. It must be so hard.’ For me it’s a gift because I’m so empowered by it and I’m so enriched by these people that I meet,” she says. “They’re at the end of their lives, and to be able to be just a small part of that journey that they’re making, it’s unbelievable.”

Currently, she is the only volunteer doing the narrative care program with Hospice Fredericton, but Stephanie Golding, program co-ordinator with Hospice Fredericton, says they hope the program will continue to grow and expand so it’s available to any clients who want to create a book.

“This isn’t for every family,” notes Tompkins, as it does require some participation and some families aren’t in a place to be able to do that.

The narrative care program is one piece of the services offered by Hospice Fredericton, says Golding.

“The components of what we offer are: the in-home support, where client service volunteers go and support individuals with end-stage illness at home; the narrative care, which is a new program; as well as our grief support program,” she says.

The hospice program has grown in response to the need that has been found in the community, she says. For example, recently the program has expanded to include services in the Oromocto area.

“Effective Jan. 1, we do have a core group of volunteers trained to service that area as well,” says Golding, adding, “And the residential hospice initiative is one that’s going to bring our services to a different level as well.”

To learn more about Hospice Fredericton, visit www.hospicefredericton.ca.