There’s a new book out, just launched on March 21 at the Richmond Cultural Centre, in a room festooned with blue and yellow balloons, Hello, My Name is Ken.

Amongst bouquet of daffodils, author Diana Frizell sits at a table signing her book chronicling the vivid life and eventual death of her brother, Ken Frizell, a man who lived his whole life in Richmond.

“Ken was a Down Syndrome fellow,” Diana says. “He was 15 months older than me so we kind of grew up like twins. Because of his developmental pace, we kind of grew up together. It’s not like I blew past him.

“We developed kind of similarly so that by the time we were three and four years old, we were inseparable. We just bonded completely and stayed like that our whole lives.”

Diana sounds perplexed when she describes some people’s reaction.

“Growing up with Ken, we’d often get, ‘Oh it must have been so hard for you as a family,’ but oh my God, no. He was a gift. He taught us more. I don’t know what my life would have been without him. He was definitely not a burden.”

The first half of Diana’s book chronicles Ken’s life in his family, his school—Richmond High where he won the drama prize in Grade 12, and his community where he was an enthusiastic sportsman and worker, holding down a variety of jobs.

“The reason I wrote the story is that he was this amazing guy all his life. As with all people with Down Syndrome, they are predisposed to Alzheimer’s Disease. He was unfortunate enough to get it,” Diana says.

By age 50, fifty percent of people with Down Syndrome will have Alzheimer’s. For everyone else at that age, without a rare, and likely inherited, disposition to early on-set Alzheimer’s Disease, their dementia risk is very low. Alzheimer’s Disease is one kind of dementia.

At first, at age 48, there were small problems with Ken’s leg; it wouldn’t work properly and would sometimes hurt but Ken, while highly verbal, didn’t have a way to describe what was happening to him.

Then Ken started to have big problems. He had trouble speaking. Many health care professionals, unfamiliar with the wide range of abilities people with Down Syndrome have, didn’t realize these were new problems for Ken, that he had once functioned very well, at home and in the community.

“When he was not able to move properly, not able to eat properly, the doctors would ask us, ‘Has he always been like this?’ Mom’s reply was always, “He was an amazing fella.’”

Part of Diana’s reason for writing the book is to educate others so they can learn the difference between a healthy person who happens to have Down Syndrome and someone with Downs who has dementia.

“That’s why it’s important to get the message out because I was his sister. I am only 15 months younger and I knew him so well. It’s very different from what a parent or a professional might know,” says Diana.

“That’s why it’s so important to get this book out to as many people as possible about what aging with Downs is like.”

Then, one day, Ken had a grand mal seizure, the first epileptic episode of his life. The medical professionals took notice. The diagnosis came; Ken had early-onset dementia, likely Alzheimer’s Disease.

Diana said her family tried to help Ken cope with his declining abilities.

“It was very challenging. It moved so fast. We could barely keep up. Every time we found a solution, he’d moved on.”

She tells of how Ken’s Downs complicated their ability to get care, of how it was hard to know what to do or where to go. Her parents, now Ken’s main caregivers, had to cope with an adult who, for the first time in his life, was sullen and sometimes angry with frustration.

Living and working in Victoria as a financial advisor for Coast Capital, Diana came home to help out whenever she could as did Ken’s older brother and his wife who had a family and jobs of their own.

Most of the care fell to Ken’s parents. There were no resources for people with Downs and dementia, no one they could turn to for suggestions.

Then one bright light arrived; one day a week Ken went to adult daycare.

Diana tells of his time at the Kinsmen Club’s facility on Bowling Green Rd. just east of Richmond Hospital. “The Kinsmen were the only ones to help. Ken was too young to be old. We had a heck of a time getting respite for mom and dad. It was really challenging for us. We were finally able to secure one day a week at the centre. They knew us quite well. We were obviously a little different from a normal client who would walk in. They were there for us when we couldn’t find anything else.”

How did adult daycare go?

“Ken loved it there. He would come to life again. He’d say, ‘See ya later,’ to mom and she’d have an afternoon to get things done,” says Diana. “He brought life to other people in that facility.”

Diana saw it with her own eyes.

“He had this incredible ability to light up a room even with people who weren’t responding to much of anything else.”

Within a few years of diagnosis, Ken’s ending came as kindly as he lived.

“The palliative care ward of Richmond Hospital, they were the most compassionate part of the whole process,” Diana says. She names, with gratitude, the stand-outs in Ken’s care team, Beth and Dr. Alexiadis.

Speaking of both her brother and his palliative care team, Diana says, “Kindness, compassion—my God, if we just live our lives more like that.”

All money beyond the bare cost of the book goes to the Ken’s Place Foundation.

“The money’s gotta go somewhere. I set up this foundation, as an online resource centre for people aging with Down Syndrome. It’s also to teach people in facilities and people who help people with Down Syndrome to give them the resources they need so they can help people with Downs and Alzheimer’s cope a little better.”

Hoping others will benefit from their hard-won knowledge, Diana says: “What we need exists. It’s just getting the word out there. We just need to pull it together.”

When asked what she thinks Ken’s reaction to this book would have been, Diana replies: “He would be cheering me on. He was my biggest fan and I was his. He would do a toast. He could toast like nobody.”

For more info, visit kensplace.ca