Suzanne Allan is sitting close to the fireplace cradling a beautiful book bound in hand-made paper. The volume contains the photos and life stories of Allan's parents. She opens a page with a woman smiling into the camera. Allan's expression isn't as carefree, yet the resemblance is unmistakable. This is a photo of her mother as a young woman.
"Mom still recognizes the family, but I know that day is coming when that will change," Allan says with a little catch in her voice. "You lose a person bit by bit. It's really hard that way."
Allan's mother has Alzheimer's, and Allan has decided to reach out to other islanders who are in similar situations. She says, "You feel helpless because there is no cure. I wanted to come up with something that is positive, that is proactive. With a support group we can educate ourselves and the community, we can help to raise awareness."
Together with Nicola Murray, Allan has recently taken a first step. She identified half a dozen friends who care for someone with dementia and invited them to a couple of informal meetings.
Allan noticed a change in her mother about seven or eight years ago. She says, "In Mom's early 70s, I started to notice that her memory was not what it used to be. She was repeating things. We typically spent a week away at spring break, and on one of those trips I noticed that she was less able to do things like cook, or do things for other people. So I called her doctor."
Allan explains that her father is "not a talker." He is of a generation of very independent men. So she took matters into her own hands and decided to check it out. She was pleasantly surprised by the response of the family doctor who explained that he had already tested her mother and had prescribed Aricept. The drug does not cure dementia but it can slow down the process.
At the time, Allan's in-laws were also dealing with serious health issues. Allan recalls, "We already had two sick parents and when my mother was diagnosed I decided to quit teaching to have more time to visit them and accompany them to doctor's appointments. I am so glad that I had a choice, that I had the opportunity."
Allan's in-laws have since passed away and her mother's condition has gradually deteriorated. She says, "My dad is caring for Mom. She has gotten worse to the point where he is doing most of the household care. He is amazing. And he does all the stuff that my mom used to do for him. It's lovely to see."
Once a week, Allan drives to Vancouver's west side to see her parents. She takes them out for lunch or for a walk and does things around the house. Her dad is now 82. He is slowing down but his biggest issue is isolation.
Allan says, "The hard thing is that all the neighbours have moved away or died. Dad's network of support is dwindling. His friends who are still around have their own health issues. Mom still has a group of friends from school and they meet regularly. She remembers them because she knows them from way back. She doesn't remember anything that is new."
One of the things Allan is worried about is that her dad could have an accident. She says, "He's had vertigo and I worry that he could fall and hurt himself. If that were the case, mom would have to go into respite care."
What happened to Nicola Murray's father was similar. Murrays's stepmother had to undergo an operation and couldn't care for him. He went into respite care. Everyone thought it was a short-term arrangement but he ended up staying. The surgery forced a decision the family hadn't been ready to make.
Producing the book of her parents' life stories has helped Allan's family tremendously. Thumbprint Books, a Bowen company, conducted interviews, scanned photos and delivered a beautiful volume. Allan says, "My mom was at a stage where she couldn't tell her story any longer. She was maybe at half capacity. My dad had tons of great stories and I went over to help a couple of times. But in retrospect I would have liked to have done it two years earlier. When you have the diagnosis, get it done before you lose the stories."
Allan's mother loves to pick up the book. Going through family photos is something that Nicola Murray does with her father as well. It helps to remember, if only for a moment. Allan says, "What I have come to understand is that the moment is important. That's all my mother has. That's all people with Alzheimer's have. If they're happy in the moment, that's important."
She recalls conversations with people who decided not to call or visit relatives who didn't recognize them. And Allan understands that it can be difficult and emotionally draining to be with someone who doesn't know who you are. But in her opinion it is important to make an effort. She says, "The moment when they make a personal connection can be joyful, even if it only lasts five minutes. And then they forget, but so what?"
There are many in Allan's circle of friends and acquaintances who are caring for someone with Alzheimer's. She said, "At least one grandparent in every family seems to have a form of dementia. Many families are touched by this. And of course, if you observe it in someone you know, you get worried. Every time you forget something, you think, 'oh no, it's happening to me.' That is why we want to focus on lifestyle choices in our group and explore things that give us better chances."
Learning about the illness is one of the priorities for the Alzheimer support group. Allan says, "Two years ago, I went to Vancouver and did four-week course that was offered by the Alzheimer Society. It was taught by Kerry Sutherland and I found it really helpful. I was able to pass on the information to my dad and we put some things in place, like power of attorney, that are really important."
Allan has been in touch with Sutherland, the support and education coordinator of the Alzheimer Resource Centre for the North Shore and the Sunshine Coast to explore options of sharing resources. The centre has a wealth of information available and trains facilitators of support groups.
Allan feels very positive that the group will make a difference. She recalls, "The second time we met, a new member showed up. His mother was just diagnosed in the fall. The rest of us have been dealing with this for much longer, some of our parents are already in care facilities. So we were able to answer a few of his questions. It helps to know that you're not alone."
If you are interested in joining the Bowen support group for people caring for a family member or friend who is afflicted by dementia, please call Suzanne Allan at (604) 947-0352 or Nicola Murray at (604) 947-2508.