Across the world, over 40 million individuals suffer from what we call “Alzheimer’s Disease”. Expectations are that this number will increase drastically over the next few decades. Unfortunately, no progress of any significance has been made to fight the disease since it first was classified more than a century ago. The fact of the matter is that Alzheimer’s Disease is a family affair. Just listen to Dr. Samuel Cohen speaking about Alzheimer’s Disease in the TED Talks video:
Check out also the following conversation:
I try not to feel bad when he says things that sound mean,” says Jylelle. “I really try to remember that he doesn’t mean it.”
“He recognizes Grandma, but he doesn’t know who you are,” reminds Virginia. “You would likely act the same way if you thought strangers were in your house eating your food,” she explains. Explaining the disease in a way that the girls can relate to improves their understanding and empathy for their grandfather.
Even so, the realities of the disease can be very difficult. “I tell him I love him as I am saying goodbye like I usually do,” remembers Jenna. “Sometimes, I feel that, like many people with dementia, he wants to speak out and why not? “But he usually does not say he loves me back. That is really sad, but when we talk about it in the car on the way home I feel better,” she adds smiling.
Initially, the girls would cry if Grandpa was cross or didn’t remember them. “Now they seem to look forward to sharing what happened during our drive home and sometimes we are able to laugh at something that was said,” says Virginia. In that way, the girls are able to let go of the hurt. “Some of it can be pretty scary,” explains Virginia. “Laughter helps make it a little less scary.”
Virginia quickly acknowledges that laughter may at times not be appropriate, but for the time being, it’s helping them cope with the disease that’s so often inherited. “We do not try to belittle the disease’s seriousness,” says Virginia. “We feel we have to keep a degree of humor for as long as possible. We know that our family has a difficult journey ahead.”
Another thing that seems to help the girls cope is raising money and awareness for the Alzheimer Society. They participated in the Saskatchewan Alzheimer Society’s Forget-Me-Not Walk for some years now. Each year they have put a team together consisting of friends and family members. Jenna is always in charge of writing the team cheer and Virginia usually takes charge of creating the team costume. Last year the girls’ team, The Puckheads, won the top fundraising team honors for the Regina walk.
“They understand how important it is to support the Alzheimer Society,” says Virginia. “Not only does the Society provide information and support to help us deal with the day-to-day challenges of the disease. But we want to support research to find a cure or better treatments for the disease.”
“While we understand the impact Alzheimer’s disease has on older people – those who have the disease and their caregivers – there is often little attention paid to the impact the disease has on children,” reminds Joanne Bracken. “Yet we know that experiencing Alzheimer’s disease through a child’s eyes can be frightening and confusing; especially if the person who has the disease is a close relative such as a grandparent or parent.”
Despite the progression of his symptoms, Jenna points out that she’s making sure that she’s talking to her grandfather during each visit and that, when she leaves, she’s hugging him while telling him she loves him so much. She adds: “Probably, he still is needing a hug every day like all of us do, or perhaps even more so.” This just indicates the tremendous love and compassion that’s possible when children will have some understanding of what Alzheimer’s disease is all about.