Skip to content

Much To Hold On To

Grandfather and grandsonOn January 7th, the Alzheimer Society of Canada launched it annual Alzheimer Awareness Month campaign. In 2013 the focus was on seeing the person, not just the disease.  It was a message I was intimately familiar with, and one I’ve been sharing for more than a decade.

The theme on the Alzheimer Awareness Month website this year is: “There’s So Much To Hold On To.” The content relates to the importance of early diagnosis. “Early diagnosis,” the site says, “helps people and their families plan for the future –– it keeps their lives from unraveling.”

Knitting, and knit-bombing –– which, admittedly, I didn’t know existed until today –– is being used to connect everything and provide opportunities to get involved by knitting forget-me-not flowers, sharing images, organizing knitting bees, etc. It’s a clever, thought-provoking campaign, and again this year I applaud the Society and the work they do throughout the entire year. But I’m going to set aside the knitting aspect for today (and not just because I’ve given up knitting) and concentrate on the seven words in the top right hand corner of earlydiagnosis.ca, or more precisely a story that illustrates them so well.

Alzheimer website
A screen cap of the Alzheimer Awareness Month website for 2014: earlydiagnosis.ca

Readers of the third (international) edition of Standing Tall: A Daughter’s Gift, or the fourth 10th Anniversary edition released in 2012, will be familiar with the narrative that follows. It couldn’t be included in the earlier editions because it hadn’t happened yet.

The month was January and the weather was cold, windy, and snowy. I was scheduled to speak at an evening event in Guelph, Ontario and Kenneth offered to travel with me so that I wouldn’t have to make the 45- to 60-minute drive alone.

He sat in the back of the hall while I delivered a presentation about my father’s journey with Alzheimer’s, watching the images of my father on the big screen and listening to the stories I told, the lessons I shared. We were happy that more people than expected had shown up despite the weather, and as usual, after I’d finished, I spent quite a while with people who came up to chat –– other daughters, wives.

It was late by the time we packed up and loaded everything into the Land Rover to head back to Waterloo. The wind was blowing and it was still snowing, and I was very glad to have my co-pilot beside me. We debriefed as we always do after presentations and events, but on this occasion, the content of the discussion was particularly important. Because the presentation had sparked an especially important insight.

As I sat listening to the stories you told and looking at the photos of Dick up on the screen, Kenneth told me, it occurred to me that I ever only knew my grandfather when he had Alzheimer’s. I never knew Dick when he was well. I knew only the “sick” Dick, not the “healthy” Dick. And despite that, my grandfather is one of the three most powerful and most positive influences in my life. People need to know that. People need to know how important they still are, to know that Alzheimer’s doesn’t take that away. Alzheimer’s is incredibly cruel, and a journey that no one should have to endure, but it doesn’t end a person’s importance or significance or influence.

The following year, after I’d spoken at another Alzheimer event, this one during the day on a Saturday and much closer to home, a man and his wife came up to chat. The gentleman, I learned, had recently been diagnosed, and he wanted me to know how much he had needed to hear my son’s words, how grateful he was. It gave him something to hold on to… gave him back something he thought he’d lost. His wife felt the same.

I will always believe, until there is a cure or treatments that all but stop the progression of the disease, that an Alzheimer’s diagnosis is a particularly cruel one. But there is indeed much life left to live, and so much to contribute.

If ever you need a reminder of that fact, think of a young boy (now a man) named Kenneth Tam.  Maybe take a minute to read “My Chief”, a post he wrote on the 19th anniversary of his grandfather’s death.

And know that there is indeed… so very much to hold on to.