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Alzheimer Awareness Month – See the Person

January is Alzheimer Awareness Month in Canada, and the Alzheimer Society has just launched a new campaign: “See me, not my disease. Let’s talk about dementia.

According to the Society’s website, the goals of the campaign include increasing knowledge about Alzheimer’s, decreasing the stigma associated with it, and helping people remember to see the person beyond the disease.

I don’t think I’ve ever really allowed myself to think about the disease as having a stigma attached to it, but as I read a recent article from the Canadian Press, I ached for the people who have to suffer not just from the disease, but from the cruelty of lost ‘friends’ and misconceptions.

As for remembering to see the person beyond the disease, that is a message I am intimately familiar with.

When Alzheimer’s ravaged my father more than 20 years ago, my mother found it increasingly difficult to remember the man he had been “before he was sick”.  It broke my heart to think that my father… my courageous, loving, remarkable father… could somehow be erased by such a cruel disease. It broke my heart to think she could no longer remember the young man in the love story we had heard so many times growing up. And so I set out to ensure his story was not lost.

When I’ve spoken about our family’s experience at Alzheimer Society and various book events, one of my key takeaway messages has always been to remember the person before the disease, to really see that person. Indeed, presentations and readings from Standing Tall: A Daughter’s Gift have always included a related passage from Chapter 2.

However, there is a new section in the tenth anniversary edition of the book that I think is at least equally important… and one that comes not from my own experience, but my son’s. It is a vitally important message, I think, especially for people like Elizabeth Allen from the Canadian Press story:

There is another message that I think people should hear, my son told me as we drove through a snowy January night after I had given an Alzheimer Awareness Month presentation in Guelph, Ontario. As I sat listening to the stories you told and looking at the photos of Dick up on the screen, 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.

People suffering with Alzheimer’s are not their disease. I hope the Alzheimer Society has much success this month, helping spread that message for people like my dad, and Elizabeth Allen.