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Why I cried on World Alzheimer's Day

Posted by Rachel Thompson on

This past Saturday was World Alzheimer’s Day. Many families, organizations and volunteers banded together to honour those living with Alzheimer’s and dementia and show support to the organizations who work daily to make improvements to quality of life. It’s a day full of education, celebration and love, one that I normally like to spend sharing my story and relating with others. Last year we were on CTV nationally.

This year I cried.

Living with this disease in the background of my life has changed the way I look at it. I am more patient, understanding, and inclusive. I try and look at the positives, reduce stigma, and highlight ability. In the ever-complicated dementia space, I feel that most times I’m getting it right. Working to empower, using relational language, not assume ability and speak positively have been things my team and myself have strived to incorporate in all areas of our business. In a world where Alzheimer’s and dementia is synonymous with “suffering”, being a “patient” and not a person, or is “devastating”, we’ve made it our mission to find the joy and highlight it. Struggling to read traditional media? How can we turn that into an activity that connects us? Facing a move into long-term care? Let’s highlight how this is likely better for health and safety. World Alzheimer’s Day? Let’s celebrate!

This year I did not feel like celebrating. I felt alone. I felt sad. I felt “devastated”. I sat and thought about how much I missed the person my Nanny used to be. How I could use her help and advice right now. How what dementia has done to her cognitive ability feels like a knife right through my chest. I thought about how hard it is to look at one of the people you love most in this world and know she doesn’t remember you, can’t hug you, can’t comfort you. Whenever I used to cry Nanny would wipe my tears and say she was “feeding them to the birds”. How thirsty the birds must be as all these tears instead fall into a kleenex.

I wish my Nanny could really see and take in how special World Alzheimer’s Day is. To understand how many people love and care for her, and are working tirelessly to improve her quality of life and find a cure. At times it feels overwhelming. Fighting for stigma reduction while simultaneously feeling crushed by the reality of dementia. I would give anything to have my Nanny healthy again. It often feels weird to reel from the impact the disease yet build a business around it. It’s something I think about every single day.

Maybe what sets us apart is how personal this is. As a company when we make decisions, we can directly think of how it would impact our family or the families of those we work with. When I talk to business partners about the predicted dementia growth over the next 30 years, they see more market opportunity. I see faces. I see my Nanny, my great aunts. I worry my Dad and his siblings will be added to that statistic. Will it be my sisters and brother? Will it be me? How do I celebrate the progress this community has made without dwelling on the difficult years to come? How can I ever feel like we are doing enough? I don’t have the answers; I don’t think I ever will.

If you spent World Alzheimer’s Day celebrating and raising awareness, I commend you. If you spent time with a loved one with Alzheimer’s and dementia and just got through the day, I commend you. If you sat at home and shed some tears like me, I commend you. Our community is better for sharing the stories- both good and bad- of living with Alzheimer’s and dementia. There is no linear path to living with or being affected by dementia. We’re all just figuring it out together.

This year on World Alzheimer’s Day I cried. A few days later I laughed at a silly photo of my Nanny my aunt sent me. A perfect example of being human, crying and laughing and just getting by. If all we do is humanize Alzheimer’s and dementia, then that’s fine by me.

Happy (belated) World Alzheimer’s Day. I see you all. I hear you. Thanks for listening to me.

At Marlena Books, we’ve been debating about how we share content that is both positive and realistic and are diving into a 5-part series starting next week. We’d love to hear your point of view and for you to join the discussion over the next month.

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