Today, September 21 is World Alzheimer's Day. You might have seen the hashtag floating around social media, or have come across posts highlighting the day. But what exactly does World Alzheimer's Day mean? To me, World Alzheimer's Day means
You are not alone
When my Nanny (what I call my grandmother) was diagnosed with dementia it felt like no one understood. I watched Nanny begin to change, and my confidant slowly became a dependant. I felt alone.
I watched as my Grandfather adapted to the new challenges his wife was facing. Some practical, some emotional, their entire relationship evolved as he became her care partner. My stoic grandfather reflected on who his wife used to be. He felt alone.
My Father joined his siblings in assisting with care, organizing legal and financial matters, all while balancing their own lives, careers and families. As their stress levels rose I witnessed how many of their friends just did not understand the extra responsibilities that were thrust upon them. They felt unheard in the system. They felt alone.
And my sweet Nanny, the protagonist in this story, well I wish more than anything I could know how she felt. The hardest part is not knowing what she feels if she's happy, if she's confused. This is the part that haunts me. It's only an assumption, but she must have felt alone.
As the years passed we became connected with more families who were facing similar challenges. My Nanny's sisters were diagnosed. We were put in touch with our local Alzheimer's Society. My Grandfather attended a men's breakfast for husbands of individuals diagnosed with dementia. Some of my friend's grandparents were diagnosed. Things started to change as we heard more stories of those who were on the same journey as my family. It started to feel a little less lonely.
My Nanny transitioned to long-term care a few years back. We were suddenly exposed to many others living with Alzheimer's and dementia. Although the challenges were still there, some more prevalent than ever before, we were surrounded by families who were just like us. Nurses, recreation staff, and personal support workers who were just like us. We were definitely not alone.
I am fortunate in my daily work to hear the stories of families like mine. Families who are facing a dementia diagnosis and are looking for tools to improve quality of life, to connect, and to keep relationships strong. I get to hear stories of individuals who are living well with dementia, families and friends who are changing the system, and groups that are fiercely advocating for those living with dementia. This doesn't mean that the hard days don't exist. When I come across an old note or see my friends with their grandmothers, I can't help what wonder what our life would be like if she wasn't living with dementia.
So, today on World Alzheimer's Day we honour those living with dementia. We celebrate families, care partners, staff and community and government advocates. I urge you to connect with families, support organizations or online groups if you or someone in your life lives with dementia. And I hope this is a reminder that you are never alone.
Who are you honouring today on World Alzheimer's Day? Share your story to connect with others below!