Dementia is one of those crippling diseases that, under the cover of night, creeps in and slowly engulf our loved ones into its darkness. This monster suffocates the radiance of those we love and leaves nothing but an empty shell in its wake. This is my story.
I have to admit, some of the experiences I've encountered over the last five years have been endearing. Like the time I was caring for my Dad when my Mom was in the hospital. I was downstairs preparing breakfast, and he was getting dressed for the day. He comes downstairs with this massive grin on his face, arms extended and said with enthusiasm," I'm ready for the day!" I turn around and notice his sweater's on backward, he's missing his glasses, and to this day I still don't know how he managed to tie his belt to his belt loop. But not all interactions have been so charming.
But before I get too ahead of myself, let's get into more about what Dementia is. For those who don't know, it's an overall term for a set of symptoms that are caused by disorders affecting the brain. Dementia and Alzheimer's are two terms, commonly used interchangeably. However, according to the Alzheimers Society of Canada, Dementia is not a specific disease. Many diseases can cause Dementia, including:
- Alzheimer’s disease (most common)
- Vascular dementia (due to strokes)
- Lewy Body diseaseHead trauma
- Fonto-temporal dementia
- Creutzfeldt-Jakob disease
- Parkinson’s disease
- And Huntington’s disease.
These conditions can have similar and overlapping symptoms.
To have a parent look at you with such confusion as they struggle to connect your face and a name is truly gut-wrenching. The first time this happened was early into my Dads diagnosis. I was with my parents waiting to see his specialist. A kind nurse had arrived in the waiting area to collect us for the appointment. My father being an old school gentleman, introduced his wife and turned to me and said this is my daughter. There was a long pause. I looked at my Dad, who was struggling to find my name in his mind and then at the nurse. I said my name with a smile, but I could feel the swell of emotions bubbling in my heart.
The number of individuals currently living with or caring for someone with a form of Dementia is staggering. In a 2016 report by the Alzheimers Society of Canada, 564,000 people in Canada are currently living with Dementia and nearly 1.1 million Canadians are affected directly or indirectly by the disease. And if that wasn’t mind-blowing enough, at the rate the disease is progressing throughout our society, they also estimate by 2031, 937,000 Canadians will be diagnosed.
Fast forward to the present, and my Dad is unrecognizable. He's transformed from someone who used to walk 5 km a day and was a financial guru to using a wheelchair, struggles to communicate and can't feed himself. But the most evident and noticeable change is in his physical appearance. He seems frail and so much older.
The last time I saw him was approximately a month ago when I was in town starting the research process for this article. When I first arrived at his care facility, I hugged him and could feel every rib and vertebrae in his back. Just another byproduct of this wicked disease. As I pulled away from him, I remember a statement made by a care worker I had interviewed "It's not the Dementia what will kill your father, but another ailment like pneumonia or cancer due to their inability to cope with the outside infection." Such haunting words. Not only does my father have to suffer from the symptoms of Dementia, but there is also the threat of another disease taking hold.
I'll admit it's hard to visit him. Dementia has taken my Dad. It has left me with a hole in my heart, almost like the death of a loved-one but they're still living. I want to remember my Dad for who he was. The funny, witty man who taught me how to fly fish and to drive a stick-shift. Not the empty, fragile man who has no idea who I am.
“Seeing people change isn't what hurts. What hurts is remembering who they used to be.” - Unknown