Losing a mother and gaining a child

While most of my friends spend hours on the Internet researching the best daycare and schools for their little ones, I spend most of my time looking up long term care facilities and home care options for my mother. I don’t have children but I always find myself in circles with mothers who love to talk about the latest accomplishments of their child, whether it is telling stories about how their baby girl said “Moma” for the first time or how their son took his first steps.

For me, I am ecstatic when my mother knows my name and recognizes me as her daughter and not a nurse, or family friend, or stranger. As I sit in on these conversations I find multiple parallels to their stories and mine and I think to myself is my mother my child? See my mother was diagnosed with Alzheimer’s Dementia approximately 3 year ago and I am now realizing that she has been living with the effects of the disease for much longer. I never thought that at 31 I would have to be dealing with this or that I would be so self-conscience about what others might think or say about my mom.

"As my mother's dementia progressed, I started to change as well."

As I started to come to terms with the disease and as my mother’s dementia progressed, I started to change as well. Take my behavior towards her in public settings: I didn’t allow my mother to engage in conversations with people; I cut her off mid-sentence to avoid embarrassment; I would order her food and choose things for her without asking her preference because I knew I would have to give long repetitive explanations; and I held her hand at all times because I was scared of losing her.

I thought that when you have a family member living with a mental health issue that you are going to automatically have compassion and patience for that individual, but I learned this is not case, we don’t automatically know what is best.

Things started to get bad when I started speaking of my mother in past tense. When I met someone who didn't know me and I would get into a conversation about my mother, they would ask if my mom had passed away. I always responded with a “no” but had to explain why I slipped into that tense. I felt as though my mother was dead; I felt as though I had lost her. I felt as though I didn’t have that maternal figure to share my milestones and accomplishments with, who was always proud of me and was my biggest cheerleader.

"This disease is not about me or about her; it's about us."

But before I make this piece about me, I have come to realize that this disease is not about me or about her but it’s about us. It's about how we deal with Alzheimer’s. By speaking of my mother in past tense I denied her human dignity. I denied her existence. But it’s not just me.

On a cold day in January my mother ventured out of her home, sneaking away from my father in her polka dot bathrobe. Wandering in this way is not uncommon for someone suffering from advanced Alzheimer’s. On this particular day she wandering quite a distance, approximately 2.5 km. In all my years knowing my mother she never walked this far unless she desperately had to. Had you asked her where she was going she would of said home. But she is thinking of her home from the 1940s and 50s not the home that she has lived in for the last 35 years. When I got a call from my father telling me mom was missing and that he couldn't find her, my heart dropped, I worried what her fate might be. Thankfully the police found her and took her to the hospital where she recovered from mild hypothermia.

I travelled to the hospital and she was in good spirits when she saw me, even though she acknowledged me as her cousin. I sat with her as her levels returned to normal and reflected on the day’s events. Looking at my mother, I was more shocked at her appearance than her actions. There she was, lying in a hospital bed in the emergency department in her fabulous leopard-print rhinestone-encrusted shoes, polka dot bathrobe, exquisite costume jewelry and red lipstick. I thought what did people see? What did people think as they witnessed this 100 pound, 75 year old woman crossing 4 different intersections, walking aimlessly through our community? I am not saying that this anyone's fault but I am sure people looked and just thought, “who is this crazy lady?” I am sure people reacted the same way in which I witness people walk by people outside the mental health hospital on Queen st W. We don't see the person, we see the disease. And it unsettles us and we are unsure of what to do.

Did passersby see my mother—my strong, intelligent, beautiful mother –or did they see the disease. If we just see the disease we won’t react, we won’t call for help and we won’t lend a helping hand. We must be aware of—and unlearn—our prejudices surrounding mental health. We must teach our future generations about human dignity. And we teach not only in the interest of community, but in self-interest, because we too may suffer like my mother one day, like the 747,000 Canadians living with dementia.

By 2013, 1.4 million Canadians will have the disease. With this in mind we need to remind ourselves to treat all human beings with dignity. Please see my mother and not the disease and treat her as though she is human, as though she is a person, and as though she matters. My mother is not my child, she is still my mother. The disease made me think of her as a child because I stopped acknowledging her existence. I have learned from my mistakes and I have reflected on my actions, I just hope that you can too.

Joanna Newton

Last Updated: 07/06/2018