On recent visit with my mother, I sat down to do her nails. It was the first time in my life that I noticed her hands.
I have my mom's hands. They’re the same hands that used to hold mine when I was afraid, or wanted to cross the street, or needed encouragement or just a reminder that I wasn't alone. Mothers hold their children's hands for a short while but their hearts forever. I hope that's true, even on the days she doesn't know who I am, that somewhere in her heart, I am still there.
- Act now: Tell your MP to support the right to advance consent for assisted dying
- Related: 8 in 10 Canadians support the right to advance consent for assisted dying
My mom's dementia is a little bit like that movie, The Curious Case of Benjamin Button. Over the years, she's regressed, considerably, from adult, to teen, to child, to toddler to infant. Today, she can't speak very well and has a hard time “finding words.” Now, her food looks like the same pureed mush my kids used to eat, only fancier.
In some ways, she and my children are like ships passing in the night, developmentally speaking: as my kids came out of diapers, my mom needed diapers; as my kids began to eat solids, my mom was not able to anymore. In a child though, there is possibility, there's a future.
Dementia is a grotesque disease. And when you peel back every grotesque layer, what's left is a putrid, rotten pit. There is no dignity left to my mother. She cannot eat on her own, cannot go to bathroom by herself, cannot speak, cannot communicate to us exactly what hurts when she’s in pain. Her condition has deteriorated at a rapid rate that she is unrecognizable. She needs assistance with all activities of all daily life. She has zero quality of life. This disease robs you and your family of possibility the ability to share your life together without pain. Sometimes it robs you of hope.
It is a cruel disease, Mom. You are its victim. It snuck into your life and took over. It took over your mind and destroyed your physical capabilities. We, your family, the unsuspecting bystanders, are also victims, and we carry a deep sadness within us because there is absolutely nothing we can do to stop this disease, to stop your pain.
A recent photo of Barb's mother, Stella.
What hurts so much, Mom, is that I failed to understand what was happening to you. I'm sure that you at times felt my anger, frustration and confusion, but can you forgive me for feeling it? I'm so sorry that I didn't understand your own confusion. No one told me when you first got diagnosed how much pain you were going to have to endure.
You always said you never wanted to be a burden to anyone. You're not a burden, Mom. And just as you carried me, I will carry you on the rest of your journey. I will not stop. But what you’ve endured is not anything anyone should ever have to go through.
Suffering shouldn't be a life sentence. Our governments must create a legal framework for assisted dying that helps patients who have received a dementia diagnosis and are about to face a very painful, uncertain future. They deserve meaningful choice over the end of lives — choice that my mom was never given.