She wanders aimlessly, sometimes alone, sometimes with a companion. She just walks, she has no real destination. She has a faraway look in her brown eyes. She’ll stare, but doesn’t really see. Her clothes may be mismatched, soiled, but of good quality. Her sweater may be hers, or someone else’s. Tomorrow that sweater may disappear forever. She smiles, or at least her mouth curves upwards, absent is the twinkle in those brown eyes. A curse may escape her lips – not threatening, but out of character. She’ll suddenly sob for no apparent reason.
Readers are likely thinking I describe a homeless person. No, I describe my mother. Her once vibrant mind has disappeared into the abyss that is dementia. Her brown eyes are now dull.
Yesterday she seemed to know me. She told me that I’m beautiful, she kissed my hair. When we parted, we hugged and she told me to go to church.
So today, seeing my reflection in the mirror, I looked into my own brown eyes, brushed my kissed hair and went to church. With my prayers, I thought of a love story, my Mom’s life story. One that is unique and individual, as all our stories are. The story that unfolds with dementia is not unique.
I script this to record a life lived. It is cathartic. I encourage all whose lives are touched by this horrible disease, this epidemic, to do the same. Record the life of a loved one so that the memories, do not disappear into the black hole of dementia.
Mom was one of seven, she grew up in Moncton, NB. Her family was Acadian French and Catholic. She loved to skate, “speed skate”! She did not finish high school and left home at age 16, moved to Toronto and worked for Eatons’ downtown. She continued to skate and met my Dad at a local rink. They married when she was 19. With the expense of travel at the time, her parents could not attend her wedding. How sad. Together they raised three children. She was a full-time mom in our early years. She was destined to always work in retail, fashion retail. She loved it! She had a flair for fashion and home design. Our home reflected this.
She loved to dance. She and Dad were an awe- inspiring couple on the dance floor. She once signed us all up for disco dance lessons! Sunday afternoons, dancing to the tunes of the Bee Gees and Donna Summer. Music seems to calm her. She and Dad will dance sometimes, and it’s amazing to see that she instinctively knows the steps, the moves. She loved to travel. She and I travelled together and had so much fun. She was more like a girlfriend, than my mom. Today, I show her photographs of our many trips together, there is no recollection.
When Dad took up golf, she refused to be left behind. At 50, she took lessons and she became a formidable golfer. Now, she doesn’t even know what the word “golf” means.
She loved to shop, shoes were her passion. Now, some days her own shoes cannot be found. Some other poor soul has hidden them away thinking them theirs. She’ll wear someone else’s and not care.
She has mourned the loss of her parents, four of her siblings and with this disease of the mind, she mourns them over and over again, as her world reverts back to her younger days.
My mother was always my best friend, she comforted me, and she seemed to grow younger as I grew older. She knew instinctively when to impart advice or when to stay silent, allowing me to find my own way. She was proud of me. I always knew this and so I ventured onwards with my life, knowing I always had her in my corner. How incredible it is that this person has created the person I have become.
Dementia is a thief. All of one’s life is stolen from the afflicted.
I am determined to always see her “life” lived, rather than let my own memories become a victim of this disease. I will be the keeper of her story and then it will not disappear.
I appreciate the grief of a child who has lost a parent through death. But losing a parent to dementia is not final. You grieve, but you are plagued with many little heart aches; when she knows you and when she does not. What torment lives in her mind when she has those lucid moments, knowing she is not what she once was? I can hold her to me, hopefully comforting her, but if she doesn’t know I am her daughter – does she really “feel” the comfort? You worry how others treat her when you are not there. In death, if you have faith, you know that God is caring for her.
You really don’t know if she has physical pain as she cannot articulate it. If she has pain, she doesn’t know why. In death there is no pain.
Your sense of loss and heartache is amplified by watching your father suffer as well. You have lost your mother, but he has lost his soulmate. It just isn’t fair. He visits her daily, saying good bye to her each time. He also bears the financial burden of her care.
You feel guilt when you don’t see her as frequently as we think we should. You can’t speak to her on the phone.
With all of this, we cope. We tell ourselves that her “soul” knows us, knows we love her. We pray that when she sleeps her swirling thoughts are at rest. Perhaps her dreams are of the happy and fulfilling life she has lived. I hope so.
This is how I cope…. When I was a baby, I did not know that the arms that held me so lovingly were my mother’s. I did not know the breast that nourished me was hers. I came to recognize the brown eyes that looked upon me with so much love, I did not know I had brown eyes like her. I mimicked her smile. My thoughts were scattered, but I felt loved, I felt comforted and safe.
So, I will continue to love my mom, I will smile at her, I will hold her head to my breast and she will be comforted. She will know she is loved and safe. I pray that she sees my eyes and knows they are brown, like hers.
By Denise O’Brien, Cavan resident