About a year ago, a wonderful lady named Sheryl Gordon approached me about contributing to a special project called A Rewording Life. As part of approximately 1000 talented Canadian contributors, I'm happy to tell you she is now releasing this amazing book dedicated to raising money for Alzheimer's and Dementia research. The book is available now at Amazon, so please spread the word for this very worthy cause, as some of you know, my mom suffered her last few years with dementia, so this is a special book for me to be part of for many reasons. Sheryl's original plan included essays from some of the contributors, and I volunteered to write one. In the end, the book's format changed, so I thought I'd share that essay here before telling you were you can purchase this book.
The World Has Changed
Onset Dementia…Alzheimer’s Disease… probably two of the scariest diagnoses anyone can hear. A few years ago, I heard this prognosis for my mother, a vibrant, smart, very vocal and active woman. She had suffered a second delirium in a six month period, primarily as a result of medical errors, and it made her highly susceptible to the onset of dementia in the coming years. Four years later, she is, in fact, suffering from dementia. Watching this rather amazing woman struggle with what is happening to her is both heartbreaking and terrifying to me. At first, she was able to speak, understand, and look after herself. She had come home from a two month hospital stay, and we were grateful. I knew even then she would never again be the woman I had known my entire life.
Fifty years of marriage, three children, and a life devoted to her family. That was my mother. My dad died mere weeks before their fiftieth anniversary, and for her, I think life ended in many ways then. She was never able to get over his passing, and five years later suffered a delirium that doctors initially believed was a stroke. I knew better, I’d lived with her all my life, and I watched this happen over the course of months, unable to change what was happening or counter it. As a caregiver for a dementia patient, one of the most difficult realities you have to accept is that you cannot take on the guilt for what’s happened. I didn’t do this through any neglect, even if it sometimes felt like I should have been able to do more to prevent it. That’s not true, and it took me a while to understand it.
As the illness began to make itself known, Mom struggled for simple words when attempting to converse with people. Some put that down to age, she was seventy eight when this began. Her frustration was palpable, and it manifested in anger, which is not really surprising. The first noticeable losses for Mom came in the form of words eluding her, then came the inability to write, she literally forgot how to even sign her name. Following this, the loss of basic motor skills started. My mom loved her cup of tea, and she still does, but now it has to be half a cup, because in the middle of enjoying it, she can forget how to hold the cup, and it spills. She cries, and is bewildered by what is happening. She is also terrified in her moments of clarity because she remembers what’s happened, and knows she can’t control it or stop it.
I knew we had lost more ground when she started telling me she wanted to go home, that she was afraid. She and my father bought this small bungalow home forty-six years ago, and it is the only home we ever had. She can’t tell me what scares her, why she’s afraid, or where she thinks home is, she just looks around, frightened and alone. Her entire world has changed, even though everything is as it’s always been. She remembers the past, but can’t remember what she said five minutes ago.
I’ve watched as she walks the floor all night long, and can’t explain why she won’t stay in bed, or what she wants. In her exhaustion, her speech deteriorates further, until she is speaking gibberish that no one can understand. She knows it, though, and again, it triggers rage or despair, and they are equally damaging.
This is year five, my mom can no longer talk for more than a few sentences at a time, and she struggles to get that much out in understandable language. She has lost interest in everything, and doesn’t even want a television on around her. Music comforts, occasionally, but it’s never predictable if it will annoy her or relax her mood. Any sudden noise brings out anger. She can’t speak to my sister on the telephone, even to say hello. She requires constant supervision, and assistance to even go to the bathroom. This is how dementia steals a life, not just from the patient, but those who love the patient. My mother died in many ways, five years ago. I see glimpses of her, and those days are the blessings. She laughs, and even if she can’t communicate clearly, she tries hard to talk and be the way she used to be. Those are the days when she enjoys life again. They are becoming fewer as time passes.
Soon, I know, there will be almost nothing left of the woman I call my mother. Just a small, fragile lady who is lost in a darkness nothing can banish. The one place she felt safe is no longer home because she doesn’t recognize it a lot of the time. Little by little, the world has become a foreign place for her, and I’ve had to watch it and be helpless to change things. When she can express herself, albeit awkwardly and with many efforts to be understood, she tells me she wishes she was dead, and I know she means it. There is just enough cognizance for her to know she’s lost her life, and it won’t ever be hers again. How can anyone combat an illness that steals minute by minute, day by day, eroding all that is familiar and safe?
If there is only one thing that people need to learn and know, it’s this–you are not responsible for the illness or the effects it has, and guilt serves no one. No one person can fix a life that is being taken away from a dementia sufferer, stop trying, you’ll only kill yourself with the effort, and it will change nothing. The behaviour you’ll witness at times is so out of character, so opposite to what you know and expect, you’ll be taken aback by it. The verbal abuse is swift and remorseless because it’s forgotten moments later, and there is no awareness that anything mean or nasty was said. No one should have to live this way, but dementia creates more than one victim, and that is another basic reality.
Now, I treasure the good days, the days she laughs with us, and remembers who she is, but part of me knows this is the illusion. I know the good days are numbered, and will soon be the rarity, not the normal course of life. No amount of love in the world can make a happy ending once dementia arrives, and all you can do is cherish the world that was, and try to give comfort to the shifting moods and fears of the new world a dementia sufferer lives in.
On October 3rd, 2015 my mother succumbed to the disease that was slowly taking her away from us, and I cherish the years we had together. I know she is in a better place now, and no longer struggles or is afraid.
Also in Large Print
With A Rewording Life, Sheryl Gordon brings clarity to obscure words, collaborates with over a thousand cool Canadians (Yann Martel, Jane Urquhart, Terry Fallis, Miriam Toews, Wayson Choy, Sass Jordan, Colin Mochrie, et al.), and raises money for dementia research. When Ms. Gordon saw her mother, Yolande, lose her words to dementia, she understood like never before that words have meaning. To honour her mom, she asked Canadians who make her life more rewarding to pen an indelible sentence for an abstruse, bemusing, or convoluted word; she chose words she tends to forget. She hopes to harness these scintillating sentences to help eradicate dementia. Interwoven amongst the plethora of contributions are eight heartfelt essays written by Ms. Gordon. The initial letters of her essay titles (a, d, e, i, m, n, t, e) spell dementia. She hopes readers can embrace this scattered concept. Confusion is, after all, the nature of this disease.
Thank you. I have watched family members disappear. Sometimes I like to try to figure out if it's worse to be alive in your mind but have your body slowly become unable to do the simplest things. My grandmother had Parkinson's and it was horrible. She was alert behind the eyes but her body wouldn't even help her breathe or speak. It was just another horrible way to die.
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