7 minute read
Dealing with Dementia
by Melanie Williams, Freelance Writer • Mother, Author, Activist
I affirm, “yes sweetheart. You are a young man now”. As I watch this gentle spirit, my thoughts meandered. Never would I have imagined I would still be brushing teeth, cutting fingernails, or deciphering communication for my teenaged boy. It’s certainly not what I would have chosen for myself, and yet life with my son with Down syndrome while challenging, has brought me so much unexpected joy. That was the moment my subconscious put together why the comments from earlier had rattled me. Not My dad doesn’t want to visit his sister anymore. “It’s too depressing” he says, his voice saturated with sadness and regret. “She’s confused and she says the same things over and over again.” Distracted, he shuffles cards from hand to hand and I see his thoughts turn inward. We are not having a conversation about it. My aunt is a displaced 87-year-old woman with Okanagan tempered skin and severe gout. What has been clear to me for a while has only recently become evident to my dad, and it deeply upsets him. His sister f nding way s t o co pe and create joyful momen ts is showing signs of Dementia. many years ago the medical field would have advised me My dad’s comment plucks an unsuspecting nerve with me and feels to institutionalize my son and forget about him. It may have been pernicious. I know his response comes from a place of loss and sadness, yet described as a kindness, better for everyone, and to think about his quality the sting unconscientiously reminds me of a friend’s recent observation after of life. Thinking about my own now, my heart began to pound and ache her own father’s passing. She said, “It’s a relief. He had no ability to speak with deep sadness over the thought of missing out on nights like tonight, or do anything for himself really. He had no quality of life.” Her comment filled with silliness and laughter. My extraordinary child had blessed me in had left me feeling angry without completely understanding why. so many ways and certainly made me a better, kinder, more understanding That night as I helped my son with the bedtime routine, I dutifully handed and compassionate human being. I honestly felt so lucky to have him him clean pyjamas then waited as usual outside his bedroom door. When and sometimes thought others could benefit from sharing this kind of he eventually summoned me indicating he was ready, I opened the door experience. and immediately doubled over laughing. With hands on his hips in typical My thoughts trailed back to my dad and my aunt. Here was a similar, super-hero form, he beamed a confident ear to ear grin at me. Proudly, he difficult and complex situation that no one expected to be in. I felt a deep had put his shirt on backwards and somehow sausaged both his legs into sense of empathy for them both. I understood what it was like having one side of his pyjama pants. My sweet boy with the extra chromosome to steer a new course unexpectedly. It was scary and overwhelming, had played a good joke on me. His rich reward was making me laugh, but I had also discovered it was full of surprises and the most wonderful the satisfaction he felt evident in response to my genuine belly laughs. I moments. I had 16 years of experience working with my son, adapting conceded that he had tricked me, and together we slowly corrected his and planning, helping him navigate the world. I began to think about how attire. With arms drawn across each other’s shoulders, we trotted to the I could help my dad and my aunt. I knew their relationship was special bathroom where I routinely brushed his teeth, cleaned his ears and blew and I hoped they could still have many more happy memories together. his nose. In addition, tonight was special because it was time to shave The following day I popped by my parents’ house, the family home for again. “Me a man now, right mom? I have whiskers. Men whiskers.” over 50 years. Dad was sitting at the kitchen table having his regimented Delighted by the sparkle in his eyes, I watched him exuberantly mow the three o’clock coffee break with my mom. We started a game of Dominoes, electric razor all over his face endeavouring to catch the soft new shoots. and predictably my dad was winning. When it was my turn, I slid one of
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the smooth spotted tiles into play and said, “I was thinking about Aunty and what you said yesterday about not wanting to go see her anymore. I think I have a few ideas that may help.” Dad perked up and looked at me expectantly with his bushy eyebrows raised. I took the opening. I proposed they make a plan before they go visit my aunt. They could predetermine how much time they would spend there and what they would do during that time. I suggested they tell Aunty the plan and write it down for her so she could refer to it during their visit. This would help her if she became confused. Providing clear details would be important too. For example: 1) Play two games of Cribbage in her room. 2) Go for a walk outside in the enclosed garden. 3) Have coffee together in the common area. 4) Say goodbye at 4:00pm. Being specific with ‘what, when and where’ would help my aunt understand the expectations and help her feel safe and confident. She could even check off the activities listed as they went. My parents liked this idea and felt it could in fact be useful. My dad had also mentioned my aunt continually rattled off the names of their siblings, occasionally remembering accurate facts but more often forgetting those who had passed away. She always ended the conversation with the statement, “you and I are the only two still with it”. I knew this was a needle that scratched at my dad. I pressed on. “Could you collect photos of you and your siblings to take to Aunty? It would be fun if you could put them into a little scrapbook, include their names and where they are now. You could look through it together, and Aunty can look at it whenever she wants to help her remember. Do you think these ideas might help, and you could still enjoy visiting your sister?” My dad was ruminating on this and slowly nodding when a smile began to appear. “I think we will go see your Aunty again.”
Visual cues, After the coffee was finished and my dad inevitably schedules and claimed victory in Dominoes, my mom and I stood checklists, are at the sink of steamy soapy water and washed up the essential tools to dishes. “Where did you come up with such thoughtful help him navigate ideas for visiting Aunty?” I beamed when she asked his world. me. I told her it was some of the things I did for my own son when we go into new situations, or when there are things he needs to learn and remember. Visual cues, picture reminders, schedules and checklists, are all essential tools to help him navigate his world to be successful, and I thought it might be applicable to this situation too. I may never fully understand my son’s place in the world, but I know I am the better for him being in it. I hope others like my dad, can also experience some of the joyful moments available to us through life’s many challenges and the most unassuming people. The love that holds a family together is often the most difficult and the most rewarding, providing lessons that can’t be found anywhere else. Supporting each other and adapting to the ups and downs of life and loss, may be full of disappointments, but it may be full of unexpected happiness and laughter too. Melanie Williams is a freelance writer whose work has been published in Maclean’s, Todays Parent and Chatelaine magazines . Her passion for writing allows her to work out the ups and downs of life and to be an effective inclusion advocate . Melanie was born and raised in Lake Country, BC and still refers to this place as home . Currently she resides in Calgary, Alberta with her husband, two children and a small, were-wolf-like dog .
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