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Sometimes it feels like every time I see my dad, I detect a change that reminds me of how we are losing him, piece by piece, to the world of dementia.
We note these changes in well-rehearsed stages. The first is humour: a text from my mom telling me dad has suddenly decided it's okay to spit on the floor. The next phase is sadness: The laughter subsides as we ponder the implications of this newest mannerism. Then comes the guilt. This third stage is fleeting and unpredictable and shows up in myriad ways. Sometimes I feel guilty that I haven't been as patient as I know I can be. Sometimes I feel guilty that I'm not around more to help my mom. A lot of the time I feel guilty that I have accepted the changes with humour.
Recently I was faced with perhaps one of the most poignant changes yet. Mom had to make a trip to Vancouver, so I went to their home on "dad duty," with my three-year-old daughter, Mia, in tow.
Dad and I had a low-key early evening together that consisted of countless retellings of the whereabouts of his "beloved wife." When I put Mia to bed I told her that I would be sleeping down the hall in Grandma's room and that she was welcome to come to me when she woke up. Dad and I then watched a movie and ate pizza, and at 11:30 p.m. I told him it was time for bed.
"Okay," he said anxiously. "Where am I sleeping? Can I sleep with you?" No, I replied, reminding him that he had his own bed in his own room, where he slept every night, and he would be just fine.
Off he went. But by the time he reached his bedroom he had changed his mind. I barely had my pyjamas on before I heard the thump of his cane as he hobbled down the hall to mom's bedroom. Reiterating my previous statement was ineffective. He looked at me dumbfounded, insisting he always slept here (not true). Couldn't he just lie down with me for a little bit? Maybe while I read my book?
I shrugged my shoulders and told him he could lie with me for a few minutes until he got sleepy. "Perfect," he said and leaped into bed (alright, it was more like a stumble).
I lay down on my side and attempted to read my book. Suddenly, my usually quiet father was chatty: "So, what are we doing tomorrow?"
I gave him a brief rundown of the plans. "Okay!" he said brightly. "And where's your mother?"
"Dad, if you're going to lie here you have to be quiet," I reprimanded. He was blissfully silent for all of 10 seconds when his feet suddenly got itchy and he began to roll them, first back and forth, then up and down, on the bed.
That's when he was evicted for the first time. He reluctantly made his way to his own room, but was soon back with another innocent attempt to join me. He had only two arguments – "I always sleep here" and "I'm lonely" – one of which was an outright lie, the other of which broke my heart.
It was an interesting exercise in morality, trying to balance my need for sleep, my own guilt and compassion, and the underlying sense of disturbance by the whole situation. I did think of shifting to another bedroom, but I had promised Mia I'd be in Grandma's bed when she woke up.
By 4 a.m. I finally heard the welcome sound of his snoring. I closed my eyes, settled my brain, and lay there. Wide awake. I realized that every muscle was tense and my brain was on high alert. If I were a cave woman I would have definitely survived; I have a strong alert mode.
I finally dozed off after the repeated shots of quick-wake-up adrenalin ceased. I slept just long enough to make Mia's 7 a.m. arrival one of pure agony. I staved her off with the ceremonious handing over of the iPad and gained a few more minutes of sleep.
Twenty minutes later I was again woken by a little voice. "Lyssie? What are you doing here?" my father asked, his voice filled with kindness and genuine excitement to see me.
Clearly he didn't remember our many, many middle-of-the-night conversations. He was so happily surprised to see me that my sleep-deprived grogginess was overruled by a sense of adoration for my poor old dad. Then the gentle moment was broken by his familiar mantra: "And where's my darling wife?" Here we go again …
In many ways witnessing the progress of my father's dementia is the reverse of watching my children grow up: The days and months are marked by small losses of his abilities, and contrast starkly with my kids' acquisition of new words and skills. Just as time reveals my children's true characters, so too does my dad's sweetness emerge, a side that he never really let out before.
And I greet these changes, both good and bad, with the familiar observations that underscore what it means for all of us: How quickly time passes. How quickly they change. How precious our time together is.
Alyssa Boyd lives in Collingwood, Ont.