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Opinion My father is still alive. Because of dementia, my son has never known him

Blake Lambert is a professor at Humber College in Toronto and works for The Canadian Press.

Blake Lambert's father, Robert Lambert, with Blake's young son.

Courtesy of Blake Lambert

My crying started suddenly on our driveway. When playing soccer with my son, Caleb, then 6, I burst into tears. “I miss my dad,” I told him. “I wish I could have told him how great you are.” Caleb hugged me. We stopped playing. The stolid demeanour that I usually demonstrate to the world returned.

Caleb and I then discussed what we called my father’s “brain thing.” It’s our all-encompassing descriptor of the incapacities of my father, Robert, because of his frontotemporal dementia. The disease has, like a destructive computer virus, deleted my father’s cognitive abilities. It has taken almost all of his physicality, too. Robert exists; his essence and personality are gone.

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These developments are completely congruent with the Alzheimer Society of Canada’s description of this type of dementia. Although it affects an estimated 2 per cent to 5 per cent of dementia sufferers, frontotemporal dementia is an “umbrella term for a group of rare disorders that primarily affect the frontal and temporal lobes of the brain – the areas generally associated with personality and behaviour,” the society says on its website. What’s more, this disease bequeaths horrible symptoms such as memory loss, behavioural changes and difficulties with speech and movement.

Robert has run the gamut of these changes, settling on the latter two. I barely remember the last time he spoke a complete sentence. I strain to recall his loud, boisterous speech. The one sentence I have on an extended loop in my head is from 2010, when I began teaching at Humber College. Robert asked, “Can you fail people?” (My answer was, and still is, yes.) I struggle to remember any other conversations or the sound of his voice. That’s the ferocity of his dementia. The man who depended on his voice as a lawyer for roughly four decades is now silenced by disease.

Courtesy of Blake Lambert

Paradoxically, as dementia eroded Robert’s speech, Caleb, who turns 8 next week, has become increasingly talkative as he’s become older. When comfortable and granted the opportunity, my son will not stop talking, whether it’s declarative statements or the posing of multiple questions. This is one of the cruelties of Robert’s dementia. The two most important male people in my life were and are garrulous. Before dementia, my father would start conversing with strangers, peppering them with questions, some unnecessary and, in the early days of the disease, incredibly inappropriate. Caleb, for his part, readily discusses the intricacies of Star Wars or the Marvel Cinematic Universe or the success of Old Town Road by Lil Nas X with any willing child or adult.

Yet, Caleb does not know that Robert loved to talk. When I asked Caleb if he remembered my dad talking, he said he remembered a bit from when he was 2 or 3. “I remember [Robert] saying something. I don’t remember what he said,” Caleb said. For a child who’s 8, events during the ages of 2 and 3 are more than half a lifetime ago.

At a cognitive level, Caleb understands that the “brain thing” has shackled my father. But he hasn’t completely grasped the relentless decline. When I asked him for a word to describe my father, Caleb said, “Funny.” Why, I asked? It’s not because of Robert’s sense of humour but because of unfortunate events. Caleb found it extremely funny when my dad ate, in my son’s words, the “biggest horseradish ever” at a family dinner. One night at my parents’ house, Caleb said it was funny when an occupational therapist was working on my dad’s legs, which were crossed. Caleb could not think of any other words to describe my father, except that he seems happy. Indeed, Robert is now very placid.

Courtesy of Blake Lambert

So much so that he will never have a conversation with Caleb. He will never experience my son’s sense of humour nor hear his multitude of opinions. Robert and Caleb know nothing about each other. I fear Caleb’s lasting memory of my father will be as a mostly silent and sick elderly man.

As for my dad, I doubt he recognizes me when I’m in his house. Robert’s eyes look me over, perplexed and unsure, registering very limited flickers of familiarity. In my heart, I believe he realizes that I am someone he knew who loves him; my empiricism, however, leads me to severely doubt my heart. I can only conclude there’s even less recognition of Caleb, one of his nine grandchildren. Frontotemporal dementia has caused their permanent estrangement.

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For me, their inverse relationship of decline and development is absolutely heartbreaking. I can and do talk to Caleb about my feelings about my dad. But I have never told him who my father was before dementia. Robert was, in the words of my brother Josh, warm, effusive and forceful. He was a flashy dresser with conservative views. An extrovert, Robert’s loquacious nature allowed him to fill a room with his personality and voice. He liked music, especially Billy Joel and Al Stewart (at least those were some of the records he had), and he loved sports, primarily baseball.

Not unlike a lot of fathers, Robert viewed sports, spectator and playing, as an essential bonding ritual. I didn’t really comply with this desire until after my 10th birthday. Before it, I remember he was so dissatisfied with how I threw a baseball with a right hand that I was told to throw with my left. To this day, I remain a left-handed thrower and basketball shooter and right-handed at everything else.

As Robert grew older, he took up curling and golf. But he was also tentative – he never liked roller coasters or adventure rides. When I was 12 or 13, he broke his arm skiing, which made him reluctant to use it for many months after. He was combustible with frustration and a yeller, and he was extremely generous to family.

In an e-mail message to my brother and two sisters this year, I wrote that I’d be prepared to give up money and material possessions for the chance to have a final conversation with my dad. My desire for this hypothetical is a corrective to my reality. Because of the confluence of Caleb’s birth and my father’s dementia, I never had a single conversation with my dad about my son, who he is and what he’s like. Nor will I.

Prior to dementia, much of my relationship with my father was predicated on discussion and debate. Words and ideas mattered. Whether we (wrongly) questioned the value of the Toronto Blue Jays’ Lloyd Moseby in the 1980s or debated the policies of former Ontario premier Mike Harris’s government in the 1990s, we talked. Now, without words, without speech, our relationship is severely challenged. My interactions with my father are now usually physical.

Case in point: One night in May, my mom, who is my father’s primary caregiver, called me. My dad was sitting on the floor, and she couldn’t get back him back into bed. Together, we lifted and pushed Robert – he weighs substantially more than 200 pounds – onto the bed so he could sleep. If the interaction is not physical, then it’s less successful.

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Earlier in the year, my mom asked me to stay with Robert for an hour or more so she could go out. I brought my guitar to play for my dad, thinking he might enjoy it as he seemed to in an earlier stage of dementia. No matter what I played, nothing seemed to engage or resonate with Robert. A visit in June to watch my beginner jazz ensemble and a number of other groups perform at a Toronto club seemed to produce a similar blankness.

The direct consequence of my father’s dementia is that I constantly strive for greater connection with Caleb. I try to seize bonding moments whenever they’re presented. These include: roughhousing on land or in water, playing Pokemon cards, jumping off structures into water, riding the vomit-inducing Lumberjack (with its 360-degree rotations) at the Canada’s Wonderland amusement park near Toronto, playing soccer, basketball and baseball on our driveway, allowing Caleb and our same-aged neighbour to make a meal for parents and conspiring to play a piano-sax version of the C & C Music Factory’s Gonna Make You Sweat (Everybody Dance Now) for my wife on Mother’s Day. The disappearance of my relationship with my father emphasizes my urgency with my son.

However, dementia cannot wholly eradicate the connection between my father and my son, despite their estrangement. Recently, my mom told me that she and my dad first met on Aug. 12, 1967. Without that meeting, I wouldn’t be alive. Forty-four years later to the day, Caleb was born.

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