It’s coming up on two years on October 17, 2016 that my father passed away. I served as his caregiver for more nearly thirteen years after my mother died from a combination of cancer and stroke in 2005.
No one figured my father would outlast my mother given the severity of the stroke he experienced back in 2003. But the day that my mom called to tell me that dad was in the hospital after collapsing the night before, I turned to my (late) wife and said, “Well, my life just changed.”
Because I knew in that moment there would be a massive role for me to play in supporting my mother in her role as caregiver for my father. Two years earlier, I’d helped her through the period when dad went through multiple bypass surgery. That’s because I was the son who lived closest and had the most capacity for involvement in their long term care.
That said, after a year or so of handholding dedication, I realized that my mother needed something more than my support for the in-life grief she was obviously experiencing in what amounted to the real time loss of her companion. My dad was being moved from one rehab facility to the other as his recovery proceeded, but at some point the therapists warned, “This may be about it.” And that scared my mom. And she felt alone.
So I got her set up with a family counseling therapist that genuinely helped her come to grips with her fears. We ultimately hired a live-in caregiver to help when my father came home to live after more than a year in various facilities.
He’d lost his ability to speak, and that was never recovered. He also lost use of his right leg and right arm. The effects of stroke tend to be one side or the other, depending on which side of the brain is affected.
Learning to converse without words
I rather quickly learned how to guide discussion with my dad using questions. Sometimes I’d fail and he’d get frustrated. My father was a bright and curious man, but he also did not always think in linear fashion.
Yet when he did literally, and I still couldn’t parse out what he was trying to tell me, he’d get genuinely angry and show his frustration through scowls and even physical actions. The problem with that pattern is that it called up some of the difficult aspects of his parenting style when we were young.
My own psyche bore some scars from a beating I’d witnessed him carry out on my brothers. That incident affected me all through my elementary school years and likely beyond. At twenty-seven years old I awoke one night literally pounding my pillow in anger about something I did not understand in the moment but over time gained perspective on the fact that there were unreconciled veins of anger living residually in my subconscious self.
On the border
So it took considerable self control to manage my father when he got really upset, often bursting into choruses of “NO NO NO NO!” issued in rage and frustration. Part of me would empathize, thinking “I can’t really blame him. It must be terrible to not be able to talk.” But a part of me also admitted, “This is the same stuff I dealt with as a kid. Control by anger and exasperation.”
My father tried to live as normally as he could, but from the perch of a wheelchair it isn’t very easy. Still, he planned vacations to Florida with his ultimate caregiver Leo, a former Belarussian soldier that had fought in Afghanistan for the Soviet Army. So despite my father’s sometimes rough treatment, Leo in many ways brought out the best in my dad and supported him through all sorts of adventures.
But one trip when my father planned was supposed to make big loop to Niagara Falls, then Upstate New York and all the way down to Biltmore in North Carolina and back.
Well, when they got to Niagara after an overnight stay in the Cleveland area with my younger brother, my dad tried to force Leo to take him over to the Canadian side of the falls. Leo had not brought the paperwork necessary for his entrance to another country. He called me in a panic as my father was going ballistic, because my dad refused to understand that if Leo crossed the border, he might never be allowed back in the country. At that time Leo had a Green card, but eventually he earned his citizenship.
I tried to talk to my dad to explain the Leo situation but my father was adamant about going over to Canada. Then he literally threw the cellphone down the sidewalk so Leo had to retrieve it. I heard footsteps and then Leo’s thick Eastern European accent as he picked up the tossed phone. “Hello?” he asked.
“Leo,” I told him. “Take my dad to the car and turn around. Come on back home. You don’t have to put up with this.”
And that’s what they did. Then Leo and my dad stopped in Cleveland to visit my brother and his wife, and by all reports that evening turned out to be wonderful. Leo picked up a guitar and sang old Russian folks songs by a campfire. My dad was happy and they came home the next day.
He’s like that
But that meant I had to call all the relatives, mostly my father’s sisters, to let them know he was not coming to visit. One lived in Endicott, New York. Another north of Philly. When I’d called them initially to ask if they even knew my father was planning to come east his sister Helen blurted out, “Isn’t that just like your father? He never let anyone know when he was going to show up. He’s done this his whole life.”
Years before that aunt had commiserated with me about my relationship with my dad. “It would have helped if we’d have been around to tell you what he was all about.”
Indeed, our family had moved to the Midwest leaving all our eastern relatives behind. That meant very little contact between cousins as well. My mom once admitted that she’d thought we (meaning her four boys) didn’t care that much about all our aunts and uncles and cousins. But what we’d really lost was a better understanding of our own parents. In many ways that meant we were unplugged from the sources of what made our father into the man he was.
He’d lost his own mother to the effects of treatment for breast cancer. The year was 1933. Then his father lost his farm to the Depression, and another venture failed as well. That sent my grandfather to an institution for treatment of acute depression. My father and his sisters were situated with two aunts and an uncle who raised them. That’s the best understanding of family history that I have. There was much difficulty in life for all of them. And perhaps people never really wanted to tell the next generation about all that. But in many ways, that lack of tangible evidence left a greater mark on all of us than any facts about death or loss or depression could ever have done.
Much of my life has been lived in compensation for that lack of understanding. I quite truly admit that much of my running and riding has been a search for meaning in the moment. What is life really about? Because lacking a decent explanation of your past and its effects on you, the best most of us can do is to invent a narrative for ourselves. Then live that out to the best of our abilities.
But that manner of engagement also flatlines the meaning of those we lose along the way. And on that day that my father breathed his last at the hospital where he’d been kept for a week after falling and breaking his hip in a stubborn attempt to wander his stroke-ridden body around the house, I walked in to find him pallid and gone. I kissed his forehead and took a few photos that will never see the light of day because they are intended only to remind me that life truly does come to an end. And I will be just another dad unplugged.
Hopefully I’ve told and shared my story well enough that my children can understand where their father was right and wrong in life.