Dad and me. The picture is fuzzy like the memory.

Dad Died 29 Years Ago. So What’s That Got To Do With Dementia & Caregiving?

As a kid, I spent hours and hours (and then some more hours) in the car with my father. We drove all over creation to endless hockey practices and games. Three practices a week, two games on weekends–lots of car time. On this day in 1989, Dad and I drove two hours to Boston and walked together into Walter Brown Arena for my hockey game. He never came out. Instead of meeting him in the rink’s lobby after the game, a friend’s father rushed me to Brigham and Women’s hospital. That’s where Dad was instead of the rink. He died that day, young and suddenly, as the result of a massive heart attack.

Back then I was twelve, with the standard young hockey nut dreams of being the next Wayne Gretzky. Now I’m (just about) 42 and “pond” hockey at the town middle school is as close as I get to a hockey rink. And twenty-nine years in this case feels like an eternity. Over time, I cycled through the stages of grief and accepted Dad’s loss as part of my story. His loss played a role in making me who I am.

Twinkle in the Eye

I think of him often and talk about him all the time with Mom. And most of the time they’re happy thoughts, happy memories. Yeah, there are times I get down thinking about the fact that I’ve lived nearly two and a half times longer without him than with him, or that my kids will never get to meet him–but those times are the exception, not the rule. Most often, thinking about Dad leaves me with a happy grin. Because now I can be grateful for the time we did have, I think he’d be proud of me and Mom, and I think he’d laugh with (and at) my kids just like I do.

And for Mom, talking about Dad is even better. She gets an unmistakable twinkle in her eye–every time. The twinkle becomes brighter and her smile even wider when we add pictures into the mix. Looking at old family pictures and talking about Dad is my favorite activity to do with Mom these days. Like over Thanksgiving, when Mom told me the story behind my favorite picture with Dad. The memory is as fuzzy as the picture, but special–just he and I lounging on the couch. Me in my hockey sweats, Dad with his staple cotton sweater and familiar “why are you taking a picture of me?” look. I never knew that an hour before, I’d made him livid because I wouldn’t leave the hockey rink (more specifically, the video games). I can still see the smile on Mom’s face as she told me the story between laughs.

Scar Tissue

Despite all the good memories, December third has always been difficult. Have you ever slammed, like really slammed, your finger in a car door? December third was an emotional version of that in the first few years after Dad’s death. Sharp. Raw. Painful. Over time, though, scar tissue formed, and eventually the raw pain evolved into a dull throb. It’s uncomfortable and sits a little heavy, but it’s not as painful. And that’s how it’s been since I accepted Dad’s death for what it was–a terrible loss far too soon. But it is part of my story. Who I am. Each year, I acknowledge it, reaffirm my acceptance, and move on. It’s become a ritual over the last twenty-nine years. The dull throb of December third.

Mom and I have always helped each other through the day. Wherever I’ve been in the world, whether we’re talking daily or weekly or monthly, we always talk on December third. We talk, usually first thing in the morning, and we remember Dad. We cry a little bit. Mom tells me how proud Dad would be of me and I tell her the same. It’s been almost the same conversation for each of the past 28 years. Then we move on with the day and confront the dull throb that is December third in our own way.

A New Kind of Wound

This year, December third was unexpectedly hard. Raw again. Painful again. Because Mom didn’t remember. She didn’t forget–she would never– her dementia prevented her from remembering. Either way, ouch. I was utterly unprepared and it hurt. I reminded her, and we did talk about Dad. I told Mom how thankful I am for her, and how thankful and proud Dad would be of her. For playing his role in addition to her own. For what an amazing grandmother she’s been and still is to our kids. For how she fights the best she can to live her best life in the face of her damned dementia.

Mom is over four years into her fight with dementia. I should have seen this day coming but I didn’t. And again, ouch. It’s not quite the same, but it feels similar to the original December third. Except this time, I lost yet another piece of Mom. A lot like that car door slamming on my finger. Maybe I should have mentally prepared myself for it, but it’s hard to know what to expect. Dementia is so unpredictable and on the caregiver side of it, you don’t even know what’s going to hurt until it does.

Long Road

Caring for a loved one with dementia is a long journey with lots of sad mile markers like this. And instead of having Mom to lean on, she’s leaning on me. So the sooner I can acknowledge each car door slam, deal with the pain and accept it for what it is, the sooner it will become a dull throb.

And then I can get my focus back on helping Mom live her most fulfilled life.

Originally published at roandsteve.com on December 4, 2018.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.