Stories of Grace are an initiative for young onset dementia (YOD). Stories about living slowly in a hurried world. About staying joyful. About tears and laughter. About living life with YOD. The first, a letter she calls Dear Grace, is written by YouQuest co-founder Cindy McCaffery shaped from her personal experience.
John has always been known for his grand adventures. It all started when our kids were little. We’d pack them up in the car and off we’d go. At the highway stop sign, he’d ask, “right or left? “Left,” they’d shout, and away we went!
Nine years ago, John came home from his job, looked at me and said, “I can’t figure it out anymore.” I knew his work was detailed, demanding patience, candour and skill. Perhaps he’d had a bad day. But no, my smart guy was saying he couldn’t keep clients straight and he’d failed the latest software tests. This from a man who, in the 22 years I’d known him, had never failed anything. His words marked the start of a very different kind of adventure for him, for me, for our children.
John was 48 years old the day he stopped working and started down the grey, lonely path to a dementia diagnosis. Our children were 12 and 17. Not the 70 -or 80 -year-old stereotypical situation for dementia. But then, there’s nothing clear-cut about this disease. No surgeon’s skill can remove it. No medicine can cure it. No technology can slow it. For him, the future suddenly became about 10 years long.
Living with young onset dementia filters through in so many different ways. Early on a social worker told the kids, “Your dad isn’t stupid. Look at it this way: his faulty neuron connections are like bridges washed away in a storm.” Over time, I’ve come to better understand why John said he simply couldn’t figure it out anymore. In a world that thrives on speed, today I watch him listen carefully, deliberately making each memory along the way. It takes so much energy. I get why he tires so easily and is wary of socializing in large groups with the friends who remain.
I could ask why a bank of fog has blanketed the warm, witty man I met flying home to Calgary from Los Angeles those many years ago. Why such a gregarious, curious, athletic individual’s career would be halted, his wide-open world shrinking before our eyes. I could ponder the mysteries of a brain that, today, still allows him to be a good driver who doesn’t get lost. But, that same brain won’t let my longtime newshound retain much, so he sits and reads, and rereads. How is it that someone who excels at disc golf, sometimes squeezes my hand for reassurance because he’s lost in his thoughts? I don’t spend a lot of time asking such questions because young onset dementia is a shape shifting disease.
Instead, this is what I do know. Stories about loved ones being tied to hospital beds while meds get sorted are real. The stark lack of daytime programs to help walk this road is real. The benefits of simple things like activities are real. I see that sad look come over John’s eyes when weather keeps him from his cherished walks.
I know we’re doing well, all things considered. With home care support, John is here with me, and Scruffy the dog. Our world is smaller, but we still laugh together. He may not be your typical dad, but he still cares deeply about his children. We’re making our way with this disease. Out of respect for him and his enduring wish to help make things better for other people, I’ll share our adventures along the way—glimpses into the hazy, crazy, daunting, generous, miraculous, trying, learning, oh so human life we live.
I know two things most of all. First, John started this adventure with a motto that remains true today: “I try to have a good day every day.” Second, John loves me. He tells me so each day. He is 58.
Until next time.
– Edward Albert –