The Dog Was Up Last Night & So Was I. Because Dementia.

Last December we got the kids a dog. Maggie. It had been a hard year, they’d been asking for a while and we figured it was time to take the leap. So in came Maggie, after agreement with the kids on the familiar conditions of you’ll help walk her and you’ll help clean up after her and you’ll help feed her

Not so much. Fast forward a year and Lindsay and I walk her, feed her, clean up after her. Still, we can’t imagine our family without her. Maggie is lovable. She is cute. And sometimes Maggie is a pain in the ass too. Sometimes like the last few nights when, for reasons still unclear to us, she’s decided she needs to go out in the middle of the night to do her business. Out of nowhere. Not cool.

Perhaps we’ve gotten soft in the years since sleep training our kids, but while we try to figure out what’s changed or what might be causing this new behavior, instead of letting Maggie (a dog!!!) cry it out one of us takes her outside in the wee hours. Last night was my turn.

Lindsay slugged me in the arm telling me it was my turn at 2:56 AM. I got out of bed at 2:57 AM and stood out in the rain with Maggie for five minutes. When I crawled back in bed at 3:04 AM, I was wide awake. Wide. Awake. I was in for it.

This doesn’t happen to me often but when it does…I do what I’ve done since I was a kid. I tried to name the full roster of the 1989 American League Baseball All-Star Team. Random I know but it’s alway worked.

Mark McGwire. Jose Canseco, Terry Steinbach, Wade Boggs, Ricky Henderson….that’s as far as I got–but I was still up.

From there, I decided to name my all-time NHL All-Star team (we play hockey here in the Northeast). On I went: Wayne Gretzky, Steve Yzerman, Gordie Howe, Bobby Orr, and Ray Bourque. Uh oh, that was too fast. I was still staring at the ceiling, eyes wide open.

I tossed and I turned and moved on to the NBA. My all-time team: Michael Jordan, Magic Johnson, Larry Bird, Bill Russell, and Kareem. Way too fast. I’m screwed, I thought as I continued to toss and turn.

Then, not sure why but I asked myself when mom was diagnosed with her dementia. Was she 67? Or was she 68? It’s all a blur now.

Hmm….I thought. What if I get dementia? Will I get it when I’m 68, too? Not a cool rabbit hole to be going down at this juncture but once I started thinking about it I couldn’t stop. My eyelids were getting a little heavier but I couldn’t shake the thought–or the dull wave of panic that came with it. When I’m 68…Caroline will be 37. Emma will be 34. Lucy will be 31.

Will they be married? Happy? Will they have kids? What will they be doing with their life? Will I see that stuff? Really see it…and be present? Be a part of it? Or will I be a burden? Oh sh*#. Definitely not a cool rabbit hole. I stewed on some variation of these thoughts for a while, while still staring at the ceiling. The next time I looked at the clock, it was 4:19 AM.

Ok, so how much time do I have left before the dementia sets in? Groggier now and borderline completely irrational, I decided to break down the math. I walked down stairs, grabbed my phone and opened the calculator and brought it to bed with me. Irrational.

I have 26 years before I turn 68. In 26 years there are:

312 months

~9,360 days

224,640 hours

13,478,400 minutes

I have 13,478,400 minutes until I get dementia.

Gulp.

I did the ridiculous math again. Oh sh*#. That’s not much time. The last thing I remember is looking at the clock and the big red numbers telling me it was 4:37 AM.

The Aftermath

Before I knew it, my alarm was stunning me awake. As my feet hit the floor, I felt an odd mix of sleep deprivation and emotional drain juxtaposed with a determination (dare I say excitement) to get moving and make the most of the day. I felt tired but recharged. The dull panic was gone. I was back to my (mostly) rational self. Just because mom has dementia doesn’t mean I’ll get it. It might…or it might not….but either way I can’t go through life like that.

From the research I’ve done anyway, the genetics of dementia are complicated. Some forms have a clear hereditary component, many don’t. Genes are part of the story, but there are many other factors at play.

Last night wasn’t the first night I’d been confronted with these thoughts, either. When mom’s decline was initially picking up speed, it occurred to me that I could be her at some point. Maybe that’s natural? Regardless, for me it was scary as hell (still is sometimes) and something I had to deal with…er talk about. That’s helped.

Where I’ve landed with all of this though, is that I can’t lose sleep over it (sorry, couldn’t help myself). Rather than worrying about what might happen, I need to support mom the best way I can. Critical to this is taking care of myself. I Need to smile. Embrace and enjoy the little moments. Make the most out of every single day. Totally cliche, I know–and it’s cliche for a reason. After all, I only have 9,360 of them left.

Scratch that. I need to make the most out of every minute. I have 13,478,400 of those.

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

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