The last two weeks have been an up-and-down, sideways-twisting, loop-the-loop, roller coaster of a ride. With any chronic disease, like Parkinson's, this is the way of life. It's been this way for many years, but this felt different. It feels different, I should say, because it is different. It has felt like the ride was coming to the end.
When I got home two weeks ago, we prepared for the very worst. Each time we thought we made a decision, something happened to make us question. To make us afraid we were wrong. It has been the most confusing, sad, gut-wrenching moments of my life, watching my father deteriorate and seeing my mom struggle. There is no handbook for these moments. There is no one who can make these decisions for you. Even if you've had that talk with your loved ones (and if you haven't, you should), it's so hard to know when the end is really the end? When is enough truly enough?
We live in a society where it's practically a sin to stop. We believe in fighting and hanging on and never giving up. And for 95% of the time, that's a pretty great attitude. There are times, however, that I've wondered who is hanging on for whom?
Each of us has separately said our own goodbyes to my dad. I have been for years with each decline. And in the last two weeks, we've let him know that it's okay to let go if he's tired. He hasn't though, and we've decided to let him fight as much as he wants. It feels selfish, in a way, to put that decision on him, but it also feels selfish to keep it for our own.
For most of this time, we make the 140 mile trip, we sit in his room for hours, and we wait for the few moments he's awake. My mom monitors his pain by his facial expression. She explains what the nurses are doing if they do not. She strokes his forehead and sings softly to help him sleep. My father was always the caretaker, the nurturer, when we were sick; now that task has fallen to her. And she's more beautiful at it than anything she's ever done, I think.
Two nights ago, my mother's best friend of nearly 50 years (my Aunt Patti) came to sit with us. As she and Mom told stories from when they were young and wild, I watched my father watch them. They told story after story for almost two hours. Some, I had heard (like my mother putting my dad out of the car on a wintry night on the Canyon E-Way and then forgetting where she left him); others I had not (like how my dad, before they officially met, would come into the diner where my mom waited tables and order a $0.25 cup of coffee and then leave her a $5 tip). They cackled and cut up, and the whole time, my dad grinned. I kept waiting for him to sit up and defend himself or tell a story of his own, but that's an empty wish. Instead, I was just grateful for the grin.
And today, he's been awake and lucid more than in the past two weeks combined, looking at my mom, smiling, answering her questions with a nod or a blink, and even telling her, "I love you". It was the only Christmas gift she needed or wanted.
I know that my dad isn't going to get out of that bed again. I know his wounds will never fully heal. The inevitable is the inevitable for a reason. The train will eventually return to the station because the ride cannot go on forever. But today, it's enough to just still be on the track.
Merry Christmas and love to you all.