Living with someone whose body has betrayed them is not an easy gig. I know that today is her best day. There’s no coming back from PLS, Primary Lateral Sclerosis. Her body will be a little weaker tomorrow. Not enough to notice, but weaker. And the days add up.
I notice the changes because of the routines I live by. That’s how I cope. I set a routine. Up at about the same time each day, help her get ready, lunch with the same options I know she likes. Dinner and bedtime become rituals. The days are easy. I make her do the things she can do, although it’s hard to watch her struggle. I want to do them for her, but that would make it easier for me, not her.
Over time, I do more and she does less. I modify the routine. I brushed her hair today. I didn’t three months ago. It’s OK. It’s not the act of doing it that I mind, it’s the knowing that another piece of her is gone.
Nine years ago we did a road trip. Two late autumn weeks lived doing a lap of the Western states. South from Colorado, turn right at Albuquerque, go west until you hit ocean and then up the coast all the way to Seattle. Look at the Big Sky across Montana, hurry through snow squalls in Wyoming, and back home. I knew it would be our last major road trip. It was perfect.
I had the routine down, the bags, wheelchair, canes, and supplies Tetris-ed into the trunk. I knew what I needed to do and what she could do. She laughed as her wheelchair bumped along the trails between giant redwoods and giggled as we did four-wheel drifts on the wet foggy paths at Mount St. Helens. She cried seeing where Custer had met his destiny.
I’ve fallen deeper into routine since then. Life has become more constrained with each day’s losses. I can still make her laugh, though, so I do it every day. It’s a good routine to live by and one that I will never change.