Some days were “cold-start” days. When the sun rose or before, my mom would lift my dad’s head off the pillow, fold each leg upward with a hand under each knee, and pivot his torso towards the edge of the bed. I would—on visits back to Charlottesville from New York where I live with my wife—sleep right through this regimen. I would emerge to find my dad navigating his inbox on an iPad with eye gaze technology and leaning towards a metal straw for a sip of coffee.

A “cold-start” morning was one where Dad’s vocal muscles were especially stuck or his legs would bounce from the spasms and his jaw would quiver more than usual.  (Sometimes, cold weather actually did make it worse). A little coffee and some soft scrambled eggs, and he would be off to the races drafting a blog post. Each day was some mix of vigilance, heart-rending sadness, laughter, worry, and frustration.

My mom was the primary caregiver, and to her goes the credit for giving Dad the richest life imaginable before and during his illness. I do not know what kept her or my dad from breaking down daily. My mom was the quarterback, to whom fell the task of calling the play (meaning “should we eat a banana?”, or “will the airplane bathroom be large enough”, and also “what do we do with your 401k?”) knowing that there are only a diminishingly few plays left to run.

There were several phases to the caretaking journey. Phase 1 was mechanical installations alongside the initial grief and foreboding. We installed ramps in the house and examined all the floor’s lips and bumps to ensure smooth wheel travel. We wondered if it would be as bad as everyone said (turns out it was bad, but we learned that nothing is ever as bad or as good as advertised). My mom had the bathroom retrofitted with a roll-in shower and wide sliding doors. Phase 2 was about adventures, often unintentional ones,  and becoming grateful for what we had—time together. We traveled to Hawai’i and graduations and family Thanksgivings. Mostly things went well, except bathrooms.  Mostly bathrooms did not go well. Phase 3 was the profound physical losses, now happening faster than before. Dad’s speech got weaker and less intelligible, but his writing picked up both pace and readership. Our community grew and we advocated harder than ever. Phase 4 was hope against hope that the progression would slow down; but from there, it only sped up. Phase 5 was planning for the worst of things (but how can you, really?). Every moment together seemed to last twice as long and mean twice as much. I got married in June of 2024. Dad died one month later.

Strangely, I think the more you love someone living with ALS the harder it is to care for them. The anguish doesn’t let up when you have delivered a bite of food or successfully transferred the loved one to a new seat. That’s partly because each little achievement just gets you to a point that is so devilishly and invisibly unremarkable that you wouldn’t be caught celebrating. Everything we did to help Dad was so minimal, so necessary, but so temporary. And so inadequate to overcome the suffering.

The hardest part is that caregiving for a loved one often drives the caregiver into states of anguish and impatience, which is unsettling and confusing. Why am I the one losing patience trying to understand what Dad is saying? Why am I the one burdening others with my need for support? Why do I feel sorry for myself today? But that’s the reality. It feels hard because it is hard.

The best part, because there is a best part, is that the walls all come down and you are left with a chance to give and receive like never before. No matter how involved you are, whatever you do to help, whether you feel like you’ve let your loved one down or failed or succeeded in any given week—anything you try to do is a gift with the resonance of a cannon in a stone valley.  Little things go a long way. Giving joy or levity is a gift. Offering to help is a gift on its own. Just going through it is an achievement, no matter what.

Written and submitted by William Plews-Ogan