The best cup of coffee I’ve ever had
How my late husband cared for others, even in the throes of ALS
Throughout our relationship, my late husband, Jeff, was the partner who most enjoyed taking care of people and things. He built wooden furniture and personal gifts, tended to flowers, and prepared meals from scratch. He got a great deal of satisfaction from going above and beyond for people. Jeff was a born nurturer. He was never happier than when he was caring for others.
A perfect example was coffee. We’d start our mornings by drinking coffee in bed together while watching the news. Jeff would wake up first, in the dark, then amble to our kitchen and make two perfect cups of black coffee while I slowly came to life. He’d come back to bed with them, and we’d spend the first 30 minutes of the day together. It was something we could count on, no matter how busy our respective workdays promised to be.
It was one of our most beloved traditions as a couple.
My department, on the other hand, was planning and scheduling. I was in charge of fun — creating activities, planning trips, and scheduling time with friends. The more spontaneous of the two, I brought energy to Jeff; he brought calm and caring to me. We were good for each other.
We had an ideal balance until Jeff’s ALS diagnosis in October 2018 tipped the scales. Jeff’s hallmark physical strength, which had provided him the means to care for things, began to dissipate. His legs weakened first, so he found ways to work around that. A riding lawn mower allowed him to keep mowing the lawn; a hand-operated yoke enabled him to keep driving the boat, even when he needed help getting into it.
That’s how Jeff approached ALS: He’d find a creative solution until his body wouldn’t support it any longer, and then he’d find another.
One thing we couldn’t solve, though, was coffee. Jeff’s bulbar symptoms appeared relatively early in his diagnosis, and we found them the scariest and most impactful of the changes that ALS visited upon his body. Over a period of months, these symptoms took away his voice and his ability to eat and drink by mouth. At first, I gamely bought liquid thickener, and we decided together to add it to our coffee — him by necessity, me in solidarity. Unfortunately, after a few days, we decided that the thickener wasn’t tasty for either of us, and Jeff abandoned coffee altogether.
Our shared tradition devolved to just me swigging coffee during our morning caregiving routine. ALS brings loss after loss, and we knew that losing that quiet time together was seemingly small, but actually significant.
Jeff was using a power wheelchair full time by October 2019, just a year after his ALS diagnosis. He could no longer walk and had limited use of his arms. He drove the wheelchair with his finger using a joystick.
One morning not long after, Jeff asked me to get him up and prepared for the day. Generally, this routine took us about 90 minutes, as I used a Hoyer lift to move him from bed to shower chair to toilet, dressed him, and then used the lift again to move him back to his power wheelchair for the day. Along the way, we’d use the cough assist machine to clear his lungs and administer his medications via feeding tube.
On this particular morning, Jeff asked only to move to his wheelchair and for me to go back to sleep. This request was a departure from his needs, and also from our usual routine. But caregiving is exhausting, and I was OK to oblige. After some time, perhaps an hour — I had nodded back off to sleep — Jeff came back into the room. From his text-to-speech app, his voice filled the room. “I made you coffee. I just can’t pick it up. Will you go get it?”
Tears filled my eyes. My husband had navigated his 425-pound wheelchair into our narrow galley kitchen and painstakingly brewed me a cup of coffee using one hand. I realized it had taken him nearly an hour to do so.
At that moment, I realized, too, how much caregiving and nurturing was a central part of who he was as a person, and how important it was to him still. I mourned the losses ALS brought to him, to me, and to us together. But ALS couldn’t dim his loving character or our shared commitment, clearly still in evidence, to keep our relationship and life as happy and balanced as possible.
I retrieved the mug and returned to our room. With him sitting beside me in his chair, I got back in bed, enjoying the best coffee I’d ever tasted and the extraordinary, caregiving man I was so fortunate to have at my side.
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