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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Comments
Nan amann
Julie, I love you so much.
Kevin Rosen
What a beautiful and touching piece of writing!
Veronica Frizzel
OOP.. sorry about the misspelled words!!! heartbreaking and heartwarming
Steve Markham
Beautiful testimony. Thanks dearly for sharing. I'm sure that Jeff has shared this with you.
Sab Clay
This article was quite touching! My now 54-year-old husband has been diagnosed with ALS. Initially, it started with is right hand. However, the more I advised my husband to get physical therapy, the more he did not. That was the norm, but while on a fishing a golfing trip in Texas, I received a call because he could not lift the club to T off. At first, I was upset, because I had mentioned he needed to let the doctor take a look at his hand, nevertheless, he came back to California and made an appointment. It was determined that his right arm was smaller than his left, and more text was needed. Finally, in October 2022, we had an appointment with the Neurologist. Prior to that appointment, I literally watch my husband's body change, becoming smaller by the weeks and months. Within two weeks, after his appointment, the doctor stated, "I am leaning towards ALS." I had no idea and knew nothing about the term. However, as I was able to watch my husband barely hold himself in the chair, all I could do was to continue to engage the doctor in conversation, while asking about my children. How I was able to do so, it was only my faith in God. That was almost a year ago, and it has been confirmed that he does have ALS. It is not in his family, and I cannot fully understand the whys. However, I am learning to cope, but it is difficult at times. So much as changed, and much has been placed on me at this time. Some days, I just cry asking God, "Why?" He was looking to retire but did not know what his next assignment would be. I guess you can say now we know. Currently, my pray is just thanks for the day, and I trust you for tomorrow. That was never my prayer prior, but I now know I have to solely depend on God and the people he has given me. I worry about my husband, and how this is affecting him, but and the fact that we are both young. Fifty-three and fifty-four is somewhat young with four adult children and three grandchildren. It's a daily walk, and I just have to trust in the process, as so many others have shown they have done as well.
It's encouraging to read other's story as I embrace my own story today-Be encouraged!