In the second part of her personal caregiving story, Juliet Taylor reflects on humor, love, and connection during her husband’s life with ALS, sharing moments of laughter alongside the realities of disease progression. Read more reflections from Juliet in her column, Thunder Road.
Transcript
Jeff was hilarious. And he was hilarious during his time with ALS.
He used to, apropos of nothing, give me a caregiver rating of the day. So he would tell me I was an eight one day, and then the next day he’d say, “You were only a two today.” And I was like, “Well, why am I only a two? What did I do?” And he’s like, “Nothing. I just need to keep you on your toes.”
He would make light of things. He would have wheelchair races with the neighbor. He would ride in the wheelchair, and she would ride her bicycle. He was always funny and, very gently, would sort of make fun of me about some things. And ALS just really only sharpened that.
He hid his Oreos from me because he knew, you know, with ALS, you try and keep calories in. You know, you want you want to eat a high-calorie diet. Because ALS takes a lot of calories. And so you want to keep weight on. And so he would hide his Oreos from me.
Oreos were my favorite, too. And I don’t really cook. So he would hide the Oreos in the pots and pans because he knew I’d never find them. Which was true, I never did.
He would send me out for ice cream every night, just revel in the fact that he could have a banana split every night. And, you know, I did not. He used to tease me, honestly, about the surrealness of caregiving.
You know, the first time I had to put his shoes on his feet, I was nervous because, you know, it was just a different aspect to our relationship. And I put his shoes on the wrong feet, and he was like, “focus.” And I just looked at him and I laughed, and I was like, “Are you kidding me? I’ve put your shoes on your feet.” This is so surreal, so unusual.
He was very funny. He found ways to work around just about every physical limitation ALS threw at us.
So, you know, we, we got a second dog when he was living with ALS, and she, as a puppy, didn’t understand the wheelchair. And so she would bring the tennis ball and just drop it on his wheelchair. And he was, you know, at that point, he couldn’t use his arms. And he was like, how is, you know, if we would just laugh about, you know, silly, funny things that happened.
What gives me hope about the ALS community is the people in the community. The people in this community are forthright, eager to share, eager to connect with each other. Kind, compassionate, empathetic when it comes to living with ALS.
And I find hope in the fact that there are so many people who are committed to finding treatments and cures. Right now, there are a tiny handful of treatments and no cures. ALS is 100% fatal. It has been for more than 150 years.
It is far, far past time to find out what’s causing this disease, how we can end this disease. And my fervent hope and prayer is that it comes far sooner than later.
I do think that at some point we will have treatments and cures. It’s going to take a lot of really dedicated researchers, like the ones we have in this community right now. It’s going to take funding. It’s going to take advocacy, awareness, and I hope that I’m here to see it when that day comes that we can say we’ve eradicated ALS.
