What is contentment when ALS is in the picture?
A new book prompts thoughts about the subject from this caregiver
This morning, while my husband, Todd, was sleeping in the next room, I read a few chapters of Brian Jeansonne’s new memoir, “Onward Forward — My Journey with ALS,” in which he examines with vulnerability and insight his life with the disease.
In Chapter 11, Jeansonne, a spiritual director and New Orleans native, writes about being content. He describes learning to sleep on his back after ALS took away his ability to turn in bed; letting go of his bikes when he could no longer ride them; losing the ability to coach his kids; and losing his voice.
“Acceptance and letting go are themes that thread themselves throughout my ALS years, and every single time it’s difficult,” he wrote. “As time marches on, however, and I continue to practice, it does get easier.”
However, he decided that he’d never be content with losing physical intimacy with his wife, since he can’t hold her hand or rub her back. Instead, he’s had to find a place of acceptance. “And I’m OK with that,” he continued. “I’ve learned to be content in all things except in not being able to touch the love of my life.”
Reflections on commitment
I heard Todd giving commands to his Echo Show device to adjust his bed, so I went to help him. Like Jeansonne, Todd has also lost much because of ALS; he’s now paralyzed and needs noninvasive ventilation. I thought about contentment as I went through his morning routine. I helped him pee in a urinal, stripped his shorts off and washed him up, put clean shorts on and a sling beneath him, and used an overhead lift to transfer him to his power wheelchair.
Todd drove his wheelchair out to the dining room, and I made him coffee and breakfast. As I was feeding him his last bites of scrambled eggs in a tortilla, his lungs started to fill with mucus.
“I need a suction and cough, and I need to go to the bathroom,” he said.
In the bathroom, I suctioned his nose, attached his noninvasive ventilator, and then gave him manual-assist coughs. I transferred him to the toilet.
I lay on his bed outside the bathroom so I was within earshot, but able to avoid some of the bathroom odors. I looked out the window. The sun was shining, and little finches were flitting from a mountain ash to the ground, where they picked up seeds before flying back to the tree. In that moment, I felt content.
But then I heard Todd trying to cough again. “Do you need help?” I asked.
“Yeah.”
I attempted to give him a manual-assist cough while he was on the toilet.
Was I still feeling content? No. I felt determined to save his life once again. I’m not evolved enough as a person to arrive at a place of contentment with ongoing near-death experiences, the isolation we both experience now that he’s homebound, or the tedium of caregiving.
After I cleaned up Todd and transferred him back to his wheelchair, I asked, ”Are you content or resigned?”
“More resigned,” Todd said.
Either way, he seems to accept his life with grace. I think I’m sadder than he is.
When I’m sick with a bad headache, I have no desire to do anything other than lie in bed and maybe listen to a podcast. I just want to rest. But when I’m well and stuck at home because Todd needs care, I look at pictures on Facebook and wish we could be on a beach together. Maybe Todd doesn’t struggle as much with the feeling of missing out because he feels so weak that the thought of going anywhere isn’t appealing.
Maybe my lack of contentment is because I need to keep going. Someone with ALS once told me that it’s harder on caregivers because they don’t have the luxury of surrender. But I doubt I’d handle this disease as well as Todd does.
I do find fleeting moments of peace, but not the sustained sense of Zen that some people talk about.
Maybe my lack of contentment is because I’m a problem-solver. I fight for resources, I recruit caregivers, and I find equipment. I’m action-oriented, and my efforts are why Todd is still alive today.
Some of my discontent stems from a broken healthcare system. Until there’s a cure for ALS, we need support for people with ALS so that spouses can be spouses — not full-time caregivers. It’s not reasonable that a spouse must provide 24/7 care and families can’t afford to pay out of pocket for the help they need, but that’s the reality of Medicare in the United States. I’d rather fight for change than work on contentment, especially if I could figure out how to advocate effectively for Medicare reform.
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