Living with ALS, I’ve sometimes found talk therapy beneficial

With grief, anxiety, and too many responsibilities, a professional outlet can help

Kristin Neva avatar

by Kristin Neva |

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After my husband, Todd, was diagnosed with ALS, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with two small children? How would they cope with the loss of a parent? What would I do for work after he’s gone?

My mind raced, and I couldn’t sleep. I found a counselor to help me get a grip. He encouraged me to train my mind to focus on today. I met with him regularly for a couple months.

A few years later, Todd needed a wheelchair, and he had trouble sleeping at night. We’d moved back to my hometown so we’d have the help of my parents, but I was beginning to lose it again.

I did another round of therapy with a new counselor. After seeing him for a couple months, there was once a last-minute conflict, and I ended up spending the time in my car writing in my journal.

I realized that writing with intentionality was nearly as cathartic for me, and I didn’t want to spend the time and money on therapy anymore. In time, I also realized that my stress was magnified because I wasn’t getting adequate sleep. Todd was increasingly dependent on nighttime care. When we started hiring help at night, I felt better.

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A third round of therapy

Fast forward to this fall, 13 years into living with ALS, and I’ve been feeling increasingly isolated since Todd has become homebound. I’m weary from living with chronic stress. I continue to journal, but I thought I might be helped by an outsider’s perspective.

I met with another therapist. I might be doing as well as possible, considering the circumstances, but I figured therapy was worth another try. I was able to talk candidly, free from any expectations that accompany conversations with people I know.

During our sessions, I filled her in on our situation, the ongoing stress, and the grief that we’ve been living with. I expressed my frustration with our healthcare system and the lack of support for people with ALS. I also voiced thoughts about the existential questions that plague me.

The counselor listened as I sorted through my thoughts and emotions. During one session she asked, “How long have you felt like a single parent?”

“Never!” I responded immediately, surprised by my visceral reaction. Todd can’t do a lot of things, but I’m grateful that he’s still an involved parent.

During another session, I expressed my frustration about our night caregiver shortage. “If I can’t line up help, his care falls on me. Everyone else can say ‘I’m not available,’ but I can’t.”

My therapist posed a question: “You mentioned your husband does a lot on the computer. Could he be involved in the recruitment process? Why is it your responsibility?”

I paused, thinking through the roles that Todd and I play.

“I like doing the advocacy for equipment because it feels good to accomplish things and I’m good at it, but I don’t know why I’m doing all the recruiting,” I said.

Making use of therapy

When I got home, I asked Todd why he doesn’t recruit.

“Because you’re active on social media and have local connections,” he said.

“But you can email people.”

I asked him to send recruitment requests to church and college-ministry leaders, and he was happy to do so. Increasingly, I’ve been asking him to do other things. When the kids ask me to do something that Todd could do, such as order something online, I tell them, “Go ask Dad.” Todd likes to stay busy anyhow.

By my fifth session, I found myself wishing I could skip my appointment, preferring to do some work outside with my tractor on a sunny afternoon. I like tractor therapy, but since I had a session scheduled, I went and talked. By the end of the session, I felt like I didn’t have anything more to say, and I told the therapist I was going to come in less frequently.

I scheduled my next appointment for the following month. I don’t want to go to therapy every week, but I’m glad I have it available as a tool when I need it.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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