Finding new strategies to improve my mental health as a caregiver

I'm trying a couple of techniques to ease the trauma of 14 years with ALS

Kristin Neva avatar

by Kristin Neva |

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“Why are you bouncing?” my daughter asked me the other day as I prepared the medications and supplements that I give my husband, who has ALS, through his feeding tube.

“It’s good for mental health,” I said.

I’m always on the lookout for strategies to cope with the chronic stress, grief, and trauma that have been part of my life since Todd, my husband, was diagnosed with ALS nearly 14 years ago. Although I’m surviving with the help of several actions that benefit my mental health — spending time in nature, watching television that makes me laugh, taking a nightly sauna, journaling, exercising, and the occasional respite — I wish I could get to a better place.

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How does caregiver stress from my husband’s ALS affect me?

I’m often discouraged when I read advice from professionals because their words are usually geared for people on the other side of trauma or loss, not those in the midst of it. A couple weeks ago, I shared a quote from clinical psychologist Edith Shiro, who talked about needing to stay in survival mode when one is in war. It’s not hopeful to know that the only end to my current suffering is entry into yet another kind of suffering after I lose husband. What am I supposed to do in the meantime?

I finally came across a mental health professional who talks about what one can do during a crisis. On the “Pulling the Thread” podcast, Elise Loehnen interviewed James Gordon, a psychiatrist who founded the Center for Mind-Body Medicine. He travels the world, intentionally going to places where people are in war, to train others in his techniques. He doesn’t want to wait until a society is shattered and patterns are fixed before he begins his work.

2 techniques for mental health

In the podcast, Gordon recommends a couple of techniques to deal with trauma.

The first is soft belly breathing. Gordon says, “Just breathe slowly and deeply … And let your belly be soft and relaxed. … When people do this, 80 to 90 percent of people, whether they’re sitting in my office with me, or we’re in the middle of a war and there are bombs falling not that far away, 80 to 90 percent can feel a change.”

I’ve tried breathing exercises before, and while I find them somewhat relaxing for a couple minutes, I get bored. But hearing Gordon talk about how others have success with it motivates me to incorporate it into my days, even if for just a couple minutes at a time.

Gordon’s second technique is active: He recommends shaking and dancing. “Indigenous people have known this,” he went on to say. “Especially if there are traumatic events, they use this active, expressive meditation of one kind or another, drumming, and dancing, and jumping up and down, and shouting, and whatever, whirling shaking. Periodically, we humans need to do this, and so I recommend it.”

When I’m doing routine tasks, such as getting Todd’s pills ready or driving in my car, I’m often hit with extreme sadness. Grief is a normal and even healthy response to what family caregivers deal with, and it’s important that we feel our feelings.

But after 14 years of living with ALS, I’m tired of being sad so much of the time. I can’t conquer this emotion cognitively, nor can I cry enough tears to wash it away, so I’m trying Gordon’s shaking and dancing technique when sadness hits. It’s too soon to tell how much it’s helping me, but it feels good to try something new.

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.


Pam Lanno avatar

Pam Lanno

Kristin, thank you for your regular posts on various things you deal with in your journey as your husband’s caregiver. I marvel when I read that you have hung in there for 14 years already! I don’t feel so bad with my 5 year journey so far with my husband’s ALS/FTD conditions. It encourages me that maybe I can stay the course to the end, without placing him in a facility, which is my desire. To add to the various things you have mentioned to deal with the sadness and grief, I try to play music which helps lift my mood as well as my husband’s during the day. Sometimes it’s oldies which I sing along with in a comical way together with doing silly dance moves that makes us both laugh, or it’s praise and worship music at night when my husband is asleep and I can just be still and let the music minister to me. Sometimes I just cry and let the tears flow which is a release for me. I would love to exercise but I can barely get in a walk, which helps, but anything more rigorous would probably do me in as I am constantly exhausted. I also try to watch DIY decorating shows which are light and fun to watch and a distraction from the more serious issues of the day. Chatting with close friends helps also. Their constant support helps me not feel so alone.


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