I’m Thankful for Getting a Chance to Miss You

Kristin Neva avatar

by Kristin Neva |

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“I’m glad I got the chance to miss you,” I told my husband, Todd, when I got home after a day trip skiing with our children last week. Since Todd has ALS and I am his caregiver, we rarely spend time apart.

Now that he is paralyzed, we don’t have the normal rhythm of life that we used to. When we first married, we each went to our respective jobs, and then in the evening we connected, sharing stories of our days. When we had kids and I became a stay-at-home mom, there was energy and excitement when Daddy returned from work.

I miss the rhythm of being apart, coming together, and then going our separate ways again.

What do we talk about when we’re together all day without outside stimulation? Our world is pretty small with so much time at home.

We delight in watching our kids grow up and discuss how to parent them. We have creative energy when we work on projects together, like making videos for our YouTube channel. We try to expand our world beyond these four walls, but it’s not like it used to be.

We lack the delight of reconnecting after missing each other. I can’t miss him if we’re always together.

It’s expensive for me to be gone for a day because we need to hire somebody to take care of Todd, but it’s good for me to have a break, and I want our kids to have active outings.

The weather had warmed up and a caregiver was available, so I took our son and daughter to the Porcupine Mountains Ski Area. The Porkies, as the park is known, offers breathtaking views of Lake Superior.

A view of Lake Superior. (Photo by Kristin Neva)

I leaned back on the ski lift and took in the view, feeling the sun on my face. I realized how unusually relaxed I felt.

It’s hard to always be on duty. It’s sad to watch my once-strong husband continually lose function and experience frequent discomfort. It’s tiring to live with grief. And even though helping him cough has become routine, my general stress level is heightened now that he is dependent on me to clear his lungs at some point almost every day.

But last week, Todd’s lungs were relatively clear, and the caregiver knew how to perform the quad assist cough. I could enjoy 10 hours separated from Todd, focusing on the kids and the scenery — a day without thinking too much about ALS. And then it was good to come home and feel glad to see him.

The break gave me energy, even enough to put him in his portable tub before his shower. He had been wanting a soak, but I had been putting it off because the process is time-consuming. It’s not a difficult task, but honestly, I have been feeling too weary to add another thing to my to-do list. But the morning after the ski trip, I set the plastic tub up next to the shower, and he had a good soak.

Breaks can be hard to come by, but when I can make them happen, it’s good for our relationship, my mental health, and the quality of Todd’s care.

I just wish he could take a break from ALS and go skiing with us.


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.


Lida Soulikhan avatar

Lida Soulikhan

It's an excruciating pain and misery to witness every day how our loved one slowly is disappearing in front of our eyes. What you want to tell them? How could you give them hope for a brighter tomorrow, when they know exactly what is waiting for them down the road. It's not only dying, we all die one day, but to lose dependency and constantly wait for someone to help you for the simplest activities of the day, is dying ten times every day. To live with dignity is priceless, to die with dignity is more precious.


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