The Limits of Marriage

Kristin Neva avatar

by Kristin Neva |

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Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies.

Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked each other’s company and we had similar energy levels. Neither of us was into hardcore exercise, but we enjoyed casual walks and bike rides. We communicated well. We hosted events at our home, working together as a team in the preparation and cleanup. We traveled across the country and overseas together. We planned our future and we were mostly on the same page.

We still have a mutual commitment to each other’s well-being, but with the progression of Todd’s amyotrophic lateral sclerosis (ALS), much has changed.

Wife and ALS caregiver

Todd is in a power wheelchair and dependent on others for his care. I am his primary caregiver. We can no longer do many activities that we used to enjoy doing together. We rarely host because all the preparation and cleanup are on me, and I’m already tired from carrying the whole load of household chores. We can’t plan travel adventures or even dream about old age together. I go on walks by myself to find nourishment in natural beauty. I do activities with our kids while Todd stays at home.

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Getting Our Affairs in Order

We try to connect by watching TV shows and we find projects to do together. Todd is helping me record an audio book of my first novel. It feels good to take on another challenge together. And we’ve got the kids to parent together.

The way that Todd continues to engage in our lives helps the situation very much, but there are other deeper, intangible ways in which the disease has separated us.

We are both on grief journeys, but our losses are different, our challenges are different, and we have different responses.

I am reminded of Christ’s journey to the cross and when he told his disciples, “Where I am going, you cannot follow now.” We each have our own cross to carry, and we are limited in how much we can enter into the other’s pain.

Much of my emotional turmoil stems from the unraveling of my worldview when faced with the problem of suffering. I’ve tried to talk to Todd about it, but it didn’t go well. I’ve realized that he can’t be there for me emotionally as much as I would like.

And Todd has needs that I can’t fully meet. For a couple years, I got up and adjusted him every time he called at night so he could get back to sleep, but the sleep deprivation that I experienced took me to my breaking point. I can’t do it by myself.

We can’t be everything the other needs. We are limited in our humanity and we need outside help. He needs other caregivers and I need outside emotional support. At times, we can’t find enough of either.

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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 Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

Margaret Rhoda avatar

Margaret Rhoda

Kristin, may God give you the strength to carry on. I can imagine how difficult it must be for you to have to tend to Todd's needs as well as your kid's ones, not to mention your own self care. My husband is 70. He was diagnosed almost 4 years ago. Our kids are grown and we have been able to take many wonderful trips together. He was a musician, but since ALS affected his arms first, he hasn't been able to play the guitar or keyboards for about 2 years. He was fairly stable for the first 3 years, but now his symptoms are becoming progressively worse. I'm a retired health care worker so I know some tricks of the trade which help in caring for him. The VA has been great in providing equipment, as his ALS is considered a 100% service acquired disability. We're luckier than most, but I know times will get worse. I pray for you and your family every day.

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Kristin Neva avatar

Kristin Neva

Thanks for sharing your story and for your prayers!

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