Does It Ever Get Easier?
“Does caregiving for ALS ever get easier?”
I pondered the question someone had posted on social media.
I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?
I had been signed up to teach preschoolers at a vacation Bible school the following week. Someone from church asked if I still wanted to do it, thinking it might be helpful to have a distraction. I declined. I couldn’t. I could barely function to take care of our 9-month-old son and 4-year-old daughter.
Coming to terms with the diagnosis was hard. I went to counseling, and the counselor encouraged me to train my mind to focus on “today” rather than looking too far into the future.
For some, the future comes too quickly — muscle function deteriorates so fast that people don’t have time to adapt. We are on a slower track. Todd’s health has declined, and daily living has become increasingly difficult, but we’ve had time to find equipment and get into a routine. In some ways, life becomes more manageable, at least for a time, until there is another loss.
Maybe I’ve gotten stronger, or at least more accepting of life as it is. Or, perhaps I’m just in the middle of a plateau. Thinking back, I was near the edge of my coping abilities during several years of sleep deprivation, but as long as we can get nighttime caregivers, I’m optimistic I’ll survive.
Even though I’m no longer shocked by each loss, the ongoing grief doesn’t subside. I’m sad that Todd’s health continues to decline. That he’s often uncomfortable and in pain. That his muscles are wasting away before my eyes. That my once-capable husband must endure such suffering. That there’s no way to fight this — at least not one that’s available to us.
I don’t anticipate the future like I used to. We don’t plan family trips or dream about what we will do when the kids are older. All we have is the past and the present. And in the present, we are living in a land of shadows.
But there are moments when light shines through the shadow of ALS.
When I watch my daughter perform or play with the high school band, or recount amusing incidents from her day at school.
When Todd and I watch a funny show or work on a project together.
When I go on a walk and take in breathtaking scenes of natural beauty.
When I savor a cup of tea.
When I listen to an interesting or entertaining podcast.
When I talk on the phone with a friend.
When my son and I go mountain biking on a path cut through beautiful hardwoods, red pines, and white cedar, beauty surrounds us, and I feel the joy of motherhood. I concentrate to stay on the single track as I cycle up and down hills, roll over roots, and cross narrow boardwalks. In those moments, I am not thinking about ALS at all.
Biking trail. (Photo by Kristin Neva)
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About the Author
John alvarez
you are an inspiration to many. Don't give up hope, I too am like Todd, but the research that is occurring and the drugs being trialled give me hope that even people with long history of disease will benefit in the near future. Look at systemic muscular atrophy, curable now and those that have suffered for decades are getting improvements!
god bless
A/professor John alvarez FRACS
Kristin Neva
Thanks for commenting. I hope treatment is available soon.
Monique Pitre
It is such a cruel disease. My husband is 60 years old and was diagnosed December 2020. He is declining so fast in all aspects. The hardest for me is, he is also declining cognitively. Though this may be better for him. Our dreams of retirement and traveling instantly vanished. One day at a time, one episode at a time. I feel bad for our children, though that are all adults. I feel for our 8 grand daughters, especially the youngest one. She will not rmember her grandpa.
David Crellin
Does it get easier? As a teenager I nursed my Mum until she died aged 49 with ALS. The practicalities were easier, but emotionally??? It affected me longer than I knew at the time.
Now it's me with ALS and my wife & two adult sons doing the caring. Am I better placed to help them? I'll leave them to comment in time.
Kristin Neva
Thanks for commenting. I think a lot about how this affects our children. I'm sorry you've had to deal with ALS from both places.
Wayne
The caregiving is a roller coaster of emotions to say the least. My wife and I are caring for our 24 year old son who was diagnosed with juvenile ALS in March of this year. It is the most horrible thing you could imagine to watch a child go through the stages of this devastating disease. I pray for a working treatment or a cure for all who suffer with this. I have learned that not only does the individual suffer from it but it but all around that individual suffer and it does not go away. Fortunately i am a heavy sleeper so at night when i sleep the switch can be turned off and i have some time of peace. My wife is not so fortunate as she has had many many many sleepless nights. She is a stay at home mother so she takes on the brunt of dealing with the hardships that come with ALS. I do not know how she does it. We work hard on our faith in God and focusing on one day at a time and trying to make that day as comfortable as can be for our son and try to make memories. I do not know if it is ever going to get easier but all we can think about right now is keeping our son comfortable and happy. May God bless all of you out there who are affected by this disease.
Kristin Neva
My heart goes out to you and your family. So hard.