As an ALS Caregiver, Activities and Downtime Require a Mental Shift
With a progressive disease like ALS, plans and activities change over time
Looking back over the course of more than a decade of my husband, Todd, having ALS, I’m struck with how hard we worked to maintain some sense of normalcy, even after he was paralyzed.
We joined a Bible study with a small group of people from our church, and we brought ramps to get into the host’s home. We went to church when Todd was having mucus buildup, and he would have to leave the sanctuary so that I could clear his lungs in the lobby. We went to hockey games and school events, even when it had snowed, and I’d have to back his accessible van onto a sidewalk close to a door so that he could get in and out of the building.
Things have changed now. Once Todd started using noninvasive ventilation, he hasn’t wanted to go anywhere. In some ways, it’s a relief, because it was stressful to go out. But it’s really isolating to be stuck at home.
Making a different plan
I still need to get out for my mental well-being, and if that’s going to happen, then I need to be intentional about planning things and making arrangements for Todd’s care.
Last week, I asked our neighbor if we could pay her to be on call on Friday night to help Todd if he needed help in the bathroom. She is one of Todd’s nighttime caregivers, and she lives two houses away, so it’s easy for her to pop in briefly if she’s going to be at home anyway.
She was available, so I made arrangements for my daughter and me to see the American Ballet Theatre Studio Company with our friends, another mother and her daughter. Todd stayed home with our son, and they watched the movie “Ford v Ferrari” for the fourth time.
It was fun to have a girls’ night out, and it was much less costly to have our neighbor on call rather than hiring someone for a few hours to take care of Todd while I was out.
I’ll try to plan an outing once a month. I think I’ll go to a hockey game with the kids in November.
It’s a mental shift for me to be planning activities without Todd, because my mindset for years was to include him so he could engage in our family life. But now his neck is so weak that it’s not comfortable for him to ride in the van, and he has a difficult time driving his wheelchair unless the conditions are perfect. He feels self-conscious wearing his breathing device in public, so he’d rather stay home.
If I want to have a life outside of our home, I need to make plans and find someone to care for him. That realization makes me sad — for me, for Todd, and for the kids. But with a progressive disease that only gets worse, there comes a time when we need to face the facts.
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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Romillie
Hi Kristin,
Such an inspiring article and I very much feel for you. I had to take care of my dad who was also diagnosed of another rare disease, but not as long as you have been doing for your husband, Todd. I totally understand the challenge and may be the pain of making other plans now that will not exactly have our loved ones in it.
Please know that you and Todd will be in my prayers. God Bless!
Kristin Neva
Thanks for commenting, Romillie, and for your prayers.
Martie Howard
Hi Kristin
I totally relate to your story. My husband was diagnosed with ALS in 2016. Thankfully we only had one child that needed to get through high school. The rest of the kids were older. But my youngest is Autistic so there’s been a battle inside me to make sure I’m giving both of them the attention they deserve. It’s ALOT forsure as you know. I found your story inspiring… We watch church online because it takes like 3 people to get him in a car. But sometimes I wished we would’ve tried. We did go on vacation with friends when we could. Our last trip was for my 50th birthday and we took all our kids and celebrated with friends that also turned 50. That was this last April. It was obvious that this would be our last vacation. I’m thankful all my kids were there for it. It is such a struggle to be home 24/7 without much interaction from the outside world. We’ve lost many friends over this diagnosis.. and the surprising thing is that the friends we lost were Christians and I thought for sure they’d be there by our side. This disease causes soooo many losses. Just the simple things like holding my husbands hand while walking and Christmas shopping. And hugs… I miss the full embraces that my husband used to give. It made me feel safe and loved. Take care Kristin I’ll be praying for you and your family!
Kristin Neva
Yes! I miss the hugs too--and our last vacation was a good memory, but so much work we knew it would be the last. Thanks for sharing your story.
Gail Albert
Martie and Kristin,
Just read your comments about missing hugs and embraces. After 5 years into this journey with my husband, I understand completely. My husband lost his speech first and since then limb paralysis. We used to dance every night for years to a Johnny Mathis song. How I miss that. But I would just point out that your husbands, no doubt, miss the hugs and embraces as much as you. Recently, my husband reminded me (with difficulty since he cannot talk) that he needed me to sit with him, hug his arm, and hold his hand while we watched tv. It’s easy to become overwhelmed with everything that needs to be done and just taking time for that gets lost in the shuffle.
Kristin, thank you for your columns. They are always poignant and reassuring.
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Kristin Neva
Gail, thank you for the good reminder and encouraging words!
Mary
We did outings at first as well. But once my husband went on bi-pap we have done very little. We did make it to my son's wedding two hours away. I did pretty well going out and staying active until 2023. Now I am very tired and can barely do a coffee run to Starbucks. Dressing for church to make a 10am service is very tiring. I sleep on the couch in between tasks. I feel I am suppose to entertain and engage my husband, but I am often tired. I know we are nearing the end of this journey. I am praying for a second wind!
Abigail Owen
My husband was diagnosed in 2016. These days he is invasively ventilated and can only move his eyes. This past weekend we went out to a community festival as a family. I still sleep beside him. Our children play tickle games with him - he is the perfect target! I hold his hand... wrap his arm around me... In fact, we still have a healthy sex life! While our life looks nothing like what it used to, the fundamentals have not changed.