A Taste of the Past
When my husband, Todd, was diagnosed with ALS, I grieved the loss of our dreams and our future together, but I had no idea how hard daily life would become.
ALS caregiving spouses end up taking on a lot of roles. We advocate for resources and battle insurance companies. We learn nursing and respiratory therapist skills as we navigate feeding tubes, cough assist machines, suction machines, breathing assistance, and daily care. And then we end up needing to take over most of the household responsibilities. As much as our spouses would like to help us, they aren’t physically capable.
The household duties aren’t the hardest part of the disease, but over time, it becomes wearisome to do it all.
Todd’s ALS progression has continued, but in some ways, life had gotten easier because our kids have gotten older and more independent, and they’ve been able to take on more chores. Our teenage daughter is good at cleaning, and she does an efficient kitchen island pickup. Our almost-12-year-old son is a whiz with a drill and impact driver, and he helps with basic household repairs. They both mow grass.
Todd misses cutting grass the most, and he wishes there was a way to strap his paralyzed body onto our zero-turn mower. He said if his neck weren’t so weak, he’d have somebody rig up his head array to control it. He also misses grilling.
Since I’m the primary cook, I try to keep things simple. I’ll grill foods that are quick — burgers, chicken breasts, or steak — but I draw the line there. As much as I love bone-in chicken on the grill, I don’t have the time or patience to move pieces of chicken around for 40 minutes. I’m a fan of “set it and forget it,” so we eat oven-baked chicken legs.
But one day last week, Todd had a hankering for barbecue chicken on the grill. He didn’t even ask me. I’ve turned down the suggestion too many times. Instead, he talked our son, Isaac, into letting him coach him.
Todd walked him through the steps. Isaac lit the grill. He had him find tongs, a basting brush, and a spray bottle. Isaac dumped the barbecue sauce into a bowl, and they headed out onto the patio with the chicken legs. Todd coached him in putting them on, basting at the appropriate times, and moving the legs around so nothing got burnt on the grill’s hot spots.
Isaac learns to grill with Dad. (Photo by Kristin Neva)
As I boiled corn on the cob and prepped green beans, I had this wonderful sense of our past life return from back when Todd was healthy and we cooked meals together. It felt like a breath of fresh air.
Isaac nailed the chicken. It was delicious. He liked it so much that he grilled again the next two nights. He finally said, “I’m not grilling tomorrow night. We’re having spaghetti.”
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About the Author
Almut
I am from Germany and my husband passed away 3 weeks ago. He has been diagnosed last year in September, so the course was really quick. I like to read the articles of Kristin very much and I feel for her so much as well, because I exerienced all parts she describes like love, exhaustion, despair and all the others emotions and thoughts. Thanks for sharing and I wish her, Todd and their children all the strength and support they need!
Kristin Neva
Thank you Almut. I'm sorry for your loss.
Lynn Goldberger Gross
Well now I am really crying! My husband was diagnosed about 1 1/2 years ago. He is 73. His disease is progressing slowly but thank God he can do most activities. He has lost small motor control in his hands and has lost about 25 pounds. I fear for him but I selfishly fear for myself. When you talk about all the things you have to do for your husband, I want to die! I don’t know how to do this. I am scared to death.
Kristin Neva
Lynn, that's a normal response to such an awful diagnosis. If you can prepare by getting necessary equipment in place before you need it then it is easier--and a support team--it is too much for one person so if there is family nearby or even consider moving near family, that could be helpful--or connecting with a home health agency. We prepare the best we can, but then we need to live one day at a time.
Suzanne Gallo
Kristin, I love your column. I admire your spirit and energy.
My husband was diagnosed Jan 11, 2021. Symptoms began at least 2 years earlier- unfortunately, misdiagnosed, so he is not eligible to participate in clinical trials, because he began experiencing hand cramps 3 years ago. His LS functional score is 39, and his oxygen level is 106, he is also walking on his own- no assistance for any activities of daily living. So it just sucks that he can’t participate in any of the Healy Trials.
So we are living in our family ranch house. 3,000 square feet- no steps, wide hallways. Big bathrooms. So we are staying put! Our girls are both married within the last 3 months! We got some young strong son in laws!!
I get inspiration from you Kristin!! Keep posting.
Kristin Neva
Thanks Suzanne! Glad you have a house suited to meet your needs--and those strong son in laws!