As the colors change, I’m bracing for another winter with ALS
My husband's declining health motivates me to prepare for what’s coming
Cooler-than-average temperatures these last few weeks are turning our maple trees red, reminding me that winter is just around the corner.
Due to caring for my husband, Todd, who has ALS, I don’t often get out to see the best of Michigan’s Upper Peninsula — such as the shores of Lake Superior or the region’s many waterfalls — but I still savor summers close to home. I walk down our country road, past patches of Queen Anne’s lace and brown-eyed Susans. I watch sandhill cranes gawkily strut through our field, looking for food. I pick wild strawberries, raspberries, blueberries, blackberries, and thimbleberries.
It’s hard to say goodbye to summer.
The muted green and amber tints of fall have motivated me to finish up some outdoor projects. I got my drip edge landscaping to a good stopping point for the season. I spread manure pellet fertilizer on the lawn after the bag sat by my front door for weeks. I spread grass seed on our lawn that will germinate next spring. And I cut brush from around the apple trees, cherry trees, and Fraser firs that I planted a few years ago.
I’m bracing for winter, when life in the Upper Peninsula will be much harder. For nearly six months, I’ll need to bundle up due to the cold, remove more than 200 inches of snow, and try to keep my spirits up without much sunlight due to cloud cover from the big lake.
I’ll try to find beauty in nature as I ski through the frozen woods, and in the evenings, I’ll burn candles on my kitchen windowsill and watch the flickering flames reflect off the dark glass.
Similarly, our life with ALS only gets harder, and I’m bracing myself.
Todd has been having increasing difficulty breathing. He often comments that he feels like he’s not getting enough air, even when he’s hooked up to his noninvasive ventilator. He might have months or years left, but he could realistically go at any time, and I have a feeling of unease.
Todd’s declining health has motivated me to prepare for what’s coming with his ALS. It’s been a few years since I printed out the documents he’d prepared for me to help manage life after his death, and there have been some changes in our accounts and finances since then.
Todd reconciles our banking accounts, runs payroll for his nighttime caregivers, and files our taxes. He showed me how to access the files on his computer, but I was feeling overwhelmed at the time. I wouldn’t know where to begin if he were to suddenly die.
“I have instructions all written out for you,” he said as he began digging around in his electronic folders. But he had trouble finding the document. “Here it is,” he finally said. He showed me a file called “Instructions for Year-end Payroll and Taxes.”
Then he found another file he’d prepped called “In the Event of Death.” He started to read the document: “With termination of employee payroll, cease Michigan withholding per form 446, ‘Michigan Income Tax Withholding Guide: Employer Discontinuance.’”
He said it so nonchalantly.
“I’ve got to print all this stuff again and make sure I have current information in my binder,” I said through tears. I was crying as I thought about how overwhelmed I will be when he’s gone. We still haven’t purchased our burial plot or gravestone, although he has designed it: a cross with buttercups. But I don’t know where that file is on his computer.
For now, we still have time — at least we have today. Because Todd rarely leaves the house, our entertainment has been watching shows together. We’ve been enjoying the new comedy “The Paper” and a drama from a few years back called “The Queen’s Gambit.” And this fall, we’re excited for the new seasons of “St. Denis Medical” and “Slow Horses.”
The other day, after clearing Todd’s lungs, we settled in to watch one of our shows. I was struck with how sad I’ll be if I’m left midseason watching the remaining episodes by myself. I started crying again and told Todd, “What if you don’t get to find out what happens in our shows?”
“I doubt I’ll care what happens in ‘Slow Horses’ when I’m sitting at the feet of Jesus,” Todd said wryly.
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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