Tossing and turning over fears this ALS journey has come to its end
My husband, Todd, had not been feeling well for a few days
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Wake me up if Todd is in distress,” I said to his nighttime caregiver.
“Of course,” she replied.
It’s not something I typically say to one of my husband’s regular caregivers, but I felt on edge. I said good night and tried to get some rest, but my mind was spinning. Is this the end? Is this the beginning of the end?
Todd had not been feeling well for a few days. He’d been more tired than usual, his feet were ice-cold, and he had little appetite. After taking a few bites of his lunch or dinner, he just wanted to nap.
He’d also been having headaches, which could be a sign that he’s not expelling enough carbon dioxide (CO2). A fingertip pulse oximeter showed his oxygen saturation at 97%, which is fine, but we don’t know what his CO2 level is because measuring it would require a blood draw at the hospital, which Todd doesn’t want to do. What does it matter anyway? He’s not interested in getting a tracheostomy with invasive, mechanical ventilation. He uses a noninvasive ventilator almost 24/7, but even with that, he felt like he wasn’t getting enough air.
I had suggested that we ask the respiratory therapist to increase the ventilator settings. She had previously told us that there’s room to dial up all of them, but Todd said he’s comfortable with where they are. Besides, he thought he just had a virus. Perhaps so, because there has been a lot going around.
I had been sick with a respiratory illness two weeks before. I washed my hands frequently and minimized contact with Todd. With his weakened diaphragm, I could not imagine that he’d survive the deep chest congestion that I had fought. But if it was a bug, it seemed different than the one I had just recovered from.
‘So much uncertainty’
As I lay in bed, sleep eluded me as my thoughts churned.
Todd had been editing audio files for a project for our church, and he told me where he had saved them in case he didn’t get to finish. Did he sense the end was nearing?
Should I suggest that our daughter drive home to see her dad before she leaves for spring break? I dismissed the idea. She’s been living with a terminally ill father for most of her life. Until we are confident he is truly at the end, she needs to live her life.
What about the upcoming trip I had planned with our son? After Todd could no longer travel, he encouraged me to continue taking spring break trips. It’s good for my mental health, and it helps our kids experience a childhood similar to their peers. We have caregivers lined up, and I purchased refundable tickets, so both could be canceled.
After more tossing and turning, I typed a message in an ALS caregiving spouses group on Facebook. I described the situation, concluding: “For years I’ve wondered if I would wake up and find that he’s passed in his sleep. Now I’m wondering if this is the night, the week, the month. So much uncertainty. What are the signs that we have just a few days or hours left?”
I didn’t see the replies until morning, but I felt better just writing it out.
After reading the comments, I concluded that Todd may be heading toward the end, but he’s probably not there yet. He’s still eating, still making sense, and still working on projects. Even though he wasn’t feeling well, he worked on our children’s tax returns.
And a few days later, he was feeling better, and we were back to our normal, run-of-the-mill crises, such as this morning, when Todd’s lungs filled with mucus and he felt like he was drowning, and I gave him manual assist coughs so he could breathe again.
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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