This ALS caregiver is learning to hit the pause button
A therapist is encouraging me to make the time to care for myself
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I’ve recently started meeting with a therapist through telehealth to try to better cope with life as my husband’s caregiver. Todd is homebound now, so we have been more isolated, which is hard on my mental health.
It’s stressful to always be on duty, ready to move an arm, scratch an itch, make micro adjustments to his noninvasive ventilation nasal pillows, or help clear his lungs when they fill with mucus.
The therapist has encouraged me to take pauses from caring for Todd to take care of myself.
Caregiving becomes tedious at times, such as when I make adjustment after adjustment but can’t get his nasal pillows comfortable. There are other parts of the job that are unpleasant, such as toileting and suctioning mucus. For some time, I’ve just been powering through these tasks, but she encouraged me to remind myself in those moments that I am going to pause to do something else for me next.
Todd rarely leaves our home because he is so uncomfortable in the van, but he makes it out to the dentist to get his teeth cleaned once a year. His annual appointment was last week. It was a busy day getting him up, dressed, fed, on the toilet, and finally ready to go. I gathered everything we’d need, including the travel bag for his ventilator, the noninvasive ventilator mask he likes to wear while having his teeth cleaned, and his Headmaster neck collar to support his neck on the ride.
Time for a pause
We left on time with a couple minutes to spare, but when we got to the bridge that takes us across a canal to the neighboring town, it was blocked by police cars with flashing lights. I called the dentist office to let them know we might be late. Fortunately, the lanes opened a few minutes later and we drove to the office. I recruited someone who was coming out of the dental office to hold the door, and then I wheeled Todd in. Phew! We were a few minutes late, but we made it. All went well with the appointment and we returned home.
When I got home, I helped Todd in the bathroom and then got him set up on his computer. It was time for me to turn my attention to the breakfast dishes I hadn’t had a chance to clean up earlier. But then I remembered — it was time for a pause. So I let the dishes be, sat down in my recliner, and read for half an hour.
I’ve been working my way through different memoirs. I like escaping into other people’s lives, and I’m often encouraged by the strength people find to survive really difficult things. And I find reading refreshing.
I read a couple of chapters and then turned my attention to the dishes — and ordered takeout for dinner.
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