The Power of Puns

“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves.

I grabbed the urinal and held it for him.

Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so he needs my help.

“Has it pee-tered out?” I asked when I thought he might be done.

“Yes,” he said through a chuckle.

I fixed his shorts and emptied the urinal into the toilet.

“Thanks. I a-pee-ciate it.”

I laughed.

When Todd was diagnosed with ALS more than a decade ago, I did not yet realize that one of the hardest parts of our future would be taking on a job I hadn’t applied for: spouse caregiver.

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I find satisfaction in some parts of my role, such as researching, finding, and securing needed equipment. These tasks are mentally stimulating, and I feel a sense of accomplishment when I figure out what Todd needs and how to get it. Navigating Medicare and insurance guidelines is not for the faint of heart. I like being his advocate.

But there are also the mundane daily care tasks — the day in, day out of life with ALS and quadriplegia. Toileting. Feeding. Suctioning. Washing. Scratching itches.

I’ve had other jobs that were tedious. In college, I worked on the dish crew in the student dining room. I often ended up scraping plates. When things were slow, my co-worker and I embraced the yuck and built mashed potato snowmen. It helped us cope with an otherwise unpleasant job. In any case, I knew the job was a means to an end. It would help me pay for college so I wouldn’t need to be on a dish crew forever.

A hard thing about being a spouse caregiver is the knowledge that it will only end in even more grief. If ALS were just a temporary setback, a disease that could be overcome, we could fight through with optimism for the future.

Caregiving is consuming. With most jobs, you work your shift, and then you are off duty, and your time is yours. Spouse caregivers don’t get sick days or weekends off. Unless we hire someone else, it’s all on us. And it’s isolating to be at home without the energy of interacting with others.

Caregiving is hard, but I want my best friend to have quality care. Because Medicare covers very little home healthcare, and I don’t have earning power beyond what it would cost to hire someone to take care of Todd, it makes the most sense for me to do the job.

So, I roll up my sleeves and push through the unpleasant tasks. Bad puns help me cope.

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