Don’t Forget your Prayers

“You could write a story about it.” Mom said. The only thing missing from this dismissal was a slow burning Virginia Slim between her lips. “I, personally, am struggling with providing this level of care.” I had told her. “Someday you’ll look back at it and laugh.” she added. I don’t know about that.

The reality of caring for an elder with dementia is harsh and unrelenting. Just when you get used to a new normal, a new decline arrives and requires you to pivot. Much of these declines are bearable—wiping the nose as it runs uncontrollably, cleaning up after a particularly messy meal, encouraging swallowing when a former favorite food is no longer working. When it comes to the bathroom, however, this is where many of those in the role of caregiver begin to break down a little. For months now, we here have been struggling with this new decline and it requires a lot. Changing clothes, changing sheets, wiping up, wiping in general, washing floors, sponge baths, and taking out trash. This on top of preparing meals has had me worried about a different kind of cross contamination just about every day. It’s a lot. It’s all a lot.

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My quiet protest against the status quo last night led to anger and then silence that continues today. “You all just need to get out of my way.” I was told. Mom was unwell over the weekend and ended up in the hospital for 24 hours, a flare up of COPD that I couldn’t manage at home because she has gotten rid of our oxygen compressor—it was taking up too much room. Now, she no longer can get a prescription for 02 unless she flunks a few tests with a pulmonologist. Had we still had the oxygen, I could have handled the situation. Instead, Gary came and monitored Mom while I made good on a promise to bring Maire and two of her friends to the arcade. When I got home, Mom looked worse and her oxygen was at 83%. I called the on call pulmonologist to see if they could call in some oxygen which, of course, was a no go. So, Gary took Mom to the ER and there they spent the afternoon/evening, she got a quick admit and bounce home the next day. Like I said, she’s a tank.

This, my friends, is the grey to my evergreen. A couple days ago I wrote about acceptance, the radical kind, and that finding the love in your current situation can help. I stand by those words, I used them again today when brushing Dad’s teeth after changing him and stripping the bed. There is love there, I feel it. However, there are and should be limitations to my capabilities, especially being a single parent to three. Simply put, I cannot burn out. “I’d put you in a nursing home before I’d wipe your butt.” Maire told me last night out of the blue. She had witnessed Grampy, mid-prayer with the VNA chaplain, get up and have to use the bathroom with my assistance. From the mouths of babes to God’s ears.

When I put Dad to bed last night, I pointed at him and said “Don’t forget your prayers.” He used to say that and point at me every night before bed which eventually just turned into pointing at one another. He laughed his Santa-like laugh and I swear he remembered. I walked out into the dark woods after saying goodnight to be near the fireflies and to hug a tree. Yes, that’s right, I hugged a White Pine. “You hugged a tree???” Maire just said to me, reading over my shoulder. “Yes I did.” I said. “Ew. Weirdo.” was her only response. Fittingly, I’m wearing my “Having a weird mom builds character” t-shirt. Truer words have never been spoken. “You have half my DNA so don’t be too judgy there Señorita.” I told her. Onward and forward we move this family of mine.

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