Advocacy, Real life, Toward better care

ow ow ow & mom’s dying of thirst: august 3, 2016

“Hello Punkie,” Mom greeted me using my nickname before I had chance to say hello. This was out of the ordinary. Usually, I didn’t say anything when I first arrived, to give her a chance to process, and then I would say “Hi Mom,” or “Hi Patti,” to initiate a conversation. This time she beat me to it. It didn’t matter to me whether Mom recognized me or not, but still, hearing her say my name was joyful.

She was tilted back in a recliner in the sunporch, the sling on her right arm hidden under a tight-fitting golf shirt that looked like it would feel like a straightjacket. She had on winter trousers, despite the heat. Ironically, the previous winter, they’d put her in cotton capris until I took all her summer clothes home with me so that dressing her inappropriately wasn’t an option anymore.

The very thought of being constrained like Mom was made my stomach turn. But Mom’s courage was unmatched and she seemed in good spirits, though her voice was soft and quiet and her aphasia clearly evident. She’s good enough to go for tea – yay!

Before she fell and broke her arm, I could easily get Mom up and out of a recliner and into a wheelchair on my own so we could roll to the elevator, and then ride down to the first floor. But the injury to her arm prevented that.

“I’ll see if I can get somebody to help,” I said, and headed down the hall to the nurse’s station which was a few steps away.

Jimmy,* the only male caregiver on staff, happened to be on shift. He volunteered to give us a hand. Meanwhile, the TV spewed rubbish in the background, as it did day in and day out, increasing Mom’s stress level (she hated noise), as well as my own. At one point a nurse joined in to assist with part of the “transfer,” and then left. This is how it went:

Besides her broken arm, the trauma to her head and the UTI, there was now another ugly wound on her leg. Obviously, it was sore.

The tonal rendition of “You are my sunshine” was produced by the pressure pad Mom was made to sit or lie on when she was in her wheelchair, the recliner, or in bed. The alarm pad hadn’t averted the fall the previous week, and was now even more useless. Mom was completely immobilized – insisting on using the pad was a case of shutting the barn darn after the horse had bolted. The nursed relented, and allowed it to be left on the recliner instead of being moved to the wheelchair, thus avoiding having to lift Mom again to put it under her bottom. Thank god for a modicum of common sense.

Witnessing the distress caused by the transfer, and in this case being the instigator of it for the sake of getting Mom outside was upsetting. More so was the fact that she would have endured a similar procedure several times daily when she was moved from bed to wheel chair, and wheel chair to recliner, and then back again, each time causing her pain. To think she was also inadequately hydrated in the heat (which she made crystal clear in the sound clip above when I helped her to drink some juice), made me despair. I’d like to say I was surprised she was parched, but it had happened so often that frequently offering her something to drink when I was with her had become part of my routine.

When we finally made it downstairs, and outside onto the deck, we had a lovely time singing, and chatting with Mom’s one-on-one caregiver Sally,* who was an angel in every sense of the word. Sally remarked on how swollen Mom’s ankles were. I agreed. We tried putting her feet on the ground. “Ow!” Mom said. “It hurts.” On the plus side, unlike a couple of days earlier, when Mom had been unable to get cookies to her mouth on her own, she was eating them by herself relatively effortlessly that afternoon. What an amazing woman.

“I think you’re descended from some kind of warrior, Mom,” I observed. “Maybe Joan of Arc.”

When it was time, I said goodbye, and told Mom I would be back the following day.

“Okay,” she said, with a quiver in her voice.

“And I’ll be staying with you for supper,” Sally said.

“Oh, that’s a good thing,” Mom said, her tone once again relaxed.

Mom loved Sally, who was her companion for three or four hours several times a week. I felt completely at ease leaving Mom in Sally’s capable hands, and had fought hard to have her hours extended, as Mom was obviously so much better off when Sally was with her. My efforts in that regard, like my efforts to get her off the antipsychotics, had failed.

While Sally went to sort out some scheduling details, Mom and I sang a few short songs including “Has anybody seen my gal?” and my all time favourite “Somewhere over the rainbow” before I left for home:

*Not their real names.

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