Crossing the Rubicon

jan

Crossing the Rubicon

jan
I step into the bathroom, and as one swipe of multicolored toothpaste crosses my brush, I glance up to see my mom pour a teapot of water directly on the coils of the electric stove. Mind you, the stove has no power, with the breaker off in the garage. However, I am sure the coils didn't require bathing, nor would they improve their performance with irrigation. I was happy, though, to see my mother's exasperating antics. It meant one more day on this side of the Rubicon.

Last week wasn't a great week for my mother, with later stage dementia. She is sleeping more, awake about five hours a day and sleeping the rest of the time; drinking and eating less, maybe two cups of food and water a day, down to two meals instead of three. Our doctor, who has been leading us in the end-of-life discussions, said this would be the course for her.

The dilemma presented on Friday evening. My mother was more agitated than normal, extremely unsteady, weak, not communicating. Still her piss-antery persisted, as she preferred the twin bed covered in a plastic mattress protector to a bed made with sheets. From the bed she sat and wiped clean the windowsill of bugs, then she knelt next to the bed, then she collapsed on the floor, lowering herself completely down in slow-motion while I lurched to put a pillow under her head. I covered her with a blanket and left her there to sleep, checking on her in two hours to find her feverish and flushed. My mom is small and I'm not that much bigger, so I'm not the best candidate to be picking her up and hoisting her as she requires these days. I did get her in bed, tried to cool her with compresses, and she chewed some Tylenol, which was a miracle.

Laying in the other bed and staring at the ceiling, I'm trying to come up with The Game Plan. It's Friday at midnight, and where am I going to go and what kind of help do we need? If I take her, a dementia patient, to the Urgent Care Clinic, how can they help? She cannot respond to their requests for urine-on-demand, or tell you "where it hurts". They could take her temperature and blood pressure, but I can do that myself. Our doctor will not be in the office for two more days. We have not established with him the protocol of a house call as of yet. Is my mother exhibiting symptoms worthy of a house call? When exactly do you call the paramedics when you are terminal and have a living will requesting no tubes, no surgeries, no machines? The normal ER treatments are challenging enough, but dementia makes everything else so complicated. I don't want to call the ambulance and start down a road of treatments we wish we never began. How do you find a way between abuse and care, when a patient, and a dementia one at that, requested no extraordinary measures? What qualifies as serious enough to call an ambulance, anyway? Does bleeding profusely, a broken bone, uncontrolled vomiting count? And short of that, what?

I am grateful that by the morning, my mother's fever was gone, and she has slowly (obviously) gotten back to her aggravating self. So this is a process of UP DOWN UP Down Up Down up down     up        down     . It will never get better. I had called Hospice for advice two months ago and they said she was not eligible for their services until she no longer ate, talked, or walked at all. I need some Guidance, some Rules, some Help here. I can't keep lifting her, and you know the next medical incident is around the corner, it has to be.

Today, Monday, I called Mom's doctor and he came on the phone personally. My sister and I were going to request a consultation with him so we could discuss some guidelines, but he immediately cut to the chase. "I will call Hospice for you today", he said. "That is ridiculous that you have to wait to be enrolled. She is terminal, she will never get better. What are you going to do at 3 in the morning?" I could have nodded my head off my shoulders with agreement. He gets it, he completely gets it.

So now we wait for Hospice to give Mom an evaluation, and hopefully begin services, even if a few. They will be the ones to call in the night; they will be the ones to help me make decisions, our ship, our captains, and our crew.

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