My mother’s room looks out over a roof with the HVAC and other protuberances. But over the left corner of it all, I can see the Hudson River and the Palisades. I can see it, but my 94 year-old mother can’t.
Day by day, she grows smaller in the hospital bed on the oncology floor with the patients who are at the point at which “Comfort Care” is their last best option. My mother doesn’t have cancer, but, with advanced dementia (can’t swallow) and renal failure, “Comfort Care” is her last option as well, and this is the best place for her in this hospital. (At least I think so; my brother doesn’t agree.)
I have blogged about my mother’s condition before, and you can read those posts by searching this blog for “dementia” and/or “caregiving.”
For the past ten years (which, not coincidentally, is when I began this blog) my brother and I have disagreed about the effects on my mother of her journey into dementia. What he insisted was her usual stubbornness and feistiness, I believed, from my own research, was that insidious deterioration that had begun in her brain and would end just where it is ending. I had read The 36-Hour Day, I logged onto online forums on the subject of symptoms and care. I subscribed to Care ADvantage magazine to get tips on what to look for and how to help her manage the changes I could see in her behavior and her perceptions of what was going on around her.
My brother and I brought our mother to the emergency room last Sunday, after she had refused to eat or drink for several days, was obviously dehydrated, and had begun to tune out the world. In retrospect, perhaps we should have let nature take its course, and she might have simply gone to sleep at some point and never woke up. But she seemed in severe distress — couldn’t find a comfortable position to lie or sit in, and finally, unsuccessfully, tried to sleep sitting up. She had stopped communicating and kept rubbing her legs. We couldn’t tell if she were suffering, and so we took her to the hospital,
She is sedated, now, as “comfortable” as possible during this time when her body is shutting down. Her awareness already has, except for brief and seldom moments when she is physically disturbed and then responds with wide-open, red-rimmed eyes and an unearthly howl that resonates with a primal fear.
I have slept in her hospital room every night since she was admitted last Monday, listening to her labored breaths and getting up to check her when her breathing stops for several seconds at a time. When my brother comes to stay with her during the day, I take some time and slip away to shower, change my clothes, eat something other than hospital cafeteria food, walk in the crisp fall sunshine. The time drags while I am sitting in that room with a partial view, and so I knit, read, play games on my iphone, check in with FaceBook and my son’s Twitter, check my email.
But this isn’t about me.
Or is it?