Sunday, April 13, 2014

Figuring out the unknown…

Tuesday, March 18, 2014
Last night I found myself looking up end stage metastatic urothelial bladder cancer online. There is not a whole lot of information available on what happens when a patient goes home to die, but what is available, fits with what we are seeing with Mary Claire. Her legs are swollen with the lymphedema and her abdomen is experiencing swelling as well. There is some blood in her urine. And she’s becoming more confused. At one point yesterday, she noticed the scars on one knee that are from when she had surgery back when I was in college. She asked what they were and I told her. Then she said, the surgery wasn’t on that knee, it was on the other knee. She is also sleeping more. I am hoping that eventually she will just drift off to sleep and simply go peacefully from there.

It is so hard to know what to do. I admit I have a tendency to want to shield her from the reality of this end that is coming. Despite being the ‘official’ Catholic among the siblings, I have a harder time putting my faith in a glorious afterlife. Maybe it’s the residual effects of being taught by a nun who believed in scaring 2nd graders into good behavior via rather vivid filmstrips of a fiery afterlife and the implication that we kids would be lucky to get off with purgatory. (All of which she did right after my father dropped dead in front of me when I was in 1st grade. Not exactly what I needed at that point in my life.) At any rate, having spent over 20 years of my life being utterly terrified by the thought of dying, I'm not sure I'm ready to help my sister confront her end. Julia on the other hand, believes in a glorious heaven enough for the both of us. I'm amazed by the depth and strength of her faith.

We are noticing other differences in Mary Claire. As I said, she was much, much more confused today. We would be talking with her and she’d just stare off into space and not respond. This morning I went to shower and when I got out and checked on her, she was lying on the couch, where we had left her, with her cell phone up to her ear. She had fallen asleep while talking to her husband Mike, who came back this evening and was, I think, a bit shocked at the difference in her since he left on Sunday. She's also having trouble feeding herself. She had issues getting the spoon to her mouth and kept dropping food. And it takes longer for her to take her pills. When we got here on Saturday, she'd pop them into her mouth easily. Today, I had to put each individual pill in her hand, then she would slowly raise her hand to her mouth, barely get the pill in, then take a sip of water.

So, we are afraid that the end is nearer than we originally thought. She does still know us. Our brother Clark and his wife are coming in tomorrow night instead of Thursday night. Jane is coming in Friday instead of Sunday. And I am beginning to see that I may be here still next week, even after Jane comes in. I know Larry is worried about me missing work next week. But I just can't bear to think of leaving MC. And I do have quite a lot of sick time that I can use if needed.

In one of Diana Gabaldon’s books, the main character talks about the ‘…heartrending and necessary task of helping a man to die.’

That is the business I am engaged in now. Only it is my sister who is dying. And it is breaking my heart.

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