Helplessness

The last couple of days, my overall sense has been one of powerlessness. That, paired with incompetence. I'm hyperaware of everything I don't do perfectly, and feel resigned to things just sort of falling apart around me.

I know, rationally, that this is a response to how things were a year ago. Earlier in the ordeal, both Sandy and I had assumed that she could get stronger. Even when we knew she didn't have long to live, we believed that there would be a "better" before there was a "worse." But by July 13th, though I continued to struggle to make things better — to maximize her lucidity while minimizing her pain, to try to have her work with the physical therapist to get to the bathroom, or at least carried out of the room for a change of scenery — I recognized that each effort met with failure.

At 6:30 that morning, she ordered me to call the notary public right then so that she could sign her revised will in front of him. I told her that the notary wouldn't be in until 8:00, but we could probably get him up there as soon as he came in. Soon, though, she was agitated, demanding more pain medication, and starting to behave erratically. I conferred with the doctor on the telephone, and she told me that Sandy may have already had her last truly lucid moments. She convinced me to permit them to give her dilaudid.

The first chemo regimen in 2006-2007 was brutal, but we knew
there was an endpoint. When she was in treatment for Stage IV
breast cancer, we hoped there wouldn't be an endpoint, or at
least not the one they told us to expect. And no matter how
much I knew about the odds, it wasn't until she stopped
eating and drinking that I resigned myself to her dying. But
even then, I could only tolerate that reality for short periods
of time. I'm still having trouble with it. How could she die?

In the hospital, I'd negotiated with the nurse about dosage, and I'd seen good results with less than a milligram. I don't know why I didn't ask what dosage they were giving, but almost immediately after I agreed, the nurse pushed 4 mg through Sandy's IV. Her eyes rolled back in her head, and she was gone. As doctors and nurses took her vital signs and otherwise examined her, her friends showed up with the scrambled eggs she'd specifically requested they make her for breakfast. In the chaos, I waved them away. Sandy was out of it for six hours, maybe seven. She never got her scrambled eggs.

She did recover from the narcotics enough to have visitors that afternoon, friends as well as family, including her stepsister, who had just arrived from Alaska. She wasn't very talkative, and instructed others to entertain her.

That evening, the nursing staff affixed a pain medication pump subcutaneously. It was quite an ordeal as they first tried to attach it through her port, but that didn't work. The idea was that she'd get a steady dose of dilaudid automatically and when she needed more, she could push the button and get an additional small dose. She was awake at 3:30 a.m., declared herself starving, and she finished the Boost drink she'd started just before falling asleep. She was awake again at 6:30 to take pills, and the nurse complimented her bed mobility (she pulled herself around using the bed rails) and her pill-taking ability.

Her legs had been twitching with pain, restless, much of the night. I'd held on to the button, and I'd been giving her an extra dose of dilaudid just about hourly, though it really didn't seem to help. I was relieved at 8 a.m. when I gave her a dose and her legs relaxed, finally. But I wonder now if it had anything to do with the dilaudid.

At 9:30, the nurse came in to wake her for her pills, and we couldn't rouse her. This was different from the way she'd been with too many narcotics in her system, different from the nonresponsiveness of a sodium drop. Laura and I both felt it. We asked the nurse if this was it. He was such a sweetie, such a good coach and mentor to us in this unfamiliar process. He said, "Do you mean the change in plan? That she'll stay here instead of going home?" He told us that she wouldn't die that day, but that yes, this was probably the beginning of the end phase.

And later, when we did have the opportunity to ask if she wanted food or water, she refused it. I can't remember now if that happened before she started talking on the afternoon of the 15th or if it was then. But it was confirmation, certainly. At the hospital, I'd taken her a bike water bottle so she could easily drink in bed, and in the weeks that followed, she'd insisted it always be nearby and full. When she woke, she reached for it immediately each time. She'd been terribly thirsty. But on the 15th, when she was actually visibly and audibly dehydrated, she refused water.

We were on a path I didn't fully understand, but I knew I wouldn't like the destination. I couldn't drag my feet, take a detour, turn around. We were doomed, destined to keep moving toward an undesirable ending. I could tweak some things, argue the merits of various pain remedies, and be present. But I couldn't keep her body from its trajectory, and I couldn't get us back home together. 

There were good things about the way Sandy died, if she had to die at all. She got to say goodbye; I was able to be with her and take care of her; she was surrounded by people who loved her and was able to receive messages of support and admiration from friends all over the world. She suffered more pain than she would have if she'd died instantly somehow, but in general, I think this means of death served her better than a quick, tragic accident would have.

For those left behind, though? Yes, I'm glad we were able to say the things we needed to say, and to have more time together. But it's devastating psychologically to be so powerless, to know she's dying and not be able to do anything about it. And now, a year later, that's the feeling that permeates my days and my dreams.