In 2012, however, the day was flexible, pretty much all mine. I had almost no obligations to anyone else, and had planned just to garden, make some progress on my work, buy groceries, and do a few tasks for the campaign. All on my own schedule, and except for the minor campaign commitments, it didn't even matter, really, whether any of the rest of it got done. Yet all day I worried about letting someone down, mismanaging the schedule.
The past few weeks have felt rocky and unpredictable to me. Some days I'm fine; some days I'm bowled over by emotion; other days I have an unshakeable tension in my limbs. I've been telling people that I should be more stable after the 20th (and have even said a few times, "after Sandy dies," as if she really is dying all over again). But it finally occurred to me yesterday that, unlike last year, I actually know how each day is going to go. My emotions are close to the surface regardless, but I certainly know which days were most traumatic. So I'm going to plan to do the things that require more emotional resilience, patience, and stamina on, say, the 9th or 10th, rather than the 8th or the 14th. And anything that doesn't have to happen in the next two weeks can just wait until the end of July.
Today, I'm remembering the deep sleep Sandy slipped into, when we thought she might be having another sodium drop. I called the hospice nurse to ask if we could start an IV, assuming it was a sodium drop, and the nurse I spoke with said no. She told me, patronizingly, that we needed to respect Sandy's wishes and that she wouldn't want an IV. She was wrong. I knew Sandy's wishes, and I knew she wouldn't want to be left to suffer through a sodium drop and die that way; I also knew that her current POLST (physician orders for life-sustaining treatment) form said IV fluids were fine. And Sandy trusted my judgment. But I couldn't get an IV without a hospice nurse, so we just had to hope that she really was just getting some good sleep, that the gabapentine (a nerve pain medication) was actually working.
And that was the case, apparently. She woke up feeling pretty good, not complaining about leg pain for the first time in a long time. She was energetic that evening, full of plans for cleaning out email the next day and signing a will when the notary public was due to come by. By the time she went to bed, though, she was in a great deal of pain and then the vomiting started; it was an endless night of distress. And by morning, she was unresponsive in a way that really was, pretty clearly, a sodium drop. We didn't realize it was also complicated by a urinary tract infection and blood infection until later. But the hospice nurse assigned to us on the 8th saw no reason not to give Sandy an IV and coordinated our transition to Bailey Boushay. She was amazing, a godsend.
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| We talked extensively about end-of-life care even before Sandy had cancer the first time, and we talked about it after each setback or status change. The idea that I was ignoring Sandy's wishes was ludicrous. She trusted me completely, and approved of my decisions when she regained lucidity each time. |
The same nurse who refused the IV on the 7th reappeared two more times to infuriate me. On the 18th, about 12 hours before Sandy's last breath, I was sitting next to Sandy, holding her hand, when one of our regular Bailey Boushay nurses came in to give her the steroids or some other regular injection. I commented that it had been half an hour late yesterday and was half an hour early today. I honestly didn't care; at that point, I couldn't imagine that it mattered. But I automatically track things, notice patterns, especially when it came to Sandy's care. I'd been monitoring her meds for so long that I'd have had to make a conscious effort not to. He smiled at me goodnaturedly and said "Are you keeping track of me?" Before I could even say that it was habit, that obnoxious Group Health nurse, who just happened to be in the room for a brief visit, came up behind me, put her hands on my shoulders, and said "Someone needs a shower and a massage." She used the same tone of voice my parents used to use when I was throwing a tantrum and they'd say, "I know a little girl who needs a nap." While probably very accurate when I was a child (though unlikely to do anything but provoke a fiercer tantrum), in this case, it was completely uncalled for. The love of my life was dying. I was watching her fade before my eyes. No matter how tightly I held her hand, she was slipping away from me. It was not for this woman, who didn't know me at all, to imply that my distress could be washed or massaged away. I flicked my shoulders to shake her off of me and said, pretty emphatically, "You don't know anything about me." She said, then, as if she were my strongest advocate, "You need to be right here, don't you? Don't let anyone else tell you what you need." F-ing hypocrite.
The last time I interacted with her, I'd called a few days after Sandy's death to find out what to do with leftover controlled substances, such as morphine. She told me, unbidden, "You took good care of your friend." I said she wasn't my friend, she was my spouse. Instead of simply apologizing, she laughed and said, "Well, I'd hope she was also your friend." She would never have said that to a woman mourning her husband, or a man mourning his wife. She would never have called their spouses their friends. I am honored and grateful to have many wonderful, loving friends who I very much consider part of my family. But Sandy was (and is) to me what no one else has ever been nor probably ever will be. And simply because we're both women, far too many people diminish that relationship with the word "friend."
Three times I interacted that woman, and three times she infuriated me. I did tell the social worker about the encounters, especially the final homophobic one, and she was concerned and said she'd talk with staff. I have no idea whether it made any difference. One of the benefits of living in 2012, though, is that I'm unlikely ever to cross paths with her any time soon.
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