The importance of advocacy

Many times, I've second-guessed the decisions I made on Sandy's behalf at the hospital, and some at Bailey Boushay. I've revisited every aspect of her illness and medical care from 2006 on to see where I might have failed her. But on this date last year, I know my advocacy made a positive difference. That day bred powerful, painful memories, and it's a relief to feel pride as well as despair.

Laura was amazing. Aside from it being good for
her and Sandy to have more time together, she
filled in the gaps that I couldn't handle; took on
roles as cook, laundress, comforter, sentry, social
secretary; and generally made everything easier.

She'd slept little overnight, there in the living room in her hospital bed. I was supposed to be sleeping on the sofa a few feet away, but I couldn't actually get to sleep before she'd call for me again or she'd just be so miserable I'd have to get up to see what I could do. She was vomiting frequently, and in pain, and I can't remember whether it was that night or the night before that I was on the phone with hospice staff in the middle of the night, seeking guidance. It was a long night. Laura appeared at some point, pointed me toward the sofa, and offered to see to Sandy's needs. I slipped into sleep with sweet relief.

A couple of hours later, we'd begun to worry about her sodium levels. We managed to get some broth into her, but it was becoming harder and harder to rouse her. And then impossible. Because the hospice nurse had told me the day before that we couldn't use an IV, our options seemed very limited. Close friends arrived and helped us attempt to wake Sandy, but we had no luck. We'd all started to assume this was it, this would be goodbye, until I talked with the hospice nurse who had been assigned to us that day. She was amazing. She agreed this looked like a sodium drop, and that we should get Sandy an IV. Due to a bit of confusion that I unwittingly introduced (describing her need for a sodium IV instead of just saline), we weren't sure whether she'd need to go to the ER or not. I knew she didn't want to go back to the ER or the hospital at all. I was pretty sure she wouldn't be wild about going anywhere, frankly, but the hospice we'd long supported seemed like a workable option.

In order to avoid the ER, the nurse worked out a deal for us to go to urgent care for initial treatment and then transfer to Bailey Boushay. Perfect. It was so nice to have an ally who could work through those things for us.

It was at urgent care that I advocated well on Sandy's behalf. By the time we got there, Sandy was in really bad shape. Her breathing changed shortly after we arrived, with little bubbles coming out her mouth. The doctor said it looked like end-of-life breathing, indicating respiratory distress. But I'd seen her look like that before — after her seizures in 2004. I asked them to test her oxygen saturation rate. It was 97%, hardly indicative of respiratory distress.

She had a fever. They were certain she had an infection. The doctor said it as if that sealed the deal; we were done here. I pushed. I said, "Let's find out what it is. If it's easy to treat, let's treat it." They agreed, and the staff drew her blood to check her sodium levels, took a urine sample (which looked pretty suspicious and gave us hope it was a UTI), and did a few other tests to identify possible sites of infection.

Those two things — asking for the oxygen saturation rate and pushing to identify the source of infection — bought her another ten days to say goodbye to the people she loved, come to terms with the fact that she was dying, and have a much less traumatic death. It also bought me precious minutes and memories.

It's possible the staff would have moved forward with treatment somehow, but they didn't even take her blood until I pushed back on the infection. The things I said seem so obvious now, but at the time, I was struggling to figure out what Sandy would want. Would she just want me to let her go? Was it time? Was this what it meant to stop fighting? Laura and I had been with her through an excruciating night, but we'd also witnessed her energy and ambition the evening before. I was certain that she still had things to do, and that she wouldn't want to go that way — suffering and unable to understand what was going on around her, taken down by something treatable.

At Bailey Boushay, after she'd regained lucidity, I told her what had happened and the decisions I'd made. She was grateful, happy to be alive. I told her how important it was to me that we not go back to the hospital, that I knew how much she hated it there. She told me that even if she'd awakened in the ICU, she'd have forgiven me. That was a remarkable thing, really, given how many times in her life she'd been suicidal, how often she'd made me promise to kill her if she couldn't understand what was going on around her and didn't know whether she was happy, and how obsessed she was with getting the Death with Dignity pills. That sentence told me that she understood how terribly hard it was for me to let her go, and also that she wanted as many quality moments of life as she could get.

July 8, 2011, was a very hard day, and it just went on and on, one challenge after another. But it ended on a high note for me. Hours after they'd begun a saline drip and the antibiotics for her UTI, after we'd settled in at Bailey Boushay with her still unaware of what was happening around her and nonresponsive, I spoke to her, as I did periodically, and I heard her say, "Hey."

"Hey" was what she said when I'd crawl back into bed after using the bathroom in the middle of the night. It's what she'd say when I walked into a room she was already in. And it was what she'd said, initially, each time she came back from a nonresponsive state. I slept awkwardly in a reclining chair near her bed, knowing that she was on her way back to me.