One of the precepts we learn during our training to act from while at the bedside is the phrase, “Don’t Wait”. As you can imagine, when it comes to death & dying, the phrase “Don’t Wait” can have many meanings. I wanted to share with you today how “Don’t Wait” magically appeared in the final weeks with my uncle, Roy.
When Uncle Roy arrived in the ICU at Kaiser Oakland, he was prepared. Not in the sense that he knew he would end up there, but in the sense that he and my aunt Kit had their things in order. He had his advance directive, he knew – and spoke openly about – his desire to not fight nature’s course when it came to his death, and all the necessary papers regarding life & death had been signed and dated.
This happens in many ICUs across this land, but I’m not sure Roy, or any of us, knew that myriad shades of gray come to us when a life is on the line. Questions regarding the possibilities of necessary procedures to sustain his life flooded his room: intubation, shocking the heart back in the case of another heart attack, whether to take certain medications on top of other medications to treat ongoing disease …these were the questions that hit Roy and Kit within the space of moments, hours, and days. These questions hadn’t been check boxes on the paperwork they had already done together.
I’ll note that the ICU is not a restful place. In fact, it’s the antitheses of a place of healing. That isn’t to say that incredible work is not done in the ICU—it is—and among the nurses and doctors that helped Roy during that time their care was superb. But when faced with the complexities of one’s life in a moment, with the beeps and pokes and prods—often at all hours of the night—made it a challenging place to hold a clear mind to make some of life’s most contemplative decisions.
Yet Uncle Roy faced these challenges each time they arrived.
One afternoon while I was visiting,
the doctors came in to go over this “checklist” - if you will – of the gray
areas. To clarify the treatments that Roy was willing—or not willing—to do.
At one point Roy turned to Kit, then to me, and he said, “What do you think I should do?”
Here was a man who followed his convictions on how he wanted to play out his life, yet he was concerned for his loved ones if he made the choice to go home to hospice. He had worked hard, had earned himself a beautiful life with Kit, and was grateful for all that he had accomplished for himself and for those who had shared his life with him.
And I’m certain this was a difficult moment for Kit. In fact, just by being in the room I knew that it was. But I appreciated Roy’s ability to face the questions. To ask his loved ones in the room for our opinions and not wait until an emergency might happen where his voice could not be heard.
And I felt that my job—as a hospice caregiver in that moment—was to hold two spaces: one for Uncle Roy and his desire to do what he felt was best for himself and for his life, and the other for Aunt Kit and her desire to keep her husband with her a bit longer. Luckily, mutual respect was a precept in their marriage and so the decision was eventually made to respect Roy’s wishes to leave the ICU and rest in the comfort of their home. Roy didn’t wait—he knew what he wanted—and he moved through this process with great care and compassion for both himself and for Kit.
He moved back to their home to Courageous Court.
The last night I had with Roy was on a Thursday night, two nights before he passed. I sat eating soup at his bedside and thought some more about “Don’t Wait”. My husband, Wolf, and I had to fly out the next morning for the memorial service of the unfortunate death the week before of my brother-in-law.
I told Uncle Roy simply that we had to leave the next morning to see my family for Thanksgiving; I didn’t bother him with the details. He held my hand on his right, and the hand of his son, Sean’s, on his left. We watched basketball and Wolf asked Roy for future life advice. Every so often I would say to him, “Uncle Roy, you seem tired, we should probably get going soon.” And he would squeeze my hand and say, “But Wolf hasn’t finished his soup yet.”
There he was again, considering the care for others.
I’ve seen this behavior many times in my hospice work, where patients don’t want anyone to leave, they have a lot of energy and chat for hours, but I only realized these details after the fact: that during that night, Uncle Roy was preparing for his next journey.
I knew I couldn’t wait. I knew it was possible that when I returned in ten days Uncle Roy may not be here. And I have a policy to squeeze every hospice patient I know before I leave them just in case. So on a commercial break during the basketball game with the TV on mute, I told Uncle Roy everything I needed to say. I told him how much I loved him, and that he and Kit had shown me what a marriage could actually be, and that he showed me how to choose a good man to be my husband. I had learned so many wonderful things from Roy and I told him I was grateful that he showed me the way. We cried, I kissed him, Wolf finished his soup – and on Roy’s urging a little dessert – and we left. Two days later Uncle Roy passed away in the arms of the woman who helped co-create his beautiful life.
It sounds like a simple story; it wasn’t. There were home health aides to navigate and moments of grasping and letting go. But what struck me about this beautiful life – and death – is that Roy – and Kit – met it head on. They had signed everything that needed to be signed – they had said everything that needed to be said – and thankfully, they could then put aside the “what ifs”, and the “I should haves”, that many people grieve long after those they love have passed.
Kit mailed me an article that San Francisco Chronicle columnist, John Carroll, wrote back in 2007. What fascinated me was that I received it in the mail just one day before Uncle Roy went into the ICU. This last part of the column sounds like John Carroll’s version of “Don’t Wait”. He writes:
“But here’s what I’m thinking about: It’s not too late. Some people have died, but others live on. They are waiting for our phone calls. Maybe they don’t even understand that they’re waiting, but we know better. They will want to hear what we have to say. Even if they reject what we have to say, they will want to hear it. Because later on, they will remember the words, and meditate on them, and then maybe they’ll make their own phone calls, and the whole grace thing will go around the world again, chasing the demons.”