It is Tuesday. I am in the kitchen of our flat with my laptop. The washing machine has a few minutes to go. Life goes on. A few miles down the road KS is plugged into a frame with pumps, tubes, monitors. This is exactly what he never wanted. But who does? When he was still in palliative care, he would not have been taken to the intensive care. But here he is. And he said last week he felt his body is done. It has reached its max. It cannot cope.
I had hoped that by now he would have come out of the hypo delirium he is in. It is probably down to the kidneys not working at full capacity. But the relationship between these markers and the delirium is by no means simple. When I arrived by his side yesterday, it was clear he was a bit less present than he had been the day before. I was upset. I had hoped for improvement. I cried. A nurse offered me tissues. I refused. She said I had to be strong. I said I was strong and that crying did not make me less strong. I even told her KS tells me it is beautiful when I cry. It shows what is in your heart, he said. The nurse laughed and said, oh, is that what it is. I had to calm down after all of that. Nobody can help it. In some way she is right of course. But this interaction was not what I needed right there and then. Of course I often get things I don’t need and don’t get another heap of things that I do need.
I am trying to be faithful to KS’s values and beliefs, as we negotiate the untrodden territory of him not being able to voice his wishes. I am attempting not to second-guess myself too much. I am touching in with my feet to ground me. I am calling on my strength to support me, to do what needs to get done. To still look after myself in the midst of it all. To do what is right. But I also cry. And why do people have to rush towards me with tissues? I have a serviceable sleeve. Sometimes you even have to stop crying so people can locate a tissue and then wait for them to deliver it. I tend to feel the tissue is to make me stop crying. Because it is difficult to be with grief, with sadness, with heartbreak. But when I cry, my body releases tension. What would be helpful is to just kindly let me be, witness it, bear it. There will be more tears. We can count on it. I might even get tissues.
