Respite

Definition: A short period of rest or relief from something difficult or unpleasant.

Andy is now in a respite house, which is a sanitized way of saying he is on hospice.

I’m not sure who they are fooling with this “respite” business. Definitely not my 13 year old sons.

The doctors and nurses and social workers and everyone here are lovely and they talk about how they will keep Andy comfortable and calm him down when he’s agitated, which means they are trying to keep him out of pain while he dies.

The pain is under control. Yesterday he had some agitation and still wanted to get out of bed and walk, even though he cannot stand on his own.

Today Andy has been sleeping more than usual, and I imagine he will continue to sleep more than usual in the coming days. His skin is warm, as if he has a full body fever. His breathing his heavy; I know it will become shallow at the end. He is so, so thin – from the radiation treatment and his inability to eat solid foods afterwards, from the cancer stealing his calories, from the fact that he is barely ingesting anything except water, despite all efforts to get him to take something.

Yesterday’s visitors were an eclectic bunch. My friend Abby arrived first with a much-needed latte for me. Jake arrived next, which shows how much he loves Andy because he is not a night or even early afternoon person. And then, the rest arrived around the same time: Alison, Andy’s boarding school girlfriend and long time friend in all the years since;  Debby, Andy’s older (but not oldest) sister who drove in from Maine; and Bob Merlis and his son who name I have already forgotten (it’s not that he was forgettable, it’s that I have a few other things on my mind.

They talked to Andy somewhat but he wasn’t super-responsive much of the time – but he did have moments of lucidity, sometimes in the middle of explaining something that didn’t make sense. His speech was slurred and hard to understand most of the time, and he kept saying “gimme,” or “gimme gimme” to me. And so I played “Gimme Gimme Gimme” by Abba. After a couple of stanzas I pulled him over and asked if that’s what I wanted . He didn’t answer but I played the song and I assume he was happy to hear it.

He is not very responsive so far today, and he cannot really talk. I hope he will perk up later but at this point I don’t know.

I am stunned that he has deteriorated so quickly.

I have a morbid to-do list today on top of this, starting with calling funeral homes; and I also need to fill out FMLA paperwork because it is clear I cannot go back to work right now.

I try not to leave here – it makes me anxious when I’m away so I’ve been sleeping at the hospice and haven’t left the premises since we got here. Abby is only a mile away so I might go there for a shower. (I think the last one I had was on Friday if I remember correctly.)

Both boys have therapy appointments today – at the same time in different locations – so I will leave to take Charlie to his appointment, while Violet will take Jackson.

I don’t think he has much time left. Yesterday the doctor said maybe a week. It’s unimaginable.