Today we woke up refreshed after 12 full hours of sleep. Sarah James suggested that maybe it was a good day to get out of bed and into the wheelchair, which was a great idea! We sat by the front door to eat breakfast and watch the snow fall–it’s been a week since we came home and started hospice care, and things are finally starting to feel a bit more even. I started a calendar to keep track of each day’s ups and downs–we’ll add to it as we go.
We’ve been talking a lot about the future. Yesterday a chaplain from the hospice came by and sat with my Dad and me for a bit. This thing we are doing–not seeking further treatment but instead focusing on palliative care–is messy. It goes against what we’ve been taught our whole lives: when you are sick, you have to do things to start or speed the healing process. But when you know that the job is too big, that treatment will only cause pain and discomfort and most likely will not succeed, this is a path to choose.
There are all kinds of ideas about how this will progress. Certain sets of symptoms mean certain things (but are not completely certain): weeks, days, hours left. The truth is that we have no idea when that moment will come–none of us do. Cynthia has been struggling lately with what most of us will face at some point in our future: the knowledge that that moment will probably be sooner than later. In true CT fashion, she is on the case. She has spoken often about being ready, and–not one to do things by halves–is a bit impatient to get on with it. There’s a box to be checked, a task to be completed, and it doesn’t seem to make sense that there’s really nothing to do but wait. Chaplain Lovelace talked about finding meaning in these days, so that’s next on our to-do list. We want to be blessed by each extra day, and not spend too much time worrying about the why? of it all.