I woke up a little while ago and even before opening my eyes, could tell that I was feeling much better. It is so frustrating that I have these awful days, especially yesterday when we had such nice plans for the day. But I guess I should be grateful that it was just the one day.
A comment a reader posted on the last entry (to which I wrote a short comment as well), makes me think about all the ways I have benefited by being in hospice care all this time. The biggest thing is that, rather than cycling between the hospital and home, I am at home surrounded by support, and far more comfortable than I could ever be in the hospital (which is definitely not set up for the comfort of sick people!). The reason why, I think, people are surprised that hospice patients can get outside, and even travel, is because most hospice patients enter in the very final stages of dying. I think there are a lot of reasons for this, mostly centered around the idea of death as the last taboo. No one wants to mention death when talking with, or about, a very sick person--it is the proverbial elephant in the room. And most people's image of hospice is "that place you go to die," when in fact it is so much more than that. So a lot of people are subjected to a lot of unnecessary and expensive treatment that can't help, and can often make the person feel worse, because any mention of "dying" or "hospice" is seen as "giving up." Yet a hundred years ago most people did die at home, with their families around them--this was the norm. Modern medicine has achieved a lot of great things, but it has also medicalized natural processes, like childbirth and dying. Now most people die in hospitals, although studies show a majority of people want to die at home. But because of the taboo, and everyone being careful not to talk about the things that so much need to be talked about, people die alone and isolated and surrounded by machines that beep and buzz--not exactly a peaceful way to die.
My dad always said that he wanted to die by "just going to sleep and not waking up," and hospice made that possible for him. I want the same thing for myself. When I first entered hospice my wish was to live till spring, and now spring and summer are past and I'm still here. I'm ready to die in my mind, but my body just isn't going along.