I’ve been thinking about this as well, and partly because I’ve been having a few heart-to-hearts with Craig’s Pathways nurse (PN). His nurse is practically the only person talking about C’s short and long-term prognosis (this goes back to the whole idea of wanting to be pleasantly surprised rather than have the rug pulled out). It’s a bit of an awkward situation, since Craig hasn’t really asked (nor has he talked about) his prognosis. Though I’m speaking with PN, I feel as though it’s not my position to impose my own timeframe for discussing this. His doctor should really be spearheading these conversations, and should give C the option of knowing what lies ahead so that he can plan accordingly. However, Sorafenib is just getting started, so perhaps that sort of conversation is best left until after it’s had some time to work.
Anyway, so PN has been briefing me on what to expect, and what we should have in order in terms of durable powers, etc. Craig and I have been working on his ‘Five Wishes’ statement, which includes his durable power of attorney. I feel the need to preface this with the following: to draft and sign a Living Will does not mean C is nearing ‘the light’. It’s more of a preemptive measure to make sure we know his wishes should anything unfortunate happen. We should all consider these things regardless if we’re dealing with a serious illness. The Five Wishes list was written by the American Bar Association’s Commission on Law and Aging and the nation’s leading experts in end-of-life care. It starts with “There are many things in life that are out of our hands. This Five Wishes gives you a way to control something very important -- how you are treated if you get seriously ill.” This is something we should all take to heart. Still, I’d be remised if I didn’t acknowledge that Craig and mom are perhaps in a different situation.
Watching him fill it out, and say out loud his wishes was more than surreal. Just five months ago, C and I were climbing the sides of mountains and traveling around some the best parts of Southeast Asia. Now we’re talking about what he truly wants, during and after. We tried to crack jokes about his wishes. Some of the ‘wishes’ that were listed were just off-the-wall bizarre, like ‘I wish to be massaged with warm oils as often as I can be’ and ‘I wish to be cared for with kindness and cheerfulness, and not sadness’. On the section that says ‘I wish for my family to read my favorite limerick’, he said, yes, this one: ‘There once was a man from Nantucket, who kept all of his cash in a bucket’. It's hard to believe that somewhere, some committee decided that these were the best wishes. “Yeah, keep the one on oil, I like that one... and the one on limericks, that sounds pretty good.” I’d love to see the loser’s list. Still, despite laughing, there was a feeling that, by doing this, it made it all the more real. Like we were acknowledging the possibility…and that was tough.
The Five Wishes indicates to what extent we are to ‘work’ for his ‘survival’. In other words, how far he’d like us to go, should anything happen. Through our discussions, I now have a clear understanding of what he’d like. We went through his wishes with Dr. F today, and left a copy with him for safe keeping, so that now everyone’s on the same page. I suppose knowing is part of our contingency plan. My lifeline is C, Dr. F, and Pathways, though I understand E’s point about needing more training for more emergent situations. PN mentioned that if we were to get to 'that' stage with C or mom, the recovery would only be temporary. I’m sure there will come a time when their contingency plans will need to be redrafted, according to their wants and needs. The best we can do is to make sure that their wishes are carried out and that they’re comfortable, if (and when) that time comes.
I realize that writing in such a frank tone may be disconcerting, but I see it more as scenario building so that we’re not surprised when the time comes. This is our life, and these are real scenarios. I wouldn’t want denial or ineptitude to come in the way of their care. They have enough to handle; they shouldn’t have to worry about us. --J
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