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When is it a good time to think about dying?

Certainly not today for me. It’s been a bright sunny day, the first we’ve had in a while, with the temperatures hovering around freezing but not high enough to melt the snow still on the ground since Dec. 26. The snow still looks remarkably fresh in most areas, not that horrible dingy gray of late winter; so far, our weather has been pretty seasonal for the past month or so.

Not today, then, because the weather is so fine, and because school started up again, which means back to the routine for my daughter and my husband (who at least has the pleasure of brand new classes and students).

Not today, perhaps most importantly, because I had a good oncology report, my third one in a row! And because tomorrow I will be starting the local Y’s version of “Livestrong,” the (free) physical rehab program for cancer survivors, one more important step in my return to health.  

But maybe tomorrow, because I will call my oldest living relative, my father’s older brother, who is dying of leukemia.

We have adopted a saying around here that is surely not original to us, though I cannot credit a source: “All families are dysfunctional, though some are more dysfunctional than others.” I couldn’t begin to rank my family or its members on any scale of functionality, but let’s say I don’t exempt myself or my kin from that generalization. And frequently, I have found that it is in connection with death and/or dying that the difficulties and disunities manifest themselves most clearly.

My uncle is approaching his 97th birthday this spring, though the odds of him reaching it are vanishingly low. I do not have many details about his condition, since my brother holds the MPOA and is very chary about sharing information. But it is clear that my uncle is reaching the end of the line. He had a couple of transfusions within the past two weeks, and the positive effects he gained from them fell off quickly. Evidently the goal now is to get him home soon enough for him to know that he is there before he dies.

Now, it is not clear to me whether my uncle is fully aware of his limited time. Until very recently, he was completely capable and lucid, but I assume that his rapidly deteriorating condition also has an impact on his ability to understand what is happening to him. He doesn’t like his treatments, he doesn’t like not having them either. All he wants is to go home.

I last spent significant time with my uncle almost 4 years ago, right after his wife died. She was seven  years younger than he, and it shocked them both (or so I assume about her) that she went first, from a massive cerebral hemorrhage. In the days following her passing, my uncle was clearly in shock, but it also became clear to me that neither one of them had ever given any serious thought to the reality of their eventual separation. My uncle in fact said as much to me back then, that they expected to live forever.

The thing is, he was not speaking hyperbolically.

We here at the MNCC have discussed relatively often the odd blessing that it can be, to have to confront one’s mortality more deeply than we might have otherwise without this diagnosis. Most of the time, however, our discussions have focused on what we want to change (if anything) about the way we LIVE for however long we have.

I fear I may have buried my lede taking all this time for the set-up, so please bear with me for getting to it at last:  what I’d like us to consider tonight is what we want to happen with our dying.

It’s not a question I can answer easily. I have not immersed myself in the consolations of religion or of a belief system that provides both a ritual for death itself and for the survivors to mark the event. (This is not to say that I can’t and won’t, but that I haven’t yet, and so to claim to have any such template to aspire to follow until I do would be deceitful.)

My uncle’s imminent passing prompts this reflection partly (largely? primarily?) out of self-interest, but also because his approach offers an example of what I hope not to do. He, like the rest of my family on both sides, has preferred not to make decisions related to death and dying as long as they could possibly avoid them and beyond. My mother, who just turned 90, is another poster child for the “live forever” crowd. When I suggested to her, as gently as I could, that not to decide (about her own end-of-life preferences) was in fact to decide (because her default arrangement is not likely to produce her first choice of treatment), her response was that she’d rather not think about it.

I don’t know whether it’s a matter of generation or personality or something else, but I know I don’t want to go that way if I can possibly help it. Maybe it’s all my control issues coming out in the most dramatic way; maybe it’s rebellion against my elders’ preferred mode of dealing with unpleasant issues. But for me, it’s clearly time to take some steps, regardless of the weather or my stable health, to ensure that my dying bears some resemblance to my own wishes for it.

I have a few items of paperwork in place, mostly regarding my minor daughter’s care if she is indeed younger than 18 when I pass on. I need to address more of them soon, particularly because I feel no pressing urgency to take care of them right this minute. (The inimitable Noddy posted several important diaries on this topic; here’s one.) I need—want—to give more thought and breathing space to determining my own values and beliefs regarding this inevitable transition between life and death, and how I want to have my life remembered and celebrated once I am gone.

I am fortunate to have one striking example to use, though I could not follow it completely even if I wished to do so. My erstwhile father-in-law died almost twenty years ago from prostate cancer, which was diagnosed at Stage IV, already in his bones. His decline was relentless, and the 18 months between his diagnosis and death seemed terribly fast even though now I know it was a pretty good span for him to have had. But his death was by any measure quite remarkable. He sought it, I think, and timed it as well as he could; he was lucid (as much as heavy morphine would allow) until a few hours before he died; he had his closest family in the room with him (even though that’s not really what they all would have wanted themselves--that’s another story!) All things considered, he went out in an impressively peaceful and graceful way.

I’m not interested in having a requiem mass with five priests in attendance, as he did. I’m also delighted to have made it well past the 18-month mark myself, and I don’t have any indication that the next 18 months will be my last.

But while I am living my life differently now, I’m also interested in thinking about—preparing for—my death differently now, too.

What do you think a "good death" entails? Do you have any direct experiences from which to draw? Are there faith traditions that give you a framework with which to contemplate death? These are only a few of the questions that we could discuss here.

I’m deeply curious about what you all have to say about this particular topic, and I want to express my gratitude in advance for your contributions to this somber but essential subject.

Ooops! Forgot this text in my rush to publish:

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

Tue Jan 08, 2013 at 8:46 AM PT: I just received a phone call from my mother, with the news that my uncle died early this morning. He felt ill last night, with a fever; this morning, he told an attendant that he couldn't breathe and that his chest hurt. She left to get him some help, and when she returned, he was already gone.
My aunt (his sister), her son, and my brother arrived some time later, having stayed at his house last night. So in the end, my uncle did die alone.
Thank you all for your supportive comments for me, but thank you even more for the thoughtful and honest comments you made in response to the diary prompt. I appreciate you all more than I can say.

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