And yes, that IS the question.
For several weeks now my brother, sister-in-law, friends and I have been discussing what we would do if presented with a prognosis as grim as my stepmother's. Of course, none of us really know. What, in those likely final months, becomes most precious? When life is stripped to its barest, what must we have?
My stepmother, only a few years into what has been a wonderful marriage, is determined not to leave this world. If her life is telescoped into a couch, a living room, and emergence into the out-of-doors only for the purpose of medical care, she's fine with it as long as it includes her husband and the hope, however faint, that her body will someday be again capable of more than shuffling a few feet with assistance.
My brother and I, passionate excavators of information, think we would want much more clarity about the future before we would make the choices that she has. We both think that we would be of a mind to spend a week "putting our affairs in order," as they say, and then to pull our kids out of school and head to the beach for as long as we were physically able to walk to the edge of the ocean. (I've tried to slip a trip to the Grand Canyon into my plan, since I've never been there. Actually, I have a lengthy list of places to which I'd like to return, and others I'd like to see for the first time, but I'm presuming a very short time frame here.)
Of course, that clarity we seek is absent. Would you get a few weeks of relatively pain-free movement and energy? Or would those be gone in a matter of days, absent chemo and radiation and surgery whatever else doctors might have to offer? If you accepted their invitation into the world of high-tech oncology treatment, would you be dooming yourself to a few more months of a dramatically limited capacity for even staying awake? Could you avoid the pain long enough to have the conversations that you wanted to with your family and friends? Could you maybe make the cancer go away, if only for awhile? Would it be enough?
As I wrote to friends some weeks ago about these impossible questions:
One choice: Try everything the doctors have to offer. It's an exhausting and debilitating process, requiring that all mental and emotional energy be directed to the hope of recovery. It gives you little time, assuming you are seldom awake, to think or talk about death. You can't connect with hospice because you aren't eligible as long as you are trying extraordinary treatment measures, so you are pretty much on your own with your fears, concerns and wishes about the end of life, and taking a risk that by the time you are ready to accept what is coming, you may be too disoriented to address the things you want to. And your caregivers are stressed beyond imagining.
Another choice: Forget the medical care and focus on a good death. The obvious downside: you might be foregoing a genuine chance for recovery and you will never know. The upside: you can get hospice care, make the plans you want to, say the things you want to say, and hopefully reach some peace about the end we all must face one day or another. Life may be shorter by months or even a couple of years, but perhaps you get a few weeks of energy for things that you can't manage when you are doing chemo and radiation. From the point of view of the caregiver, I have been told that there is a lot of peace to be had in knowing that the dying person is at peace about her decisions.
Having lost a mother, brother, stepmother, and aunt to sudden and completely unexpected deaths, I can see great potential in the gift of knowing the end is near. But seeing how happy my father and his wife have been, I can see why they don't want to concede defeat.
Of course, to do otherwise, you would have to be ready to see yourself as embracing the next step rather than conceding defeat.
I don't know what I would do. Last night, I was sure about the abandon-the-docs-head-for-the-beach approach. Tonight, I think I would not want to miss one possible last moment with my beautiful children.
Somehow, you have to do it simultaneously. You have to fight to live and you have to fight to move on.
When The Sun Has Gone Down
6 comments:
Yes, a very hard decision indeed. So hard to let go, but also hard to keep hanging on. DH has co-workers who are each taking very different approaches. One has decided to get all the care he possibly can, chemo, radiation, operations, etc. He is not looking well and his prognosis is not good. The other has changed her diet, taken a few vacations, just shortened her work hours, is putting her affairs in order but is not getting treatments. She looks and seems very healthy still, also much happier. Keeping you all in my thoughts still.
I think you can have in mind what you would like to do, but you will never know until the time comes. You can never predict what the actual circumstances will be. My dad had surgery...neither chemo nor radiation were options. But still, four months after the surgery he was gone. His symptoms were misdiagnosed for a year before they found the cancer...maybe that was a gift.
Personally, I know this is not a question I can ponder in hypotheticals..."what if?" I don't know if I'm too superstitious to connect myself to a fatal disease even theoretically, or if it's the fact that the thought of dying still scares the bejesus out of me. Lisa :-]
I'd probably fight death tooth and nail if I thought I had any chance at all. Giving up might be more peaceful for some, but not for me. Your step-mother sounds the same. If she's not ready to give up, no one else should either.
This is really heart breaking. I can barely stand to think about it. Pamela
what an eloquent entry. judi
Lots to think about and questions to which there really aren't any answers - every choice comes with a number of what-ifs. Your stepmother and family are in my thoughts and prayers.
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