Today I went to a talk called, Planning End-of-life Care, given by Dr. Ira Byock, the author of Dying Well and The Best Care Possible. Dr. Byock is, among other things, the Director of Palliative Medicine at Dartmouth–Hitchcock Medical Center. He is a very polished, engaging speaker; authoritative, charming, and occasionally amusing. I picked up several one-liners that I hope I’ll remember when next I am in need of a bon mot at a cocktail party, but on the whole, I was disappointed.
My father is not aging well. No one has told us that he is dying; he could well live many more years, but how is one to know? While he has good days and bad days, the bad days are getting so much worse that the good days don’t have to be that good to qualify! He is very weak, his voice is soft, and he spends most of his time sitting with his eyes closed even if he is not actually sleeping. It is difficult not to interpret his condition as the beginning of the end. I was drawn to this talk, billed as “A Palliative Care & Advance Care Planning Public Forum,” seeking enlightenment about what’s down the road, even as we continue plan for his long term care.
I interpreted the phrase “Advance Care Planning” to mean that one could plan for the necessary care in advance. That was a mistake, because aside from hearing platitudes like, “Care involves physical, emotional, social and spiritual aspects,” I didn’t learn anything particularly actionable. I was hoping for answers to questions like, when do you give up and move your father to a nursing home; is it practical to teach home health aides how to use a hoyer lift; where do you get a hoyer lift anyway; and if the patient can’t walk does that necessarily mean they need to be confined to bed?
I did perk up when Dr. Byock said that for palliative care at his hospital, Dartmouth-Hitchcock, “You don’t have to be dying; you have to be mortal.” Hmm. Well, Dad’s mortal. If that’s the criteria, shouldn’t there be some palliative care group that we can call who will come in and show us how to provide him with a better quality of life while he’s alive? I’m sure that all the nurses in the audience who were collecting CEU for attending found the talk worthwhile. I could have stayed in bed.
Taking care of an elder at home can be a labor of love, or an act of desperation, or a little of both. Every day is a new adventure. Two bad days in a row are cause for grave concern. Two good days in a row are proof that we are worrying unnecessarily. Do you need more than that to understand how crazy making it can be? And if all the caretakers end up crazy, who is left to help my dad?
Please believe me when I say I’m not trying to hustle my dad along. But quick, unexpected deaths that result from a heart attack, an accident, or an “Act of God” (to quote insurance companies) have got to be easier than watching a slow decline. As Byock said, “Death is a natural disaster that awaits us all.” We can rail against it all we want, but, “We’re going to die. Let’s get over it!” I’m not ready to get over it yet, but that doesn’t mean I won’t quote him over drinks one night soon.
Everywhere I Go 