Tag Archives: dying

Palliative care for the living

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.

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Holding Silvan, a memoir

Memoirs aren’t easy to sell, unless your last name is Kardashian, or your nickname is Snooki. Even beating cancer (which sounds like a hell of a story to me, because who doesn’t like a tense medical drama with an upbeat ending) probably wouldn’t be a good enough hook to hang your memoir on these days, unless you’re The Nanny herself, Fran Drescher, author of Cancer Schmancer. However, buried in the glut of memoirs by celebrities that are full of TMI and low on substance, there are stories to be found, told by real people like you and me, that will resonate as only a tale of true life can. Holding Silvan, a brief life, by Monica Wesolowska, is one of those stories.

holding silvan cover

As you can tell by the title, this is not a happy book. It is the story of a couple who are told shortly after the birth of their first baby, Silvan, that he was born severely damaged and is unlikely to survive past a year. The outcome of the book is determined early when Monica and her husband decide that Silvan should be allowed to die. The heart of the story is the struggle to defend that decision, while learning how to cherish the time they have with their son.

Ms. Wesolowska’s writing is unsentimental, but the power of the emotions is inescapable. She writes of a hike she takes with her husband while Silvan is still in the hospital. “He is enduring his grief by keeping busy, by consulting outside doctors, dealing with insurance, filling the car with gas while I am left free to feel every ripple of emotion. The postpartum hormones coursing through me amplify my grief, make it come in waves that bowl me over. But I can’t stay like this all day. I can’t sustain this drama. The feeling is passing. The need to be prostrate is gone. There is nothing to do but go on.”

On the surface, Holding Silvan is a book for others who have experienced the loss of an infant. It is comforting to know that you are not alone in the world, that others truly understand your unique pain. But I’m certain that some who share that pain will read this book and rail against the couple for the choice that they made. The public debate over how to manage healthcare for those who cannot speak for themselves has been raging since before Karen Ann Quinlan was removed from life support in 1976. If you are the sort of person who believes in life at any cost, then this book is not for you. If, however, you understand that emotions are not black and white; that we all project our feelings onto others; that quality may trump quantity when it comes to the days of our lives, you should read this book.

The subject of Holding Silvan is an infant, but the message of the book applies to all. Life can be cruel, and tough choices need to be made, but our memories sustain us, and there really is nothing to do but go on.