Elderly care & when to say enough
Heart breaking story of one man's mom with dementia & how things happened so fast to save her life; even though she did not want to end up like this & had the proper paperwork. Heart breaking when the mom was pleading not to do the initial surgery.
A Life Worth Ending Click on print at the bottom of page 1 to read the whole thing on one page.
Here are a few parts-
When my mother’s diaper is changed she makes noises of harrowing despair�"for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: “It’s a violation. It’s a violation. It’s a violation.”
Everybody would manage his or her parent’s decline differently. Nobody is proud of himself. We all mess it up. This is partly because there is no good outcome. And it is partly because modern medicine is a random process without a real point of view and without anyone ultimately being in charge. The buck is relentlessly passed. Down this rabbit hole, we all become ineffective and pitiful.
My mother’s cardiologist, Dr. Barbara Lipton, a peppy younger woman who, annoyingly, called my mom “Mom,” had been for many years monitoring her for a condition called aortic stenosis�"a narrowing of the aortic valve. The advice was do nothing until something had to be done. If it ever had to be done.
This was good advice insofar as she had lived with this condition uneventfully for fifteen years. But now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What’s to lose? That was the sudden reasoning and scenario.
My siblings and I must take the blame here. It did not once occur to us to say: “You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?”
This is not quite true: My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist�"sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen�"but of course who listens to a woman who scribbles such notes?
The truth is you’re so relieved that someone else has a plan, and that the professionals with the plan seem matter-of-fact and unconcerned, that you disregard even obvious fallacies of logic: that the choice is between life as it was before the operation and death, instead of between life after the operation and death.
Here’s what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother’s “quality-of-life baseline”: “I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia.”
You fully informed my demented mom?
The operation absolutely repaired my mother’s heart�"“She can live for years,” according to the surgeon (who we were never to see again)�"but left us longing for her level of muddle before the valve job. Where before she had been gently sinking, now we were in free fall.
She was reduced to a terrified creature�"losing language skills by the minute. “She certainly appears agitated,” the psychiatrist sent to administer anti-psychotic drugs told me, “and so do you.”
Six weeks and something like $250,000 in hospital bills later (paid by Medicare�"or, that is, by you), she was returned, a shadow being, to 86th Street and her assisted-living apartment.
Unmoored in time, she began to wander the halls and was returned on regular occasions to the emergency room: Each return, each ambulance, each set of restraints, each catheter, dealt her another psychic blow.