Four years ago today my mother died.   She had been in a deep sleep at the Hospice by the Sea (miles from the sea, but a nice place nonetheless) for almost 24 hours, sleeping through her 82^nd birthday.  She eventually breathed her last and was gone.

Last night I spoke to an old friend whose mother, at 90, has been suffering from Parkinson’s Disease for many years.  She long ago lost the ability to move without pain and has been bed-ridden for the last few years.  In recent months she has virtually lost the ability to speak.  When she could still speak she would frequently tell her daughter that she wanted to die.   Of course, dying is not as easy as merely wanting to die.

“She makes her wishes pretty clear though,” my friend complained, after confirming that her mother is silent most of the time, except when crying out in pain.  It bothers her, the way her mother clenches her teeth against food and water, for example.

My friend’s sister is a doctor, she arranged for intravenous hydration and nutrition for the dying woman, as well as blood thinners and other medications to prolong the dying woman’s life.   The bags of nutrition cost $100 a day.   There has been trouble getting people to keep the port clean, very hard to find skilled nursing people who will also stay for a 12 hour shift, and overnight.  Unless one has unlimited funds, of course, which my friend and her family don’t.  So the two sisters perform most of the medical procedures.

I spent some time listening to my friend’s intense frustration with Hospice, which was reluctantly invited into the picture last week.   The social worker and nurses, as described, sound like a bunch of insensitive bureaucrat assholes.  On the other hand, they are dealing with two adults who will not honor their mother’s expressed wishes and are doing everything possible to keep her alive as long as possible.

“My nephew’s graduation is June 4,” my friend tells me wearily, and that’s one reason they want their mother to live a few weeks longer.  Not that she will be at the graduation, but it would be very inconvenient for everybody to have a funeral in the short time between now and the graduation.

On the other hand, two weeks is a lifetime of misery for a woman in chronic pain whose daughters are spending thousands of dollars to make sure she lives until at least June 5^th.

“She’s so angry,” observed my friend.

I told her the story Mickey Rourke told to James Lipton.  He’d been very protective of his little brother for the kids’ entire life.  The younger brother had some deadly disease and clung to life for a long time after he should have been dead.   Rourke sat by his bed every day.  The hospice nurse called him into the kitchen.

“And I knew what she was gonna say.  She told me my brother had lived months longer than anyone she’d ever cared for with his disease and told me he was clinging to life because I wouldn’t let him go.  She said I had to tell him it was OK to go.”

“Jesus,” said Lipton, “she said that to you?”

“Yeah, so I went in and said ‘it’s OK, I love you and you can go.’”

“How long did it take him to die after that?” Lipton asked.

“About 20 seconds,” said Rourke.

She was impressed by this story.  It is an impressive story.   But she is not ready to let her mother go.

I told her the story from the beginning of Sherwin Nuland’s excellent How We Die.  I admitted to her that I’d never read much of the highly lauded book, but told her about the unforgettable opening chapter.   

Nuland, a resident, emerges from a hospital room drenched in sweat and close to hyperventilating.   An older doctor calms him and asks what happened.  Nuland described a terminally ill patient, in his nineties, who went into cardiac arrest while Nuland was making his rounds.  He’d spent twenty minutes frantically performing every heroic measure possible to bring the man back from death, but had been unsuccessful.

The older doctor reminded him that the patient was in his nineties, waiting to die from a wasting disease.   He asked Nuland what kind of favor he would have done the old man by reviving him to live a few more hours or days when his wait to die was now over.

My friend was impressed by this story too.   But she is still not ready to let her mother go.

I told her other stories, about my father’s death, and my mother’s.  About how hard it is to let someone you love go.   I told her that as they approach their deaths their final autonomy is all they have left, that it must be about their wishes, and not our wishes for them.  And how approaching death from a terminal disease often follows a pattern.  The person begins withdrawing from the world and eventually loses the desire to eat or drink and just wants to be done.

“If you expressed a wish not to eat and drink, which is one of the final signs that a person is ready to die, and you were hydrated and given nutrition against you will, you wouldn’t like it,” I pointed out.

“No,” my friend said, “I wouldn’t.”

We spoke a little longer and in the end, before wishing her strength and urging her again to get rid of the Hospice if they didn’t quickly shape up, I stated the obvious.  “You and your sister are not ready to let your mother go.”  She agreed.  I wished her a good night’s sleep and told her we’d talk soon.   She sounded grateful for the conversation in an otherwise terrifying void.

But I’m sure another box of nutrition and hydration supplies is being ordered today, as I reflect on the relentless sorrows of this world.