The last thing to die is hope

This time last year we buried our mother.

Mom died in her own bed, in my arms, with our father, her husband, beside her.  All her children were present or nearby, and within an hour we were all together in bereavement.

It is bizarrely a privilege to be present at the end of a human life, especially the life of someone close.

Before she died, some of our family were under immense pressure to move Mom out of her house in Ra’anana and put her into hospital.  Their friends felt we were neglecting her by having her at home.  We were giving up on her.  Surely the well-equipped wards of Tel Hashomer or Shaarei Zedek might have been able to work some technologically-enhanced wizardry to keep her body and soul together whatever the cancer could do.

We were wracked with guilt:  how could we keep her at home when she should be in a modern hospital under bright lights, stuck full of tubes, with one of those machines that beeps reassuringly with every heartbeat?  Surely we owed her the luxury of massive medical intervention and its promise of life indefinitely prolonged no matter the pain and indignity.

Under all this pressure my father asked whether we should move a hospital bed into the house.  It seemed reasonable:  somebody who is very ill should be in a hospital bed.  Hospital beds are medical and therapeutic.  They have machines for sitting people up and laying them down.  Hospital beds have got to be better than an ordinary firm superking mattress.

Glyniss listened.  Glyniss was very good at listening.  She listened, and she gave us some options.  We could move a hospital bed into the house for Mom.  And she could sleep in it every night:  alone.  Without Dad.  During the day she could have it all to herself.  Without us.

My sisters and I had been sitting in bed with Mom for weeks.  We held her hand.  We mopped her brow.  We massaged her.  We cuddled her when she hurt.  We held her in our arms while we fed her.  We moved her up and down using pillows and cushions and sheets.  Her grandchildren sat beside her on that vast bed and chattered about school.  She never lacked for human contact in her waking hours; and at night she slept with her husband of 52 years beside her.

Glynnis made it a no-brainer.  Thank God for Glyniss.

The oncology people at Tel Hashomer had been too kind to say there was nothing they could do for her.  They gamely kept evaluating her for chemotherapy and treating her when they could.  They are dedicated healers, and it wasn’t for them to say they were giving up on Mrs Nusbacher.  My sisters and my father were practically groaning aloud with frustration at interventions and treatments missed.  Treating the untreatable was destroying their morale.  It was a senior ward sister who quietly put us in contact with Sabar.

Here in Great Britain there is a horror at the idea of private companies providing health care.  We fear rapacious American companies selling high-priced health care for easy cases while the National Health Service is crushed under the weight of hard cases.

The ward sister gave us a card for Sabar, a private firm which provides home hospice care under contract to Clalit Health, Israel’s largest health care provider.  Sabar sent Glyniss, a specialist palliative care nurse.

The switch from frustrated medicine to palliative care was a strong sea breeze through the house.  Glyniss turned it from a house full of people trying to cope with a grave illness into a family focussed on taking away Mom’s pain and giving her love and dignity.

Sabar sent a physician who prescribed powerful pain killers, who came whenever we asked, and who ordered whatever intervention we could think of.  Dad, who’s a physician, had a plan to treat her ascites and get her back onto chemotherapy.  Dr Tommy, the oncologist from Shaarei Zedek who had treated Mom’s early stages of cancer, came at the end of his work day, heard Dad’s plans and gave his input.

Dad hoped she could turn this corner and fight another round.  He said at the time that the last thing to die is hope.

Glynnis listened to all of this, and was unremittingly positive.

Each of my sisters and I had updates and ideas and suggestions and endless questions.  Four bright, educated women were watching their mother die, and Glyniss became our confessor, our therapist and our crisis manager.  For a period of four weeks last year Glyniss came very close to being a member of our family.

Why only close? Why don’t I do her the honour of saying she became another full family member? Because she came into our family with no ego.  Nothing was ever about her:  she was there for Mom.

Not that we didn’t want the best for Mom, but we were unconsciously selfish.  We wanted Mom to be alive and healthy and with us.  When Mom said, ‘I want to go’, we told her to stay with us.  We wanted her to stay with us.  We couldn’t imagine her not wanting to be our mother forever.

We all hoped Mom could recover from yet another bout of cancer and have another year or five with us.  We hoped she could enjoy one more bar mitzvah, one more trip to Venice, one more visit to the mall to shop for presents for her grandchildren, one more series of Sons of Anarchy.  We imposed our hopes on our Mom the way moms impose their hopes on their children.

Glyniss represented Mom.  When Mom said, ‘I want to go’, Glyniss listened to her.

A year ago I couldn’t write about this, but with just under three hundred sixty-five opportunities to sleep on it I realise what Glyniss did for us.  She listened to us, she listened to Mom; and she made sure that whatever we did was something that made her last days more comfortable, more dignified, and more intimately connected with the people she loved.

The 25th of June was Mom’s birthday, and also her wedding anniversary.  That was the day we buried her.  She had died in the evening, and as the kind police and ambulance staff were signing paperwork we realised that she had died and would be buried on the 17th of Tammuz.  Mom was a stickler for birthdays, and dying when she did ensured that whichever calendar we were using we would never forget her jahreszeit.

As we sat shiva we tried to thank Glyniss; and as we felt the acute pain of bereavement we tried to fathom how she could deliberately put herself into this position, hour after hour, day after day.  How could she survive the constant grim horror of inexorable untimely death by cancer?

She tried to explain it to us, but of course we couldn’t understand.

Now, a year later, I think I know.  She is there for the one person in the family who doesn’t grieve: the dying person.  She didn’t come with hope.  When the moment of death came and the rest of the family clutched each other and wept, Mom wasn’t weeping; and Glyniss was quietly satisfied.  Glyniss thrives on her job as a home hospice nurse because she is never bereaved.

Glyniss Katz and Sabar and Clalit and Tommy Tishler, and all the neighbours who came every day with food:  the corporations, and the community made Mom’s exit liveable for our family.  Far more important, they made Mom’s death loving, painless and dignified for her.

About the Author
Dr Lynette Nusbacher is a strategist and devil's advocate. She is Principal at Nusbacher & Associates, a strategy consultancy. She has been a senior national security official in the United Kingdom, was Senior Lecturer in War Studies at Royal Military Academy Sandhurst, and served as a military intelligence officer.