Sunday, January 5, 2014

Mild stroke led to mother's forced starvation

By Kate Kelly

I watched an old woman die of hunger and thirst.  She had Alzheimer's, this old woman, and was child-like, trusting, vulnerable, with a child's delight at treats of chocolate and ice cream, and a child's fear and frustration when tired or ill.
Kate Kelly with a
photo of her mother.

I watched her die for six days and nights.

I watched her suffer, and I listened to the medical practitioners, to a son who legally decided her fate, and to an eldest daughter who advised him and told me that the old woman, my mother, was "comfortable," except when she was "in distress," at which times the nurses medicated her to make her "comfortable" again.

I watched the old woman develop ulcerations inside her mouth as she became more and more dehydrated; the caregivers assured me these were not painful.

I listened to her breathing become more and more laboured, as her lungs became congested from the morphine administered every three to four hours, and later every hour.

That is what morphine does, you see.  It relieves pain, but its cumulative effect is that eventually it shuts down the respiratory system.

No one explained why the old woman was given morphine in the first place, since she was conscious and trying to speak.  It is normal that a mild stroke causes temporary inability to swallow, slurred speech, and a severe headache, but all of these are often reversed when the stroke victim is treated and the treatment includes nourishment and water.

The explanation for not giving nourishment and water - a feeding tube and IV (intravenous) - is that these were "extraordinary measures" for keeping someone alive.

I watched the old woman day and night for six days.  The first night, after the first shot of morphine, her mouth hung open and her tongue started to roll and flutter.  At the same time, her jaw trembled continuously.

This went on all night and into the early hours of the morning.  Her mouth never closed again, except to clamp tightly on wet cloths placed on her lips.  Her eyes were partially closed, but they moved back and forth, back and forth, becoming small slits after seven or eight hours, not closing fully until that long first night was over.

She opened her eyes only once after that, when the nurse was late with the morphine, on the third, or maybe the fourth, day.

The old woman started to moan.

Not moaning, said the nurses and the old woman's eldest daughter.  Just air escaping from the lungs.  Not moaning at all.

The old woman's eyes started to open, and the air escaping from the lungs sounded exactly like a moan of agony, as the old woman's face twisted in horrible contortions.  I screamed, "Her eyes are opening! Oh, God. Oh, God!"

Even as the morphine, quickly injected by a disconcerted nurse, caused the old woman's eyes to close and her face to relax, I doubted its efficacy.  I thought back to the night before, when I, in tears at the old woman's slow dying, had been confronted by a delegation of four of the nursing staff, each of them in turn trying to convince me that the old woman was not suffering in any way at all.  The morphine, they said, takes away all pain.

But, I answered them, she can feel: she's squeezing my hand, and if I try to take my hand out of hers, she squeezes tighter, and when I hold a little piece of gauze to her lips, she tries to suck the water out of it.  She's thirsty!  This is a horror; this is cruelty!

No, they said.  She's not thirsty.  It's just reflex.  But, I tell them, I watched her clamp her lips on the gauze so tightly that I had to pull to get it out of her mouth.

She reacts when you touch her feet, her legs, and her hair. If she can feel that she can feel thirst, I plead with them.

It's not the same, they tell me.  She's not in pain.

I look at her.  But what if you're wrong? I say.  What if you're wrong?

They stand there, saying nothing.  Then one looks at the old woman and says, we'd better turn her now.  She and another care worker go about the business of repositioning the old woman, to keep her “comfortable" and the other two leave.

The days and nights went in and out of focus.  I sat in a chair at the side of the old woman's bed, one hand grasped tightly by her hand.  I slept an hour or two, here and there, waking always with a start.

"I'm here," I murmured, so the old woman would know I was keeping the promise I made to her on the first night, after her son and eldest daughter left to get some food, drink, and rest.  I promised her then, "I will not leave here until you do.

The old woman was fading by the fourth day.  Her eldest daughter had been visiting for an hour or so each day, usually mid-morning.  This daughter, a former hospital worker, lightly stroked her mother's face and hair and timed the length of her mother's "breath apnea," the length of time her mother
stopped breathing.

She announced the number of seconds, and then counted the number of breaths between each stopped breath.  Seven breaths, she said, 11 breaths.

Sometimes she described the progress of her mother's death, She's probably down to about 60 pounds now, she pronounced.

Sometimes - I'm not sure when I noticed it first - the nurses asked us to leave while they attended to the old woman.  Other times they didn't.  Once, perhaps on the fourth day, I told them I didn't have to leave: I had watched them turn her, I had seen her tiny naked body as they gently washed her.  I didn't even flinch anymore when they injected the syringe of morphine.

We have to give her a suppository, they said.

A suppository?  Why?

For anxiety, they said.

Anxiety.  So that she would appear to die with dignity.  The morphine was no longer enough.  This courageous old woman, who could face, who had faced, unimaginable hardships with nothing but her faith and her dignity, she could teach you about dignity, I thought to myself.

On the fifth day the eldest daughter visited twice.  On her second visit, several staff members entered the room with her.   They were all talking loudly, about nothing in particular, except for one care worker, fond of the old woman, who walked over to the bed and called the old woman's name loudly enough to interrupt the others' light conversation.  She examined the old woman's hands, lifted the sheet covering her and looked at her legs and feet.  She called the old woman's name again, and the care worker's face showed alarm.

How long has it been? she asked.  She's not even mottling! (Mottling is the term given to describe the blackening of the feet and hands as the body, dehydrating, tries to preserve the vital organs by stopping the flow of blood to the limbs).

You know, continued the care worker, I don't think it's her time.  It's been, what, five days?  If she had been ready to go, she'd have gone in 24 hours.

The room went quiet.  The care worker and I looked at each other.  You're right, I said.  The eldest daughter and one of the nurses began to tell her she was wrong, and a nurse hustled her out of the room.

By the sixth night I was not sure I could go on.  I slept for an hour or so every four or five hours. I still sat in the chair by her bed, but now I slept with my head on bed, near her stomach.

The old woman's breathing was laboured, her will to live defying the system and the foolish young doctor who, on that first night, gave her 24 hours to live, as though he were God Himself.

My heart was breaking for her.  I could do nothing to save her, could do nothing but suffer with her.  I cried much of the time, but softly, so she would not know.  I didn't want to add to her agony.

I had been there six days.  She could no longer hold my hand, so I slipped my hand gently under hers.  I felt an anguish so profound that I began to wonder if I could survive it.

The old woman's breathing was suddenly no longer laboured.  Her breath eased from her, and her face - oh, her face had become the colour of pearls.

In a split second, the frown that had creased the line between her brows was smoothed away.  Her head rested gently to one side.  Two care workers entered the room.  I saw them in my peripheral vision, but I kept my gaze on the old woman.

We're just going to turn her, one of the workers said.

No, I said, my mother is dying.

One of them left to get a nurse, and then the old woman - my dear mother, my little, child-like, beautiful mother - died.

I put my arms round her, kissed her poor, closed eyes and her now relaxed mouth, and held her limp, tiny body, no more struggling for breath.

I watched an old woman die of hunger and thirst.  I watched her die for six days and nights.  I watched her suffer, and struggle, and hold onto life.

She had not often found life easy, but she had always found it worthwhile.  She was 94 years old.  She had been born and had lived all her life in Canada.  She had worked hard all her life, married, raised three children, voted, paid taxes, saved enough money to buy her own home, obeyed the laws, donated to charity, done volunteer work, paid her bills, and given much love and brought much joy to many, many people in her 94 years.

In return, in the spring of 2009, her son and her eldest daughter, with the permission and assistance of the law, because this old woman had had a mild stroke, refused her food and water.  She could not swallow, so she would have needed the food and water administered artificially.

And the youngest daughter could do nothing except watch her mother die slowly, and write this, in the hope that my mother's death, like her life, will have made a difference.

* * *

Kate Kelly is a member of the Board of Choice is an Illusion.  She is also a teacher, a jazz singer and a former newspaper reporter.  To read more about Kate, click here.