Wednesday, January 14, 2015

My mother died fom a mild stroke

By Kate Kelly

I watched an old woman die of hunger and thirst. She had Alzheimer's, this old woman, 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.
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. 


Anonymous said...
My mother in law died very similarly. She had Alzheimers and that's what's listed as the cause of death but you and I know better. As a result of that, I promised my mother that I would fight for her to receive IV fluids and nutrition should she become unable to eat and drink. She would not die of forced starvation.
Ann said...
I am so sorry. I hope that many lessons are learned from this. When life loses it value we will be in a very sorry state.
Anonymous said...
I once had to be at work as a patient died this way after his father convinced his mother that their son would not want to live as he was living. I was not "allowed" to be put in his "pod" when they started his "dying" process as I had objected to the whole thing. Though he could not respond to us verbally & we could discern no meaningful eye movement responses, he had a fairly normal sleep/wake cycle & he would look at us as we cared for him. He was a teenager at the time & had suffered a brain infection. He had recovered to the point that he could survive with food & water via g-tube, and breath on his own with a tracheostomy tube, but could not walk, talk or respond. When they decided to let him go by starvation. I had objected along with one other nurse. We were summarily removed from his care list. We were assured that he would at least be afforded fluids. That was on a Friday. I was off for the weekend. When I returned on Monday I found out that his fluids were stopped that Friday night. So he went for 3 days without fluids. His lips were parched and dry when I saw him next. It was horrible. He lived for 4 days. We had a meeting after his death with the "social worker" & the "doctor". We were assured that he had not been aware for months & "did not suffer". I asked him if he had ever been in that condition himself? He said "no". I replied with "well how do you know?" He didn't answer me.
octopusmom said...
Your story greatly distressed me. I am so sorry for you and for your mother. That you held her hand and let her know that you loved her was a blessing, not only for her but for the nursing staff who witnessed it. I know it must have taken a great toll on you, but I honor you for what you did. You are laying your treasures up in heaven.
Rob Jonquière said...
This story proves again that whenever, where ever and whatever sort of end-of-life decisions are made, too many are still resulting in ill-treatment through incompetence of the caregivers! It proves again that lack of transaparancy on any decision and lack of openess is at the basis of these incompetences: when something is a "taboo" caregivers don't talk but do.
I am real sorry to read about this dying of Kate Kelly's mother; I am NOT saying this is a clear case pro euthanasia. I am saying Kelly's mother has been given very bad, insufficient palliative care, where the caregivers used morphine in the wrong way (calculating on the double effect??), causing side effects which resulted in this unwanted outcome: a terrible death!
I am not a fervent supporter of VSED, certainly not in all cases. The person must to begin with have the serious wish him/herself knowing the consequences; (s)he must be nearly moribound, barely be eating and drinking already, before starting the process of VSED at all. And... most important: good professional and competent guidance with optimal palliative care should have been arranged and available day and night.
It is a pity that Alex is using this story as a proof for the dangerous developments in the end-of-life decisions (a n=1 study) and not as a signal that Palliative Care failed in this case and thus that also providers of Palliative Care need education and transparancy.
I know cases (more then one for that) of VSED with late Alzheimer's where the patient received professional Palliative Care with VSED and died quietly and humanely; in a country where through (or at least since) legalisation of euthanasia, Palliative Care has been developed to a very high ranking (both in availablity and in quality) in the world, and where thus all end-of-life decisions (from "let nature take its role" via "palliative care/sedation" to "euthanasia or physician assisted suicide") are mostly seen as an issue to be talked about when appropriate.
Alex Schadenberg said...
Rob Jonquire is the current leader of the World Federation of Right to Die Societies and the former leader of the Dutch Euthanasia Society.

Rob reduces the pain of Kate's mothers death to poor palliative care. He is only partly right.

The fact is that to kill someone, who is not otherwise dying by dehydration is euthanasia, does cause an horrific death and should be referred to as elder abuse.

To say that - if we only used the proper amount of morphine everything would be fine - negates the fact that this is not a good death because it requires large amounts of morphine to mask the pain.

This is totally different in a situation where someone is dying and is nearing death, whether it be through cancer or other causes that has led to organ failure.

In those circumstances the body is naturally shutting down and the body has stopped requiring or being able to circulate or absorb the hydration. In this circumstance the natural process of death requires, at some point, that fluids be withdrawn in order to prevent suffering.

Kate Kelly's mother had a mild stroke, she was not otherwise dying, she was not experiencing organ failure, but rather a decision was made, by others, that her life was not worth living.

This also occurs in the Netherlands.
N.S. said...
Dear Katy,
It is with tears and heartache that I read your story. I am so sad and sorry that your mother and you were treated so horribly in the hospital. You see your story is so similar in so many ways to that of our dear dad and our family. I tell our story to anyone who will listen and most times others relate their own eerily similar and tragic story of a loved one. We knew what had happened to our dad and our family was not a unique story, but I had no idea just how often this is happening. So many tragic accounts that I have even considered documenting them.

There is something so corrupt happening and the corruption is resulting in unnecessary death.

My father was labelled with Alzheimers. Although, upon more detailed research, after the fact, we believe he was inaccurately labelled. He had some cognitive impairment. With much time and effort from our family (tireless efforts from my brother) he was actually able to re learn many things. And just months before he had the misfortune of ending up in the hospital he sat in the living room with us and stated “I am just happy to be sitting here with my family”. He was a happy and positive man and loved to connect with people. Quality of life for sure. Quality of life that was stolen from him and our family. He trusted us to take care of him the best we could and we did. But we were not prepared for the onslaught at the hospital and seemed powerless to help him there.

My dad’s story in the hospital is quite lengthy and involved so will not go into detail here.
We firmly believe that they withheld the proper medical care because of his Alzheimer label. That was confirmed to us even more so, once we obtained a copy of his medical file from the hospital. The medical file consisting of pages of notes from doctors and nurses -, purposeful and prejudicial entries with no foundation in truth and also purposeful omissions. Much time spent making notes. Much time… He was denied medical care because of his disability - and as such it would appear he was denied his basic human rights – at least his human rights as they are described in Canada. It is most unlikely that the majority of Alzheimer patients who end up in the hospital for another health issue actually die of Alzheimer’s. And yet it is most likely listed as the cause of death on the death certificate.

There appears to be a serious human rights violation occurring as it relates to disabled Canadians – whether Alzheimer or any other disability. I am not aware of any legislation that allows the removal of those human rights when one enters the hospital.

Kate -Please continue to tell your story about your mom and we will continue to tell ours about our dad. And if we can help even one family from torturous treatment in the hospital and help their loved one to return to their home and be cared for by those who know them best and love them, then we have succeeded – in memory and to the honour of all of those who didn’t make it home.
dehydration said...
i m so sorry hear about this.. "dehydration"
Michael Dancoff said...
I am so sorry for your loss. My mother had the beginning stages of Alzheimers I guess. Certainly dementia. She was well cared for until she passed away. My sister Janet Rivera took care of her in her last years and I was taking care of my terminally ill Brother. What you experienced stressed my out greatly because it made me relive what was happening to Janet back in 2008. What is wrong with her other children! Your mother cared for them as babies and would never let any harm come to them. It sickens me to hear about family members indifference. Thank GOD you were there when she needed you. Please take comfort in knowing that your wonderful sweet mother lived 94 beautiful years. She is still watching over you, until you meet again. Highest Regards, Michael Dancoff

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