Textbook death 13.1.2013


I am cautiously optimistic that we have managed to stop the bleeding ulcer and that the new medicine regime has the vomiting under control.  Vic is still running a fever, her BP is dropping and her heart rate has stabilized in the 110’s.  She appears to be more stable than she has been in a couple of weeks.IMG_8501

This morning, after I washed her and changed her pyjamas she said “Mommy, I would like to go to the supermarket today…”

“Cool, what do you want to buy?”  I asked

“Tippex (correction liquid) for the boys and Stilpain and Syndol (Tablets)” she said.

“Okay….” I said

“But I think you will have to drive Mommy… I don’t think I should be driving!” Vic said

This incredible young woman just does not know how to die!  Vic had a good breakfast this morning.  Vic has not eaten since Christmas!

The boys are fleeing home.  Jon-Daniel has spent the past day and a half at Esther and Leon’s.  Jared went to his Dad’s.  I wish I too could flee.  For the first time in my life I have come to understand why families place their dying loved ones in hospital of in a Hospice In-Patient unit.  The waiting is gruelling and heart wrenching.  The rollercoaster of dying is horrific!

I previously researched the “length of dying”.

The Journey Begins: One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

#1: Ask For Forgiveness

           #2: Offer ForgivenessTask

           #3: Offer Heartfelt ThanksTask

           #4: Offer Sentiments of Love

           #5: Say Goodbye

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes”breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred. http://dying.about.com/od/thedyingprocess/a/process.htm

Vic has experienced severe delirium or rather terminal restlessness, which is apparently a fairly common symptom in many dying patients.

Some characteristics of delirium include:

  • Impaired level of consciousness with a reduced awareness of the surrounding environment
  • Impaired short-term memory and attention span
  • Disorientation to time and place
  • Delusions and/or hallucinations (believing and/or seeing things that are not real)
  • Uncharacteristic speech – may be really loud or soft, very rapid or slow
  • Fluctuating mood swings
  • Sleep disturbances – insomnia or reversed sleep cycle
  • Abnormal activity – body movements may be increase or decreased, very fast or slow

 

Terminal Restlessness

Terminal restlessness is a particularly distressing form of delirium that may occur in dying patients. It is characterized by anguish (spiritual, emotional, or physical),

restlessness, anxiety, agitation, and cognitive failure.

Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience, but if a patient is dying with terminal restlessness, her death can be anything but comfortable and peaceful. http://dying.about.com/od/symptommanagement/a/delirium.htm

Vic is on massive dosages of medication.  She is peaceful now.

On Monday, the 14th, Jon-Daniel will receive his school colours for academic achievements.  Vicky is determined to attend the ceremony.  We will find a way of getting her to the school to witness this achievement.  I believe it is the last goal she has.

Image
Vic and her pride and joy, Jon-Daniel 4.1.2013

So despite me saying that Vic does not know how to die she is actually having a textbook death…

“Promise me Mommy…..” 13.1.2013


ImageIt has been a long day.  Vic is in a drug induced sleep.  She looks so peaceful.  Vic is not anesthetized – she wakes when she is thirsty or in pain.  She has only urinated once in 24 hours.  Her end is near.

Vic is looking angelically beautiful.  Her skin is blemish free and almost transparent.  Her hair seems to have taken on a life of its own.  Her little hands look skeleton like.  Her body is wasting away and yet she remains as beautiful as ever!

I will not sleep tonight.  Many years ago I promised Vic that she would not die alone or in a hospital.  The time is near and I must honour this promise.

Earlier tonight she woke up and I wasn’t in her room.  She had a panic attack… Danie found her trying to walk down the passage.  She was holding onto the wall and tears were running down her cheeks.  “Mommy, I am scared…”

Something has started bleeding again.  Vic vomited and there are signs of old and new blood again.  “Look Mommy, my mouth is bleeding…” she said.

Vic is deadly pale and her body has involuntary “jerking” movements.   She is decidedly unstable.

“Mommy, you have to get me to the awards evening.  I don’t care how.  Promise me Mommy!!!”  She sobbed tonight.  Tomorrow I will speak to the school and make the arrangements.  It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony.  We will find a way.

We had a strangely “normal” day today.  Jared brought his gaming computer down from the study into my TV lounge.  It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it.  Today I welcomed it.  We needed to be close to one another.  I swam twice and we ate spaghetti bolognaise.

The boys have fear in their eyes.  I have fear in my heart.

Daddy don’t leave me…. 12.1.2013


A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…

IMG_8516

Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

Image

Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

Image

It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

Image

I hate my life.  I wish I were dead.

dead woman walking


My post of one year ago.  IMG_8510Reading through this post, retracing last year, I can only thank God my baby girl’s suffering is over.  Do I miss her?  With every fibre in my body.  At times I feel as if I am drowning in my grief.  At other times I am so grateful that my prayers were answered and that my little Angle now runs, free of pain, Last night I had a discussion with someone who Vic loves very dearly.  This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic.  She is actually the only person that has truly travelled this horrific journey with us.  Vic has lived through many death sentences and reprieves.  Lee has been around for at least the past 7 years of Vic’s journey.  Lee has nursed Vic back to health many times and I know she cares deeply for her friend.

I discussed the various treatment options with her.  Do I insist on having a stent fitted or do I request feeding tubes?  Or do I go with Vic’s non-intervention wish?  But if I comply how do I bring calmness and peace in Vic’s life?  Vic is no exception to the rule…As Bella (the Minister) pointed out last night: even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.

Last night I decided no sedation.  If I allow sedation, which is against her wishes, I would silence Vic’s voice, her fears and her tears.

Dr Sue says the bleeding is from the abdomen.  Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting.  Her breathing is shallow and her heart rate weak but very rapid.  Her blood pressure is dropping and her circulation is poor.  The liver is very enlarged.

We are past the point of no return.  Vicky is dying and only a miracle can save her.  There is no operation, no magic medication.  Nothing can save her.

Today I again witnessed her anguish and phenomenal will to live. 

I had a dream.  I saw Vic being escorted, in deadly silence, down a long dark passage.  Her family and friends were escorting her on her final walk into the chamber of death.  I clearly saw the fear in her eyes and I could feel her little body trembling with fear.  I heard a voice saying “Dead woman walking…”

I saw her walk into the Chamber of Death, being strapped down, and the needle being inserted into her little arm.  In my dream I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

Then I woke.

It is so cruel.  For all of us.  Why do people linger?  Why don’t we all just go to sleep and never wake up?  Or die in a car accident?  Why this suffering???  I want to go to sleep and never wake up.  Life sucks!

Vic is on a mild sedation.  She is more calm and peaceful than she has been for a couple of weeks.  She woke up this evening and had dinner…half a hamburger!!  My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food.  She has passed no urine today.

She sobbed when I told her the boys had covered their school books…”I want to do it for them!”  She wailed

“I have let down my boys.  I always cover their books…”

The boys were in her room when Vic said “Oh Jared, look!  Oupa Tienie is standing behind you…”  It really spooked the boys.  Tienie, Vic’s biological father, died on the 5th of November 1999…

Her angels have come to fetch her.

I wish Vic was married.  I wish her biological father was still alive!  I wish the decision was not mine!!!

Tomorrow I will ask that the sedation be increased.  I will silence my child’s sweet voice.  I will also silence her tears and fears.

“Dead woman walking…”

Textbook death


Image

I am cautiously optimistic that we have managed to stop the bleeding ulcer and that the new medicine regime has the vomiting under control.  Vic is still running a fever, her BP is dropping and her heart rate has stabilized in the 110’s.  She appears to be more stable than she has been in a couple of weeks. 

This morning, after I washed her and changed her pyjamas she said “Mommy, I would like to go to the supermarket today…”

“Cool, what do you want to buy?”  I asked

“Tippex (correction liquid) for the boys and Stilpain and Syndol (Tablets)” she said.

“Okay….” I said

“But I think you will have to drive Mommy… I don’t think I should be driving!” Vic said

This incredible young woman just does not know how to die!  Vic had a good breakfast this morning.  Vic has not eaten since Christmas!

The boys are fleeing home.  Jon-Daniel has spent the past day and a half at Esther and Leon’s.  Jared went to his Dad’s.  I wish I too could flee.  For the first time in my life I have come to understand why families place their dying loved ones in hospital of in a Hospice In-Patient unit.  The waiting is gruelling and heart wrenching.  The rollercoaster of dying is horrific!

I previously researched the “length of dying”. 

The Journey Begins: One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

           #1: Ask For Forgiveness

           #2: Offer ForgivenessTask

           #3: Offer Heartfelt ThanksTask

           #4: Offer Sentiments of Love

           #5: Say Goodbye

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

 

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes”breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred. http://dying.about.com/od/thedyingprocess/a/process.htm

Vic has experienced severe delirium or rather terminal restlessness, which is apparently a fairly common symptom in many dying patients.

Some characteristics of delirium include:

  • Impaired level of consciousness with a reduced awareness of the surrounding environment
  • Impaired short-term memory and attention span
  • Disorientation to time and place
  • Delusions and/or hallucinations (believing and/or seeing things that are not real)
  • Uncharacteristic speech – may be really loud or soft, very rapid or slow
  • Fluctuating mood swings
  • Sleep disturbances – insomnia or reversed sleep cycle
  • Abnormal activity – body movements may be increase or decreased, very fast or slow

 

Terminal Restlessness

Terminal restlessness is a particularly distressing form of delirium that may occur in dying patients. It is characterized by anguish (spiritual, emotional, or physical),

restlessness, anxiety, agitation, and cognitive failure.

Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience, but if a patient is dying with terminal restlessness, her death can be anything but comfortable and peaceful. http://dying.about.com/od/symptommanagement/a/delirium.htm

Vic is on massive dosages of medication.  She is peaceful now.

On Monday, the 14th, Jon-Daniel will receive his school colours for academic achievements.  Vicky is determined to attend the ceremony.  We will find a way of getting her to the school to witness this achievement.  I believe it is the last goal she has.

Image
Vic and her pride and joy, Jon-Daniel 4.1.2013

So despite me saying that Vic does not know how to die she is actually having a textbook death…