dead woman walking


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.  Vic has nursed Vic back to health many times and I know she cares deeply for Vic, 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 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 will 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, and no nothing that can save her.

Today I again witnessed her anguish and phenomenal will to live.  I saw Vic, in my mind’s eye, 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 an execution room, being strapped down and the needle being inserted into her little arm.  I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

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…”

“Oh Jared, look!  Oupa Tienie is standing behind you…”  It really spooked the boys.  Tienie died on the 5th of November 1999…

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…”

 

Gramps was here…..


Vic and her Gramps 1.4.2011
Vic and her Gramps 1.4.2011

Monday 7.1.2013  was a crazy day.  Vic was not in a good space.

Angela, Vic’s BFF came to visit.  She is not only beautiful but also a calm and serene person.  She radiates goodness.  Angela being here gives me some time because I really trust her.  I am able to get some essential chores done knowing that she is keeping an eye on Vic.

“Gramps was here” Vic said.

“How is he?” I asked

“I don’t know.  He just came to tell me how much he loves us all…” Vic replied

My Dad forgot how to breathe on the 15th of May 2011.  He died in our home (in the very same room as Vic) surrounded by his beloved family.  At times he was a stranger in the world.   Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom.  Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill.  At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.

“He has come to take you by your hand Sweetie…”  I said

“I KNOW Mommy” she said impatiently.

Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers.  Of course, Vic immediately got a bee in her bonnet and had to get out of bed.  Always the social animal!

Esther arrived and Vic burst into tears when she saw her sister.

“I am so scared Sis” Vic cried in her sisters arms.

Esther has become Vic’s “coach”.  She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for.  She holds Vic and dries her tears….

Danie took the boys for a haircut and new school uniforms.

In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit.  It was touching when she spoke with Vic and apologized for coming to visit too late.  Vic was sleeping and not aware of the visit.  Joanna left with tears streaming down her cheeks.  She left a little gift for Vic

“I wrote your name in the sand
But the waves blew it away
Then I wrote it in the sky
But the wind blew it away
So I wrote it in my heart
And that’s where it will stay.”

 Siza arrived and told me that Sue would be in tomorrow morning to assess Vic.  She said Vic’s colour is very poor and the circulation in her legs bad.  Siza is of the opinion that the most humane thing to do for Vic would be to sedate her…  Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.

I am torn.  My poor child’s anguish and pain sears through every nerve ending in my body.  Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end.  But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die.  Sedation can end her emotional anguish, but deprive us of last words.

When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries.  He came to visit.  I have thought of him the whole day….”

Dries is a dear family friend who died last year…

In the evening Judy (Dries’ widow) popped around for a visit.  When I told her that Vic had seen Dries she burst into tears.  She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…

I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…

We laughed.

Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit.  Bella, a dear friend over the years, spoke to the boys with so much compassion.  He grew up in a home with a mother who was ill.  He said that the congregation has never stopped praying for us as a family.  He said the congregation carries us in their hearts.  (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)

We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family.  Someone stifled a little sob.  There was absolute peace and a Godly presence in Vic’s room.

Related posts:

Rest in peace dear friend    https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/

For some dying is hard work   https://tersiaburger.com/2012/07/18/487/

Quiet waters of peace


Lead me to the quiet waters of peace
Lead me to the quiet waters of peace

 

 

 

 

 

 

 

 

 

 

 

Vic is very restless and agitated.  Hospice says that at this stage they normally sedate the patients to make the passing easier.  It would be a wonderful solution.  Vic’s mind is mostly crystal clear and busier than ever.  She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family.  Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said.  “Why not?  I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult.  The Pethidine makes her hyper.  She fights sleep at night!  Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight.  “Don’t leave me Daddy!  Please don’t leave me!!!  I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed.  She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times.  I will not allow these words to haunt me later.  She “sees” people.  She babbles non-stop.

The weight is falling off her.  Her trembling fingers are bony, almost skeleton like.  Her eyes are sunken and reflect her pain and anguish.  My poor baby is starving to death!  She has absolutely no appetite.  I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today.  Esther was very emotional when she saw Vic.  I know she said her goodbyes today.  I could see that they had spoken to their boys.  Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic.  I explained to him that she refuses to be sedated.  “I think it will be better for Mom to sleep all the time now Oumie.  It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family?  How do I spare the boys the pain of seeing their mother dying bit by bit?  Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine.  But I promised Vic “no more hospitals”.  I will never go back on my word.

I am babbling.

Vic is very restless and agitated.  Hospice says that at this stage they normally sedate the patients to make the passing easier.  It would be a wonderful solution.  Vic’s mind is mostly crystal clear and busier than ever.  She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family.  Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said.  “Why not?  I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult.  The Pethidine makes her hyper.  She fights sleep at night!  Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight.  “Don’t leave me Daddy!  Please don’t leave me!!!  I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed.  She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times.  I will not allow these words to haunt me later.  She “sees” people.  She babbles non-stop.

The weight is falling off her.  Her trembling fingers are bony, almost skeleton like.  Her eyes are sunken and reflect her pain and anguish.  My poor baby is starving to death!  She has absolutely no appetite.  I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today.  Esther was very emotional when she saw Vic.  I know she said her goodbyes today.  I could see that they had spoken to their boys.  Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic.  I explained to him that she refuses to be sedated.  “I think it will be better for Mom to sleep all the time now Oumie.  It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family?  How do I spare the boys the pain of seeing their mother dying bit by bit?  Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine.  But I promised Vic “no more hospitals”.  I will never go back on my word.

I am babbling.

” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.”  

 

 

Valley of Death


January 2013.  Today was a special day.

Boys lying with Vic before Chris' arrival
Boys lying with Vic before Chris’ arrival

Yesterday Vic asked me to contact her minister.  Chris arrived at our home at 9.30am.  We all sat in Vic’s room whilst Chris read Psalm 23 and prayed for Vic who was walking through the “valley of death.” She prayed for Vic to find peace and acceptance of her situation.

Chris then served Holy Communion.  Vic, at first, did not want Jon-Daniel to partake in the Communion.  Chris explained that a child having to be confirmed before they are allowed to partake in Communion is a man-made rule.  I pointed out to Vic that it would be very special if Jon-Daniel could have his first Communion with her… Vic agreed.

Chris ministering to Vic
Chris ministering to Vic

It was so special.

I was filled with deep gratitude that we as a family have the opportunity of making memories every day. Today I am particularly grateful that Jon-Daniel will always carry the memory of his first Holy Communion with him.  Even if his mom does not attend his confirmation he will remember that he took his first Holy Communion with her.

Vic and Jon-Daniel after taking Communion
Vic and Jon-Daniel after taking Communion

For the first time in a long time I was grateful for Vic lingering death.  I am grateful that Jared had the opportunity to tell her that she is a legend and that she will always live on in so many people’s minds and hearts.  That Stepping Stone Hospice is her legacy….

 

Jared and his Mom
Jared and his Mom

Dying isn’t a science. There is no methodical process of coming to terms with death.  The reality of what is busy happening to Vic is frightening and overwhelming.  Earlier this week, when I gave one of the boys permission to go out, Vic said “See Mommy, this is why I cannot die.  I don’t know if you will be strict enough with the boys…”

Vic is desperately clinging to life.  Vic is afraid of losing control of her bodily functions and becoming a burden to us.  Vic is afraid of the act of dying.

The rest of us are scared because we want her suffering to end.  We know we will experience terrible guilt afterwards… Even as I am typing I KNOW I will second guess everything I did for Vic and every decision I ever made regarding her medical care.  This is just the way it is…

Angela and Tracey visited today.  The visits are so exhausting for Vic and yet she did not want them  to leave.  Every time they say “I must go…” Vic will pout and say “just stay a little longer…”

Vic, Tracey and Angela sharing a laugh
Vic, Tracey and Angela sharing a laugh

The weight is just falling off Vic.  She managed to keep in a mug of diet “Cup of Soup”.  Small mercies!

Lelani picked up the new morphine script from Dr Sue.  She made imprints of the boys’ hands for Vic… She massaged Vic’s little feet.  Jon-Daniel and I swam and Jared went with his girlfriend and her parents to a day resort.  Danie picked up the script from the pharmacy and washed his own motorbike.  (First time in 15 years….he always has it done!)

Vic being pampered by her sister Lani
Vic being pampered by her sister Lani

A normal day in the life of a family walking through the valley of death…I don’t want to forget any part of it.

 

VICKY – A WOMAN OF COURAGE!


My beautiful baby girl
My beautiful baby girl
What makes Vic strong?
Her heritage…
 
What makes Vic weak?
Her fears…  
                      
What makes Vic whole?
Her God…
 
What keeps Vic standing?
Her faith…
 
 What makes Vic compassionate?
Her selflessness…
 
What makes Vic honest?
Her integrity…
 
What sustains Vic mind?
Her quest for knowledge…
 
What teaches Vic all lessons?
Her mistakes…
 
What lifts Vic head high?
Her pride…
 
What if she can’t go on?
Not an option…
 
 What makes Vic victorious?
Her courage to climb…
 
What makes Vic competent?
Her confidence…
 
What makes Vic beautiful?
Her everything…
 
What makes Vic a woman?
Her heart…
 
Who says she needs love?
She does…
 
What empowers Vic?
Her God …

 

 

 

 

 

 

 

 

 

 

 

 

 

       

 

 

 

 

Tomorrow may be better than yesterday


Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485
Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating.  Last night the nausea was absolutely relentless.  With no food in her stomach Vic vomited blood.  Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night.  I cried and slept in her bed with her.

 

Today Sr Siza tried to put up an IV drip.  Vic has absolutely no veins left that are suitable for a drip.  The sub-cutaneous driver is back up.  At this stage of the game the risk of cellulitis is less than the need for pain and symptom control.  We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron.  “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.”  http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital.  Vic refused.

On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating.  It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.