Tag: death sentence

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…”

 

Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.