Eat, Sleep, Vomit 12.6.2012

Today was a mixed day.  Although Vic seems marginally more ill and weaker than yesterday she was more upbeat.  When the boys got home we all had tea with her and the boys joking brought a smile to her beautiful little face.  For approximately fifteen minutes there was easy banter in her room.  What a change – our conversations tend to revolve around bowel movements and the color of vomit.

Lying on her bed with me I realized how small our world has become.  Vic’s days consist of Eat, Sleep, Vomit or Eat, Sleep, Tablets – one of the two combinations.   It is amazing that she has not developed bedsores yet.

The Concise Oxford Dictionary defines euthanasia as being “gentle and easy death;  bringing about this, especially in a case of incurable and painful disease”.

I have a simple theory.  Most people who are terminally ill and of full mental capacity are able of ending their own lives  at one or other stage of the disease.  The terminally ill are able to take that extra dosage of morphine themselves.  The vast majority of people have an incredible desire to live and will live through pain and suffering and continue to breath!  Euthanasia is not the issue… You really want to die, you will find a way to die

In the event of a patient suffering from a disease or illness that incapacitates them i.e. motor neuron disease where the patient is ventilated or the patient was left severely brain damaged from an accident, life sustaining treatment should not be allowed.   If doctors are allowed to prolong lives should they not be allowed to end life?  I firmly believe that doctors do not know when to give up.  Vic’s Dad, Tienie, had severe brain damage after a car accident and yet the ICU team resuscitated him after the brain damage had been confirmed!  Why??? What is the purpose of breathing when you are not able to walk, love, talk, breathe on your own?

Professor S A Strauss in his book Doctor and Patient Law, 1984 edition published by J L van Schaik on page 387 states that “in principle every person is legally entitled to refuse medical attention, even if it has the effect of expediting his death.  In this sense the individual has a right to die’.  All that is required is that the declarant, at the time of making his refusal known, is compus mentus…

In the case of Vic she is on 400mg of morphine twice per day and takes 25ml of morphine syrup every 4 hours for breakthrough pain.  Vic has become morphine resistant and the dosages are increasing to keep her incredible, debilitating pain at bay. Surely the dosages of pain medication that she is on must become lethal?  I know that it is Vic’s doctor’s primary intention to make her life as comfortable as possible by the administration of pain alleviating medicines.   Yet the mercy shown to her may have the side effect of hastening death…  Please do not misunderstand me – If I knew how to pray I would pray for her suffering to end!

Vic has a living will with a DNR (Do Not Resuscitate) clause.  I will ensure that it is enforced if the “need” ever arises.

Sometimes I am scared Vic will not die – that she will continue to live, no breath,  in this hell that we call life.  The bottom line is however that Vic will NEVER take an extra dose of morphine and NO ONE will ever administer an extra dosage of morphine.  We all fear God’s retribution for murder… both the terminally ill and their caregivers.

As my dear friend Mohammed says:- her life is in the hands of her God.  We can speculate as much as we like, we have absolutely NO control over life.

I hate seeing Vic suffer but I so cherish the 15 minutes we had today.  Fifteen good minutes in two months…I know I would have taken that extra dose of morphine a long time ago if I was her her shoes.

The world is filled with evil, bad people.  Why don’t they suffer the pain and indignity that my sweet, loving child suffers?  LIFE IS NOT DARN FAIR!!!!!!!!Image

28 days medication….

May God have mercy of your soul… 30.5.2012

I started this blog because I don’t trust myself to talk.  If I start crying I may not stop.  Actually I don’t have too many people to talk to.  For the past 10 years we have been waiting for Vic to die.  Initially, I think,  people believe, that holding a dying person’s hand in the final hours is  “romantic” but then the person doesn’t die…and the world moves along.  People carry on with their own lives.  That is just the way it is.  People battle to handle the emotion, the waiting, the suffering.  And it is okay for them to move on.

It is not only other peoples fault’s.  I don’t have time to visit, go for coffee, phone…  It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family.  Many of my old friends must think I deserted them.  Maybe I have but time in every which way has deserted me.

I have been moved by old friends and acquaintances sending me messages of support.  Thank you all.  I had no idea that people would actually read my blog.

Earlier today I read an blog written by Michael Wolff, a writer,  where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true.  I cried.

Good news!  Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her.  She will do an experimental “procedure” on Vic next week.  Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion.  Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance.  That will be so merciful!!  Vic takes 400mg of morphine, in tablet form, twice a day.  She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain.  The meds is not what is causing her sleeping.

Vic sleeps 95% of the time.  When she is awake it is to whimper or vomit.

Jared has started to display symptoms of severe stress.  His school marks are dropping and he doesn’t sleep.  Like me, he is awake every couple of hours to check on his Mom.  Jon-Daniel doesn’t talk.  He just carries on.  I worry about him – how will he handle The Day, when it comes?

In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls.  Especially on Vic and the Boys souls…