I have a living will 31.7.2012
I have become accustomed to the ICU at the Donald Gordon Hospital. DGH has one of the best Intensive Care Units in the country. There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department. No full-time doctors or pain specialists in the Union’s ICU.
The difference is that the DGH is a private teaching Hospital and does not handle trauma patients. Only critically ill patients are admitted to the Donald Gordon ICU. The staff are all ICU specialists. Ok, I must admit that they also know Vic very, very well. For the past 7 years they kept Vic alive. Time and time again she has amazed and astounded them by surviving every conceivable Super Bug, ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs. The doctors that work in the ICU do work at the Pain Clinic. They understand the benefits of post operation Ketamine Infusions.
Over the years Vic has spent months and months in the DGH ICU…
When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her. He knows what she has been through.
This past weekend I spend a lot of time in the Union’s ICU. More time than I have ever been allowed to spend in the DGH’s ICU.
Vic, on Sunday morning, was like a wild animal caught in a trap. Her eyes were crazy. Vic’s pain levels were horrific and the ICU staff did not know how to handle it. On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”. I had to sit in the “Comfort Room”. It was so cold in there! The air-conditioning was turned down to near freezing levels. I was so cold that the bones in my body ached. At 03:00 I decided to go home. I was not allowed to stay with Vic and at that stage she was sleeping peacefully.
I was woken just after 07:00 by the ICU staff asking me to come to the hospital…
My well behaved, docile child had sworn at her nurse. She was insane with pain. Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down. I made the mistake of telling her to calm down… That was an epic mistake!!!
We eventually managed to get her pain under control and then the staff asked me to stay… I basically left ICU when Vic was discharged into the ward Monday afternoon …
Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support. In the one corner there was a young man. I would imagine that he was in his mid-thirties. “Was” is correct. He was declared brain dead yesterday morning. By now his organs may have been harvested. Maybe not. What I am sure of is that his bed is no longer occupied by his imposing body. Even in the claws of death he had an imposing physique and a presence. Yet he had no visitors. Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news. One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out… He was left to die alone.
Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family. The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals. Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.
I have a Living Will. I do not want to be kept alive artificially. I am absolutely certain about it. I cannot and will not be convinced otherwise. People should be allowed to die with some dignity. We all live to die…it is as certain as paying taxes.
What is the purpose of a life with debilitating pain??? I do not want to put my family through it – ever!! Oh I know my family will miss me. I know I am loved. I however know that we live to die. I look forward to dying. I look forward to what I have strived for all my life. Peace, no responsibilities, quiet… I know that I will go to Heaven. I have already been to hell. I live hell every day.
If I had been ill I could have handled it. I would quietly have found a way of leaving it behind. To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through.
So tonight I ask God again: PLEASE give me the pain. Allow Vicky to have some quality of life. Allow her a life. Allow her to be loved. Allow her to love unconditionally and without fear. Please let her be able to run… give her time on a beach; allow her to turn her face into the sun. PLEASE let her have a normal life, a job, independence or end this journey.
On Monday afternoon Vic was discharged from ICU to the ward. I asked the doctor to let Vic come home straight out of ICU. I can take better care of her at home than they can do in hospital. Vic is home and last night was a night out of hell. She was so ill, vomiting all night. She could not keep her medication down. No sooner did she take a sip or water or it just came spewing out. Pain control was absolutely out of the question.
Today I received a message from the Pain Clinic that the Hospice application motivation was underway. Hopefully we will have an answer by next week. If only I could give Vic meds intravenously it would be so much better.
Vic also needs physiological support/guidance in making peace with her situation. From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her. Vic needs to make peace with her journey and the trip itinerary.
But more about our family conference and Vic’s emotional battle tomorrow. It is time for her medication and I need to sleep.