Hi everybody, you may remember a few days ago I was talking to you about the joyous tasks we have been having to perform. Things like the preparation of my Advanced Directive.

To the benefit of anyone who may find themselves in my position, I hope therefore this applies to very few, I would like to explain where I found myself just a few days ago.

The original Advanced Directive was prepared in the presence of Louise, my brother Matthew, my mum Lynne and my GP. The document confirms my request that when I become unable to speak or swallow, I wish to have the mask-type positive pressure ventilation I am currently using removed. It also confirms my wish not to be resuscitated under any circumstances from the date of the Directive. My GP retained a copy of the Directive for their review.

Everyone at that meeting understood that this course of action would lead to the least possible amount of distress and would without doubt be in my best interest.

A point of note regarding the current ventilation arrangement is that the mask is removed a number of times during the course of the day for cleaning purposes, dressing, bathing and mask maintenance. These tasks are done by various family members as well as the professional care team. Ventilation is reinstated as quickly as possible to minimise discomfort.

Since then a debate has arisen as to whether or not my request to have my ventilation removed would result in the law being broken.

As a result and until the position is clarified, my Advanced Directive has been amended to state that in the event of the loss of speech or ability to swallow, then I refuse nutrition and water by any means. Each of the options have the same end, but the latter will take considerably longer to reach the desired outcome and will be incredibly distressing for family and friends to witness.

As this discussion is ongoing I can not go into any more detail but I will keep you informed as to any further developments. In the meantime, I would be very interested to hear your thoughts and opinions on the above so please let me know.

much love
Neil

This is a difficult one to write about. We were very angry. Neil and I both maintained (and myself to this day) that this consequence was not fully explained to us when we first took the ventilator. Neil elaborates on our understanding of the information given in a later post, so I won't go into it here myself, as his words are far more important than mine, but I will say how it affected us.

I can still not decide, had we understood the true consequence, whether I would have wanted him to start on ventilation. There’s no doubt it gave him an extra few months, he saw his son's first birthday, heard his first proper words, watched him learn to walk, and saw him open his presents on Christmas morning. But it took away his natural ability to die peacefully in his sleep, the consequence of which created the horror of choosing when and how to die himself.

There were some mornings I hated waking him from sleep, hated watching him come round to consciousness and have the realisation that none of it was a nightmare, the ever present repetitive sound in his ear was the sound of the machine keeping him alive in a torturous state of physical pain and helplessness.

He could only watch Oscar fall as he learned to walk, he couldn't run to catch him. He could only watch Oscar's tears, he could not wipe them away and cuddle him better. His skin had become
 so sensitive that when I sat Oscar on his knee and held his hand up to stroke the soft baby hair, he cried and said it felt like rough straw in his hands. The tears he cried himself rolled down his cheeks and waited for someone else's hand to take them away. He couldn't put his arms around me to comfort me and tell me that Oscar and I would be OK, he could only ask me to lift his arm and wrap it around my shoulder.

Sleep had given him a few precious hours away from all this.

The ventilator had backed him into a corner where he would have to draw his own line in the sand and say, 'I want to go now, I want to leave you all.' It turned his time of death into a choice and, it would now seem that even to die peacefully in his sleep at the end of all this pain and suffering was yet another mercy he was not to be allowed.

You would think this cruel enough and not possible to add to the stress of the situation, and yet, there was more cruelty to come.

The Advance Directive is a legal document, designed to give the patient a say in his/her treatment at the time of death. Neil had decided that for him the point at which life would no longer be worth living was at the loss of speech and swallow. He couldn't go on if he were just a body in a chair blinking his eyes for communication. He chose to die by having his ventilation removed. This, we understood, could be done in a controlled manner with the right balance of drugs to cause the least distress and would be as close as possible to slipping away in his sleep.

The day Neil wrote this post was the start of many weeks of worry about that end. Even in this horrible cruel and degrading end he was not to have his choice of how to die. The next best choice was to have nutrition withheld and watch him starve to death. As Neil said, this would have taken considerably longer and caused a great deal more stress for himself and all around him. Not only that, but due to the nature of the reply from the GP's legal advisor, it gave us the added worry that every time I changed his mask for cleaning, it was deemed as 'removing his ventilation' and should anything happen to him whilst doing so, I could be prosecuted.

None of this horror was the fault of our GP, nor was it the fault of the legal advisor... as Neil says, the law is as clear as mud.

I'm not comfortable being outspoken on this subject, I'm not a medical expert nor an expert in law, all I can speak about is how the lack of clarity affected my own family at that particular point in time. I'm not saying that ventilation is a bad thing, it was lack of clarity that caused the messiness here.

I discussed the issue with Neil before he died and he said he still would have chosen to have the extra months with us, despite the difficulties.

Remarkably Neil did have one very precious thing left, he had his sense of humour. – Louise (2013)