Lesley Perkes
Lesley Perkes

Life support

The doctor turns to me and says you need to think about what you are going to do if he needs to go on a respirator. I do not understand. I ask. He says if he turns for the worse and needs to go on a respirator what will you do? I say why are you asking me – you are the doctor? He says no, if that happens, the family must decide. And one of you must make a final decision.

I am that one of me.

He never uses the words life support. He never says if he cannot breathe on his own, do you want us to provide a way for him to breathe or do you want to let him go? He never tells us we will not be able to communicate with each other anymore if he goes on a respirator because we have to sedate him so that he does not try to remove it. He never explains what a respirator means. He never says: do you know that he will never recover from this no matter what? He never says his heart is so broken we cannot possibly fix it and, considering you have no medical aid you cannot afford what may save him. And even if you can afford it, he is a smoker so we are unlikely to be able to give it to him. None of this is said. Not even he is too old anyway in comparison to some people who need new hearts and he will never ever have the same or even a similar kind of life he had before anyway, because as you can see his body no longer works and we have no idea at this time about his mind.

He never says that last part especially.

So, before the time comes, I make a decision on life support for a person I love without understanding what I am doing or what it means. I do not remember when I last slept or how many meetings I have had with how many doctors. Except for the one cardio surgeon who refuses to give us tests he has done, so we can give them to another cardio surgeon who needs them, because, he says to our bewildered selves, “that man has never given me any business”.

Most of the time I am either outside the ward, making or taking phone calls, finding ways to pay today’s R15 000 minimum so that he can stay in the hospital. My own mind is certainly not working properly. I must also buy food for the house and fetch my child from school and I have not been able to work for weeks because I am at the hospital and the bills that are not the hospital bills are making a little mountain on my dining room table at home.

I speak to his closest siblings. They are sort of traditionally religious. They say we must do everything we can to save him because God says so. I do not ask — because I do not know that I should — whether this God intends for us to be kept alive when we are supposed to have left. I do not understand, that even by this time he is beyond saving.

In fact I think he will be fine. This is a phase. He is not the kind of person to die. Really. Anyone who knows him will confirm that. Death does not cross my mind except for once in the parking lot and I put the thought aside as if I cannot think of such things.

Medicine is amazing. There is this too. There is this feeling that medicine can indeed save us.

I never say no. I never take him home and make a bed for him here in his most favourite garden.

Inevitably, he goes on life support for almost a month and it is of no use whatsoever because he dies. He was going to die anyway, like all of us. All that happens is that he goes on a respirator and lasts for another month in some strange world in which there is no glass of water and who knows what suffering.

One day, because his body works the way it should, they take him off the machine and we are celebrating because he can breathe all by his own self and then he dies, although, as he does, they do everything they can to save him again without asking anyone. They just respond, with electric shocks while he dies and I am shouting leave him alone, leave him alone because at this particular moment I feel his heart, what was left of that loved heart, beating far too fast inside me.

The doctor’s bills come to R350 000 and the head of the cardio unit has a black Merc with a personalised number plate as if to say this respiration business is glamorous and there we are, with nothing. Not even a memory of a good way to go.

The doctors need to spell it out. They need to sit you down and tell you to sleep and come back in the morning and explain everything to you properly so that when you decide to switch someone on you have an idea of what it is you may be doing to them. They should also explain how they might benefit themselves from your decision. Which makes me think about why they leave out what exactly they leave out when they ask you to make big decisions about life and death.

Like for instance they never said die.

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    • http://www.niemandphotography.blogspot.com Hennie

      A very sad, but alarming read. Although I have never been where the writer has been, I recently had surgery at a private hospital and was horrified by what the doctors, hospital and surgeons were charging their patients.

    • http://none Lyndall Beddy

      My mother was on life support breathing for her for longer that Madiba.

      After that she was on an oxygen machine permanently but was totally happy in our large spare room with a big double bed and headboard, 2 armchairs, all her things and the TV, and close enough to the bathroom to reach it with the cord of the machine and the help of her carer who was with her all weekdays as well as was my housekeeper.

      She was happier than in her flat, because the children were around and she loved Tom’s cooking (she hated to cook).She and Tom watched either rugby or cricket every Saturday afternoon (which is when the children were out and I used to do my gardening).

    • Kath

      Thank you for this article. I watched my mother on a respirator and it was horrible. It tore her mouth to shreds and had no dignity whatsoever. In the end the doctor let us take her off for a while to give her a break. This was his way of understanding that we were ready to say goodbye and an attempt to make it less traumatic. She had rallied that morning and taking her off the machine was followed by her death.

      I agree 100% with what you have written and I have a living will that states that I do not wish to never ever be on a respirator as the nurses and doctors I spoke to afterward all said that very few people come off respirators and those that do, end up on them again very soon afterward, and then never come off. I’d rather not have to undergo the trauma of it. Just let mego as peacefully as possible.

    • Momma Cyndi

      With tears in my eyes, I hear you.

      My family has been warned that if they put me on life support, I will come back and haunt them. At lest he died on his own terms and not with the indignity of a tube down his throat.

    • gille

      Thank you for writing down what is on our minds and not spoken. Doctors have given an oath to save lives (it may also appeal to their egos) and medical science has gone beyond nature, we, as family, as friends, need to make the hard decisions to allow our loved ones to die with dignity, without pain and in peace.

    • AsYetUnknown

      Intriguing article. To die or not to die. To pay the doctor’s bills or not to pay. To be broke or to be broken. Thinking straight, there really is only one way out, you can delay it as much as you want, but in the end letting go is the only option.

    • lesanne brooke

      Truth. Simple and profound.

    • http://www.thoughtleader.co.za/lesleyperkes Lesley Perkes

      Thanks you all. Lyndall – that’s great. I do know that sometimes life support is a good idea and that sometimes it is hard to tell when.

      I made a mistake in the article btw – said that the Doctors’ fees came to R350 000.00.
      This was meant to be the hospital and all the doctors, the labs etc. Sorry.

      And yes – most of the comments have veered towards saying why we all need to make A Living Well. I agree with that.

    • http://na Lauren-Joy Rosenbach

      I doubt you remember me Lesley, I was a Rocky street girl and MK was a catalyst in one of my most life changing experiences. You were the best thing that happened to him, I used to be in awe of how you dealt with him. I never thought of you when I heard he had died, or what a terrible experience it must have been for you.
      It doesn’t seem fair that access to good health is only for the privileged, and sure a guys got to make a living……but such a good living?!!!!!!!!!
      A very belated long life. I’m so glad I found your blog. I will visit it often.

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    • http://www.thoughtleader.co.za DebbySA

      A very shocking, important article. Thank you for having the strength to write it.

    • http://www.thewritingroom.co.za Sarah

      I love this post and it is all true. But it leave me with the question – who was on the respirator. Her dad? Grandad? Its a bit vague.
      I was on life support for three weeks in 2012 and today I am totally fine. But then I was 37 years old with two small children. So yes, for an elderly person this is a one-way ticket. But for a younger person life support can literally save your life. It saved mine.

    • http://www.thoughtleader.co.za/lesleyperkes Lesley Perkes

      Hey Lauren – that’s so nice :-) And Sarah – I am happy to hear this. And the man on life-support was my best friend, my lover, my husband, a fountain of mischief and source of great one-liners.