caring?

I recently had cause to visit the gym at the hospital where my wife needed physio, I accompanied my wife but could naturally take no part in her treatment. However, I was able to observe the other patients being treated in the gym. This situation was both inspiring and depressing.

Many of the patients being treated were old as would be expected but a surprising number were young men suffering paraplegia, there were no women suffering this way there in the gym at this time. I could only guess that the majority of these young men were so handicapped from having been involved in awful accidents.

The inspiring part of this visit was to observe the gentle and kindly way in which the staff dealt with these men. I thought that it must have been very hard to go to work each day to be faced with such sad cases knowing that despite all your efforts there is little that you can do for these young men other than keep them sane and comfortable.

In particular there was one young man that seemed to be paralysed completely and could only move his mouth, he also had a life support system fixed to the wheel chair and pipes going into his every part. Sad indeed but he was accompanied by a young woman that appeared to be his wife. This got me thinking about what is caring?

It is all very well to be kind to these people but I wonder if they have ever been asked the question as to what they want for a future. I can imagine this young man looking at his wife and thinking how terrible it must be for her, and what the future holds for her. He must feel that his incapacity had not only ruined his life but has ruined the life of someone that is most beloved to him.

I wonder if the medical profession has put it to him that if he finds that it is all too hard and that he doesn’t feel that he can cause so much suffering in the future, then he has only to say the word and the profession will facilitate his gentle and dignified demise.

I am aware that if you asked a loved one the question about whether this young man should be allowed to terminate his life,  they couldn’t make the decision, it would be too hard and it would maybe make them feel guilty. However, I think that the difficulty in making a decision that would avoid this young man’s mental and physical suffering is the result of our having been raised to think that death is a punishment rather than a necessary part of life.

I am not heartless and I can well understand the terrible trauma that such situations place ordinary people in, situations that they can’t be trained to face up to in the normal every day run of the mill life, but I feel that the person that is most effected by the situation is the person that has the least say in what his/her future should be. I can’t accept all the crap about the sanctity and ” right to ” life, life is for living and once one is not able to participate in living, then the choice should be there to finish life painlessly.

This is a matter that I am increasingly mindful of since my wife and I are now of an age when the onset of dementia and other age related incapacitating complaints become ever more a possiblility. I read all this rubbish about the old becoming and increasingly high cost to the community because of the espense of operating nursing homes and the like to house all these zombie like creatures. This problem is a self imposed problem not a real problem. I together with most of my friends of similar age, don’t want to be kept alive sitting drooling, eating gunk, knowing no one, being bathed, put to sleep probably with sleeping pills etc. When I don’t know that I am me and can’t remember, recall or act out, my life in a meaningful way, then I am dead, the fact that others still have the ability to keep my body functioning is not keeping me alive. I am the sum of all my feelings and experiences and once those functions of the brain have gone then I no longer exist

Surely, caring is providing what is best for the patient and if the patient is suffering because of unwanted treatment, then the caring becomes a way of satisfying the needs of the carer more than a true caring for the patient!?

I know that things like dementia block out all memories and feelings but whilst I am still able to think, I have already decided that I don’t want to be a cause of pain and unnecessary euffering to my loved ones, far better that they can only remember me as me and not come and look at drooling zombie!

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7 Responses to caring?

  1. gemmell says:

    Grandad,

    Really well written and very thought provoking. I know my mother (your daughter) has always said that if she were to lose her capacity that she would want us to end it all. I agree that there should be choice. It should be up to the individual. I would like to think that my partner would stand by me if it every happens to me, and I would hold out hope that this stem cell research or other technologies would one day progress so that I could walk again.

    But this isn’t for everyone. Maybe what you’d have to do is have it so that they have to wait 3 months after they’ve notified that they want out. That way they’ve got time to really think, adjust, get over some of the emotional scarring and think about it….

    Is there anything good about getting old?

    ~Gemmell

  2. Geoff says:

    Marvellously written. I concur entirely. My wife’s mother died recently at 92 after a couple of years of dementia caused by strokes. in her lucid moments she desperately wanted to die, but that was not possible, so her final years were undignified and miserable. Visiting her and the other empty shells of demented people around her was terrible. I think all of those people would’ve chosen to die if they could have.

    And Simon asked if there was anything being good about getting old. I think there’s a lot that is good. Peace of mind, wisdom based on experience, emotional strength gained from weathering a few storms. Stuff like that. :-) Still, I recently saw on a website where an elderly American gentleman wrote something like “Growing old is for tough guys”, and I think that’s true. Bad things happen as one ages (failing eyesight etc), and the answer is to be a “tough guy”, accept it and deal with it, not surrender to self pity.

    Thanks for a very thought provoking read.

    Cheers

    Geoff

  3. grandad says:

    Nice to hear from you and to have someone agree with my rantings, you must be amongst the first! I hope that you get better recognition from your friends than I do!!

    Re the comments of the elderly American, I would refer to my recent reply to a question trom my grandson Simon, asking, ” is there anything good about getting old? ”

    I pointed out that the person I mentioned in my blog wasn’t old, he was in fact quite young, which made me sorry for both him and the young woman that I thought was his wife, the point is that life can deal very awful hands to any one regardless of their age or behaviour. Age just makes the loss of faculties more likely but not more terrible, and if one is young and gets incapacitated and is forced to live on, then it is for a longer period. Accordingly, it is better to be incapacitated when one is old because time and nature will terminate your suffering sooner.

    My point is that you don’t have to be tough to grow old, just lucky, and to be like myself and to grow old and still enjoy it, one has to be bloody lucky! I can assure you that I don’t consider myself particularly tough or deserving, just extremely lucky. Hope I haven’t jinxed myself by making such a boast!

    Cheers, John ( Grandad )

  4. Nathan Petchell says:

    Hello there,

    I work with Simon and was sent a link to this post. I find too much agreement here for my liking (and I think there is some potentially interesting discussion I’d like to read people’s thoughts on), so time for a devil’s advocate to say a few words:

    I think the main difficulty with the issue of euthanasia is how to decide what would ultimately be best when no-one can predict the future. A patient suffering from cancer could recover and/or be motivated/talented enough to cure/vaccinate against this killer, a dementia patient could still produce art or words that can inspire and uplift a large number of people, a physically disabled person could still push the boundaries of science. The trouble is these scenarios have very low odds of happening. If the caree is to decide on how to respond to the odds then moments of weakness or doubt can have massive repercussions potentially for many people, which could warrant the choice being taken out of their hands, if the carer is to decide on how to respond then, like it was said in the article, they may not make a choice in the best interest of the caree.

    So what to do? You would probably need to have an ‘objective’ carer or board of carers who weigh up the odds of a person performing deeds of, or experiencing, ‘good’ (you could take into account such factors as family situation and history, education, wealth, history of charitable work, field of employment, references from friends etc.) against the magnitude of the tally of ‘bad’ (prognosis, amount of visitors, pain level, history of suffering etc.), also obviously taking into account the wants of the person and potentially any carer. This would need to be continued to be evaluated over time until the odds are too low and euthanasia is allowed.

    Having an objective carer council could also mean other similar scenarios can be considered where the odds of good vs bad are key and someone is requesting euthanasia, all of which would save us money and are problems largely of our own making which would get smaller with legal euthanasia, things like:
    - Criminals who are sure to be tortured and killed by other criminals upon release from prison can request to be euthanised to avoid this, or it could be they’re repeat offenders who have no hope and are sure they’ll just repeat offend again, they could get depressed enough to request euthanasia and due to their history and outlook it is highly unlikely they will accomplish anything good and hence could be considered.
    - People who have suffered emotional damage due to abuse or other similar trauma and would prefer death to living with their memories, as long as they are essentially paralysed by their history and haven’t responded to counselling they could apply
    - People born with severe mental illness, who have been institutionalised could potentially be considered as suffering enough to warrant euthanasia with some education of course to inform them of their choices
    - People born into poverty who can’t hope for anything except starvation and death, the cost of ongoing health care and support would be much greater than giving them the option of avoiding their suffering, obviously a streamlined process would be needed in this case

    I hope you see by those examples, that there is a very fine line between committing a morally reprehensible act and ‘playing the odds’. Deciding which is which most of the time in my opinion will be beyond any committee and hence while euthanasia is a nice idea ultimately it cannot be implemented, there is too much scope for misuse and odds are if it were to become mainstream it will do more harm than good.

    By the way Happy 80th Birthday today :-)

    Sante,
    Petch

    • grandad says:

      Hello Nathan, thanks for the well wishes for my birthday, sorry I have taken so long to comment on your devil’s advocacy, since turning 80 I seem to have less time than when I was a mere 70.
      I have read your comments a couple of times and find that you seem to be making the same mistake as I was trying to high light in my blog. Your comments are very much in line with the thinking of the law and religion and those that think that they are doing good.
      The problem with that thinking is that it assumes that every one knows what is wanted except the person that is in need of the decision! For example, you talk of abuse of the system but if you are asking the individual what he/she wants, then the system isn’t involved.
      Now I’m so old I can talk with some credibility, I don’t want to be kept alive if I am not who every one knows me to be, i.e. I have dementia.
      I know that I may not actually be suffering but my children and family will be burdened by having to support or tend someone that is equivalent to an adult child going back to infancy. If they put me into a home then they have an expense which waste money because there is no cure, if they tend me it would be an awful job. I used to heave when changing my children, goodness knows how I’d go changing an adult.
      I don’t mind the community keeping my body breathing and using it for research or amusement, but, if that is what they want, then the community should bear the cost. I haven’t worked all my life to burden my family with a useless carcass.
      Further to some of the other comments, if someone is sentenced to a long sentence in prison, they should be able to opt to be put to sleep, not as a punishment but to terminate a terrible suffering that could be being experienced in prison.
      Also if one has suffered a terrible debilitating accident or sickness which is causing suffering which is seemingly unending, then they should be allowed to ask for the suffering to be terminated in a humane way.
      The use of euthanasia should always be tested and the consequences explained to the sufferer but eventually the sufferer should have the final say. Also when the consequences are explained they should not include the rubbish about suffering hell fire and the like.
      I believe the original laws covering euthanasia in the Northern Territory were very good and gave adequate protection to persons wanting to terminate their lives but they were overruled by Kevin Andrews on religious reasons which had no regard to what the persons concerned wanted. Kevin was more concerned with getting himself into this bogus place known as heaven than he was about the suffering of the individuals involved.
      The one time that euthanasia is subject to greater scrutiny would be in the case of monsters ( brain dead for example ) at birth. Here I can’t justify keeping these poor creatures alive ( breathing etc ) knowing that they will never amount to anything other than a possible means of supplying spare parts. I wouldn’t put the responsibility onto parents in such cases of birth defects but would have the medical profession decide whether there would be any future for such a creature. Parents would make decisions based on their own feelings without too much regard for the long term prospects of the creature being considered. I don’t know about you, but I don’t feel sympathy for these poor creatures when I am confronted by them, I just feel annoyance that they are kept alive more like a demonstration of all that can go wrong with life. No other creature commits such an obscene act!
      Other than for the birth of monsters, I never suggest that the death sentence should be imposed by law, as a punishment or as a service to carers that have reached the end of their tether, euthanasia should only be at the request ( immediate or by testament ) of the person under
      question.
      Regards John

  5. Gemmell says:

    I agree that there should be a choice for those in pain. I think that’s really important. If I’m terminally ill, I want to choose to die, not be kept alive just to improve the countries average life expectancy.

    However when you start to create rules about it it all falls to bits. Having doctors say when a baby should be terminated or not is many levels of woe. So sure – if a baby is completely brain dead then that’s OK, but what if they’re only slightly deformed, and you don’t actually know what that will do – where’s the line drawn? And then there’s the parents anguish at having a baby taken away – they don’t understand the doctors jargon, why is their baby being taken away?!

  6. Gemmell says:

    Actually – I had an idea for being able to do euthenasia when euthenasia is illegal. It’s elective surgery with a 99.999% chance of death during it. You run it totally as a surgery clinic, you don’t advertise that it’s euthanasia or anything – e.g. you’re trying to upload conciousness to a computer system – and you ARE actually trying to do that – it’s just that the brain scan kills them pretty much all the time. People who want to die will find out about the elective surgery and take it. It’s not just euthenasia, you’re actually trying to progress science a little.

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