Whose choice is pallitive care?
As the title asks...
Whose Choice is Palliative Care?
A rattling telephone call
As a kidney patient, I have dealt with a lot of the issues that encompass the effects of renal (AKA. "kidney") failure. Currently facing issues that things are only going to get worse, as they are doing. And any chance of a normal healthy life are fast diminishing. And the best possible scenario of health has long since gone. I look to the subject of endings and new beginnings whatever that might bring. With the hopes of gaining more understanding of peoples judgements derived from their own fears about what death might bring.
Is ending treatment suicide, or accepting the shortened life as it would be without medical interventions? An outcome which is going to happen sooner or later anyway.
Is it selfish to believe that people should fork out to keep me alive despite the fact that I probably either wont want to, or feel able to give back, or have anything left to give anything back with. I'm not likely to ever be able to have any effectiveness in any of our glorified nations terrorist conflicts. Nor am I ever to be able to drain its material resources by treating the sick. Or be of any use with no energy thus unable to entertain the masses! So what is my purpose? Am I just here to prop up the egos of those who are able to drain NHS resources and treat the sick, as well as to provide audience for those who like to show off.
Well, what else is there? I eat and drink and live providing gratification for those that provide such services.
Is suicide a crime? The way one doctor shouted and carried on, one might think it was a crime -against such people making money out of other peoples suffering!
Is it suicide to choose to end treatment in life threatening illness?
Is Ending treatment the same as committing / attempting suicide?
Bad Mouthing! Helpful, or just making the patient feel worse?
What's in it for me?????? A woman on the helpline was full of morale judgements and guilt trips. I'm sure she left the conversation feeling better. I felt trapped to add to my depression, frustration and isolation. Nor did she answer my question. This I got from a nurse. I'd simply ask to speak to the doctor, who would recommend I also speak to a renal psychologist. Though as I understand it, the latter isn't mandatory so long as they know I am doing it for the right reasons. I feel a letter will help to demonstrate my strength of feeling and length of thought and time that I have put into my considerations of this as a viable option.
I intend therefore to write at first not to say this is what I am doing. But to indicate that this is something that may be for me down the line at some point. I already had a living will drawn up some years ago. And waited a few months before handing it in to the medical people, family etc. I might ask for written confirmation that this has been recieved, and keep sending copies until I get it. Logging the dates of each letter.
In all honesty I will always wonder, if lingering on doesn't hold some lessons. But lessons I don't feel ready for. Why do people become obsessed with making school life as painfull as possible? Death will come anyway. Why go to it? Is there nothing that can be gained from seeing what the next day brings. Even if it is more pain and misery, at least I can add another day to the count in my overall or general ability to survive.
The woman on the phone didn't help with comments and dramatised statements such as:-
"What about those close to you! Have you thought about them?"
I mumbled "My mum 'd be upset. But she'd get over it." ...perhaps a lesson in life!
Have my loved ones considered me? Not least the burden my illness will put on them. Especially as they have their own illnesses. And also I have proof that they are not prepared to "care" as in the professionalised skill. That is as far as the feeling goes, I know they care very deeply. And would reassure them wholeheartedly that this is not in question, nor anything to do with my reason to return to the maker. As for the "professionalised" side, I am firmly of the belief that if even the professionals knew enough there would be cures anyway!
I also know we don't get on well, when under the same roof for long periods. So trying to go on would only add to the misery, and wish to return home to The Maker of all things.
I was told "you're being pessimistic!" labelled as outcast for not agreeing with the uniform decision of life at all costs. I've suffered a long time being outcast both by those that I tried to be friends with due merely to their close location, and those who I lost due to reduced sense of self orth due to wasted efforts and failings with those proximations reducing self esteem significantly to feel I didn't know how to befriend. And thus didn't try. etc.
If I am pessimistic it is because there is much reason to be this way. If I can't get the work done that is the only reason I have left to be here, because of said illness/es, then it equals that I have nothing to remain here for. And NO, there is no-one who could help me. \No-one I would trust to would want to help me. I never ever want to be in a position where I need so much help when so much is unknown! That is me, and no-one can/could change that, nor would I want them to try. I got a small taste of freedom before I became ill again. It wasn't enough. Freedom is a MUST. No good to be locked up, put here or there, or done this or that to at other peoples beckon call. Life is sacred, but that isn't a life, merely an existence. ...Or am I in playing with words missing the point of the correction? Does it mean that even in suffering there are things that can be gained? I can't however save my soul with suffering alone. But how have I been so bad as to be required to work through it to save my soul? Is it a question of bad at all? Or simply ways of things, rules of being and such?
Why then am I rejecting life? ?Just because it hasn't gone the way I wanted it? Because it might never or probably won't ever now be what I wanted it to be. Or was told it would be.
So the comfort zone is lost. Am I feeling negative towards the phoneline because of the correction, or because of the way they tried to correct? Is it that those who hate being wrong will find fault in others to not feel so wrong?
I do have some days that are comparitively good where I do get things done. I'm writing this now. Had I not had the need to get things off my chest so strongly, I would be doing my work.
phoneline "how old are you (34), you see, it's still a young age!"
Yes. It is young. I kept silent and let her rant though. It is too young to have had any kind of healthy life where I could do things that would fulfill my potential. Too young to face the fact that I will never be a footballer, singer, psychologist. This now as there are other factors with the illness. Such is the nature of this that more and more things crop up over time. So much so that it would be a existence or "life" of coping with issues. There are still many issues with a transplant, lets not think of it as a cure, even doctors say it is only a holiday. And even a precursor to more illnesses later on! That's if it does work for any length of time. I don't think I would have opted for this even if I hadn't been thrown from the start by being told it was acute (short term), it's not it's chronic (for life). It would confirm to me I have lost. I would be living a life the loser. For me, it is not a fix at all!!!
I much rather put this whole thing down to mis-adventure. And face the consequences of that than be manipulated into a lie /f I didn't want in the first place.
If I wasn't getting a word in earlier on, after hearing her attempt to lie about Peritoneal dialysis (PD).
Who said that?
"It's just a precusor to a transpl."
If I was pessimistic, I've now more reason to be because now
I'm less trusting as well. Why should they even lie to sell it?
Had I said "I don't know, I've heard it somewhere" she would have tried to dismiss it. I know this because it was her tactic when I spoke of the rumour of the poor young Asian woman being badly treated at Halifax and having her wits so much scared out of her that she had to be committed.
she started to belittle the validity of "these rumours" until I pointed out that I had first hand proof of their largely failed attempts on me. I still have my freedom at least though due to the tricks that go on I felt unsafe to actually accept their modes of "counselling".
All such manipulations do is add to the layers that go together to make it pointless being here.
I once met an old man who had decided until being told that he had only about three weeks left that he started to consider dialysis. He asked my opinion, me with my qualms, frustrations and disenchantments of life. I was determined not to let my feelings of my position out, though neither would I lie to him. I pointed out that being young and needing dialysis could be just as big an issue.
"Your still young", 'you have to' or in his words "if I was your age I would."
He reasoned at 70 he had had a good "innings". And I couldn't argue with that. I didn't know him until that time, and I certainly couldn't comment on his life. Though inside I quite strongly felt envy at the point I saw he clearly had at least two or three good friends who wanted to help him and would do anything for him. He didn't want to put them out. That question is out of the window for me. The nearest I came to having anything remotely resembling friendship ended before it started. As they don't want to talk to me nor have anything further to do with me. That seems quite clear. So what reason do I have to remain?
Days of thinking would produce little more than blanks. I'll never be a footballer or singer, or study my psychology degree and become a counsellor. I'm too stressed out to be of help to those in a similar situation, what's more I've been told I can't do it. I won't even be able to teach that which I don't know because I never got there or was able to find health and strength long enough to study it. Nor will I ever get to show off my impressions to friends as they don't want to know me.
It became a question in my mind, perhaps from my own life which I had to ask.
"How far do you want to go with it?" He could take the path of pallitive care he was on without dialysis. His friends would say at his funeral about him having an innings better than most England cricketers. Or if he wanted have a go with dialysis to see if it is actually as scary as it looked. His friends would then be able to say "well, he went as far as he could with it."
His eyes lit up at this point. And I felt I'd done something to help. Even if it was (professional) "befriending" rather than counselling. But what is one without the other?
In short I feel that though I've missed out on alot, I got the taste of something resembling what I wanted to be doing had things been different, that I will remain grateful for. But I think that on a repetive basis I have neither the energy nor the support network to fall back on should I need it.
May God be with you, regardless of the path you choose for your life.
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