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Issues of Palliative Care concerning illnesses without cure

Updated on February 26, 2013

life staring at a wall is merely existence not life!

Nice wall paper!
Nice wall paper! | Source
Another wall ...zzzzzzzzzzzzzzzz
Another wall ...zzzzzzzzzzzzzzzz

my life my decision my consequences

thoughts on pallitive care in relation to dialysis treatments for chronic conditions.

The telephone line worker who said I was pessimistic. (fairly recently)
Frankly "Good!".
If I had a glow of optimism despite going through all this Rubbish then surely something would be wrong. I think they call such false highs things like "Hypo mania", and/or things related to what patients have called "being wired up wrong".
I'm being realistic and the gloominess just happens to be there as a consequence of all that is going on in my life annd around me etc.
Her not allowing me to talk it out didn't help anything. I felt more determined in fact. If it wasn't for the caring with acceptance of the patients wishes whom I phoned straight after, this might not have been written.

A Dr: on my announcing a wish for my fistula to be tied off before it burst or I would end treatment. As I'd been making my wishes known, and being ignored and refused for several years by then.
"It's suicide!" (a couple of years ago at different hospital.)
I argued, "It's letting nature take its course!"
The main difference is the former has a risk of failure, and 2. life is ended abruptly by the person.
The latter in my condition has no risk of failure, and happens gradually and naturally.

Is it Giving UP, or starting again?
... I considered this for a long time. If it were decided I was capable and willing to have another go. Then that may lead to a request to come back to try again. Which, if you believe in reincarnations, might be accepted or refused. Though I'm not an expert on this and must go solely from what I've come to believe among the people I've listened to and to some degree been helped by.

moot pioint:

A joke that seems laterally appropriate somehow.
There was my friend a Vicar, my friends friend being a Priest, and a Rabbi, their friend whom they went to college with. Who I don't know that well.
They found themselves with a windfall of money from their syndicate lottery win. And so got into a discussion about how to spend it, and what amount should go to charity.
The Vicar said, "We can draw a circle on the ground, throw the money up into the air, and whatever lands outside the circle we give to God."
The Priest says. "No, we draw the circle, throw the money up into the air, whatever lands inside the circle we give to God."
The Rabbi says, "We throw the money into the air and what God wants he keeps!"

Provision includes. Last Will, Living Will and perhaps a specialist doctor!

Have You made provision for palliative care?

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Is it the right time?

To reiterate, I believe when the time is right, I will have no fear of going certainly!, (and perhaps none of staying? -but that won't be the issue). And the drive I feel that keeps me here, without having to fight this. (please, do not fight this) will gradually fade of its own accord and become a drive towards The beautiful bright light that I've heard psychics speak of. To fight the one drive one way is to fight it the other because the mindset becomes the same even when the scenario changes. I think...

But should the choice remain with the individual, over some, or any and all external body or bodies of people?
Yes, I think so. Doesn't the individual know when distress becomes too much? Either way, it can be torture to force somebody to go on whose given up the ghost. (as it were). Who wants to live in misery with a spark of hope fading in the distance of a time long ago where there may have been a chance if only enough had been known. Chances come and go so fast, they may come round again but are never the same. Often much damage has been done in the meantime. It's never as strong or romantic if it's "love".

But, there is NO substitute for expert guidance and proper and thorough planning!

Talk to the experts

A Good place to start is your GP or Dialysis nurse or doctor. These can advise the next step and in the interim it may be useful to let them know, as well as family and friends what your current wishes are.
Be careful in your request. Just saying "I'm a renal patient can I have a palliative care leaflet" seems to lead some to panick! And may even respond with a refusal to help. It may be wiser to point out "I'm happy enough now, but if something happened and I was never going to be able to communicate again, I feel strongly that treatment would be a waste of time and money, besides being an emotional drain on my loved ones. I want to make sure people know my current wishes for every concievable eventuality!"

I say "current wishes" because these might change, or situatuations may present themselves where you want to add to or detract from your list of wishes. It may be that in going over things in six months time or beyond. You notice wording that made perfect sense at the time but now seems somewhat vague or unclear in some way, and so you may wish to have it re-written. A Palliative care doctor is good for such things as they see several people and thus know the general goings on, and can guide a patient through the various "Grey areas" etc.

A Living Will, this is done with a solicitor. The Palliative care doctor may advise or remind one of it in order to make sure it is fully up to date may need re doing every two or three years or so. I settled for a "No change in wishes, date" to be put on my file. I may go to redo in ten years, as that is coming up in about two years. It does seem silly though; a waste of my money to do it again when everything is the same and the wording is clear enough.

Last Will and Testament. I chose to make a brief outline with a solicitor. Saying that I include a separate list with what I wish people to have. This way I can change my mind without having to tear the whole will up and pay again. The advise was: "Make sure there is a list with the will."
I am not the best person to advise about inheritance tax as I don't have enough savings -Thankfully to qualify to be penalised by it. I would however have made arrangements to spend it or pass it on first down to the point below the threshold were I in that bracket. If I could.
I don't think any-one will try to bump me off, but have a couple of witness copies anyway.
The only changes I will have to make is if something happens to one or more of my parents. Or Executor/s as is. Because I will need some-one to inherit other than the government. (I've gone of the government due to the way I've been treat)


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    • days leaper profile imageAUTHOR

      days leaper 

      6 years ago from england

      Tuesday 26 February 2013: I am very sad today because a good dialysis friend died aged about 76. His health had been deteriorating for awhile. And he will be happy where he is -Heaven, ~I hope! Now.

      To, Eric R.


    • Absent Friend profile image

      Absent Friend 

      9 years ago

      It has to be your own choice, no one should pursuade or disuade you, as you know most about your self and the way your life is going. But do consider how loved ones will feel, and particularly the consequences on any dependents. Will they blame themselves, suffer financially, emotional problems may affect their schooling etc. Much to consider.


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