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  • #16
    Originally posted by mrb View Post
    I guess one of the useful bits about being vented are that I can't leave the house without a portable suction machine in a bag or trache emergency kit also bagged. My DNR and Advance Directives go in there. My wife also has Lasting Power of Attorney and can halt any procedures if she knows I wouldn't want them. One of the dilemmas we do have is how the law would treat her if I died on one of the nights she looks after me by herself . Not getting treatment could be seen as assisting my death and really she should call paramedics and then say I don't want treatment which seems crazy. I just hope that if I do die at home one of my care team is with her to avoid any legal problems afterwards.
    The idea that your wife would follow your directions, and that leading to the potential of her being charged makes my blood boil. You are completely paralyzed, you are completely dependent, so dependent but you need a machine to help you take every breath it is not un rational to rather be dead. When you hit a certain vertebrae bad enough C5 and up that line is crossed and it is no longer un rational rather be dead than live like that! She would be doing the right thing!! How do these doctors leave people in such terrible, painful, undignified frankly often pathetic positions and consider that a treatment job well done, let alone use depression as an argument to keep said person trapped in such a existence!

    Please do not be offended, I completely understand your rational thoughts and they are completely rational to want to die in your position; I mostly speak about myself above I find bowel care and being dependent deplorable I find it sick that I begged to be left in that ditch, and that I fought in acute-care numerous times to die only to be shipped off to rehab, where they "teach me" how iam going to live from now on be penetrated and taken care of and how it's perfectly acceptable in fact strong because I bumped my spinal cord!! Like I don't know what fucked up naive scared Barney sugarplum logic that is but all it screams is to fuck with dignity and honour!!! Hey at least you keep breathing, suns up birds are chirping praise be Jesus you should be happy here's an antidepressant to help with that!

    Oy vey, then there's people just concked out beyond belief, nothing there, no personality no speaking nothing works but the shit and piss still leaks oh and modern medicine chooses to keep them alive until something horrible finally comes and wipes them away. And the family usually come and visits once in a while to absorb their guilt and/or because they have no idea what else to do. If i ever become a fucking self-respecting man again that can protect myself or those that I care about, I'll never leave my parents like that. I've seen people leave their parents like that,now that I've lived like this I'd never be able to be ignorant to what they're doing to them how they're managing everything I could I wouldn't be able to sleep knowing they're trapped in some building,trapped in them selves laying in their own filth, having it pulled out of them not a shred of dignity, well all the nurses Twitter and facebook till their next dose of "precautionary" drugs.… dead but not at peace, it makes me so sick... But we rather just not talk about it, fuck it leave everyone like that, as long as air is going out of their lungs let's make it last as long as possible even if we have to use a machine to do it, let's keep a tally, let's see who doesn't best. We don't even do this kind of shit to our dogs, and thank GOD for that; Id literally kill someone trying tokeep a dog in its suffering they are simple, loyal, honourable creatures and don't deserve that, nothing really does... There has to be someone there to make a choice, to justify that it just blows me away that a doctors moral compass are so fucked up that they are more content leaving people like that for months maybe even years, rather then letting them drift in to peace, into the inevitable... THATS FOR THEM, that's not for the patient there's no argument there, that whole notion "were supposed to help people" is just a front, A white Shield. if you didn't want to have to pull the button medical intervention should not have been given is the most likely outcome was so dismal.
    Last edited by JamesMcM; 06-20-2016, 09:44 PM.

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    • #17
      Originally posted by stevegalliazzo View Post
      James your posts are interesting. They have opened my eyes to the living conditions of some of us.
      I am from a small town and feel trapped here even though I get out quite a bit.
      Living in the city must be difficult
      Please do not be offended by my psots as I seem to have little else to do but kill time on here.
      Steve, vent brother, that's what this site is for.

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      • #18
        Originally posted by mrb View Post
        I guess one of the useful bits about being vented are that I can't leave the house without a portable suction machine in a bag or trache emergency kit also bagged. My DNR and Advance Directives go in there. My wife also has Lasting Power of Attorney and can halt any procedures if she knows I wouldn't want them. One of the dilemmas we do have is how the law would treat her if I died on one of the nights she looks after me by herself . Not getting treatment could be seen as assisting my death and really she should call paramedics and then say I don't want treatment which seems crazy. I just hope that if I do die at home one of my care team is with her to avoid any legal problems afterwards.
        I would make an appointment with your local Fire Chief or whoever handles Paramedics/EMT services where you live and get this part figured out. The way I understand the law overall in the USA is that even with a DNR if someone calls 911 the responders are bound to do everything possible to keep you alive. So if you have a living will, advance directives both with copies to all your doctors and local hospital/s then your wife should be able to just call your physician to report your death at home as long as it does not appear to be suicide. I would also ask the FC if he or someone else can tell you if autopsies are required when no doctor is present and who pays. Hospices do this all the time. But if you do not want medical intervention do not call for an ambulance.

        You should have already discussed with your doctors that it is your choice unless someone has declared you incompetent to refuse medical care. Literally, you need to ask each of your doctors if they are comfortable with your decision making on future medical care. If one isn't then ask if they can suggest someone who is more in line with your beliefs. Try to avoid very young doctors. Right out of medical school and residency and they see all living patients as "a win" generally.
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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        • #19
          Originally posted by Sue Pendleton View Post
          I would make an appointment with your local Fire Chief or whoever handles Paramedics/EMT services where you live and get this part figured out. The way I understand the law overall in the USA is that even with a DNR if someone calls 911 the responders are bound to do everything possible to keep you alive. So if you have a living will, advance directives both with copies to all your doctors and local hospital/s then your wife should be able to just call your physician to report your death at home as long as it does not appear to be suicide. I would also ask the FC if he or someone else can tell you if autopsies are required when no doctor is present and who pays. Hospices do this all the time. But if you do not want medical intervention do not call for an ambulance.

          You should have already discussed with your doctors that it is your choice unless someone has declared you incompetent to refuse medical care. Literally, you need to ask each of your doctors if they are comfortable with your decision making on future medical care. If one isn't then ask if they can suggest someone who is more in line with your beliefs. Try to avoid very young doctors. Right out of medical school and residency and they see all living patients as "a win" generally.
          If only it was that simple, there isn't anyone in charge of emergency services, calls just go to a call centre and local crew respond, we've tried to get agreements in the past on which hospital I'b be taken to in the event I agreed and couldn't get that sorted! I have spoken to doctors and district nurses who know our concerns but no-one can guarantee what would happen if I were to die as that is in the hands of the police and Director of Public Prosecutions. I was classed as not having capacity to refuse medical treatment whilst in hospital by one lunatic psychiatrist have been re-assessed since then and am deemed to have capacity. I was seriously ill over christmas and very recently, district nurses brought sedatives so that if my breathing deteriorated to a point that I was suffering they'ed sedate me. That is great if it is a slow, gradual decline but for example 2 weeks ago I was vented with huge amounts of oxygen, being suctioned continually with sats still dropping, got down to 63% before I responded. That took about 30 minutes and my wife and carer didn't know when to call nurses and that I might be dead by the time they arrived as it isn't a fast response emergency service.

          We are trying to work through the legal aspects informing all medical professionals we deal with of my wishes so no-one can question her actions if/when it does happen.

          Comment


          • #20
            Originally posted by JamesMcM View Post
            The idea that your wife would follow your directions, and that leading to the potential of her being charged makes my blood boil. You are completely paralyzed, you are completely dependent, so dependent but you need a machine to help you take every breath it is not un rational to rather be dead. When you hit a certain vertebrae bad enough C5 and up that line is crossed and it is no longer un rational rather be dead than live like that! She would be doing the right thing!! How do these doctors leave people in such terrible, painful, undignified frankly often pathetic positions and consider that a treatment job well done, let alone use depression as an argument to keep said person trapped in such a existence!

            Please do not be offended, I completely understand your rational thoughts and they are completely rational to want to die in your position; I mostly speak about myself above I find bowel care and being dependent deplorable I find it sick that I begged to be left in that ditch, and that I fought in acute-care numerous times to die only to be shipped off to rehab, where they "teach me" how iam going to live from now on be penetrated and taken care of and how it's perfectly acceptable in fact strong because I bumped my spinal cord!! Like I don't know what fucked up naive scared Barney sugarplum logic that is but all it screams is to fuck with dignity and honour!!! Hey at least you keep breathing, suns up birds are chirping praise be Jesus you should be happy here's an antidepressant to help with that!

            Oy vey, then there's people just concked out beyond belief, nothing there, no personality no speaking nothing works but the shit and piss still leaks oh and modern medicine chooses to keep them alive until something horrible finally comes and wipes them away. And the family usually come and visits once in a while to absorb their guilt and/or because they have no idea what else to do. If i ever become a fucking self-respecting man again that can protect myself or those that I care about, I'll never leave my parents like that. I've seen people leave their parents like that,now that I've lived like this I'd never be able to be ignorant to what they're doing to them how they're managing everything I could I wouldn't be able to sleep knowing they're trapped in some building,trapped in them selves laying in their own filth, having it pulled out of them not a shred of dignity, well all the nurses Twitter and facebook till their next dose of "precautionary" drugs.… dead but not at peace, it makes me so sick... But we rather just not talk about it, fuck it leave everyone like that, as long as air is going out of their lungs let's make it last as long as possible even if we have to use a machine to do it, let's keep a tally, let's see who doesn't best. We don't even do this kind of shit to our dogs, and thank GOD for that; Id literally kill someone trying tokeep a dog in its suffering they are simple, loyal, honourable creatures and don't deserve that, nothing really does... There has to be someone there to make a choice, to justify that it just blows me away that a doctors moral compass are so fucked up that they are more content leaving people like that for months maybe even years, rather then letting them drift in to peace, into the inevitable... THATS FOR THEM, that's not for the patient there's no argument there, that whole notion "were supposed to help people" is just a front, A white Shield. if you didn't want to have to pull the button medical intervention should not have been given is the most likely outcome was so dismal.
            Keeping me alive was called duty of care although no-one actually cared about my wishes. My first words coming round in ICU were "turn the machines off" but no-one did despite me asking a lot more times and then trying to chew through the breathing pipe.
            I see it the same way you do, you wouldn't keep a pet alive like this, I'm totally dependent on others and have little quality of life, yeah, I work, go on my fes bike, get out in my off road wheelchair but I force myself to do this just so I have some semblance of a life that doesn't involve being prodded or handled.

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            • #21
              We have to force our selves to do everything. It is part of the chore. I have thought a lot about how long I will live with this disease.
              I am in a lot of pain and it overtakes me all the time. Plus it is all I fight with.
              Trying to determine the end isn't going to be fair but you should have that right. I feel like that has been taken away from me because you are supposed to be happy and look forward to things like enjoying a meal or cup of coffee.
              Your situation is difficult and I understand every word you are saying about sci life and when you have had enough.

              Comment


              • #22
                Originally posted by mrb View Post
                Keeping me alive was called duty of care although no-one actually cared about my wishes. My first words coming round in ICU were "turn the machines off" but no-one did despite me asking a lot more times and then trying to chew through the breathing pipe.
                I see it the same way you do, you wouldn't keep a pet alive like this, I'm totally dependent on others and have little quality of life, yeah, I work, go on my fes bike, get out in my off road wheelchair but I force myself to do this just so I have some semblance of a life that doesn't involve being prodded or handled.
                One in the same man I feel for you, really do; I only wish you peace in a dignified manner best as possible! When that fucking guy found me in that swamp I told him to kill me pretty much assumed he'd have the capabilities to cave my head in that was a bit ridiculous of me, but at that moment although I wasn't panicking I had calm down took me about 30 seconds to do so, I just knew that with the dwindling air in my lungs I had to make sure that I wasn't saved! So when he declined my first request, I just told him to leave me, I remember in grabbing me pulling me close probably fucked me up saying that's not gonna happen whether it was him grabbing me or not that's when I drifted off...

                You and I, should not be here! With our conditions we should've been given a choice, the poor guy in Quebec that poor girl that did it in a group home to name a few should not of had to do that! It's pretty sickening, because at the end of the day each one of us were forced into all of the caregiving, all of the procedures that really made us question our existence, They may be gone though but it still happened to them and that's not right! These fucked up procedures made me lose all self-respect, made me hate The medical field, made me see a side of people,mentality that others call uplifting but make me sick to my stomach to be a part of/ associated with by default! I want a treatment for us more than anything, but I don't want anyone to live like this in the meantime if at any point time of injury, day after injury, year after injury they don't want to!
                Last edited by JamesMcM; 06-22-2016, 10:06 PM.

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                • #23
                  I can't argue with any of that James, we are intelligent and can make informed decisions what really winds me up is the medical professionals playing god and religious lunatics pretending they represent god. If god existed he'd f'cking step in and fix us or kill us not subject us to years of torture.

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                  • #24
                    I have to chime in.
                    We live within in our own little worlds even if we don't like what has been given to us. Finding an answer to this life is not easy. everyday seems like a repeat of the day before and the next day will be the same. I question why I struggle so much. Mentally and physically. We have been dealt a shitty hand(literally as I have bowel problems) and get the joy(not) of having to live with a serious disability. Some injuries seem to be much worse than others. My injury is C-7 but it is high enough and bad enough that I seemed to be engulfed in misery. I ask why lots and do not have an answer. God seems to be punishing me for some horrible sin that I did when I was younger.
                    My injury slowly overtook me over a period of 3 years and now all I do is pay.
                    When they were going to operate to fuse my spine all I wanted to do was go under so I could have a break form pain.
                    I have found that there is no answer and there is never a break so you just carry on.

                    The medical system has failed me and will not be my friend.
                    In this day and age it should not be so difficult and I hope it gets easier.
                    My only point I guess is that we are here to be guineas pigs for the future of mankind and hope our little lives are of some value in to the future. The hear and now seems to just suck and getting through a day or a doctors appointment seems to take forever.
                    Hopefully there is a reason for this and my life can make sense to me at some point.
                    Being a bother to myself and others seems to come with the territory.

                    Comparing myself to others in this world seems to just lead to more disappointment and is pointless.

                    I wish there was a goal post and it was closer instead of being just out of reach all the time.

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                    • #25
                      God isn't punishing you, shit happened and you are dealing with the consequences. I stopped looking for answers a long time ago, probably just after I'd made the decision to stop it all. Even that wasn't possible the only answer is to be tortured until my body gives up and hopefully then the medical professionals will accept my wishes.

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                      • #26
                        Originally posted by stevegalliazzo View Post
                        I have to chime in.
                        We live within in our own little worlds even if we don't like what has been given to us. Finding an answer to this life is not easy. everyday seems like a repeat of the day before and the next day will be the same. I question why I struggle so much. Mentally and physically. We have been dealt a shitty hand(literally as I have bowel problems) and get the joy(not) of having to live with a serious disability. Some injuries seem to be much worse than others. My injury is C-7 but it is high enough and bad enough that I seemed to be engulfed in misery. I ask why lots and do not have an answer. God seems to be punishing me for some horrible sin that I did when I was younger.
                        My injury slowly overtook me over a period of 3 years and now all I do is pay.
                        When they were going to operate to fuse my spine all I wanted to do was go under so I could have a break form pain.
                        I have found that there is no answer and there is never a break so you just carry on.

                        The medical system has failed me and will not be my friend.
                        In this day and age it should not be so difficult and I hope it gets easier.
                        My only point I guess is that we are here to be guineas pigs for the future of mankind and hope our little lives are of some value in to the future. The hear and now seems to just suck and getting through a day or a doctors appointment seems to take forever.
                        Hopefully there is a reason for this and my life can make sense to me at some point.
                        Being a bother to myself and others seems to come with the territory.

                        Comparing myself to others in this world seems to just lead to more disappointment and is pointless.

                        I wish there was a goal post and it was closer instead of being just out of reach all the time.
                        There's a difference of it being hard to carry-on, or finding a reason being difficult etc. to keeping someone alive just being wrong, not that it's easy, not that it's hard it's just plain wrong! That's where questionable things like disgusting undignified procedures, being dependent/burdensome, severely disfigured to the point you don't even look human, or worse not even really being alive just in a constant state of existence barely breathing yet still kept alive! The latter they will not find a point to live, they will not find ANYTHING! They are not there, they will sit and rot until something finally happens where they aren't able to bring them back! When it comes to high quadriplegia, completely different story but at the same time when you are so severely paralyzed you really have slim pickings in life, there are only so many options none of which they can actually be done independently whenever/ however you want to. With that in mind we are all still individuals, we enjoyed what we enjoy, we like what we like, we are who we are some people will never find something as simple as a hobby let along something as big as a purpose with options this Limited! At the same time even if they could if their line is crossed that does not matter, they will not want to find a purpose in such a "life".

                        You're damn right we are the guinea pigs for the future, and we should be able to put/take any attempt to treat our disability if we'd rather be dead anyways, if we have no independence no freedom! Yes hopefully we benefit ourselves give us , Some reasonable function that others have been so fortunate to keep (so we can also be the ones making videos going up-and-down stairs, in and out of beds,showing how much we can still do etc. ), but also be a test and a evaluation to help move said treatment forward to perfection, so that nobody in the future ends up like us! But we don't even have that option, I'm sure most of us would pay even still.…

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