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Does a dependent still have the right to decide?

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  • #16
    Originally posted by chick View Post
    You can verbalize - you can orally terminate all of your caregivers, in person.

    You can use the phone - you can orally terminate all of your caregivers by phone.

    You can type - you can email or snail-mail and terminate all of your caregivers.

    If you want to be left alone - you CAN be left alone.

    The ONLY reason one proclaims to want to be left the fuck alone but CHOOSES not to do any of the above is that they DO NOT want to be left alone. What they truly desire is to continue living what they call a miserable dehumanizing existence, or is at the very least, afraid not to.

    Everything else is just the excuses of a scared and weak minded person grasping desperately to whatever meaningless life he feels is left for him, and trying to get some validation for his endless excuses by typing those same excuses over and over again.
    Chick well written, very thorough "Weak minded" and all that... But just so know I just indepthly explained the reality of the situation that is this thread, and the motivation behind it's inception as well as sort of addressing yours and oddities, scrapers responses as a whole ( hard to do without going completely off subject because they weren't relevant to the conversation). This exact same thing has happened to other threads I've made that end up this way thanks to basically the same people. Take a gander through it above^^^ maybe you'll understand, it's quite long though. Or just simply cut out yours, oddity, and scrapers posts and only look at "everybody" else's me, Mrb, Denied , (not mine that are in response to one of you guys.) and you can very easily tell that the context of the conversations has little to do with me, my motivation, my individual Situation in any regards. It's about the entire picture, at least as large as one country. My God guys put your claws away, the only interpretation of your life that matters is your own who cares what I or anyone else says! I agree everyone should argue with a point they don't agree with if they have the time but there is no point in getting so defensive that your just on the lookout leading to complete and frankly embarrassing miscommunication!
    Last edited by JamesMcM; 10-02-2016, 12:32 AM.

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    • #17
      The easiest way to do this in most western countries is to wait for your next UTI or other infection. You can maintain caregivers for daily custodial care and ADL care but reject any actually medical intervention such as seeing a doctor, taking antibiotics or even being admitted to a hospital. You'll need a DNR or aid filed with your doctors and any local 911 and your normal hospital in advance. All of those you can cancel verbally if you change your mind. But be aware that when you decide to reject treatment that most doctors will also cut off further anti-spasticity and pain meds unless you have terminal cancer. Some paid caregivers may leave due to a religious or other objection they have but as long as you are competent you can reject actual medical intervention.
      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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      • #18
        Originally posted by Sue Pendleton View Post
        The easiest way to do this in most western countries is to wait for your next UTI or other infection. You can maintain caregivers for daily custodial care and ADL care but reject any actually medical intervention such as seeing a doctor, taking antibiotics or even being admitted to a hospital. You'll need a DNR or aid filed with your doctors and any local 911 and your normal hospital in advance. All of those you can cancel verbally if you change your mind. But be aware that when you decide to reject treatment that most doctors will also cut off further anti-spasticity and pain meds unless you have terminal cancer. Some paid caregivers may leave due to a religious or other objection they have but as long as you are competent you can reject actual medical intervention.
        Oh yes I understand that that would be the most logical approach to take. I merely asking a hypothetical question, as to whether this is society notion is everyone is expected to subscribe to The dependent lifestyle if that is what life offers them. To answer that question best, I created a hypothetical scenario slightly based on a personal experience if one was to tell his caregiver I no longer need your services I just want to be alone from now on and or said the same thing to a government organization like CCAC, and either of them call the authorities in response. Could a complete quadriplegic dependable individual be received a "formula 8". If they can I think that is absolutely preposterous and I would be curious as to how that situation would play out, personal interests/motives aside only for the sake of curiosity and principal, as well as sympathetic/passionate to the situation.


        Recently I've had some internal problems lypase at 900, potential pancreas problem,definite spleen issues as well and obviously extreme aabdominal pain that is making my spasms worse, and could be the culprit that is causing untreatableas well as undiagnosable frequent daily fits of dysreflexia. I got an abdominal CT at first a resident completely screwed up the analyzing of the scan, then over the next few days they found more and more abnormalities; at the same time as an inpatient ( after they moved me to internal medicine unit) the doctor said that the scans are not 100% conclusive at best 30% and my condition makes it extremely difficult and much more complicated basically concluded we have no ideawhat's going on other than a few obvious observations, I've been having to go back-and-forth to get different blood tests (One thing we are thinking is that my spasms are squeezing my abdomen so hard constantly they are doing internal damage, for one thing my spleen apparently is showing signs of trauma releasing cells that are actually creating small spleen like growths I can't remember the term, as long as it doesn't get out of hand should be harmful, disgusting thoand bothers me. but my blood work is always abnormal to very concerning). Spend a few days fasting and receiving liquids through IV etc. when she told me this, I thought of my past experiences The seven months in acute care (pneumonia, blood infection, numerous bedsores, collapsed lung, MRSA, multiple aspirations and Bronch, ventilator dependent as a C-5, inflammation swelling my entire body etc)over the years spasms that are untreatable and against common outcomes where they get weaker/less frequent over time mine have in fact steadily got worse in every wayover time, I thought of the osteoporosis that is spreading and untreatable, I thought of all the various different types of chronic infections (three life-threatening) I have had with no real way of preventing them happening again, chronic antibiotic use leading to antibiotic resistance and superbugs. Bladder/ kidney stones, and no real way to properly manage the bladder, tendon damage occurring in my shoulder despite the fact I do not transfer and I use an electric wheelchair and I'm only four years post most likely from using Cipro too much but again no conclusive diagnosis and no way to treat, the synrix on my spinal cord causing more nerve pain and spasticity again nothing conclusive no treatment other than extreme measures and only if it moves upwards not if it moves downwards completely destroying the spinal cord and any hope for future treatments with it, spinal atrophy, muscle atrophy, bladder shrinkage, drop foot, joint damage all untreatable literally rotting from head to toe nothing to do but excepted at best half ass options that do nothing even close to reverse the damage or treating. Then my very serious issue with autonomic dysreflexia not being able to figure it out, random unexplainable sweating in the modern medicine doesn't even really know the cause of, doesn't know the long-term implications of etc. After four years and having the shit end of the stick for almost every potential secondary complication and modern medicine offering nothing more than meds after meds, to extreme surgeries both of which are quite often of a little of fact, extremely dangerous, and riddled with their own Long list of side effects. So finally with this new most recent issue, and as I said after dealing with so much over four years none of which had any conclusive answers, and now this latest escapade gets the same vague interpretation unable to diagnose and unable to treat, sitting in the hospital for probably the hundredth time literally I looked The doctor dead in the eye, explained my past and my situation; expressed my very justified truthful reasoning that modern medicine is useless on basically every front for severe quadriplegia I simply asked "why do you keep people alive like this, if you can't do anything about the paralysis yet you can't even do anything about even one of the secondary complications" by the time I had finished A veteran internal medicine doctor was literally almost in tears, had to leave the room and never came back to look me in the face. Hours later after she composed herself she has the audacity to grab my mother while she was walking in the hallway to kindly pointed out that she had flagged my file, and said "I wasn't in a good state of mind" apparently my mom put her in her place, evidently she was too cowardly to say that to me. And my mom didn't tell me till days later as I was very ill and she knew How out raged I would be.

        When it comes to sci level and severity in terms of function are not the only variables. Every aspect of our bodies react individually, The many potential secondary complications are never the same in each injury some people are blessed like a C-5 I have known no spasticity, bladder so calm he has managed it with a condom catheter for over 20 years, barely knows what dysreflexia is etc. evidently others are lucky and they have moderate complications, others are horribly unlucky in these cases evidently you will see how truly useless modern medicine is not just in regards to treating the actual injury. Like for a unfortunate young man Who situation has been introduced to me by another quadriplegic (who is very lucky and realizes it both functionally as an Asia B and secondary complications wise). From what he told me this young man is trapped in the hospital because of dysreflexia alone, they cannot explain why it keeps happening and it is so severe that it actually causes him to break out into seizures he will likely suffered permanent damage ( it's believed his youth is his only saving grace at this point) and become more disabled and will most likely die (badly) eventually because of it. Modern medicine knows nothing, they should not be holding expectations unless they fully understand the condition and every possible variable/individual case of it,.

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        • #19
          Originally posted by Sue Pendleton View Post
          The easiest way to do this in most western countries is to wait for your next UTI or other infection. You can maintain caregivers for daily custodial care and ADL care but reject any actually medical intervention such as seeing a doctor, taking antibiotics or even being admitted to a hospital. You'll need a DNR or aid filed with your doctors and any local 911 and your normal hospital in advance. All of those you can cancel verbally if you change your mind. But be aware that when you decide to reject treatment that most doctors will also cut off further anti-spasticity and pain meds unless you have terminal cancer. Some paid caregivers may leave due to a religious or other objection they have but as long as you are competent you can reject actual medical intervention.
          The caregivers you want to keep for daily custodial care may decide not to stay when they figure out what you are doing.
          Alan

          Proofread carefully to see if you any words out.

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          • #20
            Originally posted by alan View Post
            The caregivers you want to keep for daily custodial care may decide not to stay when they figure out what you are doing.
            Oh they most definitely won't unless you're in the hospital either way that's part of the extremely ugly process, and if they are family are you really gonna put them through that nobody thinks about these variables. But I'm speaking hypothetical here, I just wanted to know what could happen if a caregiver family member were to call the authorities on you because you were deciding to abandon treatment, again what hypothetically could happen what grounds they could take, I would've loved to hear personal experience from other dependent I do remember talking to someone on here that was put into a ward. And I was also curious that if a dependent called the police to have his live in caregiver removed and she explain to the police that there was no way that person could survive on their own, they want to get sick and die etc. would the police intervene where would they do their job and remove at that point the unwelcome guest and leave you to your own devices, show respect basically.

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