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Final treatment

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  • Final treatment

    Let me apologize up front if this offends anyone, that's not my intention.

    I've been searching old posts and looking to find any information about physician assisted suicide. The past couple years have become increasingly difficult working with nurses, family and trying to have a life. Night caregivers calling off is becoming more frequent and harder to cover. When the nurse calls off or can't come for some reason, like this past week, my parents and grandparents have to stay up to watch me, missing sleep and work the next day.

    Now, this is at a point that they are getting ill and have a long time to recoup and I don't fare well with lungs and pressure sores from lack of care. My mom was injured in the same accident I was, not SCI but every bone waist down was crushed. We have now been told that our primary weekend person is quitting and some of our backup is leaving.

    With these current events, I'm seeing a nursing home coming up in my near future. I have had and do have friends, also high quads, that have had this similar situation happen younger than I am. I have talked to and seen them waste away and suffer the last few years of their lives in ever increasing and worsening battles that they have succomb to.

    If this does end up being my only option for "care", likely within the next couple months, I would like to take the faster alternative than what I have seen too many times. Of course this is a last resort and only be used when the care facilities are my alternative.

    I've lived over 21 years as a vent dependant C2/C3 quad and have done many things that I proudly reflect on. I know what I would like to do given the alternative and be able to go quietly rather than 2-3 years of suffering from one problem to the next.

    Just wondering if anyone has heard of any such options in the US or if I would need to find alternatives when the time comes. As long as there is some hope, I continue to go each day at a time as everyone here does.
    C2/3 quad since February 20, 1985.

  • #2
    Have you a "Living Will" stating what you want done in case something happens to you that you can't say what you want?...My friend had one and he was able to died on his own terms...


    • #3
      I have not done one yet primarily due to parents' opposition. I'm hoping to do one farely soon though, it would be great if they were able to be done online.
      C2/3 quad since February 20, 1985.


      • #4
        Trainman, Oregon I think is the only state with a physician-assisted suicide law...I remember it passed in the 90s.

        I'm not even sure if it's on hold due to court battles, or not. I'd imagine that those seeking to do this would have to to very ill, probably even have been told they'll die in a few months.

        I'm not anywhere close to understanding what you have to go through each day, and it's a little unsettling to even respond to your question, but you seem serious. I hope there is a way for you to find peace, friend.


        I thought living wills were only for prevention of beng kept alive by artificial means...maybe I'm misinformed.
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        • #5
          This is a heartwrenching thread to read. I'm sorry and may you be blessed in whichever decisions you make.


          • #6
            No offense taken trainman. I have a living will.

            A living will can stipulate no artificial means including ventilation. If you are already on that ventilation then I don't think they could just shut the machine off by you writing up a living will.

            It was hard to read your post but I can see what you are saying and what a hard choice you are wrestling with.

            Good luck in whatever you decide.
            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown


            • #7
              Thank you for the support. It is a hard situation, but it is something I have unfortunately been preparing for. Everyone within a few years of me that has had similar situations have now died, one good friend less than a year ago. I also have a quad friend that is ten years older than I and has been in a home for over five years. It is almost weekly he gets new bed sores, UTIs, and spent over eight months in bed due to a supposed lack of staff.

              I don't want to put my family through this struggle, the current one is bad enough, and I don't want to deal with it either for the same end result. Thanks again, I appreciate the help and kind words.
              C2/3 quad since February 20, 1985.


              • #8
                trainman - sorry to hear that you feel this way although it is understood.

                After reading your initial post a couple of times it seems that the underlying reason for this potential decision is A) Your lack of good, competent care.
                B) Your desire to not be a burden on your parents. C) Avoidance of a nursing home.

                Ok, looking at A, B & C I come to the conclusion that qualified help is the answer to your needs. With this qualified help you can remain healthy and be a continued productive participant in this little off-broadway show called life. (You are needed and valuable so this would be a good thing. ) Also, with qualified help you can unburden your family and stay in your current living arrangement. So, how to find qualified help? And what is their value to you?
                And although I'm not in your situation my guess is that your care is fairly costly? And this is being paid for through your insurance or privately?

                My guess and approach would be to exhaust my efforts in finding good help - no matter the cost. I would also analyze why these current assistants are leaving? Money? Driving distance? What?

                I've found, and you probably know this, that $$ talk - especially in private healthcare. Are you offering any kind of incentives? Living arrangements? Bonuses? Look, I know it may sound hollow and discompassionate but with the right money and situation I think you'd be able to find someone.

                Sorry to derail your original topic and request but you're obviously intelligent and have alot to offer. I'd hate to see you give up without trying some alternative methods, routes.

                Good luck with whatever you decide.


                • #9
                  I am very sorry trainman. I wish I knew what to say to offer you some comfort.

                  Your post was very hard to read. But I can understand where you are coming from. It's hard for me to even write a reply to this, not because what you wrote offends me, but because it brings me to my own painful place. But I will write it in case it may help you in some small way.

                  When I was well enough to begin making my own medical decisions a few months ago one of the first things I did was consult a lawyer to try to understand what all my options were concerning the use of mechanical ventilation and my future medical care. Not a very pleasant thing to do at the age of 25, but I thought it was important that I at least be aware of what options I might have. Understandably, this was not something I wanted to burden my family with. I only told my parents and although I know it upset them greatly to even discuss me talking with a lawyer, they were very supportive. Of course, there is a difference in seeking out information and actually taking any action, legal or otherwise. What I did find out was not easy to think about. I met with the lawyer twice and although it was extremely painful to have to even contemplate what he told me, it did put my mind at ease somewhat. "At ease" being a relative term here.

                  Because I live in a different country than you, I can't comment on what choices you may have open to you. I feel really terrible saying this and more than a little morbid. But perhaps a meeting with a good lawyer might help. If nothing else it might clarify things for you in your mind.

                  Please know that I am thinking about you. You have my email if you want to discuss it further in private.


                  • #10

                    Good reading, you are correct with A. I have been near the situation I am in now, but not as bad. I'm currently on my parent's insurance through my dad's work, which he is tied to in order to keep the insurance. I primarily use agency nursing, $80 per hour for RN. The plan I'm on has negotiated for about half that price for 16.5 hours per day. If you're good with math, you can keep up with costs, which we're all familiar with.

                    I ran into being about two months away from my lifetime cap three years ago, but was put on/given another policy through an Iowa Senator that, at this rate plus other expenses, will last about 4-5 more years.

                    However, I live in a small (around 10-12k) community over 40 miles from my nursing agency. The one night nurse they provide is diabetic and has other health problems and is therefore unreliable, quite often lately. The agency has been, personally seen, advertising in my area as well as theres for more assistance, but when they hire someone, they stay for a short time with the agency or don't work with quads/vents. I am the constant "squeaky wheel" as to what's being done, but this has been the cycle for nearly two years. Other agencies in the area closer to me don't take someone like me that needs so much service or are closing down.

                    My parents do their best, but my mom was injured at the same time I was and can't help me much. Dad works 10-12 hour days 5-6 days a week to keep the insurance and funds coming. My grandparents help as much as they can, but they are getting to their mid to upper 70s and are having their own problems.

                    So yes, more nursing would go a long ways, but I'm currently reaching my resource limit. The insurance limit will be another issue, but that's another thread all together.

                    Again, thank you everybody for the support. I'm signing out for tonight and will answer questions soon.
                    C2/3 quad since February 20, 1985.


                    • #11
                      Sorry that you feel this way, I can only begin to imagine how horrible it must be. I believe that individuals on vents can request to be removed at any time after a mental compentency. I know of one person who was 3 years post injury when he was removed from the vent. The hospice doctor disconnected him. I believe heroic measures and life support can be stopped at any time as long as you are competent.

                      I hope you can find other solutions and that the situation will get less bleak.

                      No offence taken by me, glad you feel safe here to ask.
                      Every day I wake up is a good one


                      • #12

                        i grew up in a small town in iowa. i have a couple of very good contacts back there who happen to be in the nursing field. perhaps if you could tell me your town name, i could make some inquiries.

                        i'm sure the senator to whom you refer is harkin. are you in contact with his office?

                        i know this is not the help you are asking for, but it is what i can offer.


                        • #13
                          Hello Trainman,

                          I am very sorry to hear that you are suffering. Whatever can or will be done for you, I hope and pray will bring you comfort. You may want to contact the following organization.


                          Please do not worry that you are being offensive. You are not. It is a privelage to listen to another's burden.
                          Last edited by eagle18; 09-19-2006, 12:24 AM.


                          • #14
                            Hi Trainman,

                            Sorry to hear about current situation. It sure seems you have a lot to offer and I would hate to see difficulty in obtaining care be a reason for any of your life potential being cut short...

                            One thought occurred to me , we have worked with "Accessible Spaces" here in Virginia. They are based out of MN and have several properties there. ( unfortunately none in Iowa) Would it be feasible to move north to Minnesota, have your own apartment and use their home health care system which as you will see below is onsite in several of thier housing / apartment units? Just a thought.

                            You've come a long way, keep on keeping on.



                            • #15
                              That was my first thought - move out of Iowa. Maybe in a different place, nursing wouldn't be so difficult to find. California? I don't have answers.

                              But I don't want to see you go. I don't want you to suffer either.
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12