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    Dilemma

    I’m banging on about the Assisted Dying Bill ( or lack of it).
    I’ve been thinking a lot about it lately. The thing is, it boils down to a person’s quality of life really.

    The dilemma is that when you get to the stage when your days are dominated by meds, peg feeds, cleaning and flushing tubes, using nebuliser, cough assist and suction machine etc etc etc, how can all that be supporting quality of life? life is then dominated by procedures rather than the things you previously enjoyed doing in your life. Life is more than this.

    In addition there is the quality of life of your family members to consider.

    It seems to me disingenuous to say your quality of life is improved with the numerous procedures we have to go through and the dependence on our loved ones.

    You could equally say that all of the interventions on another level are reducing quality of life.

    Please don’t interpret this post as a cry for help from a suicidal individual. I’m not actively ( or inactively) suicidal.

    I worked with individuals who had mental health problems for many years, so I don’t jump to quick conclusions about a person’s motivation, but, surely legalising Assisted Dying would give us all another choice - to take back a little control of our life/death, as long as we retain mental capacity.

    I’d be interested in your thoughts.
    Love, Lizzie xx

    #2
    I believe it should be a matter of choice.

    All the evidence globally is that having such a law actually reduces people taking their lives early!! All the evidence.

    There is a strong in reality point to be made though.

    With MND, if your breathing goes and you are reliant on NIV or Trach you have the means legally to carry out your wishes now.

    Simply wean off of either, refusing medication etc.

    That is how most people do it in the U.K.

    Some, however, decide to go to Switzerland etc early because the longer you leave it the more difficult it makes it, travel etc.

    So, if MND takes everything way from you aside breathing and perhaps eating you have the worst case scenario (in my opinion), Ie you can't end your life nor travel!

    It's a matter of human rights.

    My view is that anyone who opposes choice, on any grounds, is no better than a medieval torturer!

    Strong, I know, but it's the reality. They soon change their mind once a family member is affected or themselves.

    So yes Lizzie, it should be made law.

    Lee

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      #3
      I have long decided that when I can't use my hands I can't use my life. I'm Sane and not suicidal. 😉😁🤗😍xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Those people living with a terminal diagnosis such as MND are clearly going to die sooner rather than later. So it's about assisting in a compassionate and planned death for a person who has made it very clear that is their capacitated choice. Without coercion or safeguarding concerns.
        I am in sound mind and have a loving network of support from family and friends. I would choose to be assisted to die once I deteriorated physically to a,b,c whatever that is for me as I specify in an advanced directive/living will. For me this will probably mean being weaned off NIV with medicine to support.
        A compassionate society would approve this legislation and prevent undue & unnecessary suffering for people who know they are dying without hope of treatment. It would be a choice....but currently we don't have that right.

        ​​​​​​This is my personal view...& I realise it's may not be the view of all.
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #5
          I presume the laws against suicide, now assisted suicide, were made in accordance that only "God" has the right to terminate life. On the "crime prevention" side I guess the law is there to protect Granny with dementia from avaricious family members who want to inherit asap. Then those providing the means have to be comfortable with doing so.
          While it is a challenging fine line I'm sure there must be a way of drafting a permissible law that includes rigorous safeguards allowing people the freedom to make their own rational decision about the end of their lives. As a humanist I strongly support the right of any person seeking to end the life they view as intolerable in a humane way without the dead hand of historical laws founded on religion interfering. The greatest fear I have is struggling for breath. At that point I hope I'm despatched on a cloud of morphine!
          Absolutely no disrespect to those with religious faith is intended.
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #6
            Originally posted by Lizzie View Post
            The thing is, it boils down to a person’s quality of life really.
            Of course it boils down to Quality of Life but QoL is very subjective.

            Plenty of people live happy and productive lives in spite of/despite having all the daily interventions you mentioned - Stephen Hawking lived decades like that - equally many people made the decision to withdraw interventions or to reject them in the first place, and checked out how they wished to, notwithstanding the absence of an Assisted Dying mechanism.

            What's a good QoL for one person is a bad QoL for the next. Take Matthew and me for example: Matthew says when his hands go, he goes, whilst my hands went more than a decade ago, and I'm happy out. We all have different red lines, for different reasons - mine are FTD and eye control.


            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Good point Ellie about QoL....I also think there are times....well for me....when we move the goal posts...for example I was like no no no to feeding tube....however I'm further down the line and now say well maybe it would be a good idea. As individuals gauging what QoL means for us is unique. Rightly so.

              I remember when I thought everyone over 30 was ancient...'til I got there (now that I'm 38 😋) ...perceptions change. 😇

              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                #8
                Blimey Linda I'm nearly 66 so you must think me ancient 😘
                when i can think of something profound i will update this.

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                  #9
                  Thanks to everyone for your responses.
                  Ellie, if an Assisted Dying bill was made legal, it would still allow people to make their choices. No-one would be forced to use it. However, it would mean that those people who had Capacity could exercise some choice when their situation becomes unbearable for them.

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                    #10
                    Originally posted by denise View Post
                    Blimey Linda I'm nearly 66 so you must think me ancient 😘
                    I meant when you're young you think everyone above 30 is old....(I'm more your age Denise)😘
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      56 and still a spring chicken 🐔🍗😁😍dd
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        BTW Ellie the big difference between us is you have a loving family around you and I have no one. Just saying 👨‍👩‍👦😉😁😍xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          matthew55 That's not my point re red lines: yours is your hands, mine is eyes or FTD, loving family or not, that's my exit cue. xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                            #14
                            I was only making the point that no hands for me means total care by strangers. No offence meant mate. 👐😉😘😍xx
                            ​​​​​​
                            ​​​​​​
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              I have to admit I have been wondering about how to quantify my own "red line" as I want to avoid being a burden to my family and shuffle off as quickly and efficiently as possible when the time comes.
                              As you can see in my profile pic I have a collection of firearms as a keen member of a shooting club. Since diagnosis I am having to consider how to sell them all, but I couldn't help having the thought "best keep one, just in case". Stupid thought really, since by the time I reached my red line I wouldn't be capable of pulling a trigger
                              My aunt died of cancer, and drifted off "in a cloud of morphine" as Rosemary put it above. I can see the appeal.
                              I watched my Father rattle away on his deathbed for 3 days before he expired. The medical team said they wished they could give him something to help end it quicker (which would have had the support of the family) but they just couldn't in the current legal climate.
                              We should be allowed choice.
                              Hi, I'm Eddie.
                              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                              Still walking and talking, and wondering what the future will bring.

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