An extremely controversial subject

Firstly absolutely no offence meant to anyone here!

But this is a subject I would like thoughts and opinions on

Personally I agree with putting someone out of their sheer misery, that’s NOT to say I personally could do it, but I do agree with it!

If I were my Dad I’d want someone to ‘help’ me die, I couldn’t live as my Dad does, end of, I just couldn’t and wouldn’t want too! So the obvious answer to me, is to go to Switzerland or Sweden or wherever they help with assisted suicide, but obviously for some people it’s too late to do that.

So what do you think? I really do understand this a truly difficult subject! X

80 Replies

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  • There was a programme on last year about a man with MND who went to Switzerland. I watched it with Mum and we had a conversation, what would I do.

    I am the same as you and I'd gladly end my own suffering or if unable want someone to help me. Mum said she couldn't do that.

    I think though until you are in the actual situation of having to live with a life limiting condition, we can't say what we would do 100%. It maybe a very different decision, it may not. If you are facing a dire prognosis would you then want to keep life as long as possible?

    But yes for some it is too late to travel or even afford to be able to have the option.

    For our loved ones it appears they can have control and stop taking nutrition and fluid.

    This will always be a controversial issue and everyone have different opinions. I do hope though one day it is made legal in the UK so we have the option there.

  • Thanks Spiral, I hope it’s made legal in the UK one day too! How are you and your dear Mum? X

  • Exhausted. More seizures and she is having much more difficulty around mouth and tongue control. Currently won't allow any oral hygiene so got a very sore mouth and gums. She doesn't seem bothered though, me I'm at my wit's end with it all.

  • Bless your heart! I totally get how stressed you must be x

  • I watched a similar programme to Spiralsparkle with my husband when he got to the stage when he could hardly speak. I told him I would want to go to Switzerland if I was suffering like the man in the documentary. I asked him if he would want to and he said “No”. In the end he decided he’d had enough and refused food and fluid resulting in a peaceful, pain free death.

    There were times when I thought it cruel to keep him alive but he wanted to live. I think like Spiralsparkle that if it was us with a life limiting illness, we may think differently. I think it’s very hard to see a loved one suffering but if they want to hang on until the last possible moment so be it. I also think that death may come easier once we have decided that the time is right and let go.

    XxxX

  • Yes I also would not want to live, I would definitely want to end my life, I think George would be like Colin, he will go in his own time. I wished they would bring the right to die in the UK , people could make the choice themselves. Big hugs all you lovely people have a good weekend. Yvonne xxxx

  • Made me smile Yvonne, my Dad is like your George and Bevs Colin, ‘in my own time’ ie I’ll do what I want when I want, bless their hearts x

  • I can see and appreciate and understand exactly what your saying Bev, thank you for sharing x

  • Totally agree with you. Some want to live to the very end no matter what their suffering but for those that don't there should be a choice available to them.

  • I am in complete agreement. To live as my dad did against his wishes was nothing short of torture and cruel. In the end he refused all treatment, drips tube feeding etc and now meds unless he could swallow them. He did it his way but it was his decision and I fulfilled his wishes and made sure it was signed and witnessed. I am at peace with my actions. And would not have been if I had not complied with his wishes. It is totally wrong to allow suffering to continue when it is not necessary. Hope that my opinion does not offend but that’s how I feel too. JR61 x

  • You absolutely do NOT offend, thank you for sharing x

  • My Barry didn't have a choice ,we had singed the DNR so he wasn't on resuscitation. His throat closed,and as he was a mouth breather due to sleep apnea. He gasped for air for 2 weeks with his tongue going down into his throat and blocking the airways. One day for 12 hours he gasped for air like a fish out of water

    It was too much for me to bare.

    That day I said the Lord's Prayer to Barry and asked God to use me to give him his dignity and his peace as he was suffering. Can you imagine gasping for breath to stay alive.

    If he was a cat he would be put to sleep peacefully.

    I lay beside him every night as he gasped. His head would go right back off the pillow to reach for air.

    One night when it became too much for him. I prayed to God for forgiveness and told God I would rather be in prison for life than to see my precious love of 57 years suffer anymore. I put the pillow over his face. When I heard him say " are you insane " He hadn't spoken clearly for months. I got such a shock, let go the pillow and thanked God that at least my life had Been saved and asked for forgiveness

    Barry's throat closed up almost completely and he stopped taking nutrition and water.

    We were not going to use a peg at this late stage.

    It took 10 days of starvation before he passed and his breathing relaxed during this time. He did die peacefully.

    PSP not only takes the body and mind of the suffer but the mind of the carer as well.( I was insane ,at the moment )

    I have nightmares about that night and hope Barry forgave me.

    The problem with trying to get assisted suicide is he wouldn't have wanted that. He was bedridden for 6 weeks and managed to still have some dignity.

    As my grandmother used to say.

    " life is sweet" we hang on to the end.

    Althea

  • Dear Althea, I just cried reading, that, thank you for sharing such a heartbreaking time, words actually fail me x

  • Thank God it's over. Barry is at peace and I can start getting my sanity back. Thank you for listening to my heart. Much love. Althea.🦋

  • I hope that no one is shocked by my reply but what sort of 'civilised' society are we living in that puts sick people through this torture and drives their loved ones to near insanity? JR61 x

  • 💛🦋

  • I’m not shocked at all! I totally agree with you!! They wouldn’t allow animals to suffer so why humans?! X

  • I'm with you on that.

  • This post has been going round in my brain all night and the law is an ass (yet again) I’m afraid. In the UK if we were to allow our pets etc to suffer in this way we would actually be charged with a criminal offence, it is confusing and inhumane. This issue needs revisiting urgently in Parliament. The government has no problem identifying illnesses and diseases that they supply free drugs for, so they should also be able to identify the diseases which should qualify automatically for CHC and compassionate choice to end life, for those poor patients suffering with no quality of life. JR61 x

  • Hi JR61

    I so much agree and would add that simultaneously we (EU) allow refugee families to dies quite freely for the lack of human compassion.

    I am so sorry. I missed the post about your father. It was so sad, but beautiful an moving. He sounds wonderful.

    Condolences.

    Warmly

    Kevin

    x

  • Many thanks Kevin for your condolences. Dad was a very altruistic person. This is my way of enabling him to help even more people and his death will not have been in vain. JR61 x

  • Bless you! I’m sorry that you’ve been having this subject taking over your thoughts all night! But what you say is very true! X

  • Me too!

  • me too !

  • My thoughts exactly. We put animals down for less. At 60 next week and one heart attack down followed by CBD diag nosis life will only become a living hell. I want the right to die with dignity when I want not drag it out.

  • Althea, I started this and then got cut off by the computer. I live in Los Angeles, San Fernando Valley, and there are strong winds here, as I'm sure you are aware.

    I think your act and share with us took courage and love...for us, as well as for your husband. I'm unsure who I shared with, but I recently rented, thro Netflix, the movie AMOUR. It's a very old film. It is about an elderly couple where one becomes ill and the other becomes the caretaker. The one who has taken ill (result of a stroke) requests the caretaker to NOT put her in a "home", but keep her there at their house. I was amazed at how realistically it captured what the "caretaker" experiences. I rented it after my son had died.

    I am fortunate to live in California (USA) where COMPASSIONATE CHOICE was passed by the voters...with restrictions.

    It is a medical fact that being a "caretaker" affects our PHYSICAL HEALTH not to mention our mental/emotional health.

    All that said, I think the person who is dying has to make the decision to end their life, not us the caretaker. I realize that our loved PSP may no longer have the mental capabilities (going in and out), but that is what I believe. I donated $$ towards the passage of ASSISTED SUICIDE as those who were opposed called it. I think, after observing what my son went through ( a cruel cruel illness that robbed him of his speech, his mobility, his bodily functions, robbed him of everything) that I would choose to end my life (easier for me as I am 77 and he was barely 55 when he died), but until that decision comes I don't know. I have found that we often find out about ourselves when we are presented with the circumstances that force a decision/action. So, I can tell you "yes", but truthfully I don't know.

    My son required assistance with his choice to die. He had a PEG installed and after five weeks told us that he did not want us to feed him. Hospice supported him, I supported him, and his paid caretaker supported him, BUT MY SON MADE THE DECISION.

    My son's caretaker, Carlos, I had lunch with today. He is young, but his observation is that my son, Jeff, went into a spiral with the PEG. He is also no longer doing care-taking. Jeff was his second death while care-taking and he has decided that it took too much from him emotionally. He was with Jeff Sunday night until Friday at 3pm. I would come in several times during the day, and spend the entire weekend with my son.

    Althea, you are one wonderful women. Thank you, thank you for your bravery in sharing that story on this site.

    In gratitude, Margarita from Los Angeles, California, mom of Jeff a brave and valiant soul....my son.

  • Dear Althea, you are one courageous lady to share this account with us. It is a heart rending story and you should never feel guilty for trying to help your dear husband from the torture he was enduring. I have often sat by Ben wondering what I would do if he became so distressed knowing that he would chose assisted dying if he had the choice. He actually discussed going to the Dignitas Clinic in Switzerland when first diagnosed, he says he has no fear of dying and absolutely hates what is happening to his body and mind. The thought of him going through the same as Barry would put me in a similar state of mind as you Althea, it would be an act of love, whether I would be brave enough to do it is another thing.

    Thankyou for your honesty, life and death are never that clear cut are they!

    Love and hugs

    Kate xxx

  • Dear Kate, thank you for your nonjudgmental attitude. Wishing you strength and love as you continue this heartbreaking walk with Ben.

    Althea 🌟

  • Dear Althea

    How you both must have suffered.

    My heart goes out to you.

    You are strong and brave.

    Warmly

    Kevin

  • Wishing you strength as you continue the journey with your dear Liz 🌟

  • Like Amanda, words fail me. I tried to write a response, but couldn't. My heart goes out to you. We have all been in that dark place, I suspect a few have even succeeded. As others have said, if I had let my dog live in that state, I would have been locked up for cruelty. I do hope you don't hold on to any guilt feelings about this. You shouldn't. You cared for Barry right up until the end and I am sure he forgave you as you should forgive yourself.

    Sending very large hug and much love

    Lots of love

    Anne

  • Thank you Anne, bless you for responding with so much love.

    Althea 🦋

  • Hi Althea, I have replied to this post, but it hasn't attached itself to your post.

    Lots of love

    Anne

  • Got it thanks Anne 🌟

  • OMG how horrible that must have been for you. I'm sure he forgave you because you heard his comment and didn't go through with it. Rest peacefully and feel no regrets about it. Prayers and hugs to you.

  • So precious for understanding.

    Much love.

    Althea

  • Althea, that is so heartbreaking. Thanks for sharing your story with us. Hugs to you.

  • Much love and thanks for understanding. 🦋🙏

  • Ben has more than once expressed that he would like to have the choice to end his life when he can no longer tolerate what this disease brings. He has no fear of dying but dreads having prolonged suffering. I would like the choice when my time comes. To gradually watch the deterioration in his health and know that the end of his life may be unbearable for him reinforces my belief that assisted dying is the only way forward if that is what the sufferer wants. I dread the last stages of his disease and hope that he is taken quickly and peacefully when the time comes. It is the worst thing about these awful neurological diseases, you have that terrible anticipation of just waiting and waiting for it to tighten its stranglehold and there's not a thing you can do about it. In my mind assisted suicide with the sufferers permission is the only way, end of!

    Love Kate xxx

  • Very very well said Kate!! Thank you and I absolutely agree with you 110% x

  • 🦋💛

  • My thoughts are with you Kate, as you continue the journey. 🦋🌟

  • Umm difficult one this. I was a nurse and midwife for over forty years, i know i gave that large final dose of morphine on occasions when dying patients needed pain and comfort from distressing end of life struggles. I still feel that was part of my caring role to aliviate their suffering.

    However when this legislation is brought in , and it will eventually, the government will see it as a solution to the spiralling cost of caring for sick and elderly people, my fear is it will be abused . Granny may be sat on property worth 250,000 , not uncommon these days, , causing a few problems with her care, not all families are caring, they could coerce assisted dying .

    I remember the legal termination legislation in the late sixties, wonderful , women would no longer have to seek dangerous illegal abortions . By the end of my career i was witnessing women who were quite open in using the proceadure as contraception, not what the legislation was intended for.

    I ask rog every morning if he is happy i get the thumbs up, we are lucky , we have good hospice care funding albeit a fight, the task of ending his life would be mine and i would never have that strength.

    Luckily he had his advanced life directive put together prior to losing capacity, so we are confident once he stops eating and drinking the end will be quick, we are getting to that stage. He has his just in case box to keep him comfortable, and i will make sure of that.

    So thats me, no religious axe to grind, just my observation as a professional and wife.

    Lots of snow here today❄❄

    Julie

  • Thanks Julie I do understand what your saying especially about possible abuse of the system.

    We have a sprinkling here too 😥 bloody annoying x

  • Hi Julie, my argument is that the Government, NHS etc do everything to keep people alive, if not kicking, but have nothing in place to care for you in times of need towards the end of life without you having to pay a small fortune to keep you going, often against your wishes. Why keep people alive with all the drugs etc to have a miserable end to your life, often stuck in homes that you don't want to be in. I dread what will happen to me in old age if I become too frail or ill to be at home, in Bens condition I would have been in a home two years ago because I have no family nearby, an awful thought for me. I fully appreciate that you have been at the sharp end of people at the end of life and have acted compassionately but I think if people have made their wishes clear when they are able, they should have the right to aid the way and time they want to die. Obviously not all people would chose to end their lives in this way but I feel strongly that with strong safeguards in place you should have the right to do do.

    Hope the snow won't last too long, looks lovely when fresh but a pest if it lies around too long. We haven't had any as yet here in East Sussex.

    Love Kate xxxx

  • I take your point Julie and my husband and I have thought long and hard about this before I was diagnosed. We watched his dad become ill for 9 weeks in hospital with what started as a collapsed lung. He did not want to die as lots of family but the misery he went through was heartbreaking. We all took shifts day and night so he would not be left on his own and all 5 offspring and partners were there almost to the end.

    However, my circumstances are different in that we have no children to fight over inheritance issues, and I would wish my husband who has worked so hard, to have a good life after I’m gone without any money worries and knowing I had a dignified end.

    I hope someone gives me a lethal dose before I get too bad.

  • I understand exactly what you are saying about legislation and abuse.

    It could be a problem in the wrong hands. Much love 💛

  • As a Christian my life belongs to God, however we were given free will, so I personally think that we should be allowed to call time in a dignified way without it being called suicide or murder if you have to help someone. Obviously legally there would have to be very strict regulations to stop abuse of the system, but with advances in medical care things need to change.

    My Mum nearly died years ago and I am thankful that the doctors saved her life then, but now with PSP as she deteriorates I very much think that a loving planned release would be better. I don't think she is in much pain, but she is often uncomfortable and very frustrated. She doesn't like the thickened liquid and can now do so little due to her lack of mobility and vision, she has no quality of life. I don't think she would want to go now, but she also hasn't retained any of the information about what may happen next, which tells me she is scared of the future.

    If it was me I would definitely want out. We are kinder to our pets.

  • Thank you for sharing x

  • We wouldn’t think twice about making a pet suffer.

  • features.dignityindying.org...

    Hello this link gives a good view of the assisted dying debate

    Much love to all

  • Thank you x

  • I have strong feelings about this too. I found some of others experiences so sad to read.

    I believe it should be a personal choice to have a peaceful death . When Chris was diagnosed I worried about how he would die. Chris never asked to go to Dignitas so I said nothing. He seemed to believe that when he was ready he would go.

    Thats what happened. He never suffered pain or agitation. He could think clearly. I always asked if he was happy and he was. When his quality of life became unacceptable he just stopped swallowing. He was a strong willed man and was the same man inside an unresponsive body !

    I hope the law will be changed in time for me.

    My son brought up this subject the other day. I said that, if Chris had had the choice it would not have been any sooner. But it would have been a comfort to know he could officially decide.

    Jean xx

  • Bless you jean thank you for sharing x

  • Well Amanda!

    Thank you for being brave and opening this topic up.

    There are many responses which have helped my thinking.

    Big (((Hug))) to everyone.

  • Hi Kevin

    Agree a very risky subject but I feel that we are able to discuss freely here hence the post

    Hugs back my darling x

  • No offence taken here either Amanda. But oh boy, have you started something. Not much turns me to tears these days, except my grief, but this thread is choking me up. The heart rendering stories that are coming out. Hope the people who decide on such matters read this, so they know the anguish we all go through on a daily basis.

    Sending big hug and much love

    Lots of love

    Anne

  • So sorry Anne, really don’t like the thought of you getting so upset! Huge hugs x

  • Hey, I'm not upset, just feeling again!

    Lots of love

    Anne

  • In Belgium it is now legal to have assisted suicide. A doctor comes to the house. A shot is given that puts one to sleep in less than a minute. A second shot is given that kills in less than a minute. This to me is a very humane thing to offer people who don’t want to suffer for weeks, months or years. Why anyone thinks it’s noble to live through a long physically and emotionally draining death is beyond me. Unfortunately one has to be a resident of Belgium to qualify for this service.

  • Sounds brilliant to me x

  • Sounds a good idea to me.

  • If only this government would see sense. If it works there why not here?

  • I totally agree that someone's suffering should be ended if that's what they choose. I find it interesting that to let an animal suffer is inhumane but it fine to let our loved ones suffer. Laws need to change. It's a horrible disease to live with. When someone doesn't have a good quality of life and wants to die that should be their right. When we made the decision to call hospice for my dad one of the nurses at the nursing home tried to tell me it didn't have to be the end, we could do a feeding tube. If my dad had woke up to find we had done that I honestly believe he would have resented us for it. He never would talk about his final wishes, but mom, my brothers and I all felt the same way. Sometimes I wonder if we made the right decisions throughout his illness but in my heart I know we did the best we could with the hand that was dealt. It's a tough topic and decision but do what's right that's within your power. Prayers and hugs to see you both through whatever that is.

  • Thank you for sharing Lucy x

  • I was able to have my time this morning to do some reading and just want to thank you all again for this group of people who have and are dealing with these horrific diseases.I have to say that to treat a human being less then our pets is so wrong.

    If no one has told you all lately, you all are super humans.

    Hugs to all.

    Dee in BC

  • Thank you Dee.💙

  • Well, at the end, Gerry had the palliative care people coming to look after him at home and as far as I am concerned they are the nearest thing to legalised euthanasia that we have in this country. God bless them all for helping Gerry and us, his family, to have peaceful memories of his passing.

    Marie

  • I think many of us who have witnessed the suffering caused to both the patient and the carer would agree with you. My Dad died from pulmonary oedema due to kidney failure relating to drugs taken for MS. He wanted to die and go to Dignitas but he was too ill to go. His end was miserable. My Mum is in advanced stages of PSP and still eating puréed food. She has DNR and refused PEG . I have nightmares as to what will happen to her at the end. I hope she will succumb to pneumonia and it will be fast. I think there is the possibility that such a law could be abused but I can’t see UK allowing it for a long time yet.

  • Bless you thank you for sharing, just heartbreaking x

  • I am going to fight CBD and try to make the most of the life I have......... however my sister has promised me that when I have had enough she will take me to Dignitas where I will be able to find a way out.

    Best wishes,

    Patrick.

  • Sadly, Patrick you need to go to Dignitas whilst you can still take the dosage and sign papers and life still has some value. It is better if it can be " on hold " until you are ready.

    xx

  • Yes that is true but others have found the strength to do it ..........

    I am lucky to have a family that will support me when the time comes.

    I don't want to think about it now but probably as my quality of life get's worse it might be something that I will have to address.

    It would be so helpful if there was a change in British law but that is probably far off.

  • I agree with you absolutely and hope for a change in the law, too. I would say the same for me.

    xx

  • Bless you Patrick! Your a true warrior and I admire your determination!! X

  • Since my mother's diagnosis in July I have done a considerable amount of research on CBD. I came across the story linked below and this thread made me think of it. I thought I'd share as it's very relevant. For those who don't want to read the entire article, the gist is that one of the physicians in Oregon who supported the passage of their assisted suicide law was diagnosed with CBD and used the law to end his own life.

    npr.org/2012/03/12/14845927...

  • Hi Amanda

    Hope all is well

    I agree with what you are saying it’s not fair to let them suffer till the end .my sister had Alzheimer’s and I’d not seen anybody with it in later stages till her and like somebody said they put dogs down for less

    Sending love and kisses

    Sue x

  • Hospice

  • Reading your post on this matter really brings back sad memories. My beloved died in January 2017 of this terrible curse. Because that is what it is. My wife regularly made me promise her that I will never put her in a home.I kept my promise. We had a DNR in place at the time of her diagnosis. Like a prenuptial agreement you take it place it in the bottom of the draw and forget about it. Just pray that it will never be needed. Well the same with regard to a DNR. At the time we spoke to the family and they sort of unconvincing agreed to it. The main stipulation quality life.

    When Dorothy became hospitalised we didn't think about DNR because it looked as though she was going to come home. That was the Thursday. My wife and I spoke about it generally. She always said if she can't be guaranteed quality life just pull the plug. Harsh words but the reality of it came into effect the Saturday morning. Friday night she for no reason went in to a coma. Saturday no response. It was a heart breaking time seeing your loved one in that condition. The feeling of helplessness and despair . DNR never entered my mind. Sunday still no improvement. Sunday afternoon the Doctor on duty called me in an explained that her condition had deteriorated rapidly. They don't hold much hope .He mentioned the DNR on file. I went in to shock because I now have a choice. I phoned my sons and explained what was to be put in to action. My two sons who spent a lot of time with their mum said proceed with DNR only if no quality life can be guaranteed. My other son and daughter in-law not too happy with DNR. Didn't agree with it . Their argument there has to be a way-out. After being quite blunt they just said that I must do what I feel is best. That was a very difficult call for me to make. I reluctantly told the Doctor to proceed. His words were we will make sure she is comfortable and not in pain. We left with heavy hearts . We got the dreaded phone call at 01:30. She finally passed away the next morning at 07:10. She was smiling and at peace. She is out of pain but that doesn't help me to come to terms with my loss.

    But then thinking about it , it is not about me. It is her welfare that needs to put into the equation. She suffered, was in pain, lost her mobility, her site and her dignity. So let soul rest in peace.

    I am still struggling with my loss, but what makes it easier is just balance my loss against the above equation.

    If there is a DNR in place do discuss with the family the worst case scenario. I would have preferred to have an easier time agreeing on such an emotional important matter.

  • Thank you for sharing this very intimate and heartbreaking time with your wife. So very very sad but I do think that your wife will now be at peace, bless her x

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