Living Will – acceptable quality of life – feed back please


Again, I thank all that posted their thoughts on quality of life. I have read all and will be replying to each individually.
Have started my own post. My gauge for assessing quality of life has changed over the years. I am now looking at things like breathing issues, mobility, fatigue…… How these things impact on me daily affecting the quality of my day. I have said it so very many times, life is to be lived and not endured. The question is at what point does our situation change that we go from living to enduring.
This past couple of years I have been battling an entirely new and different heart condition. This combined with the heart failure and all increases risk of heart attack and stroke. I have come to realize I fear the stroke much more than the heart attack. Yes, I fully realize that next heart attack will put me down and out. I have had years to come to acceptance of that. I don’t like it, I dread it but I no longer fear it.
What I realize I do fear is the stroke, a major stroke. I am talking the stroke that leave a fully functioning mind trapped in a paralyzed useless body. Being unable to even communicate. Just stuck for who knows how long, your mind trapped. That is my greatest fear, something I can’t live with.
I realize strokes can affect you in countless different ways and to different degrees. I know people that have made virtually a complete recovery. So yes, I am looking at the worst case scenario but that is my greatest fear. I can help alleviate that fear/worry with a Living Will. It is designed to make my wishes clearly know should I go through such an event that I am left unable to communicate.
This gives me peace of mind both for myself and I am sure will ease the burden for my family. They will not be left forced to make agonizing decisions based on what they think I would want done.
It is so easy when we are healthy to have an almost cavalier attitude and think and say things like: “If I ever get like that just pull the plug”. We have to think of the onus, the burden that places on our family. Someone has to step up and make the decision as to exactly under what circumstances do yo “pull the plug” and how long do you wait to do that. Then consider how much difficulty may they have going forward living with the fact they made the decision as to where and when your life was ended.a huge burden to place on anyone, especially when it can be avoided.
My instructions I believe are pretty clear.
If such an event should happen and I am able to communicate. Respect my wishes, not open to debate. Should I be declared brain dead in a still living body, pull the plug immediately. Should I be showing brain activity in an otherwise dead body and unable to communicate. Wait for a period of 30 days to see if I “wake up” then pull the plug.
For me there should be no actual plug based on my DNR. For me it would be stop all medications. Currently I take 37 pills a day to keep this body going, many being heart related. Stop all those and I am in God’s hands.
More and more I have come to realize quality of life has nothing to do with the outer world. It is determined within our own heads.
I am looking for more feed back please. Do you have a living will? Do you think it is good and considerate idea to have one? Should an accident or some tragedy occur what would be the minimum quality of life you would find acceptable?

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10 Responses to Living Will – acceptable quality of life – feed back please

  1. Strangely, my wife and I are currently considering what to put in OUR living wills and your conditions seem to cover our thoughts as well Bill.

    Hello, that is a real coincidence. Would you consider sharing your thoughts on what you are going to put in the will
    Bill

  2. hilarymb says:

    Hi Bill – it is certainly a necessity (I’d say) to have all your requirements and wishes listed … so as you say all is clear. We just never know …

    Good luck – I’d hate to be alive and paralyzed within my own body – as you mention … the worst … and no I have not yet got to that stage of putting something in writing.

    All the best though … and with thoughts – Hilary

    Hi Hilary. I think it is a document everyone should have irregardless of age, health or any thing else. One just never knows, accidents do happen.
    Nice to hear from you.
    Bill

  3. Mark lowe says:

    Hi Bill I think the quality out ways the quantity by far I’ve got a good pal at the mo diagnosised with terminal cancer I pray for him most days to who I don’t no I look up when asking, but may be I should look with in who knows ,I’m watching him die slowly I sit with him now and again trying to lift his spirits in my own cheeky way we smile & laugh talk about the Times we’ve had , soon and I hope not yet let him see one more Xmas with his kids not in sedation land but in himself , I hope it’s not a slow death I have to watch it and the quantity is’ent quite right when the quality has gone not nice seeing someone full of life reduced to a shell , Mark 😒

    Hey Mark, good to hear from you. Really enjoyed our chat yesterday. Who knew you could use Facebook like a telephone. So it was nice really talking with you..
    My heart goes out to your friend and family.
    Mark for what it is worth, I am proud of you for being there for your friend. Often all you can offer, is what you are doing. Providing friendly chat, reminiscing about the good times. A laugh or two, provide such a welcome distraction from our reality of the moment. Good for you, please keep it up.
    Please say hi to my entire English side of the family.
    Hope we can talk again soon.
    Bill

    • Mark says:

      hi Bill ,was great to speak for the first time to, putting a voice to a face is good as a face to a name must do it again soon was a long time coming. hope my pal hangs in for a bit longer such a great pal came as a huge shock ,was treating it as ulcers the wham bang the big C poped up …..such as life say hello to all across the pond cheers
      Mark

  4. Mary says:

    Damn Bill…you are way too young for all of this, but…you asked about the Living Will…..Yes…Bud & I have one and it is signed by a commissionaire….I do believe in them as long as it is carried through and no one protests it…..fool if they do…..if this is one’s wishes…carry it through. God Bless you ….you have gone through sooooooooo much…it is hard to believe you are still with us….Good Doctors…right and the will to live is soooooooooo there!! Vi is your “Living will”….Stay strong and we are thinking of you. Mary & Bud

    Hey Mary so good to hear from you. (Always enjoy the email jokes please keep them coming). Good for you in having that living will. It is both a wise and a loving thing to do. You are right we can only hope no one protests it. I have spoken about my wishes, it has been made clear to all.
    You are right in that medically I have gone through a lot. There have been times when things have been tough. I look back at those times and realize with Vi at my side I was able to really live and get some enjoyment of life out of even the toughest days. I know I have and still am dragging Vi through hell on earth. For such a little person, she has a lot of strength and has helped me or even carried me through a lot.
    I do have the most amazing doctors, nurses and medical support. I am a lucky man, a very blessed man.
    Plus, I know the Good Lord has intervened several times, there is just no other explanation.
    All my best to the entire family out there
    Bill

  5. M T McGuire says:

    It’s an amazingly hard but amazingly good and helpful thing to do. I remember talking to my Mum about how awful she felt when the home my Granny was in discussed it with her. If anything happened they would make her comfortable but did my Mum want them to treat her or should the care be palliative. This at the stage where she was just lying in a bed saying nothing. I remember visiting her, myself about a year before she died. When she was still getting up and still talking to people. I said hello and she made not sign of recognition I could feel the dumb tears welling up and Mum told me to hold her hand. I did and she started to talk to me.

    When Mum visited her, she had no idea if she did any good and the nurses always used to tell her that it made a big difference and that my Grandmother was always different after a visit. It was only years later that Mum said she used cry, too, at the end, when there was no outward response.

    I think that’s why my Mum has been so very clear about what she wants, herself, because with my Grandmother she had a good idea what her mum would want but didn’t know for sure. Her and Dad are both DNR. I’ve always wondered, if either of them had a heart attack, whether I could manage not to try and rescuscitate them. I told Mum this.

    “I can’t watch you die,” I said.
    “Then of course you can do cpr if it makes you feel better,” said Mum, “but I’m not coming back.”

    She’s so bloody minded, god love her. Apologies if I’ve told you all this already. But yes, I totally endorse what you say. A living will is the most considerate and loving and brilliant thing you can do. When you get old, or ill, discussing your death with your family, discussing your funeral, all of it is so important. It’s comforting them in advance, before you go, while you’re still there to help them grieve. I feel so much more accepting about and prepared for my parents’ deaths and the medical issues they will have to face first because we have talked and even joked about it together. And blimey this is a long post. Sorry for hijacking the comments section Bill!

    Cheers

    MTM

    My dear friend, your comments are always welcome. Feel free th “hijack” as much of the comment section as you please.
    I thank you for sharing you beautiful, love filled and so very personal story.
    It re-enforces the fact that having a living will is a very kind, considerate and living thing to do.
    It eases the burden of those left behind. Most if not all would want to honor the wishes of their loved one. If though those wishes are not clearly known and understood it causes so much more stress at an already stress packed time.
    Take care my friend
    Bill

  6. skeldro says:

    Hi Bill, my husband and I had Living Wills drawn up when we were in our mid-thirties/early forties respectively and there are DNR instructions in our medical notes. I suffer from claustrophobia, and the mere thought of “a fully functioning mind trapped in a paralyzed useless body”, as you so aptly put it, causes me to start hyperventilating…

    I have spent years of my life in hospital, literally, not as a patient myself, but as the parent of a profoundly disabled child with a life-threatening condition, and what I have seen in hospitals in these years has not increased my desire to spend any time in there myself.

    I think it probably makes a huge difference if you have to worry about family, ie feeling an obligation to keep going for their sakes. My own family (several thousand miles away) would feel that way, but my husband and son can’t stand hospitals and would not be there to support me. This isn’t me having a misery party, it’s just the way things are, based on years of experience. As I said, *I* have spent years of my life in hospital with my daughter, always on my own with her and without any family support.

    The only person able to make me want to go on (provided I wasn’t completely paralyzed) is my profoundly disabled daughter. If she were still alive, I would have to keep going for *her* sake. I have been the one constant in her life and I don’t know how she would cope without me.

    Regarding my daughter’s health – I have to annually update and sign a document detailing which level of resuscitation I feel is appropriate for her – this always depending on her perceived level of quality of life. We are still at ‘full resusc’ at this stage, but it certainly gives you a lot to think about!

    You are lucky to have such a loving family around you! You may feel that you are putting them through a lot at times, but there seems to be so much love in your family, which is most likely what is helping them – and you – through the tough times!

    Thinking of you all

    Hello and welcome to my blog. I thank you for sharing your so personal and so very touching story. My heart breaks and goes out to you on so many different levels. I can image nothing worse than having a child with such serious medical conditions. A parents worst nightmare, helplessly watching your child deal with this. So badly wanting to jump in and do something, anything but knowing there is nothing you can do. My heart and prayers go out to you.
    I am sorry to hear you are facing and dealing with this alone. Please know you are welcome to return here at any time. You can vent, rant and rave, get your feelings out as you need to.
    Here is a safe non judgemental spot, where you can get loving support

  7. gail goss says:

    Hi Bill, this living will is as you say important and something we should all have. I do not have one but will definately be discussing this with my family. Working in Aged Care, many of the residents have dnr, this is one of the questions asked when they come into the Nursing Home. I see so many trapped in their body, unable to talk, walk or even feed themselves, this to me is not quality of life. I understand that the decision to “pull the plug” is a very hard one, but put yourself in their shoes, would you want to live like that. Having said that, i would still find it very difficult to “pull the plug” on someone close to me. You have an amazing supportive family Bill and after going through so much you are still thinking of others. My thoughts and prayers are with you and your family.

    Hi Gail and thank you again for your comment. Working in a care home for the elderly gives you a better insight into the struggles faced at the end of life stage.
    The struggle faced by family faced with the “pull the plug” decision. How much more difficult that decision must be if they aren’t sure of what the patients wishes would be. It is important to me to try and make that time as easy as possible for my family. I have made my wishes clear to all.
    Anything further you can share from your experience or just life thoughts is welcome.
    See you back on the Friends site.
    Bill

  8. lypenner says:

    So I have a technical question, thinking of my parents who are in their 90’s and increasingly growing fragile. My mom now has cancer, a slow moving kind but cancer nonetheless. I realized I don’t even know if they’ve thought of this. The question is, how exactly does one go about getting a living will? Is this something you need a lawyer for? Or is it with the doctor?…

    Hi Lydia. I am just on line responding to comments. Was just starting on your last comment which is excellent. I am no expert in this and am not sure of the legalities. But, yes you can have a lawyer draw it up. For me I found a copy of one on line and have used that. I am trusting all will respect my wishes.
    Thoughts and prayers to and for your parents and entire family

  9. sam says:

    love you ,allways thinking of you godbless

    Thank you
    Bill

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