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    #46
    Originally posted by Music man's wife View Post
    My husband went into a a Leonard Cheshire home for respite, Holehird in Windermere. I can't say he loved it but he certainly didn't mind it. The staff were lovely and nothing was too much trouble.
    The rest of his respite was cancelled due to covid.
    We've tried a care package which was hell on earth. A team of 4 carers, 3 of which were lovely and the other.... Life is harder physically without them but emotionally so much easier.
    Life is hard I can barely leave him alone a minute and after 2 years on ventilation now it's giving us trouble.
    Anyhow when hubby can't bear weight and needs to be hoisted is when I'll have to throw in the towel.
    My mother, currently 85 yrs old, was until August 2020 caring for my 86 yrs old father for the remaining 5 years of his life, he was hardly mobile and she would have to bathe him and change his clothes. She told me she didnt love him anymore, but just felt so sorry for him, thats why she carried on looking after him. He was old school, and spoke what he thought, which can often not be nice.
    The point is, I don't want to be like that, so I don't want my wife to feel she has to care for me cos she feels sorry for me. better to be out of her hair whilst she still likes me (maybe).
    Diagnosed 2nd Jan 2020
    Both arms/shoulders affected, left worse than right.
    Progressive Muscular Atrophy suspected

    Comment


      #47
      Beemer that will have been so hard for your mum...........at her time of life..........the 5 years will have been horrendous, BUT

      my feelings would be that if you check yourself into a Home............your wife truly wouldn't like it..........I'm just speaking as I know it would be for me - call it sorrow, call it guilt, but not having the things to do would become a torture initself...............how could I live with myself knowing I'm in the house on my own and my husband was elsewhere.........I doubt sleep would come easy,

      I don't know what stage you are in with this lousy piggin disease so you might think its easy for me to say it? don't mean to offend

      Have you had the Chat?................seriously she needs to think how she would feel after the event..........in other words could she live with herself ? only she will know the answer to that, if she's a youngish woman she might feel able to do that, then again?

      Maybe you would have better success than music mans wife with Carers? - I cant comment as we are not that far down the line yet - I am 100% sure my husband would rather stay in our home and would get them in when needed.

      Best Wishes


      Husband Albert diagnosed PMA Feb 21

      Comment


        #48
        Originally posted by Suefromwakey View Post
        Beemer that will have been so hard for your mum...........at her time of life..........the 5 years will have been horrendous, BUT

        my feelings would be that if you check yourself into a Home............your wife truly wouldn't like it..........I'm just speaking as I know it would be for me - call it sorrow, call it guilt, but not having the things to do would become a torture initself...............how could I live with myself knowing I'm in the house on my own and my husband was elsewhere.........I doubt sleep would come easy,

        I don't know what stage you are in with this lousy piggin disease so you might think its easy for me to say it? don't mean to offend

        Have you had the Chat?................seriously she needs to think how she would feel after the event..........in other words could she live with herself ? only she will know the answer to that, if she's a youngish woman she might feel able to do that, then again?

        Maybe you would have better success than music mans wife with Carers? - I cant comment as we are not that far down the line yet - I am 100% sure my husband would rather stay in our home and would get them in when needed.

        Best Wishes

        Sue, I am not offended. My wife is 53 and a fitness instructor who deals with mainly the over 50s with heart conditions. She is currently furloughed, so not at work at the moment. I can walk (slowly), talk, feed myself (with difficulty) and throughout the day look after myself, but I cannot lift my arms and my hands are very weak, which means getting showered and dressed is very difficult on my own, and impossible for me to put a coat on.
        I therefore am thankful for her help, but she does not want to talk about it, she will listen to me but I do not know what she really thinks.
        We have both seen what my mother has gone through, and have vowed it won't happen to us.
        Diagnosed 2nd Jan 2020
        Both arms/shoulders affected, left worse than right.
        Progressive Muscular Atrophy suspected

        Comment


        • Please know that I have been bed bound now for 9 years, as has Ellie most likely.

          It seems impossible but it is possible with adjustments to your routine and expectations. It is very challenging when you go through 'The Change' but life can be great.

          Comment


            #50
            Graham I take my hat off to you sir and salute you

            Comment


              #51
              The deepest respect from me too. I'm still not sure I want the same but I think it unlikely I make it that far. ๐Ÿ˜x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

              Comment


                #52
                Originally posted by Graham View Post
                Please know that I have been bed bound now for 9 years, as has Ellie most likely.
                Nope, I get up every day, am showered, dressed and move about my house - with help of course.

                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                .
                โ€‹

                Comment


                  #53
                  Originally posted by Graham View Post
                  Please know that I have been bed bound now for 9 years, as has Ellie most likely.

                  It seems impossible but it is possible with adjustments to your routine and expectations. It is very challenging when you go through 'The Change' but life can be great.
                  Crikey Graham. I think that makes me optimistic, but I'm not quite sure. When I hear of people like yourself, I think it must be just a case of being able to manage all the various difficulties that this illness throws at us. What I find makes me feel like it's a struggle, is when some new symptom starts up and initially you find it difficult because you don't realise that there might be a solution that makes it easier to live with. As an example, when I first had problems drinking I got a bit worried how I was going to get enough fluid in. I hadn't heard of thickener. As soon as I tried it, drinking problem solved, at least for the time being. I think that's the key to coping. The other thing is actually finding the solution. We're beginning to get worried about what to do when I can't walk any more and to start with it's not obvious what the best solution is, but it'll probably get sorted one way or another. Keep up the humourous links.
                  Each day is made easier with a bit of humour.

                  Comment


                    #54
                    Beemer I once read a short story. A women was terminally ill and didn't want to tell her family and become a burden to them. She visited a doctor some miles from home and told him of the situation. He told her she was denying her family of the opportunity to love and care for her till her dying day and she must rethink her decision.

                    Comment


                    • I remember being petrified as each new deterioration occurred during 2009/2010, particularly when my lungs started playing up. It is very difficult to make any sense of it.

                      It does play with your mind and it is difficult to remain rational. On top of that, partners and family may compound the problems.

                      I was living with my elderly father at the time and I was put under enormous pressure by my siblings to move into a care home and give up my own home.

                      It would have been a terrible mistake.

                      Yes Gary, Beemer and friends, the NHS has a lot of solutions to a lot of problems. Try to keep cool and take one day at a time.

                      Comment


                        #56
                        Originally posted by Graham View Post
                        Please know that I have been bed bound now for 9 years, as has Ellie most likely.

                        It seems impossible but it is possible with adjustments to your routine and expectations. It is very challenging when you go through 'The Change' but life can be great.
                        My goodness Graham, what the hell am I bleating on about, when there are people out there like you.
                        You have my sympathy, but, like me you probably don't want sympathy. I would like to shake your hand (if I could lift my arm, lol).
                        Diagnosed 2nd Jan 2020
                        Both arms/shoulders affected, left worse than right.
                        Progressive Muscular Atrophy suspected

                        Comment


                        • Ha-ha-hah, yes, our handshake would dumbfound onlookers, no doubt thinking we must be of the Masons' Lodge.

                          Put your military training to use in your fight against MND.

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