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Advice on motor neurone disease please

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    #31
    Thank you for your thoughts. I feel powerless but it helps to hear that I'm doing something right

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      #32
      so sorry to hear that your Dad is so unwell

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        #33
        I am thinking about you and your Dad, KLH,

        It's such an awful situation and you must feel so helpless but your Dad has and will always have your love.

        You are doing your very best for him so you should feel very proud of yourself. I hope you have some love and support around you too.
        Love Debbie x

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          #34
          Dear KLH,

          It is not unusual to feel powerless - because, until there is a cure, we are all powerless to stop MND in its path of destruction.

          However, please be kind to yourself - it is wonderful that you are tirelessly using the power of your love and positive thinking to make sure that your dad is as comfortable as possible, and that his quality of life is as good as it can be.

          MND cannot stop us from trying to make the most of every day - you, and many others on this forum, have shown that the power of positive thinking and the power of love are truly wonderful things!

          Love,
          Kayleigh x
          Last edited by Kayleigh; 22 February 2019, 14:15.

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            #35
            Thank you again for all your kindness. It's a horrible limbo and I suppose it has to be endured, much as I want to feel OK.
            Saw the palliative nurse today, I worry I've harangued the staff on the ward but it feels urgent.
            Anyway she's referring him to a hospice. Dad's wife isn't in agreement but I think she's wrong. I just don't know. He can't talk at the moment so can't say what he wants. Im just going on what I know he likes and what might make his death easier for him. My gut tells me it's the right thing to do. I hope so

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              #36
              Hi KLH,

              I'm sorry things have progressed so quickly for your dad.

              A hospice is the right place for him at this stage (they are great for family support too) I hope your dad gets a bed there as soon as possible.

              Big hug to you.

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

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                #37
                Hi KLH,

                People just hate the sound of a hospice but it is normally the best place for us, so you are right.

                It will also be better for you and his wife. Sorry to hear of his decline.

                Hugs Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                  #38
                  Thanks
                  I've talked to a few people and prior to this read around the subject of end of life care- Atul Gawande' book being mortal is superb. I can't see any negative about hospice. However I spoke to my dad's wife earlier and she's very anti it. I've asked the palliative nurse to talk with her. I worry as mentioned in my first post that her dislike of my dad might be driving her opposition. Can she block it?
                  I spoke to the ward earlier and my dad was more with it today which was a relief to hear after yesterday
                  I'll see him tomorrow. Needed a day off the driving and sadness. Went through a red light last night leaving Manchester. I was exhausted

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                    #39
                    Hi KLH,

                    It's good that you are having a rest today.

                    It's such a shame that your dad's wife isn't more supportive of your wish for him to be transferred to a hospice. I can't think why she would be against it, but hopefully the palliative care nurse will put her mind at rest about any concerns she has.

                    Usually the options concerning someone's care (including end of life care) are discussed with the patient, so that they can make their wishes known in advance. However, as things have moved on so quickly since your dad's diagnosis, it sounds like this hasn't been possible.

                    If a bed does become available for your dad at the hospice, I don't know if his wife could block him being moved there, and I don't know what would happen if your dad is too unwell to make his wishes known. You might wish to phone or e-mail the MND Connect helpline, for advice about this issue.

                    Take care.

                    Kayleigh x
                    Last edited by Kayleigh; 23 February 2019, 19:15.

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                      #40
                      pleased that your Dad was more with it today. I dont know if his wife can block hospice care. I assume the hospital will inform her that they need his bed ,make sure that you look after yourself too x

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                        #41
                        Hi KLH,

                        If your dad can indicate yes or no to a independent person asking him the questions without any of yous there, and is of a sane mind then he should be able to over ride her.

                        As keyleigh says, many of us have written our wishes or have someone as power of attorney.

                        Hope he continues to improve.

                        Love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                          #42
                          Hello everyone
                          I saw my dad this morning and he was lucid. So I grabbed the chance to talk about what he wanted next- hospice or stay put.
                          He seemed to think he'd prefer a hospice. I explained the environment and why I think it'd suit him better. But I'll support whatever he chooses. He's very vulnerable and passive at the moment, not surprisingly. I took the opportunity to tell him he's a great person and he deserves the best care. He is riddled with guilt about a few things. Well, lots of things and I tried to reassure him we all screw up. These were hard conversations to have but I hope they were the right ones..
                          I've been struggling with simmering anger. It's starting to eat me up. I think I need to talk to someone about it. Before I lose my rag completely. I thought I'd ring the mnd helpline tomorrow.
                          Much love and best wishes to all of you suffering /managing this disease and being so kind as to reply to my posts. You have been an immense comfort and help

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                            #43
                            The hospice normally has people you can talk to about things, KLH;

                            Most of have regrets but he can't have done so bad a job with you.

                            Love Terry
                            TB once said that "The forum is still the best source for friendship and information."

                            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                              #44
                              Thank you Terry. That means a lot x

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                                #45
                                Thinking of you and your Dad Klh xx

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