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    #31
    Thanks Dina and good luck for you and he to have some nice times soon. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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      #32
      This post follows on from Terry's post about not getting upset as it doesn't do us any good.

      When I began this thread I talked about one of the carers (who I called "X"). I have discovered that, following the visit that day, X contacted the care company's office, claiming that I would not allow her to move my bed, which is completely untrue. During the visit, she asked me if my usual carers move the bed, to which I replied that they don't but if she wanted to move it that was fine. When I heard about the lie she had told about me, I was livid and told the agency that I would not allow her into my home again.

      Last week, I had an appointment with my consultant at the MND clinic at Salford Royal. During the appointment I became upset and was struggling to hold back the tears. The doctor was mildly shocked as he had never seen me upset before - even though I have seen him quite a few times and spent quite a bit of time with him, since then. In fact, he has commented on my positive attitude throughout the period since my diagnosis in November 2018.

      After each of the three times when I have been so upset, my MND has deteriorated markedly, so I wholeheartedly agree with Terry's comment about how getting upset doesn't do us any good. I am trying to keep on an even keel because of the way the MND bites back, but it can be very difficult.

      This d*mned MND doesn't play fair, does it?
      Dina

      Trying to keep positive, but not always managing.

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        #33
        Hi Dina;

        Showing your emotions to a professional caring specialist doesn't do so much harm as they might help you release some frustrations.

        Life an't fair, is it?

        Do the best you can.

        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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          #34
          You're better off without carer X, Dina - it's so important to have complete trust in each and everyone of your carers. (I've done the same with 2 carers over the years for lying)

          That undercurrent of stress does cause us physical issues and eventually it can't be contained, so it eventually comes out as tears of frustration, anger, life-loathing or self-loathing and often when least expected

          When I saw you posted at 04.24 I thought Crikey, I know it's bright outside, but why is Dina awake enough to post??

          You're clearly an intelligent person and I don't want to appear patronising, but good quality sleep is a great medicine in helping us cope both mentally and physically with our MND, so I hope you're managing to get a decent stretch of sleep most nights.

          Take care.

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

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            #35
            Hi Dina

            Getting upset might not be good for us in some ways, but I think that it's totally understandable with everything we have to cope with. I think we have to be kind to ourselves and allow ourselves to get upset sometimes, if we need to - as I don't think that bottling things up is good for us either.

            Good for you, for sticking up for yourself concerning carer X! Personally, I have zero tolerance for liars!
            ..... and if that carer wants to move other people's furniture around, I think she should change career and get a job at Pickfords! Lol

            It's good that carerX is banned from your home - I hope your other carers are always kind and caring and that they treat you with the utmost respect. No-one should have to put up with carers who are uncaring and can't be trusted.

            I think you are a very kind and caring lady - and a hero for being involved in medical research!

            Sending you lots of love and hugs.

            Kayleigh xx

            Comment


              #36
              Originally posted by Ellie View Post
              When I saw you posted at 04.24 I thought Crikey, I know it's bright outside, but why is Dina awake enough to post??

              You're clearly an intelligent person and I don't want to appear patronising, but good quality sleep is a great medicine in helping us cope both mentally and physically with our MND, so I hope you're managing to get a decent stretch of sleep most nights.

              Take care.

              Love Ellie.
              Hi Ellie,

              I forgot about the time when I posted! I had woken with awful foot pain and it took a while for my partner to be able to get downstairs. Consequently, I was wide awake so I had a drink and something to eat whilst on my tablet. Don't worry, I do get plenty of sleep at night. I often have a treat in the morning: my partner helps me turn onto my side and I fall asleep. Bliss!
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #37
                Thank you, Kayleigh, that's a kind thing to say about me.

                Most of my carers are lovely: attentive and kind - not at all like the Poisoned Dwarf!

                I don't mind getting upset, but I do mind that it seems to trigger quite a worsening of my MND, which is doing that well enough without any help!
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #38
                  Hi Dina,

                  So sorry you've had such an awful experience with your carer... It must have been difficult to stay calm as someone not telling the truth is so infuriating.

                  I know getting upset and stressed is bad for us but we are only human and we are bound to have a meltdown sometimes. No one can be expected to stay cheerful and positive all the time and maybe bottling our feelings up is not good for us either.

                  For me, it is sometimes a small realisation or thought that sets me off but I think its probably really due go an accumulation of things andI usually feel a little more upbeat next day.

                  Take Care and sending you big hugs , Hope tomorrow is a better day.
                  Love Debbie x

                  Comment


                    #39
                    Hi Dina
                    I hope you are ok I have been having lots of meltdowns lately. I can't hold back the tears sometimes. My husband keeps saying take one day at a time. But it is difficult.
                    Sheila x

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                      #40
                      sorry you had a bad time with carer

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                        #41
                        Hi Terry, Deb, Sheila and Shrew,

                        Thank you all. It really is a special sort of support on here, isn't it? Thanks, everyone.
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #42
                          I went into the hospice again to give my wife a break. On the first night the active mattress was set too hard, and the alternating cycle was not working. The care assistants refused to change the setting because they didn’t seem to know how active mattresses work. By 3 am I was weeping with pain, and had the beginnings of a pressure sore on my ankle. From thence onwards I was treated as though I had dementia, all my complaints were treated slowly and begrudgingly. After 4 days and only one hoist to the toilet my wife discharged me - the stress was too much for both of us. In two yesr I have not had a meltdown, bbut often feel on the edge.

                          Comment


                            #43
                            I’m sorry that the hospice has let you down and this is not what we expect from an establishment meant to help. I hope your wife will register a complaint with the management as the care staff are clearly failing in their duty.

                            Best wishes,
                            Barry
                            I’m going to do this even if it kills me!

                            Comment


                              #44
                              No point now, very few are interested in what happens to us. I will be dead at Xmas

                              Comment


                                #45
                                Hi Jonboy

                                Originally posted by jonboy53 View Post
                                No point now, very few are interested in what happens to us. I will be dead at Xmas
                                I'm sorry to hear that.

                                However your treatment as you describe falls far below what I have seen in our local hospices with elders of mine and a friend. And far below what I would want for me when my time comes.

                                If you do not want to say anything yourself perhaps saying it to an MNDA person (visitor, nurse, etc) might get the message over?

                                Warmly

                                Andy
                                Warmly


                                Andy

                                ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
                                MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                                "Things turn out the best for people who make the best of the way things turn out"

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