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    #46
    Originally posted by Ellie View Post
    Just thinking out loud... 🤔 Hospice Social Worker? xx
    We've never had any contact with the hospice apart from them saving he can't go there!

    Thanks everyone for your support. I'm going to ease up a bit. Banging your head on a brick wall gives you a headache!

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      #47
      Today I rang a home in the north east, 2 hours away but that’s how far I’m looking. Anyhow left a message outlining the care hubby needs, best to be honest. An hour later I got a call from the home and a voice said I’ve got the perfect excuse, Covid!
      So I gently explained I was the women who had called to enquire about care for her husband.
      I think I can cross that place off the list.

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        #48
        Come to Sunny North West! 👍😁🤗😍xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #49
          Music man's wife
          Hi , presume after several weeks the continuing care team still can’t find a nursing home to support your husbands needs?

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            #50
            Originally posted by Music man's wife View Post
            An hour later I got a call from the home and a voice said I’ve got the perfect excuse, Covid!
            🐄 Lucky escape but it shows us all what you're up against... xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #51
              Finding a suitable nursing home or package of care at home isn’t an easy task.

              There is a national shortage of carers and often they aren’t available to visit at the times people would like / need.

              I know when I was a hospital social worker pre MND it would hold up hospital discharges if we couldn’t arrange carers on discharge,The complaints would flood in about carers not being available at the times required and people being put to bed early and got up late enduring hours longer in bed with the complications that brings.

              Music man's wife ..it must be so worrying after so long not to find a suitable care home for your husband and having to consider a care setting hours away from home.
              Really hope you find somewhere suitable soon.

              Best wishes
              Mary x

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                #52
                So an update.
                One carer went off sick as the other returned. Not good. I spent all day on the phone, GP, CHC, CCG and a variety of nursing homes nothing.
                On Thursday night I was putting Chris to bed using the stand aid and harness. His legs went from under him and he was left dangling with the harness tight on his chest, the harness bearing his full weight. I got under him to relieve the pressure on his chest and managed to press his call arm. I was shouting call an ambulance he's choking. The easiest way I could describe the situation.
                So we were both trapped by the stand aid, poor Chris gasping for breath when the ambulance came out and disengaged us both. What an absolute carry on.

                So yesterday I phoned the GP again who said we are doing our best. I said Chris isn't spending another night here and unless they admitted him somewhere I would call an ambulance and if an ambulance didn't come I would abandon him in A&E.
                Three hours later he was settled in the hospice.

                ​​​​​God I'm a bad wife.

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                  #53
                  Bad wife? Not in a million years. You are human. ✌️xx
                  Last edited by matthew55; 24 October 2021, 08:42.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #54
                    Music man's wife so sorry to hear what you've both gone through....horrendous. Don't put yourself down....desperate people have to resort to desperate measures. You've been let down badly by the system that should be supporting you.
                    Take care xx
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                      #55
                      Music man's wife First off, I know you feel it, but you are most definitely NOT a bad wife, woman, person. You have been begging for help and have been routinely ignored - you could have done nothing more for Chris, absolutely nothing more.

                      The hoist incident must have been traumatic for you both and I'm sorry it took such a crisis to spur people into action.

                      You have the upper hand now and are in a position to do some calling of the shots, so the very best of luck in finding a long term solution.

                      Love and hugs to you both. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                        #56
                        Music man's wife ...Awful situation but hopefully good outcome.Now your husband is in the hospice hopefully you will be listened to and both be fully involved in any forward care planning.I hope you are both relieved after the trauma using the standing aid.
                        Best wishes to you both
                        Mary

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                          #57
                          Music man's wife I’m shocked at what you both went through. You aren’t a bad wife at all. You are certain doing the best that you can. Please be kind to yourself, love Lynne x
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

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                            #58
                            The hardest part of a person who you love leaving is letting go. I've had a lot of practice.
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #59
                              Music man's wife

                              Really sorry to read of your ongoing experience, it all sounds incredibly stressful. The stand-aid incident must have been so distressing for you both.

                              Nobody was listening to you and I think you did exactly what you needed to do - another incident may have had a much worse outcome and the situation just couldn't go on.

                              Hope this hospice is everything Music Man needs and I do hope you can get a rest yourself. Take care x

                              Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

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