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    My mum is almost two years into her battle with mnd. Deterioration is becoming quicker. Everytime mnd nurse comes out she says there is no need for a bed downstairs or carer. Mum needed an emergency nurse on Sunday who was shocked that my 75 year old dad was there with her on his own, a second nurse came out and said the same thing the day after. Reported to the mnd nurse who still doesn't think is a problem. Only way she can get upstairs now is with two of us to help her and she is only getting weaker by the day. I am terrified she is not going to make it one day and take my dad out with her on the stairs. Anyone any ideas? Do I need to get carers to get her up the stairs can I even do this privately and would they even work just 10 minutes to get her to bed?

    #2
    You have a wicked MND nurse and I don't mean that in any way she is good. She needs reporting but the main task is to get a downstairs bed for your mum immediately from the hospital or privately. You also need to hire carers urgently, Indeed is a good resource for carers.

    You have the correct instincts, follow them.
    Copyright Graham

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      #3
      Our MND nurse was also about as much use as a chocolate teapot however our OT was brilliant. When Ann wanted to try a profile bed the OT had one delivered the next day. When a mattress change was needed the OT had one delivered the same day . So if you haven’t already spoken to your OT I would urge you to do it today. Phone it in as an emergency.

      Don’t let them force you down the buying your own route.

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        #4
        Good afternoon Gemstone

        I can only agree with the 2 other posters in response to your original – I made contact with the MND nurse when I was 1st diagnosed and never saw her. The occupational therapist came from the health service side as opposed to the local authority side were brilliant and continue to be so given my move from London to Southampton.

        Is there any possibility that your mother can obtain a stairlift if indeed you wanted to carry on upstairs? I believe these can be rented as well as purchased and will go on a web hunt if you need me to
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

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          #5
          Is there anybody out there? 😊x

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            #6
            Complain the local mnd association and your gp

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              #7
              This is a very difficult situation. I went through something similar with my husband. This meant that I had to carry him up the stairs each day. This very quickly became untenable and we had to move house.

              I think that given the quick progression down stairs living is the best option. A stair lift would only be a short term fix. I realise this might depend on the availability of a downstairs bathroom. Carers are likely to refuse to help your mum up the stairs as 'lifting' is prohibited for health and safety reasons. I think they are likely to say that using the stairs is unsafe even with help.

              It sounds like a moving and handling assessment is needed. This is usually carried out by physio. It is with recommendations from this that the OT will use to provide equipment. You do not have to go through the Mnd nurse for referrals to physio/OT, you can be referred by your GP, neurologist, palliative care doctor etc. Physio and OT recommendations trump MND nurses who usually function more as a coordinator of care rather than accessor.

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                #8
                Gemstone, your mum and dad’s situation is not good at all. I agree with Samanth that they need an assessment for urgently rehousing to an adapted single floor and ground floor property. This could be a bungalow or ground floor flat.

                Alternatively if your mum and dad own their house and don’t want to move. Providing that it’s of an appropriate size and shape for it to be adapted (doors widened; a wet room created; a downstairs bedroom created and ramped access). Facilities Grants are available. But nothing happens fast I’m afraid so a temporary fix as already stated would be a rented stair lift. An assessment can usually be done by people from the relevant councils department. But your first port of call is contacting your mums OT.

                I’m sorry that your MND nurse doesn’t get it. Some training there seems necessary.

                Good luck, Lynne
                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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