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Care package for my mum

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    Care package for my mum

    Hello everyone, my mum has advanced MND. She is bed bound, cannot speak and only has the use of one arm. She is on a Nippy overnight and has a PEG tube as she is at risk of choking/aspiration if she were to have anything by mouth. She has just been discharged from hospital and has a care package which is 2 carers 4 times a day and a waking night watch who can help with her Nippy and PEG feed. Does anyone have experience of leaving someone alone all day with this package of care or indeed being the person who has MND and is left all day? I have to go out to work and it just feels a bit scary, particularly when she has been in hospital for 3 months and had a call bell so would be attended to. Before she went in to hospital she hadn’t been diagnosed and didn’t require this level of care so it’s all new. I am anxious and keep wondering what if this or that happens? It’s not as if she can pick the phone up and ask for help. She has a personal alarm but even if she presses it, cannot communicate xx


    I’m really sorry to hear about your mum 🥺

    I would say this is a question for your social worker (if you are local authority funded) or CHC coordinator (if the NHS is funding you). They will have performed a risk assessment regarding the safety of your mum and (hopefully) put in a care package that meets her needs. However given the progressive nature of MND this should be reviewed on a regular basis. If your mum warrants 24 hour care then that should be provided.

    Wishing you all the best,

    James x
    Foxes Never Quit 💙


      JamesW Thank you x


        Mymothersdaughter If I may, I have questions 🙄 so as to better understand your mum's needs and wants...
        • Does your mum want to be bedbound? She's only 71 - how does she occupy her mind all day, has she technology to enable her to chat to you, to the carers, to her friends, watch TV, listen to books and the radio?
        • How many hours are the daytime carer calls?Do the carers give your mum meds and/or fluids during the day?
        I also have very advanced ALS: I am alone during the day - partner works, kids in Uni - and have carers come in for 6.5hrs during the day. I have no functioning limbs, no speech, use overnight NIV/Nippy, have a feeding tube and am grateful that my carers get me up, showered and dressed everyday. My friends pop in twice per week and my wonderful and indispensable eye gaze controlled PC allows me to involve myself in life.

        If your mum is happy to stay in bed, fair enough, but my point is that, with special equipment (hoist, wheeled chair of sorts/wheelchair, staying in bed is not a given.

        Love Ellie.

        PS: if you'd rather not answer, that's no problem!
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


          Mymothersdaughter In my experience that amount of support in the community would be considered ‘high’ in hours. Especially having night care….which can be ‘rare’.

          The hospital will have assessed your mums needs and deemed those hours adequate. However always to be reviewed. Yes & risk assessed.

          People in the community do spend long periods of time alone.

          Regarding community alarm…if activated the named responders will be contacted….in my case my friend and my daughter. Irrespective of speech because I could be unconscious.

          Its bound to feel worrying initially….how does your mum feel?

          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. NIV overnight. Generally weak. Mostly terrified.​​​​​​


            My husband is no longer mobile, hoisted in and out of bed, into armchair / wheelchair / shower chair etc. He can't speak, uses head operated mouse for communication via grid pad.

            He has a PEG and can only have the odd thickened drink orally.

            I have recently gone back to work (working from home) part time because we have been successful in employing PA's to care for him during the day, plus an hour at night to help get him into bed. Prior to getting direct payments care support was a nightmare. I can now use the hours (42 per week) flexibly to ensure that he has someone with him at all times when I'm not. Plus doubling up with me for hoisting.

            I only got this support after reaching crisis and blowing my top at social services though, combined with a safeguarding report from ambulance staff after a suspected TIA.

            Lesson learnt, you have to make a fuss for social services to take you seriously. It shouldn't be that way, but that's my experience. The PA's we have now are great. Still trying to get weekends sorted, but I(and my back) can cope with 2 days a week.

            Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

            Sense of humour intact throughout.

            Sadly passed away peacefully 2/9/22