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Mum living with MND in nursing home - I feel that every day is a battle

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    Mum living with MND in nursing home - I feel that every day is a battle

    Hello everyone
    My Mum was diagnosed with MND in March 2016. My father died in September of that year not having been able to understand her diagnosis or condition as he had dementia. Mum continued to care for him until that time. She struggled on her own at home until February 2018 when her legs just gave up one day and was taken at very short notice into a nursing home, where she still is today. Mum has the "slow burn" version of MND; her legs were affected first and her upper body is only now showing signs of the condition advancing. We could not afford to have care at home for mum and, in any case, her bungalow was too small to be adapted in any way - we did ask, but a preliminary agreement to an assessment didn't arrive until 5 months after she had applied, and two months after she had gone into the home. We sold her little house and all her funds have now gone into having paid for her care for three years, so we're climbing the Social Care funding mountain at the moment. Mum isn't sufficiently incapable to qualify for CHC funding (don't even get me started on this!!).
    Getting to the point.....
    I don't feel that ANY general care/nursing homes necessarily understand, nor can can cater sufficiently for, MND sufferers. Frequently my poor darling mum, who never complains, has to tell the agency staff what is wrong with her and explain why she can't "just move her legs a bit" or "wiggle into the hoist a bit more". The mattress situation took a year to sort out (as in getting one that didn't make her sore); the recliner chair she has is too big and she sinks down into it; the wheelchair she has is too uncomfortable; the food at the home is getting cheaper and more unpalatable.... It seems that literally everything is an uphill struggle and battle that we could both do without. WHY? When is this, or any other, government going to acknowledge the impact of being given this diagnosis. Why do I have to beg for everything to be made better? Why do I have to complain so frequently to her home? I have recently had to put in a Safeguarding alert to the CQC following the poor handling of Mum.
    Yes, we now have an allocated Social Worker who is trying to help, and we have the support of the local hospice team, but I personally feel very alone as the support calls in which I take part are with other MND carers who all seem to be caring for their loved ones in their own homes. We never had this opportunity.
    Is there anyone out there in this community who is experiencing the same as me? Has anyone else won the fight to get CHC funding? I have written to my local MP to point out that the Scrap Six Months campaign has apparently been forgotten amidst Covid.

    Sorry - I know I'm rambling.

    I'd appreciate any help/advice.

    Thank you.


    I cant help but I am aware that some of the others might be able to, what your predicament does though tells me that my husband has to stay home at all costs.....I've heard before that the care homes are useless in so far as caring for MND and you have proved it. My husband like your mum started on this path in 2016 and still has upper body strength at this point but looking to the future and his needs your post tells me a lot.

    Best wishes
    Husband Albert diagnosed PMA Feb 21


      Oh dear Chrissie, what an awful experience for both you and your poor mum. No need to apologise for ‘rambling’ as that’s what we’re all here for.

      I’m sorry that I don’t have any experience of the issues that you explained very well indeed. I hope that your mums social worker kicks butts and gets things moving.

      An idea came to me for your mum just now. Can you write a letter for her explaining the care that mum needs and laminate it so that she can show it to any carers that haven’t got a clue. There’s lots of MNDA information available too. Maybe you can read them and print out what would potentially be helpful,

      It sounds like you and your mum have been in an uphill struggle on your own. I wish you much luck for some better things happening soon. Love and hugs, Lynne x
      Last edited by Lynne K; 27 April 2021, 15:54.
      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.


        Hi Chrissie,
        I can get your frustration about nursing homes.I went to many in my 25 year career as a social worker and often the front line staff giving the care are not clearly aware of the person’s needs.Many homes use agency carers who come in to do a couple of shifts here and there so no continuity.
        Many nursing homes may not have had any experience of MND and the unpredictable way it presents.
        Are the hospice able to help?I feel Lynne’s suggestion of some laminated lists regularly updated is a starting point.
        I have to say many people ,myself included hope to remain at home with support from the hospice palliative care team and other professionals etc.I too fear going to a nursing home if my hubby passed away first.

        I would(if able to) have a list of my personal care needs clearly outlined from mouthcare, mobility needs, night needs, dietary needs, dressing, communication, spiritual needs etc and I know my daughter would do this if I couldn’t.
        Of course the staff need a basic understanding of MND which is often lacking.Like Lynne said the MND association do great literature but it’s only as good as those delivering the care reading it!

        Its frustrating as you want the best care and missed out on care at home.CHC is a minefield as I remember it well trying to get assessors to see that a person had a primary health care need which was complex and unpredictable.Are you down the appeal route? Or you can start another CHC application if your moms care needs have increased.It would be useful to get the hospice nurse to complete a new application maybe?

        I guess there is no option for your mom to come out of the nursing home with a 24 hour care package ? CHC funded or self funded. Some people qualify for financial help with care via Social Services.I guess this would only work if she could live with a relative plus be awarded or able to pay for 24 hour care.( It gets complex when 2 carers are needed ie for hoisting)
        Is your mom happy and settled at the nursing home and just wants staff to understand the limitations MND has brought to her?
        To date I haven’t come across anybody on this site that lives in a nursing home or has their relative with MND in a care home.That doesn’t mean there aren’t people are in that situation who hopefully can share their experience and offer advise maybe.
        Really hope things improve for your mom and she gets the care experience she needs.
        Best wishes
        Mary C


          Welcome Chrissie - sorry your mum getting the care she deserves, it's obviously very difficult to witness - I'd feel as strongly as you do if it were my mum, so no need to apologise...

          The awarding of CHC is too hit & miss as to rate your mum's chances but, with the hospice and social worker onboard, she may stand a better chance of getting it and, if it's refused, appeal the decision.

          I'm going to ask: is there an alternative home in the area which would be more resident-focused and amenable to learning about the challenges which come with MND? It is true that not many places have much experience of MND. Or it may not be possible to think of changing if there's a CHC application - I have no idea. And of course, changig nursing homes is something you and your mum may not wish to even contemplate.

          Love Ellie.

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


            Hello Chrissie. Not really much extra to add except to say these things are often a battle of attrition aren't they. List for the things you'd like changing and firmly but politely stand your ground and wear them down ...


              Hi Chrissie,
              following on from Ellie’s comments about CHC I do know it’s applicable in the home or a nursing home .As Ellie says and you are discovering its a national criteria but I know some areas seems to award it more readily than others.
              Again I feel in my experience that families would discuss their concerns about the care for their relative with the nursing home senior nurse/ manager but it didn’t seem to be passed down to the carers who were providing the care .(My father was in a nursing home and experienced the frustration of constantly asking different staff members issues pertinent to his care)
              As Ellie says changing nursing home is a huge decision for your mom and you would both need to feel confident it’s the right place.Also the funding of the fees might be a factor depending on if your mother gets Social Services funding or is self funding at present.
              Don’t get despondent Chrissie. You are doing your best to look at the options.
              Best wishes


              • Very sorry to hear about the appalling care, but it is commonplace that people with MND don't get the necessary care in homes. CHC is a corrupt scheme, as you have found. The CQC are a joke too.

                At this point, all I can advise is to complain like hell, you may need to raise your voice.