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Advice for a care home with my Mum

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    Advice for a care home with my Mum


    I am new to the forum, and am hoping someone could advise me. My mum was diagnosed with MND with FTD about 2 months ago, and we started noticing things weren’t right about 6 months ago. Things have developed at an alarming rate. Eating and drinking is a major issue, and mum will have a PEG next month. My mum’s speech is just limited to single words at best. My mum’s mobility is ok, but she is very slow and frail. The most heart breaking aspect is the dementia side, which has developed rapidly.

    My mum was the most independent person I know, bringing up 3 kids for about 27 since my Dad past away from cancer. She did live on her own until about 7 weeks ago, when it became unsafe. She was eating foods making her choke, confusing dates and times, crossing busy roads ignoring crossing, leaving the gas on the hob, amongst other things. Sadly, since she has lived at my sister’s the dementia side has gotten worse, and with my sister’s 3 children its just not suitable for anyone.

    My mum is currently staying for a week, in a care home. I know she hates it, and this is where we are struggling and the guilt is awful. I have a feeling what my mum needs just doesn’t exist, but if anyone does have any useful advice it would be much appreciated. It maybe we need to look into a couple of care homes, one for short term and one when my mum’s mobility does deteriate.

    1. My mum is 65, so fairly young for a care home. Where she is staying at present she is at least 10 years younger than everyone, and she knows it too. If at all possible we would like to find a place that has people with a range of ages, and some closer to her.

    2. My mum, sadly has a very short attention span, and struggles to initiate tasks, which is common with FTD. We do need a home, that is flexible and can get her involved with cooking, sewing maybe even gardening, and get her out and about. My mum has never been a person that would sit around and do activities like painting, playing games etc that most home offer. She really struggles in knowing how to fill her days, which is so sad to watch.

    3. We have already had to move her from Wales to Leicester and are very reluctant to move her again. We struggled so much with the NHS in wales, whilst the contrast in Leicester is incredible. The MND support with LOROS and their nurses and doctors, and many others is brilliant and really want to avoid having to start again with another county.

    If you have any suggestions, weather that be a care home, in house nurses I would welcome anything. I just want to give my mum the illusion she is independent, but she has someone there to make things safe. It might be an impossible question to answer I know.

    Many Thanks


    Hi Tim,

    May I suggest you contact MNDA connect who will be able to guide you. I would expect that your mum may qualify for NHS continuing health care (CHC). The process is long winded and involves assessment. See if her GP or consultant will sign a DS1500 form as this will speed up any claim for assistance.

    My only experience of care homes relates to my mother in law who has dementia and she is in a facility in Rutland that operates 3 units. Self contained bungalows where carers come in regularly. Full time care home for people living with disability. Finally a secure unit for people living with dementia. This care village is run by a Leicester company.

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


      Dear Tim,
      It is never an easy decision to make, removing someone from their home to a nursing or care home and I can imagine that although the move was necessary that all the family have misgivings about the move.

      It was probably essential though to make sure she remains as safe as possible the dementia is probably far harder to cope with than the physical symptoms of MND can be.

      Have you spoken to the specialist nurses at Loros to see if they have any knowledge of the type of specialist care you are looking for? It is going to very difficult to find all the requirements for your mum that you have asked for, most homes cater mainly for the elderly. I have asked Scott Maloney who is the Regional Care Development Advisor for the Leicestershire and surrounding areas and he is unaware of any homes that are specifically for the younger adult with both dementia and physical disabilities.

      Have you looked on the Care Quality Commission website:
      All homes and care agencies in the UK have to register with this commission and their details are then published on their website with the ratings which have been given to them by the commission regulators.

      Your other suggestion of carers looking after her in her own home would probably not be achievable unless the family would be able to fund a live in carer who could be with your mum at all times to ensure her safety. Your mum may be eligible for Continuing Healthcare, which is care fully funded by the NHS but this at most would probably only mean carers would attend her 4 times a day to get her up, make sure she has her lunch and dinner and then put her to bed.

      The other option is that she lives with a member of the family but carers come in and take care of her personal needs. This is something you could discuss either with the social services adult care team or the continuing healthcare team if she qualifies for this.

      If the decision is made for her to remain in a nursing home to make sure you find the best one available you may need to visit the homes and see for yourself the facilities and activities they have on offer, until you find a home that you would consider acceptable for your mum.

      I would stress asking the nurses at Loros if they know of anywhere as they visit people on a regular basis.

      If you would like more information about continuing healthcare please let us know.

      With kind regards

      MND Connect
      Contact us on 0808 802 6262 or at [email protected]