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    Home care

    I am thinking of getting some home help. I feel I need some help with personal care and dressing etc. Does anyone have any advice on dos and don’ts. What questions should I be asking. Many thanks

    I would love to know too so please someone post x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Hi Madge,

      First off, if you're unsure of your entitlements for carer support, it's probably a good idea to contact the MND Connect Helpline or maybe ask your hospice.

      I have carers and, for me at least, it's vital that I like and get on on with the carer, they have common sense, a good sense of humour and is reliable.

      Don't presume "years of experience" is necessarily important - sometimes newbies with no preconceptions and who can be trained into your way of doing things, is much better.

      Do communicate frequently, openly and honestly with all carers and care agency, if applicable, for positive and negative/constructive feedback.

      Do have a clear idea of what duties the carer will carry out and tell the carer, so there are no ambiguities.

      Do give the carer a good chance - she is likely to be just as nervous as you - but if you know it's not going to work out, change her as soon as possible and not to let a bad situation drag on.

      I know it's awful to accept you need help but you do get used to it, honestly!! and it's actually a relief not to have to struggle for ages to wash and dress yourself. My carers are a wonderful lifeline and we have a laugh everyday - I look forward to seeing them daily.

      Best of luck to you.

      Love Ellie.

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


        Ellie thanks for your informative reply x I have been recommended 2 companies and I am waiting to hear from my local hospice to see if they can recommend anyone too.


          Hi Madge,

          Do some research online, checking for reviews of agencies (not least by staff - if they are happy, you are more likely to be). Ask around - you may at least get names to avoid (I did).
          Ask the agency how late carers may arrive and what systems they have to check on this/ what experience the agency has of MND (probably none but they may have dealt with other neurological conditions)/when their prices last went up and whether there are any plans/how often they move carers round (important because as Ellie suggests, if you have good ones, you want to keep them).
          I'd endorse what Ellie says overall - my experience is mostly very positive; my two main carers are fairly new to this but had lots of life experience and are proactive in noting changes and offering solutions. They are a huge asset.