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Mums care needs - advice please?

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    Mums care needs - advice please?

    Hi everyone. Hope you are all as well as can be. My head is spinning with thoughts of mums care needs and was hoping some insight from you all would help!

    Mum is struggling more to mobilise around her house - it’s often as if her feet are stuck to the floor and just will not lift. It’s taking her so much effort just to move and her hands are ‘curling’ and getting weaker too. She is still living alone in her semi detached house with a stair lift to get upstairs. We’re waiting on a council bungalow but nothing suitable has come up yet, plus she hasn’t been awarded medical priority yet so wouldn’t get the property even if she bidded for it anyway.

    Carers come in three times a day but the times are not ideal nor is the level of care. Don’t get me wrong, they are lovely people but don’t do the extra stuff - tidying the pots away, making sure mum has a good scrub rather than a quick wash. Plus they are only there a few hours a day.

    Options put to us are - paying for a private care company (mum has savings so pays for all her care), paying for a personal assistant where she can dictate amount and level of care more, or going into sheltered housing. I guess the other option is care home but nobody has mentioned this yet so hopefully that means she wouldn’t need this yet (?).

    I’m just overwhelmed with the decisions needing to be made and, as I’ve said before, we never seem to be able to keep up with how fast MND progresses so I don’t feel like times on our side. I’m very conscious that mum lives alone and I think she struggles more than she lets on. Just don’t know what to do for the best. Thanks for reading.

    Hello Helen,

    I’m sorry to hear that your mum is struggling and she does sound like a case for continuing health care. CHC is provided by the NHS and is granted after assessment of the patient. It is not means based and a number of our fellow members have it.

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


      Hi Helen;

      Getting the right care is very hard. Maybe consider getting the carer in for a extra hour every three days to give her a proper scrub.

      Also you might be able to get someone to pop in for a hour to do a bit of house cleaning and tidying.

      Know one ever does things how you would like but there is a medium.

      Love Terry
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


        Thanks for your replies. My thoughts are that a personal assistant may be better and we may look at them being there more than the current carers. I don’t think the care company would be sorry to see us go - with me complaining and my husband sending a carer off with stern words for coming over an hour early to do mums tea, I don’t think we’re very popular!! Haha.


          My husband has continuing healthcare if you want any info/advice. This pays for 2 carers every morning for an hour and a 4 hour sitting service on a Monday so I can go out. We could have had evening carers too, but he would have had to go to bed about 8pm. From next week we have also got another 10 hours. We have gone on to direct payments as you have more choice about what you do with the funding. So for the extra 10 hours we are having another 4 hours sitting service, 2 hours cleaning and 4 hours for a carer to focus on taking Tony out etc.


            Thank you Devonmaid. Are direct payments where you find the carers yourself and employ them directly in a private arrangement rather than through a care company?


              Hi Helen,

              My Gran lived alone and, after diagnosis, her progression rate was incredibly fast. The care company that we had sound a lot like yours- coming in at the wrong times (or sometimes not even coming at all!) and a lot of them did not do any tidying up or washing my Gran properly, the same as your situation.

              Eventually, things got so stressful (certainly when my Gran could no longer walk to get to the commode by herself), my Gran made the decision to move into a nursing home. She's been there for a month now and I must say that her daily needs are being met much better than when she was at home (though, she is unable to be transferred anywhere other than the commode because she has incredible pain in her peroneal nerve whenever she sits for more than 20 minutes, so she is confined to her room and her bed, unfortunately).
              Definitely go for the continuing healthcare- your mum is absolutely entitled to it and it will lessen any financial burden monumentally (even if there's none now, it's best not to have to worry about it happening in the future and is just one less thing to worry about overall).

              Alternatively to nursing homes, you could look into live-in carers- i'm not sure if continuing healthcare would cover the costs of that, though.
              "This, too, shall pass"


                Thanks Broostine. I applied for continuing healthcare but it was refused because they said mums needs are more social than medical (?!). But we met with a new care company this week who seem more in tune with what mums needs are (hopefully) and they link in with other services a lot which is encouraging. The current carers just seem to do the bare minimum which is fair enough but I think needs in MND are more complex than that. Mums got so many professionals supporting her which is a blessing and a curse - it’s a lot to co-ordinate at times! But they give such good advice and I’m sure will help us apply for funding when it is suitable because mum pays full whack for everything at the minute. I’m glad to hear than your gran is settled in the nursing home, and hopefully this will help bring a bit of balance back into life for yourself x


                  Hi Helen, not sure if anyone replied to this one. We were recently advised about direct payments too. The answer is yes to your question, you can employ anyone family member/friend etc. I think we will go down that route too as we are finding the times the carers attend are all different times and do not meet mums personal needs. Same as what you say they are lovely it just doesn’t help enough 4 hours out of the day x


                    Hi Helen

                    Sorry for late response. I wasn't alerted that you had responded to me and we have had a rough few weeks with Tony. You can always reapply for continuing healthcare as your mum's needs increase. I have my direct payments managed by a local organisation that was set up by the social care team, so I don't have to do anything. It means I have been able to get 4 hours cleaning as well as x2 4 hour sitting service sessions and the morning care. The continuing healthcare funding pays for it all. To be honest my husband's care needs are high - he is paralysed from the neck down, he has to have medications through his PEG and most of his food and drink, althoug he can have pureed food and thickened fluids. He gets ++ pain on movement and has strictures and his elbows and knees cannot be moved much. He has partially dislocated shoulders. He should be using a breathing machine at night, but cannot tolerate it. His continence needs are also complex. Hope this helps and take care. It sounds like things are coming together. Sometimes it takes a while to get things sorted.


                      Hi Helen,

                      Following on from advice provided on this thread, please find below a couple of links to information on the MNDA website which you might find useful.

                      Link to Information Sheet 10B Direct Payments and Personalisation:-

                      Link to Information Sheet 10D NHS Continuing Healthcare:-

                      Love and best wishes,