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Thread: Mum with MND

  1. #11
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hi Tania,

    I understand that Continuing Health Care (CHC) might not be particularly easy to get, but you may wish to look into it now so that you are aware of what it involves, in case your mum wants to apply for it now or in the future. As you are probably aware, CHC is fully funded by the NHS. (I have provided a link to the NHS guidelines about CHC, at the end of this post.)

    Your mum might have already had a needs assessment for care provided by her council, but just in case you are not already aware of this assessment, here is some further information about it: - your mum might be entitled to receive care at home organised via her local council (funding for this care is means-tested, and so the costs of this care might not be fully met by your mum's local council). If you wish her to be assessed for this care, you would need to contact adult social services at her local council, and ask for 'a needs assessment for care'. The council's website may include the facility to make an online request for an assessment.

    Link to the NHS guidelines concerning CHC:-


    Best wishes
    Last edited by Kayleigh; 12th January 2019 at 22:50.

  2. #12
    Hi again, Thanks for your kind words. I think you're right Ellie, her MND does seem to be progressing rapidly and I think this is partly down to not having enough nutrition - I thought I would have several months, not several weeks to work out what would be needed. My husband and I spent Christmas day with her and she had limited mobility but was coping, 10 days later her right arm was weakening and then I discovered she had accidentally wet the bed, so I arranged a carer who started today (21st Jan 1 hr a day) and began converting a downstairs room and bathroom for her and then the last couple of days she has had further toilet problems and because she is living alone, not even a month later, I am wondering if I am doing the right thing trying to allow her to stay at home or if I should be looking at a care home. I can of course arrange more visits from the carers per day and am hoping for some guidance from them, but does anyone know how practical it is to have someone cared for in their own home as opposed to a care home? I feel that putting her in a home too soon will signal the end of life for her, but remaining at home she can still have some independence, but I don't want her to be uncomfortable, distressed or in danger - so difficult to judge....

  3. #13
    P.S. And thanks Kayleigh, I have gone some way into researching continuous care and will look at your information. We are looking at communication options as well thank you.

  4. #14
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hi Tania,

    It is lovely to hear from you again.

    I can understand your dilemma about whether the best place for the provision of you mum's care is at her home or at a care home. I am not at the stage yet where I need to be looked after by carers coming into my home, but I realise that the situation is likely to change for me in future.

    I know from reading posts on this forum, that it is often a workable and viable option to receive continuous healthcare at home, including for people who live alone. However, as everyone's needs and wishes about the provision of their care are different, you are doing the right thing by researching all the options available for your mum.

    A great way to get advice about the provision of your mum's care at home etc is by contacting her local hospice. As well as nurses, hospices often have their own physiotherapists and occupational therapists etc. In my experience, the people there are really helpful in giving advice and they are passionate about wanting to improve the quality of life for people diagnosed with serious illnesses, such as MND. You might also be able to get help/advice with the CHC application. As well as providing advice about the provision of your mum's care at home, they might also be able to advise about any care homes that might be suitable. If you haven't done so already, you may wish to consider contacting your mum's local hospice to ask what support they can offer you and your mum (some hospices have theIr own websites).

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 21st January 2019 at 19:00.

  5. #15
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    A care home or care in one's own home - it's such a hard decision Tania and there's no right or easy answer, unfortunately...

    There are pros and cons to both scenarios and no doubt your mum will have her own views on the subject too.

    Yes, people can be cared for successfully in their own homes but it is likely your mum will need 24/7 care in the future, so a team of trusted carers is needed. Your mum would obviously be in familiar surroundings and have that home environment. I think you're right to increase her hours of care now.

    Medically, she'd need carers trained to give her meds and to deal with any equipment she may need as time goes on.

    In a care home/nursing home, she'd have 24/7 care and company during the day.

    (Assuming you find a good one) The care home option may be less stressful for you, as you wouldn't have to fret as much in the knowledge care is "on tap", so to speak. On the other hand, your mum may prefer to stay at home, but she may, with time, realise she needs structured care.

    It also may come down to money!

    I am sorry she has had some toilet accidents - many people on the forum do. If you've mobility issues and you gotta go, there is not a lot you can do.... Maybe Tena pants or similar?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #16
    Hello Tania, I'm new here but thought I'd tell you about our experience with continuing NHS funding.
    The wheels were set in motion by our local MND community practitioner. She contacted the district nurses who did all the necessary paperwork and a couple of weeks later it was approved. This was all fast tracked.
    We now have money for homecare plus a contingency fund for a nursing home.
    Hope all goes well for you.

  7. #17
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hi Music Man's wife,

    It's good to hear that the appropriate care was put in place for your husband so quickly. We often hear how it is not so easy to get NHS continuing health agreed for a patient, and so thank you for letting us know about your experience of this.

    It sounds like your husband has got support from a good healthcare team, which is great.

    Best wishes

  8. #18
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Tina,

    It is a hard choice and it's best if mum makes it,especially for now.

    Even care homes have their problems with giving the appropriate care and expertise with some of the specialist equipment and feeding tubes etc.

    Love Terry

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