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Thread: Support, is there any?

  1. #1

    Support, is there any?

    I have been reading all of your posts for a while now but have only just plucked up the courage to post. I look after my mum who has MND. We have limited support, one day a week at a hospice which will stop after this week. I just wonder what support others have?

  2. #2
    Sorry you find yourself here Janie. My husband had terrific support, from the MNDA, from our local surgery and community nurses and the local hospice. The neurologist, OT Nurse and respiratory clinic were all great as well. Have you had contact with the MNDA? I suppose it depends on which part of the country you are in, but here in North East Wiltshire the help was so overwhelming that my husband Dave said everyone was "Making too much fuss!" Others will give you advice, I'm sure, but you should have an MNDA co-ordinator who can help get what you need when you need it. Don't flounder along on your own - you should have help as soon as possible. Trish x

  3. #3
    Welcome to the forum Janie

    I am so very sorry to hear that your Mum has MND.

    I am so pleased you have plucked up the courage to post though. The people here aren't at all scary and manage to offer fantastic to support.

    I am afraid I can't answer your question as I don't require support yet but I am sure others will be far more helpful. Can you say whereabouts in the country you are? There may be others in the same area.

  4. #4
    Hi Janie .. I just want to welcome you to the forum and sorry to hear your Mum has got MND .. I can't help you with your question but there are lots of lovely people on the forum that will give you good advice on getting support . . I myself have not long joined the forum and i am caring for a friend who has been diagonised a few months ago with Bulbar Palsy ... to present day he does not require extra help or support but down the line help and support will be required . Keep posting your questions and queries you will get answers .. dvd
    Last edited by Dvd; 31st January 2016 at 15:13.

  5. #5
    We have had carers 3 times a day for around 18 months. It has been a massive help to my Wife. Sometimes you have to share the load.

    We were put in touch with a social worker who recco a care provider and organised the relevant assessments.

  6. #6
    Hi Janie I have 3 visits per day x 2 carers + 1 sleepover carer. I get CHC (Continuing health care), not means tested . I live alone but family swings by but discourage them, the old burden deal. Diax Dec 08 mnd pbp. Care worker oganised most things. Just polishing the old rugby boots for when the cure comes. Welcome. Dude xo

  7. #7
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Janie;

    Sorry to hear of your mums diagnoses but welcome to the forum.

    The hospices all have different policies and normally keep people on after the initial period on the same once a week or every two weeks or more. A lot depends on her needs at the moment. Hopefully she has a team of specialists around that will help with problems in different areas.

    There might be a Mnda branch near you and Mnda connect, are good to ask any questions on things or for help.

    A lot depends on her local area, there might be Mnda AV's (association visitors) and support from neurological nurses, etc.

    We will help too answering any of your questions and pointing you in the right direction.

    Best wishes, 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.

  8. #8
    Dave K
    Quote Originally Posted by Janie View Post
    I have been reading all of your posts for a while now but have only just plucked up the courage to post. I look after my mum who has MND. We have limited support, one day a week at a hospice which will stop after this week. I just wonder what support others have?
    Call MNDA first, tell them everything, they do listen and are ever-so-helpful. Then call Social Services and tell then what YOUR WORST week can be like and again what YOUR MUM's worst week will be like. Not the last week but the WORST week you have experienced.

    Social Services may try to fob you off, make you feel guilty for asking for help, this is not the fault of Social Services, it is the ever-so-diminishing funding for Social Services.

    You have to say it as it was, the worst week you have experienced, it matters not if things have improved, you got to say it as a worse case scenario before anyone will listen to you.

    I struggled for 2 years before I realised that asking for help was not a crime...

    Really, if you do not ask then you do not get...

    Please feel free to ask us (or me) anything about how to get things moving with regards to help. I have walked down your road, believe me, I have.

    I am and have been a 24/7 carer for my wife with MND/ALS + FTD (Demntia) for the past year or two.

    Dave X

  9. #9
    Hi Janie,
    Welcome to the forum, the people here are lovely. I am fairly new here myself so will be reading the replies to this one with interest.
    Wendy x

  10. #10
    My advice to you is to get the ball rolling

    We started looking for help in August. In September we recruited our first agency for two visits a day, the another agency for the other two visits. In October we realised that we needed nightcare so Marie curie were coming in twice aweek They were free but the daycare we had to pay for

    Ou district nurses put up a chc application nd we were awarded 46 hours just before Christmas. We thought about it long and hard and now our lovely morning carer is coming to do three nights. Monday Tuesday and Wednesday starting tomorrow and we are hoping that Marie curie will continue to come as well

    These things take some time ro arrange. Please think about getting the ball rolling

    You can't do it on your own!


    Joycie X

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