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Thread: Introduction to Forum

  1. #1
    Forum Member
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    Introduction to Forum

    Hi Everyone......

    My mother is 86 and her MND was confirmed last August.......She has had a recent acceleration in symptoms and now has lost her voice and has to have thickeners in drinks and liquidized food......Unfortunately she has suffered from macular degeneration for some time now and only has limited sight in one eye.......

    Communication is now very difficult and we are awaiting a visit from the communication aid team in a couple of weeks time.....

    We have in the last few days been granted continued care funding from the NHS but are still waiting to be told what the package will consist of.......

    Can see the light at the end of the tunnel in the way of getting the necessary care cover but its been a hard slog,especially as i have mental health issues which at times deplete my functionality.....I also have a 87 year old father who i'm really trying to take from being a primary carer to just a spouse.....

    We are doing all of this at the home they have known for 63 years with the very welcome help of the local hospice which have been so amazing in such a compassionate and holistic way.......Its a pity our GP practice aren't the same!

    We managed to covert an out building into a granny flat last year so are fully prepared to accommodate a live in carer when one can be sourced....

    Think this is sufficient as an introduction.......Guess the only thing that i will put out there is regarding feeding tubes (RIG),which we have finally persuaded my mother to agree to......Would welcome feedback from the forum regarding their experiences....

    Thanks...

    Mango

  2. #2
    Forum Member Terry's Avatar
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    May 2012
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    Hi Mango and welcome to the forum;

    Sorry to here about your mum and your 87 year old dad being the main carer, amassing. Hope CHC will soon put inplace a suitable package.

    Not sure how bad your mums sight is and how quick it is going but it might be worth trying her on a tablet with a speech program or getting in touch with the blind society.

    Feeding tubes are great because they take any pressure away from eating and probably more so drinking.

    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.

  3. #3
    Forum Member Ellie's Avatar
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    Oct 2012
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    Welcome to the Forum, Mango.

    Sorry to hear of your mother's diagnosis.

    If you don't hear about the nature of the CHC care package within the next few days, chase it up - the sooner it's in place, the better and, as you say, her spouse can be her spouse. And it will take pressure off you too. If the powers that be start delaying tactics, no harm in involving the Hospice to move it along.

    Please follow up on the feeding tube too - it ought to be a priority so your mum can safely get nutrition and fluids, as well as maintaining her weight.

    Hopefully the communication experts come up with a workable solution.

    Best wishes.

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

  4. #4
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    Gaining Knowledge

    Quote Originally Posted by Terry View Post
    Hi Mango and welcome to the forum;

    Sorry to here about your mum and your 87 year old dad being the main carer, amassing. Hope CHC will soon put inplace a suitable package.

    Not sure how bad your mums sight is and how quick it is going but it might be worth trying her on a tablet with a speech program or getting in touch with the blind society.

    Feeding tubes are great because they take any pressure away from eating and probably more so drinking.

    Best wishes, Terry
    Thanks Terry and Ellie......

    Will explore the forum and gain a few insights from others direct experience...

    Mango

  5. #5
    Forum Member Lynne K's Avatar
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    Nov 2017
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    838
    Hi Mango. I’m very sorry about your mum’s diagnosis. Good luck with getting an appropriate care package. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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