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Thread: What Now?

  1. #31
    Forum Member Broostine93's Avatar
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    Thanks so much all of you
    Been pondering (more like panicking) about all of this for a few days now and realised I've missed something completely obvious- the need for glasses to read/watch tv.
    It's looking like it's going to be a fairly swift descend with the arms & hands. I am now panicking that Gran will not be able to watch TV/read a book because there aren't any carers in the home that have the time free to stay with her to help her do these things. Is she doomed to spend her days blankly staring out of the window until I eventually finish work each day to help her with these things?

    So sorry for my (very bleak) outlook, but I am now entering panic-mode about all of this. I cannot bear the thought of her being utterly trapped without any mental stimulation, day after day.

    Any thoughts on this?
    "This, too, shall pass"

  2. #32
    Forum Member Ellie's Avatar
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    If your Gran could only embrace technology, there's a wonderful world of podcasts, audiobooks etc ready for her (has the home Wi-Fi?) Or maybe you could download stuff for her and leave it all set up, on auto-play, so someone only has to press Play? BBC Sounds is great, for starters.

    IDK if a Kindle/e-reader would work for her in the short-term? It's much easier to 'turn the page' on an e-reader, rather than on a physical book.

    Is going to the day lounge still out? Many homes have entertainment staff (for want of a better phrase) and vetted volunteers - if a resident is confined to their bedroom, it ought to be incumbent on the home to provide some meaningful stimulation...

    If she has a TV in her room, surely a carer could pop in every now and then to change channel, get glasses or whatever?? And the radio is great company too - maybe it's on her TV, if she has one?

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

  3. #33
    Forum Member Broostine93's Avatar
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    Quote Originally Posted by Ellie View Post
    If your Gran could only embrace technology, there's a wonderful world of podcasts, audiobooks etc ready for her (has the home Wi-Fi?) Or maybe you could download stuff for her and leave it all set up, on auto-play, so someone only has to press Play? BBC Sounds is great, for starters.

    IDK if a Kindle/e-reader would work for her in the short-term? It's much easier to 'turn the page' on an e-reader, rather than on a physical book.

    Is going to the day lounge still out? Many homes have entertainment staff (for want of a better phrase) and vetted volunteers - if a resident is confined to their bedroom, it ought to be incumbent on the home to provide some meaningful stimulation...

    If she has a TV in her room, surely a carer could pop in every now and then to change channel, get glasses or whatever?? And the radio is great company too - maybe it's on her TV, if she has one?

    Love Ellie.
    Hi Ellie,

    She won't even let me/the carers put a DVD on for her now, so I can't see her embracing the audiobooks or IPlayer or anything like that (woman's her own worst enemy, most of the time!)
    Yeah, going to the day room is definitely out- she's in immense pain even being sat on the commode for a few minutes now (I hear her crying about it from the other side of the room when the carers are in there, toileting her, sometimes). The activity co-ordinator has only ever spent time with her on her 80th birthday- she never comes in otherwise (and she left to work elsewhere only last week, so think the home is currently looking for a replacement).
    I think the home is massively under-staffed (loads have left in the last 2 months)- last night, they resorted to using the nurse on shift to help toilet/change for bed most of the patients on my Gran's floor. I heard one poor woman screaming 'help me' after the nurse had told her she couldn't toilet her on her own and had to go and find someone to help her. I am absolutely terrified, but it's too late to move Gran anywhere because she has bespoke needs (even for an MND patient, her painful and twisted leg/ankle and pain at the peroneal nerve root area seems to be unique). Nobody gets anything right and nobody seems to have the time to spend with her to help her with the day-to-day things. I am seriously freaking out about what's to come (I worked it all out today- it seems she's losing 'a part' every month or so, from when she was diagnosed). At this rate, she will have completely lost the ability to move by the end of December. Nobody on the professional side of things seems to have any plan in place, despite knowing what's going to happen.
    I'll tell the truth (because all of you understand exactly what all of this feels like), I have contemplated suicide over the last 2 weeks (my palliative team therapist knows this) because I just cannot cope.

    All the stories I see of other people battling this disease seems to have a much more supportive and proactive team around them- why don't we?
    "This, too, shall pass"

  4. #34
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Broostine93 View Post

    ...woman's her own worst enemy, most of the time!

    All the stories I see of other people battling this disease seems to have a much more supportive and proactive team around them- why don't we?
    It pains me to say there probably is a correlation in your two sentences - your Gran isn't kicking and screaming at her treatment, so she's not getting anything near what she should. It should not be like this of course, but with resources being stretched so thin, this is the outcome

    Painful though it will be, maybe an alternative home could be looked into (I am acutely aware this is NOT what you wish to hear ) It may well be the best option for both of you.

    Sending you a big hug.

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

  5. #35
    Forum Member MNDConnect's Avatar
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    Dear Broostine,

    I am so sorry to hear how distressed you are about your Gran's situation.

    Would you like to message MND Connect directly on: mndconnect@mndassociation.org to enable us to explore your Gran's situation in more detail.

    With kind regards
    Jacqui Anderson
    Senior MND connect Adviser

  6. #36
    Forum Member Gillette's Avatar
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    Oh, Broostine,

    Iím so sorry you are feeling desperate. You are in a dreadfully difficult position but Iím sure your Gran doesnít mean to make you feel so desperate. MND alone is enough of a curse, without the additional health problems she has, so it makes her, and your, situation so much harder.

    I canít remember whether your Gran has CHC or local authority funding? Perhaps you could talk to either CHC or your Granís social worker about finding a home that is more able to provide adequate and appropriate care for her?
    Dina

    Trying to keep positive, but not always managing.

  7. #37
    Forum Member Broostine93's Avatar
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    Hi Ellie,

    Absolutely agree, yes. I think her age and stubborn personality (almost cutting nose of to spite face type attitude) are causing a lot of the problems here. I have asked her so many times if she wants to move, either to another nursing home or into a hospice- she always says no (I think she is frightened of having to 'explain herself' to new staff all over again). I see this on a fairly regular basis at the current home, with some new staff coming in to replace the ones that are leaving. Last night was a crazy example- I confirmed that one of the newer carers that she really likes was going to be half of the partnership to be changing her for bed/toileting her and she cried with elation because it wasn't one of the others that are either (in her words) 'rough' or 'don't know how to use the hoist properly'. I am ashamed to say I nearly lost it with her over this (not her fault, of course- it was my frustration at the situation coming out). I was saying 'you should not be crying because you're so happy that it's one particular carer coming to help you- it's not right. Either, there's a serious problem that you need to let me address with the manager or your anxiety/stress levels are way too high and you need a nurse/doctor to asses you properly. I would not normally put my foot down like this, but this is ridiculous'. She just said 'no'. What more can I do?

    Thank you Jacqui- I have emailed you directly.

    Really want to thank you, Ellie- you're always there when I'm about to go crazy!
    "This, too, shall pass"

  8. #38
    Forum Member Broostine93's Avatar
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    Quote Originally Posted by Gillette View Post
    Oh, Broostine,

    I’m so sorry you are feeling desperate. You are in a dreadfully difficult position but I’m sure your Gran doesn’t mean to make you feel so desperate. MND alone is enough of a curse, without the additional health problems she has, so it makes her, and your, situation so much harder.

    I can’t remember whether your Gran has CHC or local authority funding? Perhaps you could talk to either CHC or your Gran’s social worker about finding a home that is more able to provide adequate and appropriate care for her?
    Hi Gillette,

    She does have CHC funding, but she flat-out refuses to move elsewhere. I daren't do anything 'behind her back' because then it's taking even more control away from her. It's so hard knowing how to make this horrid situation even slightly more bearable.
    "This, too, shall pass"

  9. #39
    Forum Member Kayleigh's Avatar
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    Hi Chrissie,

    As your Gran has CHC funding then the care home should be receiving all the funds they need, from the NHS, to ensure that they can fully meet all of your Gran's assessed care needs i.e. the care home staff should be meeting all of your Gran's assessed care needs and not relying on you or any other visitors to do their work for them.

    Also, I would have thought that if your Gran's assessed needs increase or change, the care home should be ready and prepared to meet those needs (as far as they are able to - because not all care homes offer care for patients with very complex needs).

    Your Gran should have 'a care and support package' which meets all her 'assessed needs', and these should be re-assessed within the first 3 months and at least annually thereafter. For further details, please see the NHS guidelines (scroll down to headings 'Care and Support Planning' and 'NHS continuing healthcare reviews'):-

    http://https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

    Love
    Kayleigh

  10. #40
    Forum Member Terry's Avatar
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    Hi Chrissie;

    It's not that uncommon for Mnd people not to accept things that would improve their life. I don't know why, maybe they don't want the bother or to bother others and burden then.

    The trouble is that they are forcing their carers and people around them away. So what ever you try to do to improve her life is wasted. She maybe thinks by keeping at a distance, protects you from heartbreak etc but it has the opposite effect.

    Sorry for my ramblings.

    Hugs Terry

    Don't be so hard on yourself, you are trying everything that can be done, what more can anyone ask.

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