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Thread: Pain/Agony

  1. #11
    Forum Member MNDConnect's Avatar
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    The MND Association produces a booklet called Understanding my needs. This can be quite useful if someone is in hospital as you can complete lots of information about the person, including things like their preferred positioning.

    The booklet can be downloaded from the MND Association website here

    If anyone would like a hard copy sending out in the post then please send us a private message with your details, email us at mndconnect@mndassociation.org or phone us on 0808 802 6262 and we will arrange this for you.

    Best Wishes

    Rachel
    MND Connect Adviser

  2. #12
    Forum Member Kayleigh's Avatar
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    Hi Chrissie,

    Sorry to hear your Gran is very unwell. I can understand how frustrating it might be for her, not being able to communicate easily. It would be a good idea if all hospitals provided communIcation boards for any patients who needed them, but I don't know if any hospitals do.

    There are free downloads of communication boards on the following websites:-

    - Amy's Speech and Language:-
    https://www.amyspeechlanguagetherapy...on-boards.html

    - Widget Health website. You will see a box entiltled 'Ordering Information' - click on 'English A4'or 'English letter' and the communication boards 'Bedside Messages' will be downloaded:-

    http://https://widgit-health.com/downloads/bedside-messages.htm

    I hope your Gran is feeling much better soon. Hopefully she has been given some effective painkillers to make her much more comfortable.

    Love to you and your Gran,
    Kayleigh x

  3. #13
    Forum Member Gillette's Avatar
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    Hi Chrissie,

    Sorry to hear that your Gran is unwell. I wish her a speedy recovery. Giving her a pen and paper was a good idea - I hope she will use it as communicating with the staff will make her stay easier. She is so very lucky to have such a caring granddaughter as you.

    I'm glad your employers are being supportive - I'm sure that helps you.

    Take good care of yourself, Chrissie. Here are some virtual hugs to start you off. ((((()))))
    Dina

    Trying to keep positive, but not always managing.

  4. #14
    Forum Member Lynne K's Avatar
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    Hi Chrissie. I wont rewrite the whole text but some.

    I'm glad that your gran has at last gone to hospital for tests. It's about time. I think that the care home ought to have done so much sooner. But at least she is in the right place now. Hopefully she'll be a bit more comfy in a hospital bed.

    Please update us when there's any news.

    Hopefully you can now sleep well as some of the worry is removed. 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.

  5. #15
    Forum Member Broostine93's Avatar
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    Thank you all for your helpful suggestions and virtual hugs!

    I went back up to the hospital last night and it seems that it's a really bad chest infection, verging on pneumonia. They're keeping her in for a couple of days (though, this was the info given to me by Gran, rather than a doctor so I may need to have a more lengthy chat when I go up today- it's silly the things you don't think to do at the time when you're panicking!)
    I really felt for her last night- she'd not been to the loo since she first woke up in the morning in the nursing home and she was bursting when I turned up at the hospital. She was still in the AMU, waiting for a place on the ward- they don't have any transfer aids at all (i.e. no hoists and no rotundas). Gran has never been able to use a bedpan (even before MND struck) so that failed. They tried her with a she-wee and that failed, too- seems she can't physically make herself 'go' unless she's sat upright. The poor woman had to endure being rolled into an adult nappy (which still didn't resolve the problem as she wasn't sat in the right position even to be able to 'go' in those). Now I'm worried about a urine infection looming. It never rains, it pours!
    I'm going back up after work today to hopefully see her a bit rested (though, let's face it- who actually gets a decent rest in hospital?) and hopefully a bit healthier.
    I know this sounds a bit selfish in light of what's happened, but I've been quietly begging for a break for a few weeks when I've been visiting at the home (in a way that won't make her feel guilty, as I know that can make her snappy)- this is the exact reason why I've been asking for one. I've not been away from Gran for more than a day since her diagnosis at the start of March- what with the many emergency situations, housework things when she was living at home, carers at home being rubbish, finally moving into the nursing home and then sorting the house out ready to give back to the council and then a chest infection the first week in the nursing home and all the panic/running around that that lot entails, plus not taking any time off work 'just in case' I need the days for something Gran-related, I am absolutely exhausted. I figured that, if I'd have had a few days away somewhere, I could at least recharge a little before the next emergency situation struck- alas, that was not to be and here we are.
    I'd love to say that one of the other relatives would do all of this in my stead, but they wouldn't. They're the 'visiting' kind, not the helpful kind (i.e. first thing I did when I left hosp the first time yesterday was run to the nursing home and pack an overnight bag for Gran which I later took back to the hospital- none of the other members of the family would have thought to do it).
    Very tired of being the only person I can rely on in these situations!

  6. #16
    Forum Member Gillette's Avatar
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    Hi Chrissie,

    You are doing a fantastic job of overseeing your Gran's care, but you MUST take care of yourself. You cannot continue at the level you are doing without it having a serious impact on your own health. You risk having a major mental or physical breakdown. Either of those could make it just about impossible to run round trying to do everything and could take a very long time to recover from. It is easy to overlook caring for oneself but it is so important.

    You say that other relations are the 'visiting' kind. Perhaps you could cut back on visiting Gran, if they will be visiting. When you speak to the ward staff about Gran, you could tell them that you have had all the responsibility and done everything for Gran and need a rest. Explain that they can ring you any time and that you will ring them for updates on Gran's condition.

    Taking care of yourself doesn't mean that you love your Gran any less, it means that you want to stay well for her, so that you can keep helping her.
    Dina

    Trying to keep positive, but not always managing.

  7. #17
    Forum Member MNDConnect's Avatar
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    Hi Chrissie

    I'm glad they they have found out what was causing your Gran so much pain. Hopefully now they'll be able to make her feel a bit better.

    The hospital should be able to access a hoist. They may not have one readily available on the ward but it is something that they should be able to get. Especially as their current toileting solutions aren't working.

    You certainly don't sound selfish. You are doing an amazing job of caring for your Gran. Caring for anyone is exceptionally difficult and exhausting both physically and mentally. This is made so much harder when you are the sole carer. Make sure that you look after yourself and take some time for yourself. Your health and well-being is just as important as your Gran's.

    If there is anything that we can do then please don't hesitate to contact us.

    Best Wishes

    Rachel
    MND Connect Adviser

  8. #18
    Forum Member Broostine93's Avatar
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    Quote Originally Posted by Gillette View Post
    You say that other relations are the 'visiting' kind. Perhaps you could cut back on visiting Gran, if they will be visiting.
    I tried that one last week- she had a load of visitors throughout the day and I said 'if I'd have known they were all coming up, I'd have left you to it'. Response I got was 'no, I prefer it when it's you'. Lovely compliment, but totally missed the point. I know a breakdown is coming- I just feel such immense guilt if I leave her because I know she's silently crying out for me, if that makes sense.

  9. #19
    Forum Member Ellie's Avatar
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    Hi Chrissie,

    As Dina said, you need to look after YOU or you won't be any use to anyone It may be a case of 'tough love' for your Gran but you NEED a break...

    I go for respite care so my family get a badly needed break from me and they get to recharge their batteries. I notice a positive difference in my husband's mood after the break and it does me the world of good too.

    As for your Gran's loo issues, if the hospital hasn't sorted out something today, speak to the PALS people (Patient Liaison Service) in the hospital. As Rachel said, a hoist should definitely be an option. If PALS is useless, phone MND Connect.

    I wonder if she sat up, with legs over side of the bed and used a She Wee and some container, would that work?

    You're right to worry about a UTI - I'd also be concerned about dehydration and what about her bowels!!

    Take care.

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

  10. #20
    Forum Member Broostine93's Avatar
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    Quote Originally Posted by MNDConnect View Post
    The hospital should be able to access a hoist. They may not have one readily available on the ward but it is something that they should be able to get. Especially as their current toileting solutions aren't working.
    If there is anything that we can do then please don't hesitate to contact us.
    You would have thought so- they were adamant that they didn't have one in the AMU when we asked for it, though

    With regard to your last statement, Gran does have an OT and palliative care team- I've also finally got an appointment with the MND/Palliative psychotherapist which should help at least to stop me unloading all of my stress/upset/issues with my poor fiance.

    Thank you for replying!

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