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Thread: What Now?

  1. #41
    Forum Member Kayleigh's Avatar
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    I hope that your Gran's care home will start being more supportive of you Chrissie.

    You are doing everything you can to try and make sure your Gran is as comfortable as possible in the care home and the staff there should be doing the same.

    I can understand why your Gran doesn't want to move to a different care home because she has been through many stressful changes and adjustments, this year already.

    Hopefully, there is a way of making sure that your Gran can get all the care she needs where she currently is.

    It must be very difficult having to deal with this by yourself. Although your Gran might not always show it, I am sure she is very proud of her wonderful Granddaughter - who is a beautiful person, both inside and out!

    Hugs
    Kayleigh x
    Last edited by Kayleigh; 6th November 2019 at 23:48.

  2. #42
    Forum Member Broostine93's Avatar
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    Hi Guys,

    Thank you all for the supportive messages in response to my 'crazy crisis panic day'. Must admit, this week has been a particularly low one- crying all over the place like an idiot! (My therapist is writing to my doctor to confirm my mental state, due to Gran's condition, and I believe she is recommending some antidepressants to (in her words) 'take the edge off').

    I spoke to Gran last night, in as gentle a way as I possibly could, to try and determine a plan for the future.
    She's said that she will want to move to a hospice "when it gets really bad". I asked her what she meant by that and she said when her voice is gone and she is fully paralysed. I told her that, as she didn't let me apply for the medical LPA a few months ago, she will need to make these wishes known to her palliative team asap because they do not legally have to listen to me when the time comes. She understood this, thankfully. Still got nowhere with regard to communication devices, but at least a little bit of a plan for the (very near, I fear) future has been established to some degree.
    I cannot thank you all enough for being listening ears when you're all going through so much yourselves- you are such inspirational people and I feel very grateful to have found you all here
    "This, too, shall pass"

  3. #43
    Forum Member Terry's Avatar
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    Hi Chrissie;

    We just feel for you both and you have been trying so hard to improve things.

    Love Terry
    Last edited by Terry; 7th November 2019 at 17:27.

  4. #44
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    Oh Chrissie, What an impossible situation! I'm not surprised you feel low and panicked because you have such alot to cope with on your own.

    I can see why your Gran doesn't want to move but her needs are not being met and that's heartbreaking for you both. However you need to look after yourself both mentally and physically too. You are a devoted and selfless granddaughter and your Gran is lucky to have you. I am sure she knows this.

    Take Care of yourself and try and get some rest , easier said than done I know.
    Thinking of you both,
    Love Debbie x

  5. #45
    Forum Member nunhead_man's Avatar
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    Good evening Chrissie

    It seems you have made some progress and I feel for both of you - your Gran is clearly struggling with acceptance and you are doing so much to help her.

    As to antidepressants for you I can quite understand why somebody is suggesting you reach for the pills, but I do wonder if talking some of this out might be a better solution if you have somewhere to do this
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  6. #46
    Forum Member Broostine93's Avatar
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    Thank you, Terry and Deb

    Nunhead- I have been seeing a palliative therapist for about 2 months and it was she who suggested antidepressants (on top of our therapy sessions).

    It all came to a bit of a weird 'head' for me this weekend. I caught a cold/flu thing on Thursday night and Friday night I was just sent into a half-hour long crying 'fit' just because my dog didn't quite finish his 'business' outside when I let him out (he accidentally brought some of his doo-dah inside with him!)
    Even though I felt very ill and there's signs all over the nursing home not to visit with cold/flu symptoms, I knew Gran would be more distressed if I called to say I couldn't make it than if she actually caught my cold/flu and got pneumonia. I asked her outright when I got there and she nodded her head, 'yes'. Told her I wasn't going to visit at all due to feeling so rubbish and she panicked and wrote down 'but what about tomorrow?'
    This is all so ridiculous.
    Can someone send a more adult-y adult to say 'this is how it's going to be- no arguments!'?
    "This, too, shall pass"

  7. #47
    Forum Member MNDConnect's Avatar
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    Hi Chrissie

    I'm sorry to hear that you've not been well. It sounds harsh but sometimes you have to put your foot down and put yourself first. You aren't well and you need to look after yourself. Your well-being is just as important as your Gran's.

    Apologies if this has already been discussed but would your Gran be able to use something like Skype or FaceTime? That way you could be in contact but without physically having to go to the care home.

    Best Wishes

    Rachel
    MND Connect Adviser

  8. #48
    Forum Member Broostine93's Avatar
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    Quote Originally Posted by MNDConnect View Post
    Hi Chrissie

    I'm sorry to hear that you've not been well. It sounds harsh but sometimes you have to put your foot down and put yourself first. You aren't well and you need to look after yourself. Your well-being is just as important as your Gran's.

    Apologies if this has already been discussed but would your Gran be able to use something like Skype or FaceTime? That way you could be in contact but without physically having to go to the care home.

    Best Wishes

    Rachel
    MND Connect Adviser
    Hi Rachel,

    No, she can't/refuses to use any tech (she can't even use the most simple of mobile phones, unfortunately). When I am there, she gets me to adjust her pillows (this is now taking up to 10 minutes to get 'right'- time the carers simply don't have to spare). I also perform physio on her feet due to their feeling numb/painful (again, the carers don't do this at all, despite having been shown by the physio how to do all of this only a couple of months ago). I fetch tissues, sort pjs out, sort fresh clothes for the next day, empty her rubbish bag etc.
    Yesterday, I walked into her bathroom (putting her rubbish into the bin in the bathroom) to find that the carers had not emptied her commode (sorry to be graphic, but it was a #2 and the stench was horrendous). I told the carers to come and sort it out, but even that took nearly an hour for them to come and do. I was horrified at the thought of my Gran having a visitor other than me accidentally stumble upon the sight (I've seen it all before, so doesn't phase me). (I also realised I could have emptied it myself, having done it before, but, to be quite brutally honest, why on earth should I when the carers are being paid to do such things?)
    My Gran's 'need' for me to be there clearly boils down to 2 issues: 1) the carers are under-staffed and are therefore performing the bare-minimum for each resident. For an MND patient, it's obviously not good enough. 2) Anxiety. Gran's on Lorazepam, which appeared to work okay-ish for the first couple of weeks, but is no longer having the same effect. The nurses don't listen to me about any suggestions of medication (neither does Gran, to be honest), so I have to put up with the panic/stress/anxiety-type mood-swings by trying to be there as much as possible to try and minimise them.
    I did speak to the palliative team last week and they are finally talking to the speech therapist to arrange some kind of picture cards for Gran to use (I imagine this is along the lines of 'toilet'/'hungry'/'pain' etc.) I also asked them to liaise with Gran regarding her wishes to move to hospice when her limbs are 'gone' (as of Saturday, Gran's told me her right arm is now feeling 'heavy' so this one is also on it's way out now). They told me that the hospice will only take people when they are within their very final days (we're talking 2 week life expectancy) so we're going to have to put up with this nursing home more-or-less until the very end.
    "This, too, shall pass"

  9. #49
    Forum Member MNDConnect's Avatar
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    Chrissie, you do so much for your Gran. Far more than should ever be expected of you. Having a loved one in a care home can be so difficult as they are always short of staff and rush to get things done. Emptying a commode is, however something that the staff should be on the ball with. It's basic care that if they help a resident with a commode that they should go back soon after to empty the commode and not just leave it.

    The care home should be linked to a GP surgery and the GP would usually visit regularly. It might be worth speaking to them about your Gran's medication so that it can be reviewed. Is there anything in particular that makes your Gran anxious?

    Rachel

  10. #50
    Forum Member Gillette's Avatar
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    Hi Chrissie

    I apologise for jumping in on this thread but, having read through it, I am very concerned about your wellbeing. I really do understand that you want the best for your Gran *but* you must be kind to yourself and that means doing things to take care of yourself.

    The way things are going you could very easily crack under the strain. If that happens, it could have a negative effect on the rest of your life. I know that sounds melodramatic but itís true. And, believe me, no- one would choose to live like that.

    Please, please take care of yourself
    Dina

    Trying to keep positive, but not always managing.

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