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Thread: No To Peg and No To NIV

  1. #11
    Forum Member nunhead_man's Avatar
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    Hi Broostine93

    I am sorry to hear about how your grandmother is progressing - and I am impressed by your perception of your circumstances.

    It has made me think about the difference between a relatively slow and a relatively fast decline and perhaps it is in that very urgency that you can find some space to make some memories with your grandmother.

    I am a digital tourist rather than a digital native so I wonder practically what those memories might look like - a bit of Youtube video, some images stored in local storage - of some people doing something that is in some way typical and evokes other memories?

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #12
    Forum Member Ellie's Avatar
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    You're spot on Chrissie - those we love the most are the ones we hurt the most It shouldn't be that way, but it is... Sometimes it's to cover the shame that we need help or even the perverse notion that pushing our loved ones away will mean they won't miss us so much when we're gone...

    Your Gran is so very lucky to have you in her life.

    Hope your fiance is there for you and it's important to get time with him too.

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

  3. #13
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    Hi Andy,

    I have a tendency to over-analyse people's behaviour so I can see why people do the things they do and say the things they say, regardless of the situation I suppose it's quite a good thing in this case!
    Yeah, I mean we are having some laughs at some situations (mostly to do with the clumsiness associated with the disease itself), but it's all contributing to quite warm memories that are being made in a bad situation. I do have some old home videos with my Gran on and, honestly, I think making any photo/video memories of her now would upset her as she's given up with her appearance in many ways.

    Thank you kindly for taking the time to reply to my post

  4. #14
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    Hi Ellie,

    I think you're absolutely right. Guilt and shame are such driving factors in how we treat those around us and, of course, those feelings will be stronger when you have a closer relationship with someone.
    To put some perspective on it- I think my Gran and I are much closer than your 'typical' grandparent/grandchild relationship because she's sort of 'replaced' my parents throughout my life. Unfortunately, my Mum was a drinker and quite a violent one at that- both my Gran and I went through the same experiences with my Mum (trying to help her/nursing her through withdrawal/being 'normal' with her when she wasn't drinking and was back to her old self etc.) Mum unexpectedly died Aug 2017 and that experience brought Gran and I closer still. So really, we're both still grieving whilst we're going through this MND nightmare, so I dare say some of that grief is still coming out in both of us, hence our rather more frequent outbursts than you'd expect under more 'normal' circumstances.
    (Apologies for the long reply, by the way! I don't quite know how I managed to write so much- just went off on one then!)

    My fiance has been brilliant- we're trying to take some time together when we can, but he understands the way things are and knows that we will have 'our time' at some point in the future. He assures me he's 'not going anywhere'

  5. #15
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    Hi Chrissie,

    You are doing an amazing job and your Gran is so lucky fo have you to love and support her.
    Your fiance sounds brilliant too .. no more than you deserve !

    No magic words unfortunately at this incredibly difficult time but I am thinking of you.
    Love Debbie x

  6. #16
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    Thank you, Debbie
    I sometimes don't feel like my Gran feels so lucky to have me around- I feel very taken for granted recently, I must admit x

  7. #17
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Broostine93 View Post
    Thank you, Debbie
    I sometimes don't feel like my Gran feels so lucky to have me around- I feel very taken for granted recently, I must admit x
    Hi Broostine93 / Chrissie,

    I can understand you feeling that you are being taken for granted. Please, don't forget that it tends to be those we love the most and whom we know we can rely on that we take mostly for granted. Your Gran knows how much you love her and that you would do anything for her and she feels safe in that knowledge. Her taking you for granted is an indication of the strong bond between you. Sending hugs to you both.
    Dina


    Trying to keep positive, but not always managing.

  8. #18
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    Quote Originally Posted by Gillette View Post
    Hi Broostine93 / Chrissie,

    I can understand you feeling that you are being taken for granted. Please, don't forget that it tends to be those we love the most and whom we know we can rely on that we take mostly for granted. Your Gran knows how much you love her and that you would do anything for her and she feels safe in that knowledge. Her taking you for granted is an indication of the strong bond between you. Sending hugs to you both.
    Hi Gillette/Dina,

    I think it's a bit more than that. For example, I was round to do a few mini-jobs and wait in for the fire department to come round and fit a new fire alarm (requirement of social services, apparently) the other day and, I thought 'I'll stick a film on- it'll take her mind off things and we'll be doing something we used to do all the time, before all of this so it'll be nice'. They turned up about 30 minutes in to the film, did their thing and then left. Immediately, she says 'okay, you can go home now' so I'm there thinking 'hmm, maybe she's feeling bad that I've had to sit in waiting with her'. So, I decided to stay and finish watching the rest of the film, just to spend some 'normal' time together. She made a point of being fidgety in her chair like she was uncomfortable and looked like she hated every minute of the film, got me to do random jobs for her while the film was still on so my attempt to just sit and spend some time together was absolutely wasted. It's things like that that are really starting to annoy me, along with comments like 'i told the carer that the house isn't as clean as it used to be' when I am absolutely killing myself trying to keep her house clean and as tidy as possible every single day (whilst ignoring the housework in my own bloody house!) Another one, from yesterday- she'd seen her old next door neighbour's daughter for the first time since being diagnosed and Gran says 'she said she'd cook me a proper dinner and bring it over'. I said, 'that's so lovely. I would do that myself for you, but I really don't have the time to cook like that'. Response 'you don't cook anyway'. My response 'Not anymore because I don't have the time. I used to, though'. Silence. I took it like 'well, you do everything else for me. Why not cook as well?' (Sorry, this turned into a much bigger rant than I'd originally intended!)
    I would absolutely love a simple 'don't come round just for one day tomorrow. I have a phone and I will call you if there's anything urgent. I will be fine as I have 4 carers a day as it is, plus a personal alarm in case of emergency. Go and spend some time doing the things that you need/want to do for a change'. Considering there are 4 carers a day, I really don't see why I need to be there every single day Sorry, I am having a really tough time adjusting to this new prison-like life of guilt

  9. #19
    Forum Member Lynne K's Avatar
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    Hi Chrissie. It sounds to me like your gran may be struggling with her change from being the older wiser care giving one to be her that is needy. She may not know how to 'be' with her loving granddaughter, you. It must be really hard for you. How's she been in the past when there's something or other that needs sorting between you? What would happen if you told her sensitively how you feel? Do you think that she'd listen and sort it out with you or take off on you? I know how it is to feel that you are treading on glass. Good luck, Lynne x
    Last edited by Lynne K; 7th May 2019 at 15:56.
    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.

  10. #20
    Difficult situation Chrissie, maybe Grandma is being critical as its her only way of keeping control of a situation that's out of her control.
    Everybody reacts in different ways, our daughter has barely been near her Dad since his diagnosis and won't speak to me anymore.

    Regarding refusing treatment my husband has won't have a PEG. It's even written down in his ADRT. He just won't entertain the thought. I don't like it but it's his decision.

    Keep up the good work! X

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