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    #16
    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
    "This, too, shall pass"

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      #17
      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.

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        #18
        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
        "This, too, shall pass"

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          #19
          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; 7 May 2019, 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.

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            #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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              #21
              Originally posted by Lynne K View Post
              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
              Hi Lynne,

              When we were going through the long process of hospital appointments/GP visits etc. to try and find out why my Gran's foot wasn't 'working' correctly, she actually flipped out at me when I was trying to offer solutions/quicker diagnosis. She screamed at me to leave her house, threatened to call the police on me for not leaving (I just went in the kitchen to see if she'd calm down at this point), she called me all sorts of names etc. It terrified me, upset me to the point I went home in tears and I didn't see her for three days because I was afraid of her reaction to see me again. Funnily enough, the next time I saw her was the night we ended up in A&E because her symptoms had escalated, causing dizziness/drooling/affecting the leg more, so, in a weird way, it kind of got us to where we needed to be.
              Having said that, I really don't want to go through another bout of that to get to where we need to be now (I have a real problem with arguments/shouting, more than most people, and I avoid conflict at all costs) x
              "This, too, shall pass"

              Comment


                #22
                Originally posted by Music man's wife View Post
                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
                Hi MMW,

                I think you're right- I also think she's feeling guilty about me having to look after her (though, clearly not that guilty or she'd take me up on my suggestion to get a full-time carer at the very least).
                I can see why your daughter has reacted the way that she has- this diagnosis has the ability to scare most people away, though I am terribly sorry that your husband and yourself have the loss of seeing your daughter on top of everything else. The world is cruel sometimes x
                "This, too, shall pass"

                Comment


                  #23
                  Hi Chrissie,

                  I am very sorry for your impossible situation. I really appreciate how hard and frustrating it must be for your Gran to accept help from carers and health professionals.

                  However, you must look after yourself and have some "me time " . You need time to relax with your partner too. You shouldn't feel guilty because taking care of yourself will benefit your Gran too .

                  Your Gran is lucky to have you in her life.
                  Love and hugs,
                  Debbiex

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                    #24
                    Hi Chrissie, I'm very similar to you I think in not wanting strife and not able to take part in shouting matches. I would have been really upset to be spoken to how you described. My heart goes out to you. I'm off out to the MND Clinic now but will message again later. Lynne x
                    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.

                    Comment


                      #25
                      Thank you, Debbie- I am trying to tell myself to spend some time with my partner, but I don't half get guilt-tripped for it after I've done it.

                      Lynne- Good luck at the clinic. I hope you get on okay
                      "This, too, shall pass"

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                        #26
                        Thanks Chrissie. Just arrived. Always long time consuming queue to get into Salford Royal, then another similar queue to park. But we always leave lots of time. I'm in the foyer now and hubby gone to park after wheeling me here from the drop off point. Appointment 1pm. Lynne x
                        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.

                        Comment


                          #27
                          Originally posted by Lynne K View Post
                          Thanks Chrissie. Just arrived. Always long time consuming queue to get into Salford Royal, then another similar queue to park. But we always leave lots of time. I'm in the foyer now and hubby gone to park after wheeling me here from the drop off point. Appointment 1pm. Lynne x
                          Good luck at the clinic, Lynne.
                          Dina

                          Trying to keep positive, but not always managing.

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                            #28
                            I hope all goes well at your appointment Lynne. Kayleigh x

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                              #29
                              Appointment went OK thanks Kayleigh. All tests slightly different results but Miss A Chaouch Neurologist was happy with them. She says that she thinks I'm doing very well, But she asked me about if I get enough sleep and was concerned about what I told her. I struggle to get enough sleep because of back and hip pain mostly. Other pain problems sometimes wake me. None are caused by MND but my back is getting worse because I'm not walking as I used to (I had to keep moving to keep my back in good shape). She's going to write to my GP to ask for something to be done ie tablets. She said getting enough sleep is very important. Can you remember which of the painkillers causes muscle weakness so that I can avoid it. Is it Baclofen that is safe for us to take? I can't remember the name of the other drug beginning with 'c.' 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.

                              Comment


                                #30
                                Glad you're doing so well Lynne, MND-wise at least.

                                Yes, sleep really IS important, so hopefully your GP will sort out appropriate for your non-MND pain. Baclofem is an antispasmodic medication, rather than a painkiller - unless your muscle tone is quite high, it may not be suitable for you.

                                Hope you get that pain sorted out ASAP!

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

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