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Thread: No To Peg and No To NIV

  1. #21
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    Quote 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

  2. #22
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    Quote 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

  3. #23
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    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

  4. #24
    Forum Member Lynne K's Avatar
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    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.

  5. #25
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    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

  6. #26
    Forum Member Lynne K's Avatar
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    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.

  7. #27
    Forum Member Gillette's Avatar
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    Quote 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.

  8. #28
    Forum Member Kayleigh's Avatar
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    I hope all goes well at your appointment Lynne. Kayleigh x

  9. #29
    Forum Member Lynne K's Avatar
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    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.

  10. #30
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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