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Nothing to see here, just a rant!

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    Nothing to see here, just a rant!

    So I've written before about hubby's care plan, 4 visits a day and I get 5 waking nights every 4 weeks.
    Well it's all a bit of a nightmare really.
    The carers are never ever on time which means I've generally done what needs to be done by the time they arrive. Take this morning for instance, one of the carers was parked outside 15 minutes early. I was so chuffed. Anyhow they actually came in 10 minutes late as they had a kip in their car. To add insult to injury they never closed of the urine bag so hubby got a shoe full of urine and needed a complete wash and change.
    I could go on and on and however often I complain nothing changes.
    Anyhow both the district nurses and our MND coordinator say DO NOT CANCEL however how much can you take?
    Before I was tired now I'm horribly stressed, upset and tired.
    That's it folks, night night.

    Do you need to be in the house when the carers are there? And yes, I know it goes against the grain to leave your husband in the sole care of carers, but if you are always on hand to take up the slack and fix their errors, they may never assume responsibility if they think you're 'the boss'?? (It would obvs be easier to do this for day visits initially)

    My husband quickly learned to make himself scare if he was due to be in the house when my carers were here, as in the beginning they had a tendency to defer to him.

    Also, personally I'd have no problem tapping on that car window at shift start time and saying "we're ready for you" (but I'm a witch 😆)

    I'm sorry you're so stressed and frustrated, you don't need that...

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


      Oh my goodness. I would be spitting feathers. How horrible to think you have help and this happens. I don't know how GoPros work but i think I'd make myself scarce and video what they do! Ok that's me I'm not sure if it's the right thing to do but at least I'd know what is going on. I suppose if you hang around they'll just let you do it.
      so they don't want you to cancel! Surely there's some kind of complaints procedure.
      Denise xxx
      when i can think of something profound i will update this.