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My mum struggling with secretions/mucous

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    #16
    That's great news Lorri - it must have taken quite a bit of courage for your mum to accept those appointments, facing her demons can't be easy.

    If she's comfortable with using the nebuliser, maybe they'll prescribe some drugs to use in it for the mucus. Pineapple juice works by thinning the mucus, it's another weapon against the plague, lots of water too as dehydration makes secretions thicker and stickier - hopefully the hospice doctor will have ideas next week when she is seen face-to-face.

    There are supplementary high fat drinks for helping to stem weight loss, such as Calogen (dairy free) so maybe ask her GP or hospice doctor. These don't replace her food, but are extra, high energy calories. On dairy increasing mucus, it's worth trying if dairy affected her mucus production previously, but unfortunately it's not the driving force for this mucus...

    Another thing to ask the hospice people is to help you do a CHC application for your mum (Continuing HealthCare = CHC) for funded care. This explains what CHC is: https://www.nhs.uk/conditions/social...ng-healthcare/

    And well done you!!

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

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      #17
      Spot on GaryM Ensure is heavy on milk protein.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      • I thought they put Ensure in tractors. Pretty horrid stuff.

        It sounds like your mum needs a comprehensive CHC (nursing) care package.

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          #19
          Originally posted by Graham View Post
          I thought they put Ensure in tractors. Pretty horrid stuff.

          ........

          😂😂😂
          Each day is made easier with a bit of humour.

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            #20
            Thought I would update you as you've been so kind.
            The routine resp appt went ok, mum is stable although her bicarb level has gone up a tiny bit to 33 and the carbon dioxide is 5.4. Just encouraged her to use the ventilator more at night, but she finds it hard if saliva isn't good and she really has exhausted all the treatments/medications for this.
            She gave back the cough assist as completely hates it!
            The mucous will apparently just get worse as time goes on because thats the nature of the disease and with cough getting weaker she find it hard to clear. The doctor said her biggest risk is a chest infection but so far she has never had one.
            Going to see he again in 4 months so that was reassuring to my mum to think they are expecting her to be 'above ground' as she puts it, in June.

            the hospice doctor ad nurse are calling in later to reassess her as the doctor hasn't seen her for few months, the nurse visited a couple weeks ago.

            She has lost some weight, around 4lbs but don't think the dietician is overly concerned as some of this will be muscle loss. My mum feels she wants to gain a couple pounds though for strength. she's 78 now and I cant see her getting any stronger physically but she is still totally self caring and lives on her own with one of us going in everyday just to reduce her loneliness and do the odd things for she cant do.

            Lorri x

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              #21
              Thanks for the update Lorri. Your compassion and kindness come across beautifully in how you write about your mum, whom you clearly love deeply.

              Look after yourself too.

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

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                #22
                Lori, I can’t add much to all the lovely forum users that have commented already. But I wanted to send you and your mum positive energy over the network. This must be very exhausting for all of you. I hope that solutions are found rapidly. Love Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #23
                  Thank you for keeping us updated Lorri,

                  It must be so stressful for you. You deserve to feel very proud of yourself for the love and devotion you show to your mum.

                  You take care,
                  Love Debbie x

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