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Mum and her mask

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    Mum and her mask

    Hi all
    I'm helping to look after my mum who has had mnd for three years. My step dad is her main carer. I'm currently staying in hospital with her as she cannot get used to almost any mask she's given for her nippy and we are trying to find a solution. She's had various masks since August. The best one they have found us (no leaks or alarms) still dislodges when she yawns and she's left with a trapped lip which causes her pain and anxiety that the mask isn't working. Her co2 levels are high so that's why it is a priority.
    It is fine here in hospital when I'm sleeping near her but at home her husband needs to be in another room to get any sleep himself and cannot realistically sit up all night and look at her. She can't operate a bell or call loudly for help but can alert us with a quiet moan. The only thing I can envisage working is a night sitter of some description but local hospices have said none will touch the mask due to covid.
    She's recently been awarded Continuing Healthcare after a painful application process but with full support from the hospice and mnd clinic and gp. However I'm alarmed to find that CHC carers won't even use the PEG let alone the nippy. It seems ironic to me that the worst health you have awards you CHC and then they won't give you the care you need. Our private carer we have does the Nippy and peg but is beginning to find it hard on her own.and won't be allowed on once we have CHC in place.
    Does anyone have any support or ideas for how to keep an eye on someone with MND who can't move or speak, overnight with their mask, without becoming a zombie themselves through lack of sleep.
    thanks
    Charlotte

    #2
    Hi Charlotte,

    The Mask: I know exactly what she means when the mask moves with a yawn (and boy do we manage to open our mouths wide on a yawn!!) I had that problem until I got the strap tightness spot on - straps need to be snug but not too tight. My straps adjust in 3 places - jawbone, cheekbone and the top of the head - and, even after several yawns, the seal remains intact.

    Which mask has your mum now?

    Mine is the Amara View:
    Amara View.jpg


    Night Alarm: I use a baby monitor but that might not be sensitive enough to pick up your mum's groans, unless it can be turned up fully? If something was placed on her pillow, could she turn her head and tap a button or bell? I use a flat, wireless doorbell to get help during the day, when carers are in another room. How does your mum get attention in the hospital? Her hospital or community OT might have ideas too.

    CHC: I don't know the answer to your query but I'm nearly sure people on here with CHC have carers who provide all aspects of their care. Hopefully someone will give you their experiences and what's what in provision.

    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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      #3
      Thank you for your kind response Ellie. I really appreciate it. In hospital she's using me as an alarm - she sort of calls out and I get help or do what I can (I'm in the same room unusually - and amazingly!)

      Your ideas for alarms at home sound good. I got a doorbell for mum but she hasn't quite the strength left in her working finger to press it. Is your bell touch sensitive? I will think about the head movement and baby monitor too.

      She's currently using a Dreamwear mask which has silicone type straps which actually have air flowing through them and only fastens at the side. The ones with lots of fabric straps all slipped off. Unfortunately even after just two days of this better mask her skin is affected, but on the plus side the mask isnt leaking and it has brought her co 2 down.

      Thanks again for replying. Knowing you got to the bottom of the mask issue and it's not just us is really helpful.

      Charlotte

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        #4
        My hands are useless so I ring the doorbell with my head 😂 It has a sensitive touch pad type surface, not a button, so a large enough target to find. Look on Amazon and you'll see the different types.

        I lasted 2 nights with the Dreamwear mask, didn't like the noisy air beside my ears 😏
        ​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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          #5
          Sorry you didn't get on with the Dreamwear. I will definitely check out the head doorbell!
          thanks again Ellie.
          Charlotte

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            #6
            If your Mum has movement in a foot, elbow, knee etc, she could use that movement to click a button/press a bell.

            I used to have the bell strapped around one knee and pressed it with the other.

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

            Comment


              #7
              Charlotte, some people definitely have trained carers who do their meds, put on NIV, even look after traches 24/7, so you probably need to look through the paperwork your mum was given in relation to her CHC.

              You need to see what her assessed needs are - was she on NIV and had a PEG at time of assessment? If not, she needs to be reassessed (groan, I know) If she had them at assessment and they were noted, then they should be covered, as per this quote from the NHS website:

              "If you're eligible for NHS continuing healthcare, the next stage is to arrange a care and support package that meets your assessed needs."

              If the Nippy/NIV or PEG use aren't noted, then it's a reassessment to get her real needs noted.

              It's daunting, time consuming and frustrating, I know, and it shouldn't be a battle but it is...

              Good luck.

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

              Comment


                #8
                Thank you Ellie. We are being discharged today. Something is in the pipeline so fingers crossed. The hospital has been very helpful in pushing for better care.
                Best wishes
                Charlotte

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