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Thread: Swallowing at night

  1. #1
    Forum Member
    Join Date
    Aug 2016

    Swallowing at night

    Hi every time the carers put my mam to bed I check on her when they leave , but tonight she was screaming at me she canít swallow & get her out of bed , can any1 suggest when this happens what can I do I mess with her pillows so she can swallow
    But tonight was really hard when she was screaming at me why didnít she shout at the carers for not putting her comfortable
    Itís so hard caring for my mam I know itís not her fault but mnd is so cruel
    Is this a sign things are getting worse ?

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Try to keep calm as it only escalates when that happens;

    She might have been sort of OK when they were there and perhaps they were rushing to get away.

    Perhaps ask her if she would like to be on her side or if she would like her head and shoulders up higher to breath better and swallow easier. Just ask her yes no questions and one at a time slowly.

    I do hope both of you get a reasonable rest.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member WendyWooG's Avatar
    Join Date
    Oct 2015
    find a quiet time of the day when it's just you and your mum. Ask her if she would be willing to practise with you. Its likely that she will want to be more upright if swallow is a problem. Have lots of pillows handy and listen very carefully, sometimes it is very hard to describe what we need. I have lost most body functionality so it can take a while.

    if you choose a time when neither of you is tired and there is no pressure things will go easier.

    once you are able to get her comfy make a note of the set up the then show the carers what to do.

    if you have lots of different carers take photos at each stage and print it out on an instruction sheet with a little description to help. It sounds like a lot of work but is so worth it. Also if she is regularly calling you just after they leave. Make it a habit to check she is comfy before you let them go.

    if she doesn't have a hospital bed look into getting her one. If she has any hand function at all it will give her some control and it will make life easier for you.

    good luck


  4. #4
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi, I wonder if your mum's saliva is the underlying issue? Swallowing when lying on one's back can be very difficult for some people - unswallowed saliva the pools in the throat, which can feel quite scary. She might not feel this immediately on lying down, so she may be comfortable when the carers leave. If this is happening, there are meds to reduce saliva production.

    Another consideration is her breathing - is she comfortable breathing? If she feels panicky, that will exacerbate things.

    As Terry & Wendy said, sleep position is important. If your mum can identify a good pillow arrangement, take a photo of it and hang it above her bed for reference. If she needs a hospital bed, talk to her nurse.

    Hope a solution can be found.

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

  5. #5
    Forum Member marieline's Avatar
    Join Date
    Apr 2012
    Perth Australia
    Hello Nightowl, i imagine that your mother is new to MND so is therefore dealing with a lot of scary symptoms that given time she will learn to manage. The biggest problem is fear. so she learn to relax (not easy when simple actions are no longer possible. The more time she gets with the disease the better she will get at managing but the first step is to see the MND team. Speech therapist, physiotherapist. they will be able to train you and her to deal with stuff like mucous management, swallowing, etc.
    best wishes Marie

  6. #6
    Forum Member
    Join Date
    Aug 2016
    Thank you to all that replied I think it was the carers rushing her into bed & not putting her comfortable
    They are always the same in a rush to get out of the house they never spend the 30 mins at night she is they last call at 9.45 they even try to come early when I haven’t given my mama medication
    I will speak to the team soon about swallowing she has a cough machine to help ,
    She has a hospital bed but can’t use the controls due to the weakness in her hands
    I will be putting posters up on the wall soon
    Thank you all for your advice I will be back again no doubt to ask
    Thanks Tania

  7. #7
    Forum Member
    Join Date
    Jan 2017
    You can ask her GP for a patch to reduce excess secretions. Called Hyoscine transdermal patch. Looks like a plaster, goes behind the ear.

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