SHOULD BE Nil by mouth

Discussion in 'I care for a person with dementia' started by Roses40, Apr 15, 2015.

  1. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    My Dad is at severe risk of aspiration. When he was in hospital he refused to allow the use of a feeding tube so the doctors agreed along with the nursing staff and we, the family members that treatment would be withdrawn. He was supposed to go into a CH for assessment but discharged himself after three hours. I tried to leave him to cope on his own, the rapid support came in after a week and offered carers however he doesn't think there is anything wrong with him. I moved in with him a few weeks ago. We have lost my Mum to mixed dementia within this time also. He can't dress, shave, cook etc. thankfully he is so weakened by the aspiration pneumonia that his critical aggression is hopefully a thing of the past. He is grateful for the help I give.
    My problem now is that I can't figure out what foods are least likely to go down the wrong way. I've been making blended soups, casseroles and the like but he seems to choke less when he has fish n peas from the chippy or a sausage roll or even toast. Any suggestions please???? X
     
  2. Perdita

    Perdita Registered User

    Jun 22, 2009
    219
    Suffolk, Uk
    I sound like a broken record but I give mum drinking yoghurt (Lidl's is great) mixed with full cream milk and also often add a spoonful of milk powder to add even more calories, sometimes I mix in ice cream too, you could add a banana or strawberries (but not if your dad's tummy isn't accustomed to fruit lately as it upset my mum's tummy)

    My GP said replacing body salts is quite important so I try mum with crisps or salty Tuc type biscuits which oddly she will sometimes eat without choking.
     
  3. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    Thanks for the information. He isn't good with fruit but I will try the crisps and tuc biscuits x
     
  4. Allypally52

    Allypally52 Registered User

    Mar 11, 2014
    78
    My dad is developing a poor swallow reflex and has had an assessment from a Speech and Language Therapist so that may be something you could ask for. She left us with a helpful booklet about foods at different stages and general advice.
    My daughter is a SALT too and told me that people wrongly think that for swallowing problems it's food like sausages etc that should be avoided but actually it's food where there's a mix of textures as the swallow reflex gets confused and is then prone to allowing food to go down the wrong way, so a no-no would be minestrone soup, or muesli with milk. Also peas and other smallish things with 'skin', like some fruits (blueberries were mentioned as dad likes them!) are dodgy. In fact dad did aspirate a pea once and coughed it up after he'd gone to bed.
    I do feel for you as my dad is resistant to help and thinks he copes on his own, although he never is on his own. Tricky times x
     
  5. BizzyLizzy

    BizzyLizzy Registered User

    Apr 13, 2015
    10
    Hitchin, Hertfordshire
    My dad also has a declining swallow mechanism and we too were given a referral to a Speech and Language therapist who also provided us with a useful list of foods. She also arranged for dad to be prescribed a 'thickener' that is administered to all liquids to prevent him choking. This works a treat. She also gave us a list of vocal exercises for him to do to try and strengthen the muscles that are deteriorating in his throat. Ask his GP for a referral as soon as you can it's really worth it.
     
  6. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    I've made a mistake by asking for a referral to a nutritionist. I will ask for a referral to the SALT team as it seems from your replies that this is where I might get some information. I should have realised that someone on TP would be the best avenue to go down. I did get a phone call from the nutritionist offering me an outpatients appointment in June even though my Dad is housebound due to lack of mobility. The only professional in our lives now that I have moved in with him is a really manly looking physio guy which is great as my Dad is a "mans man".
    I think I follow, a little bit, what you are saying about not mixing the different textures and it makes sense as he says he doesn't want butter beans anymore as the "skins" get stuck. I wish I had more confidence in what I am doing. Rose x
     
  7. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    Forgot to ask can I buy the thickener over the counter and would I put it in cups of tea? Rose x
     
  8. nitram

    nitram Registered User

    Apr 6, 2011
    19,022
    Male
    North Manchester
    "... can I buy the thickener over the counter and would I put it in cups of tea?..."

    Yes , >>>an example<<<,but see if you can get a prescription for some, this would help to build up a picture of your Dad's condition. It can go in tea, whether he accepts it or not is another matter.

    When you contact SALT make it clear that it is swallowing difficulties with a risk of aspiration and not slurred speech, this can cut the response time considerably. In my wife's case it changed days/weeks to a maximum of 4 hours.
     
  9. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    Thanks Nitram. The physio guy came today and has made me very nervous as he says he has spoken to the GP and the SALT team have already assessed him as needing a feeding tube and as he has rejected this they have rejected us? My words not theirs. What scared me is that he suggested that I need to get the fact that it is Dads decision not to have a feeding tube, as if he chokes to death there is no documentation of this fact and, well I'm not sure whether he was suggesting that this, on paper might look "iffy" I think I'm going mad. Love Rose x
     
  10. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    Ive been reading up about dysphasia the last couple of days and now realise that in retrospect it was the swallow problem that caused the aspiration pneumonia and not the other way round. I thought the swallow problem was because he had the aspiration pneumonia. I've ordered some thickening granules from the chemist and he agrees to try them. I've got liquid paracetamol instead of tablets. He's trying to keep his chin tucked into his chest when he swallows (when he can remember). I found a site that showed five levels from puréed to modified foods. I remember seeing "modified diet" written above his bed in hospital so am feeling a bit better to have more information to work from.
    Any other advise or tips would be gratefully accepted, Rose x
     

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