After aspiration pneumonia what now?

Discussion in 'I have a partner with dementia' started by thebes, Jul 4, 2015.

  1. thebes

    thebes Registered User

    Feb 10, 2014
    My dear OH came home on Thursday, a stone lighter, still coughing a bit and with a much worse swallowing problem than even a month ago. He is now to remain on puree C diet and syrupy liquids, which I hope to be able to make more interesting than the limited selection in hospital. We are so glad to be home and relaxing in the sun, in time to watch Wimbledon.
    Our GP visited yesterday and agreed with the concerns expressed by the hospital about the long term implications of the dysphagia as I am learning to call it. After about 6 months of stability he has had a another drop in function, even though being properly hydrated and on antibiotics has mean that in some ways he is brighter and has more energy than for several months. That has been the pattern of his AZ since diagnosis only 18 months ago, that he declines rapidly, then steadies for a while, before declining again.
    I am wondering how to make an eternal puree diet interesting to look at :confused:. he grazes and has little interest in food anyway?
    And how to get the recommended 1.5 litres of fluid in , in any form in food or these syrupy drinks?We managed 1250 approx yesterday, he sleeps a lot and is recommended to only drink (or eat) when he is wide awake and can concentrate on his swallow. So tiring, fluids he only manages about 150ml max before being too tired.
    It is lovely to have him home and see his smile and pleasure at being in familiar surroundings :D:D
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I'm so glad you have your husband home with you now Thebes.
  3. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    You should find some ideas about a purée diet >>>HERE<<< (125 Page pdf document)
  4. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    It is so good that your husband is now home and you are at least able to relax a little. Hospitals are such busy places and the to'ing and fro'ing takes it out of you I know.
    Others here have said that jellies are good, both water and milk but I have little experience to help I'm afraid. x
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    That is a really good book, nitram!
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Wow yes Nitram. Thank you.
  7. jan.s

    jan.s Registered User

    Sep 20, 2011
    I was told that Roger shouldn't have jelly or ice cream, because the consistency changes as it is swallowed, i.e. it becomes a liquid. He had thickened drinks and puree food to prevent aspiration.
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Thebes my husband has been on a puréed food and thickened drinks for over twelve months. The nursing home give him exactly the same as the other residents. The only thing he cannot have are chips so it is always mashed potato.

    His meat and vegetables are puréed and put on a plate the same as they would if they were left whole so it does look like an ordinary plate of food. He can have all meats including sausage and also fish.

    The chef makes him mousse every day but he can manage rice pudding and sponge pudding as long as it is mashed up with the custard or cream and becomes like a paste. This does not look so good but it tastes just as nice, I've tried it.

    Thickener is put in all his drinks including tea and coffee. He has fresh juice, lemonade, squash, smoothies and milkshakes and hot chocolate. Tea looks a bit weird thickened but as the taste does not change he drinks it as he used to do.

    He loves ice lollies, jelly and yogurts, all a good liquid source.

    I make sure he is full awake when he is fed but sometimes he does still have his eyes closed.
  9. oldman1952

    oldman1952 Registered User

    Apr 4, 2014
    Aspiration pneumonia is it time for PEG

    Hi Threbs, so sorry to hear of your husbands problem regarding aspiration pneumonia (A/P).
    I have recently cared for a person with Huntington's Chorea (H/C), it was difficult even for me with 40 years experience to watch him/her eat. He/she crammed and pouched food, coughed and spluttered and had frequent bad chest infections (aspiration pneumonia) (A/P) I took a video with their permission and at a team meeting with the speech therapist and the H/C nurse consultant showed it to them. With the evidence of the frequent A/P it was decided that the next step was to explore Percutaneous Endoscopic Gastrostomy. Each time a person becomes ill with A/P they become weakened. The person I cared for was in the loop many, many weeks before hand when we discussed the future of H/C and that they would not get better but their dignity might suffer. So I say when is it the time for PEG. If the person does not take an interest in food any more and the person's quality of life is suffering, the person should be given the choice. The person I cared for was much happier with most aspects of their life after having a PEG. They were much more tidy with little food splattered on their clothes and to go out without having to eat in public made them less embarrassed. Sorry to go on so but there is a life after A/P. Best regards Oldman1952
  10. canary

    canary Registered User

    Feb 25, 2014
    South coast

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