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Do you use thickener in liquids?

Discussion in 'I care for a person with dementia' started by totallyconfused, Oct 9, 2019.

  1. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    392
    The Speech therapist said to start two weeks ago. The consultant today said to stop using them, it doesnt matter if she gets a chest infection, if she gets pneumonia he said to call him and he will organise pallitive care at home.

    She has a DNR in place.

    She loves her tea so wasnt great to see it thickened and she did notice.

    He said why are we prolonging her life by using thickener?Hes right really, I would love for it to be over soon for her.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    This is what the SALT team recommended for my husband. He doesn’t enjoy his tea with thickener. I may have a word with the nursing home about this tomorrow. Thanks for raising the issue.
     
  3. doodle1

    doodle1 Registered User

    May 11, 2012
    242
    Personally I would shoot the consultant. Aspiration pneumonia which is what you get from aspirating non thickened fluids isn't a very nice way to die.
    If your mum loves tea the way to make it with thickener is to make the tea as she likes it then put however many scoops of thickener in the bottom of another mug and slowly add the tea to it. That way it looks and tastes like tea.
    Did the speech therapist also say no ice cream,no ice lollies and no cereal without thickened milk? My mum has had aspiration pneumonia twice this year and it is very frightening for them
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    706
    Male
    North West
    #4 Palerider, Oct 9, 2019
    Last edited: Oct 9, 2019
    I don't know if anyone has heard of 'taste for pleasure' but it is quite fitting when there is nothing else that can be done and we admit to the risk of a pneumonia. Not so long ago this was just accepted, and then we have gone through a phase of extrordinary claims where clinicians daren't make this decision, and I am glad a consultant has had the sense to see it for what it is. It isn't about life being over, it is about enjoying what time is left, even a cup of tea as it should be.


    Edited: to change the word GP to consultant
     
  5. millalm

    millalm New member

    Oct 9, 2019
    3
    @Palerider you are so right! As long as you understand the risk of aspiration, or choking, and are willing to take that risk to let your loved one enjoy as many of the little things in life that Dementia has robbed them of, have the courage to ignore the 'experts'. Being POA I have had to make many life altering decisions for both my Dad who died 7 years ago, and my Mum 86 who is in late stages of dementia, but this is an easy one :) For my Mum it's eating mostly sweets so I buy cookies by the boatload and smile when the 'experts' mention diabetes lol
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    Thank you Palerider, my husband is on thickened drinks, he seldom drinks other than water.
    I think we are all in a dilemma.

    I just want him to be comfortable, he has decided that he wants to remain home and not go to hospital again.
    I said it was more risky but we had a deep talk and he has decided it was better to have me to hold his hand and talk to him. He has written a letter expressing this, witnessed as well. We also have DNR/CPR. Registered 'My Decisions' about end of life care. Both PoAs.

    However a Carer told me they have been instructed to call an ambulance and start CPR, she did say she herself would not especially as she was aware her patients would not want it.
    It sounded that the senior thought broken ribs are better than death. Even when a DNR was shown. The reason they may have collapsed for a reason other than the illness. The person who told me was very down to earth and not likely to be mistaken.
    Pneumonia used to be called the old man's friend, is Doodle right in your experienced eyes?
    My husband can choke on his own saliva.

    Do you know the legal situation? I felt shocked
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    706
    Male
    North West

    The legal situation is that if a DNAR is in place then a person should not be resuscitated, anyone who interprets that differently needs further educating. To distinguish, not to resuscitate is when the heart has stopped and there are no signs of life, this is not the same as someone becoming unwell but who does not suffer cardiac arrest, in which case they need to be seen by a medical professional and given if necessary appropriate treatment.


    I believe the old saying correctly is 'pneumonia is an old mans best friend' and to be fair it is better than other ways of leaving this world.

    I think that you have made some wise decisions Alice and I follow you in that
     
  8. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    @alice you have raised another of my dilemmas. I have to decide whether John should stay in the nursing home or come home and risk falls etc. He cannot answer for himself and is fading away because of this not eating. I will be talking to the SW tomorrow but the final decision will be mine. It is so hard.
     
  9. Nigel_2172

    Nigel_2172 Registered User

    Aug 8, 2017
    12
    Shropshire
    My wife has been on progressively thickened liquids (including medication) for about three years both at home and, for the last 18 months, in a nursing home. Despite this, she was in hospital earlier in the year with aspiration pneumonia - very frightening. Following this, she has been on 'taste for pleasure' although she doesn't appear to dislike the thickened drinks - other than tea. At this stage, I am just pleased if she eats or drinks at all and do not take too much notice of the advice from the SALT people. What is the point in making life any more miserable than it needs to be?
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    I really feel for you all, my husband was in hospital for three weeks with aspirational pneumonia, he came home and within three days had another chest infection. He was making loud whooping noises, a bit like whooping cough.
    That was frightening. After several phone calls to check, I gave him antibiotics I have been given a supply. This is the pattern, like many older people he does not get a raised temperature.
    He went into hospital as he had had hiccups for a long time, he was dehydrated because I could not get enough fluid into him and he had had diarrhoea although that had stopped by the time he went in. He was exhausted and waxy looking.
    It is difficult to have to make the final call isn't it.

    Our personal feeling is that the final stages of life are very important, it is a time to be cherished. When my husband was on the ward a man died, he had been walking around then he was confined to bed. My husband strongly asserted that it was wrong he had so little help. I asked in what way, he said the two women who visited should have been holding his hand and talking to him. A ward is not always conducive to this.


    Thank you, you have confirmed my thinking. It is good having your experienced wisdom on here.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
     
  12. TNJJ

    TNJJ Registered User

    May 7, 2019
    453
    In my job I have watched someone die from aspiration.It is frightening for them and you.My dad is on thickened fluids but only that as he chokes quite easily.
    He is also diabetic type 2 and has never stuck to a diet.I tend to give him chocolate etc in moderation otherwise if you leave it in his drawer he will scoff the whole lot.:rolleyes:His kidneys are getting worse now (CKD)and I expect this to continue.Also everything else is too .I will continue to cut up his food etc as “eating is my only pleasure left”says dad.He is right.So as long as he can continue and voice his opinion,I will take notice:)
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    It sounds as if you had a bad experience, when my husband has had pneumonia he has just got very sleepy. He has been treated in hospital and at home. He has decided now he will not go into hospital. This may be tricky but I will go my upmost to honour his wishes.
    With dysphagia there is always a danger of choking. My last GP said I was not strong enough to really handle it. She said I could thump him hard on the back. If I did not succeed to dislodge the matter he would slip to the floor and become unconscious. She said all I could do would be to put him in recovery position and dial 999.
    That is the saddest of realities. We can but live life to the full, even is it is just quietly loving.

    I have been told no jelly, ice cream etc. I do not thicken milk as the cereal soaks it up. I can give flavour but part of pleasure of food is often the texture. This is the difficulty with a pureed died.

    Take care, AliceA
     
  14. Quizbunny

    Quizbunny Registered User

    Nov 20, 2011
    89
    Mum has been on a thickened fluids and puréed diet for the last 9 months since her second hospital stay with aspiration pneumonia. Her Care home are very good about ensuring that her tea and coffee is made up correctly with the fluid being added to the thickener rather than the other way round, as a result she still enjoys her drinks. Her puréed meals are also a big hit with her and she has actually gained some weight. The last time I was there for her lunch she had all day breakfast. It was a bowl of pink gloop but she scoffed the lot!
    I understand that quality of life is just, if not more important than quantity, but in mum’s case she is happier now than she has been in the last 8 years.
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    I am glad your Mum is happy in her home, it sounds like a good one.
    My husband is fairly happy with the meals but sometimes remembers enjoying something else. He likes the homemade ones, in hospital there were some good Asian ones.
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    Much of what people have said in this thread gets to the heart of the moral dilemma of care for our loved ones. Death is not always easy and painless and those who slip away like that are fortunate, as I know from my experience in work as well as family members. It’s a terrible dilemma and never clear cut and we individually have to make a decision based on advice and our own moral code. What I want for my husband and what I get are two different things and I find the judgements I have to make weigh on me but I have to find the strength to do what I think is right because he no longer can.
     
  17. Moggymad

    Moggymad Registered User

    May 12, 2017
    383
    Female
    #17 Moggymad, Oct 10, 2019
    Last edited: Oct 10, 2019
    Whilst on subject of aspiration @AliceA , @Palerider or anyone else who might know... How can I tell, as a non medical person, if chestiness & coughing is due to possible inhalation of food or drink or down to a viral infection? Mum in care home & has this at the moment. Staff not too concerned but I am wary of this possibility. Very chesty but no sign of a temperature. She is on purée food but not thickened drinks but does normally cough a bit after swallowing drink sometimes. Was Salt assessed 4 wks ago & told no change other than not to use beaker with spout or straw. Be glad of anyone's input
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    706
    Male
    North West
    Its difficult to say @Moggymad. Even if on thickened fluids and pureed diet it may not be enough to prevent aspiration in advancing dementia. A study by Logemann et al 2008 (A Randomized Study of Three Interventions for Aspiration of Thin Liquids in Patients With Dementia or Parkinson’s Disease). The study amongst other things showed that such intervention may not have long term effectiveness at preventing aspiration. Only about half of those in the study (n=711) benefitted from thickened fluids. Can the GP do a visit just to check things over?
     
  19. Moggymad

    Moggymad Registered User

    May 12, 2017
    383
    Female
    #19 Moggymad, Oct 12, 2019
    Last edited: Oct 12, 2019
    Thanks for reply. Yes GP called. Much worse today now in hospital
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    I hope all goes well, Sue. Xxx
     

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