1. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    Hospital are now talking about a decision having to be made to either artificially feed my Mum or what they call "comfort feeding". What do these involve?
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I'm not quite sure what "confort feeding" means, I'm afraid. I "assume" they're talking about PEG feeding. There have been several threads on this subject, but unfortunately PEG is to short a word for the search engine to handle. This is one of them http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=5958&highlight=tube+feeding but I feel I should warn you that you may find it a little distressing as often threads that discuss this issue are also going to be concerned with end of life care.

    I do think there is a valid use for such feeding, particularly if it is necessary because of something other than the dementia. People do lose their appetite when they are ill, so if this allows them to get over the "hump" it can be a good idea. Where I wonder about its advisability is when the swallowing reflex has disappeared due to the ravages of the disease: a lot of the research indicates that if that has happened you may also be dealing with a scenario where the person is no longer able to metabolize the nutrition thye do receive. Not necessarily of course, but sometimes.

  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Taylorcat: I did a little more reading on the subject. It would appear that in this context, "comfort feeding" may mean offering food via a spoon. I know hospitals do not do this as a matter of course, because it might infringe on a patient's human rights (and there's not an appropriate smilie for my views on this), so it maybe they are asking permission to do this.
  4. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    Thanks. Unfortunately Mum's swallowing ability seems to have gone. They say if I were to try to give her a drink it may go into her lungs. She does still have pneumonia but don't think that's anything to do with her swallowing.
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Taylor: I do have a link to a technical medical document regarding when PEG feeding is appropriate. If you want me post it I will, but I am concerned that you might find it distressing.
  6. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    Hi taylorcat

    My mum towards the end of life i have to say was spoon fed at first just a little bit at a time as she started to loose her ability to swollow. When they mention that water or food even may enter the lungs this is true. We were told that food was doing nothing for her now she had lost all ability to swollow, they stoped her food put her on a drip for fuied but this was just building up in her lungs so they eventualy had to withdraw that as well. I am so sorry you are having to go through this it is just awful to watch.

    Take care of yourself
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m so sorry taylorcat. You have a difficult road ahead. Take care.
    Love xx
  8. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Taylorcat,

    At the end of his life my Dad was in this situation. He went downhill in the last few days very fast. When we were told we could comfort feed him, we did things like give him tiny bits of Mars Bar to suck on (he was always a terror for a Mars Bar) and some small sips of soup which sort of dribbled down rather than being swallowed.

    It WAS comfort feeding I think, because it wasn't sufficient to provide any nutritional value. Just gave him a pleasant taste in his mouth. We too were warned about the food going into his lungs.

    We were spared a long decline with Dad - he died less than a week after being admitted to hospital for the last time. I can only hope for you and your family that your dear Mum is also spared a long period of waiting for the end.

    May you find the strength, the grace and the courage to cope with the next period. Loving and caring thoughts are with you.
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Taylorcat,

    I think artificial feeding is the tube feeding - not certain what it entails - but i do know that once tube feeding has been started, it is not easy to get medics to remove the tube - I think it becomes tantamount to them removing sustenance. This means that tube feding often reults in life being prolonged, when all quality has gone.

    Comfort feeding is offering food and seeing if your mum can be encouraged to swallow (noticed the nurses used to stroke mums throat).
    The swallowing is connected to the pneumonia, as when the lungs contain food, infection is more likely.

    In her final days my mum was unable to take food,but lemon swabs were used to try and keep her mouth more comfortable.

    My thoughts are with you.

    Love Helen
  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Taylorcat

    I'm so sorry things have got to that stage with your mum. Like the others, I'm not sure what 'comfort feeding'entails.

    PEG feeding is something that is so difficult to decide. In my experience, the decision leaves feelings of guily whatever decision you come to.

    If you decide to go ahead with it, you feel guilty because you are prolonging life artificially when all quality is gone. If you decide against, you always wonder if there was the remote possibility that the patient could have recovered, even though you know realistically that that could not have happened.

    Helen's right, though, once a PEG is inserted, it's unlikely to be removed.

    I hope you don't have to make this decision. I made it for my mum (I decided against, but she was 91, and did not wish to live). I dread havingto make it for my darling husband.

    Please let us know how you get on, I'll be thinking of you.

  11. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    Thanks for all your words. I think I too would be against PEG feeding but the decision will not be mine. I've tried to prepare my Dad for what the consultant might say tomorrow but when I told him tonight that you can't live on a drip forever his reply was "Ian Brady's been on a drip for 20 years". Not sure if this is true or not!!!

    Anyway, we'll see what the consultant says tomorrow.

    When we went up tonight Mum was actually a bit brighter. I was sure she was at death's door last night but when we were there tonight she said "here's my lovely husband coming". I actually couldn't believe it was Mum who said it.

    Such a strange disease.
  12. connie

    connie Registered User

    Mar 7, 2004
    Could not agree more:
    Hope that you get some clarification re feeding:

    From my own point of view, (and my dear Lionels when he was able to communicate) Peg feeding prolongs 'death'
    Comfort feeding sustains 'life'

    Purely our own thoughts.
    Hope you manage to come to terms with what is in front of you.
    My thoughts and pryers go with you.
    Love Con.
  13. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    What a very good description, Connie.

    I'll remember that if and when I have to discuss it with Dad. He hasn't a clue that is what might be said tomorrow since he wasn't there when the nurse approached me.

  14. janetruth

    janetruth Registered User

    Mar 20, 2007
    Hello Taylorcat

    I have tried so hard to put myself in 'their place' we will never know what our loved ones who are suffering this TERRIBLE ILLNESS are experiencing.
    Life means different things to different people.
    Our animal instinct is to cling on for as long as we can, but we are human beings with calculated thoughts.
    What a terrible situation we all face when it's down to us to make a decision.
    GUILTY whatever we decide.
    Take some comfort in the FACT that we all know what the other is going through.

    I wish you well
    Janerruth x

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