1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    hi i wonder if anyone could help me, my mum is in the terminal stages of her illness (dementia caused by CJD) and she is still able to swallow but the doctors are worried by her weight loss and the fact that her swallowing is getting worse. today they brought up the possibility of peg feeding I wonder if anyone has any views on this. we have been told she has a few weeks left at the most, i wonder if it is fair to put her through this after she has suffered so much in a short space of time ( she has been ill since january this year) I wonder if the times she is refusing to eat and drink is her way of saying enoughs enough, we think she is more aware than she is able to express, she gets very embrassed when she is incontient. we have looked at a very good nursing home ( she has been in a dementia unit since march) and are waiting for a panel funding meeting monday and if they agree she may be able to go there fairly soon. we have decided today on a DNR order. i hope someone is able to give their opionon about peg feeding for terminal patients thank you candi
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    Dear Candi,

    I`m so sorry your mum is suffering so much, and you are suffering too, having to watch her.

    I only know about one case of peg feeding, in a dear friend with cancer of the oesophagus. The peg became infected, because of his poor immune system and was weepy and uncomfortable until the day he died.

    Perhaps it`s unfair of me to give you such a negative example, having only had one experience of a peg, but if your mother is as poorly as she seems, I wouldn`t put her through any more unnecessary discomfort.

    Take care

    Love xx
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Candi, I do know of a still young woman (55) who, to my knowledge, has been kept alive by 'peg' feeding these past 5 years.

    She is bedridden, has not spoken in years, now all her teeth have rotted, but she is still alive, if you call that 'living'

    Sorry to be so blunt, and I am sure you will get many different opinions, but you did ask.

    For me personally, it goes against everything my dear Lionel and myself would wish, for either of us. At the moment he does not want to eat, and yesterday would not drink, which is more worrying to me.

    Sorry, I digress. You asked only for an opinion. You have mine.
    Take care,
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Well I haven't had any experiences, good or bad, with peg feeding but I know what I would do when/if it comes to that situation with my mother: no way, particularly if they are telling you you only have a matter of weeks even with the peg.

    It's a difficult decision to make, and some people may feel that every effort should be made, but I personally wouldn't want it for my mother, and I'm darn sure I wouldn't want it for me.

    Jennifer
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Candi

    I was faced with the same question with my mum. She too was refusing to eat, and did not want to live (she had had a massive stroke which left her immobile and incomprehensible). I refused to have the PEG fitted, I felt to do so would be to override her wishes.

    There was a discussion of this subject a few months ago, which you might like to read.

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=5958

    Having said that, it's a very individual decision, and you are going to have to live with whatever you decide. Either way, there are going to be doubts.

    Good luck,
     
  6. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    thank you so much for your replies it is good to hear other peoples views and experiences to help us make a decision. i think i have known that a peg would be wrong for my mum after she has been through so much it's good to know i am not the only one having to or have made this decision. i guess skye is right whatever you decided there will always be doubts but i am now sure ( sure as i can be) in my own mind that this is the right decision not to have it and will speak to the doctors about it. i wondered what people did before this wonderful site was available. thanks to you all candi x
     
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    #7 noelphobic, Jun 14, 2007
    Last edited: Jun 14, 2007
    Hi Candi

    I was the person who started the last thread that Hazel posted a link to so this thread certainly brings back memories! In fact we had a care plan review for mum yesterday with a Social Worker and the subject arose.

    We were lucky in that we never had to make that decision, although there is nothing to say that further down the line we may not have to. At that time I came to the conclusion that I would not want to go ahead with it, but didn't really have detailed discussions with my sister as her opinion would have to have equal bearing. Obviously if we disagreed and the medics were leaving it up to us then it woudl be extremely difficult.

    One thing that my mum's nursing home did do was get a SALT (Speech and Language Therapist) to assess my mum. I hadn't realised before this just how much SALTs did and didn't know they had any imput in cases of nutritional problems. The SALT reported back that my mum did still have a swallow reflex (not sure if that is the correct term, but you know what I mean) but she did say it was slow. She produced a very detailed report with recommendations for how, where and what mum should be fed. The nursing home seemed to be following most of these recommendations anyway but it was good for it to be documented. The nursing home also decided at that time that mum would only be fed by registered nurses as there was a possibility of choking or aspiration (which can lead to pneumonia). It may be a good idea to ask for your mum to be seen by a SALT, assuming that hasn't already happened. We did wait a while for her to come and then for the report but I think it was worthwhile.

    This is such a difficult time and I really feel for you. However, as you know, there is always lots of support here and a virtual shoulder to cry on.

    Take care
     
  8. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    thank you for your reply i have been back on the older threads and read them some very interesting points made on there. i will speak to the nursing staff and see if my mum has been seen by the salt team. at the minute she is able to take very small amounts by syringe and the staff are very good and take their time to feed her, but sometimes she turns her head away and refuses to eat or drink and i feel that she her way of saying i have had enough of life i would'nt put her through a peg now as i don't think that is what she would have wanted. it's very hard when the illness has come on so suddenly and quickly i just wish we had had the chance to discuss things with her and she could have told us what she wanted to happen instead of us having to make decisions for her and never knowing 100% if they are the right ones.
    love candi x
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.