Assisted feeding ,peg feeding

Discussion in 'ARCHIVE FORUM: Support discussions' started by PatH, Jan 31, 2008.

  1. PatH

    PatH Registered User

    Feb 14, 2005
    301
    N.Ireland
    hello all,
    Its such a long time since I've logged on properly. I attend my husband in the nursing home every day from morning to bed time. i love being with him and I feel I am giving him what I couldnt do at home. The home is about 10 mins away so its easy, He is now very poorly and we have been with him constantly since lastmonday week ago. He is gathering a lot of mucus and because his swallow is poor some is going into his lungs. There is no food intake at the moment just very thickened fluid. I have been able to feed him up to now but because of the gathering mucus I am now frightened . he is having to be suctioned and I find it very distressing. As well as the swallow he has ulcers at the back of his throat and is moaning with the pain . He is now on pain relief.
    Can anyone tell me what the society's views on peg feeding are, as I'm wondering is this going to be the next step.

    I have had to face the possibility of losing him this week and, while at the start of this lapse when he was needing oxygen and in extreme pain, I was pleading with the doctor that I did not want to lose him, by sunday I was resigned that I was being selfish and finally admitted to myself that what was best for him I would be content with. I know that all I want for him now is to be pain free and comfortable.
    I know he knows that we all love him and I certainly know that he loves us.
    Pat
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Pat

    I'm sorry your husband is so ill. My John isn't quite at that stage yet, as he's still eating, but I know it will come. I did go through the same scenario with my mum though, and I know how awful it is. She too had to suctioned, and it's not a pleasant procedure.

    I was asked if I wanted a PEG, but I said no. My mum was 92, and wouldn't have wanted to continue to live like that. But it was an awful decision to have to make, and I don't know what I'll do if I have to make it for John.

    I don't know what the Society's views are, or even if they have expressed any, but we did have a lengthy discussion on TP on the subject about a year ago, which might interest you:

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

    It's a very personal decision, though, and only you can make it. I'm sorry you have come to this stage, and pray you have the strength you will need.

    Love,
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Pat, I am glad that Hazel was able to point you to the thread where we discussed this at length.

    I am quite sure on this as it is something that Lionel and I discussed together in the early days, so I know his wishes. (Definite 'no', in his case)

    I think your words:
    say it all really.

    Search your heart - what would your dear husband really want?

    Hard decisions I realise, and my heart goes out to you.
    Take care.
     
  4. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Dear Pat

    I saw your post and can only guess how you are feeling. We thought we were approaching that stage with Mum a few weeks but she has rallied slightly again and although very very frail continues her battle int he company of her hallucinatory friends or "Angels" as I call them.

    My advice is to do what you can live with. For each of us this may be different but I think you know what your answer is deep down as Connie and Skye have noted. For me the answer was a simple no, don't do it when we discussed end of life care. It was not a cruel decision but I think the kindest thing to do. For Mum I have asked that they do not even feed her mush as she hates it and always has done when ill but this is a decision based on my knowledge of her.

    (((((((((((((((hugs))))))))))))

    This illness makes us ask hard questions of ourselves.

    The only silver lining I have found is that I have fully discussed and thought out the scenario with my husband and we are both well aware of each others wishes now should it happen to us.

    Love

    Mameeskye
     
  5. Helena

    Helena Registered User

    May 24, 2006
    715
    We were asked if we wanted "extraordinary means etc " used for my Mother and our answer was a categoric NO

    She would have been violently opposed to them had she been in her right mind and would have pulled tubes etc out anyway

    I personally believe its much kinder to allow nature to take its courseand simply relieve pain or suffering but do nothing that will prolong an already severly damaged person to live a little longer just to suit us

    We must think of what the person would have wanted if the subject had been discussed before they were ill

    This is exactly why its vital we should all now sownload and sign the new LPA forms from Guardianship website so that our relatives are not faced with such a horrendous decision
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Actually, Helena, the Advance Statement is much more effective, in that your wished are clearly set out and witnessed. The LPA still leaves it to the relative to make the decision.

    The Age Concern website explains it all vry clearly, with a form to download.

    http://www.ageconcern.org.uk/AgeConcern/is5.asp
     
  7. debby13

    debby13 Registered User

    Oct 15, 2007
    41
    Hi there

    Not sure I can help but my personal view after having seen my Dad go through this recently (he also had pneumonia) was that all the peg feeding would have done would have laid him even more open to infection and from a quality of life point of view I know he would never have wanted it. I think the doctors really thought he would probably try and pull it out anyway thus creating more problems. We stopped all interventions and he died as peacefully as I think one could hope a week or so later. sorry I know its an awfully grim subject and so heartbreaking. We all felt absolutely devastated by having to think about such awful things and I truly appreciate how you must feel now watching him suffer the suctioning etc its dreadful.

    My thoughts and love are with you.

    Debbyxx
     
  8. PatH

    PatH Registered User

    Feb 14, 2005
    301
    N.Ireland
    Many thanks

    Many thanks for your help. sorry that I didnt find the original threads about peg feeding myself but my head was all over the place.
    Well along with my family we have made the decision not to peg feed when it becomes an issue.I was made aware of a lady locally who has MS and now needs peg fed ,she was able to decide for herself and has refused. My husband would also have to go to hospital and that decision has already been taken,general hospital is not the place for him now. The risk of furthur infections was another.
    He was slightly improved yesterday ,still on very thickened fluids.
    I know he will not come back from this episode as he was previously ,he is so tired and weak but it has been a big reality check for me and enabled me to face the final hurdle with more acceptance and understanding about what is best for him.
    Thank you all once again.
    Pat
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Pat

    I'm so glad you have made this decision for yourself. It will make it so much easier when the time comes, that you have talked it over with the family and agree the decision.

    It's good news that your husband is able to take thickened fluids now, and I hope it's a long time before you are asked that question.

    Love,
     
  10. frederickgt

    frederickgt Registered User

    Jun 4, 2005
    124
    Hornchurch,Essex
    p[eg feeding/

    is peg feeding the same as feeding with a syringe?
    cansomeone tell me as i have had to fed my Anathat way sometimes,now departed.
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    No Frederick - PEG feeding is when a feeding tube is inserted surgically into the stomach. PEG stands for percutaneous endoscopic gastrostomy.
     
  12. frederickgt

    frederickgt Registered User

    Jun 4, 2005
    124
    Hornchurch,Essex
    Jennifer

    thank you Jennifer,the hospital told me nothing.I HATE Queens hospital,the only consolation I have is knowng that Anna is no longer confused,in pain or suffering in any way,though to be selfish,I wish I was still looking after herI miss her terribly,and so many things remind me of her,I am constantly fighting back tears.
    I am now alone ,if I thought that I would be re-united sooner.I would commit suicide,the fear is that such an act might bar me from her prescence
    fredgt
     

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