Yet another Dilemma - to feed or not to feed

Discussion in 'ARCHIVE FORUM: Support discussions' started by Stimpfig, Jul 22, 2009.

  1. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hello everyone,

    Just as a child in distress runs to the bosom of its mother for comfort, I have come running to TP with my latest dilemma.

    My mother has moved onto the last stage of the disease and cannot walk nor speak and has difficulties swallowing so much so that she was taken to hospital last Friday as she choked on her food and had trouble breathing. Some food had entered her lungs which caused this problem.

    She is now back at the assisted living facility with a nasal gastric tube. Even in her present condition, she is restless and tends to move around the bed and tends to pull out the tube. In order to prevent her from doing this, doctors have suggested that her hands be 'fixed' with a kind of finger belt or whatever that's called.

    You can very well imagine the torture of all this. I am wondering if I should go the PEG route which is percutaneous endoscopic gastrotomy which means the food goes in directly into the stomach through a PEG fitting. Doctors however think that she will have a tendency to pull this out as well (with/without a protective waist belt) and if so, the consequences can be worse than expected.

    Has anyone been in this dilemma before? Nasal feeding - PEG feeding - no feeding (only IV fluids) - the latter would actually cause starvation, wouldn't it? and the very thought of it frightens me. As an only child, I find this dilemma worse than all the previous ones.

    Any thoughts or advice would be gratefully accepted.

    With love to all those going through the tempest of AD ...
  2. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Sue for what it''s worth, the psychatric at Monique's care home was discussing this very problem with me recently...

    She was of the opinion that 'forced feeding' - the insertion of tubes etc was a very painful and undignified invasion of the right of the 'sufferer' not to continue to feed themselves.

    It can only prolong the inevitable for a short time, in a most unpleasant way for the patient.

  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Sue

    I do understand your dilemma and feel for you.

    I only know of one person having a PEG fitted and he was in the later stages of cancer of the oesophagus . The PEG became infected and didn`t heal.
    I imagine your mother`s healing system would we well below par and although nothing`s to say a PEG will become infected, I hope you are aware it might.

    If your mother is trying to pull the nasal tube out, it shows it is causing her discomfort. She might be more comfortable without it.
    `Starving to death`, is not a nice thought. But sometimes as the later stages of any terminal illness draw close, the body shuts down and there are no feelings of hunger .
    I have seen this in some people whose life is drawing to a close, and they have always appeared to be comfortable and peaceful.

    You are the only one who can decide, but perhaps it is time to let your mother go.
  4. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Michael and Sue,

    It's always good to know that people can return to TP when they need advice and support.

    This is one of the most difficult areas of dementia to contend with and obviously you have to be guided by what the person would have wanted had they been able to make their wishes known.

    One of the most helpful documents that I found is the Alzheimer's Society's statement on palliative care and withholding treatment, which also mentions artificial hydration:

    Good luck wrestling with this difficult and distressing phase.

    Take care,
  5. nbfb

    nbfb Registered User

    Mar 14, 2009
    Dear Stimpfig,

    I am sorry that you are in this awful dilemma and I would not presume to tell you what to do.

    My friend has a mother with a PEG after a very serious stroke 11 months ago. At the time the choice was made, the family thought that they were doing their best for G as they were hoping for recovery. Sadly, there has been no improvement only deterioriation and the PEG is all that is keeping her alive in a vegetative state. It has been incredibly hard for the family to have to realise that their choice has left them in a position where the artificial feeding could prolong a poor quality of life indefinitely and they are unable to contemplate asking a court for it to be removed.

    We have decided as a family that my mother-in-law with dementia who is currently not really eating will not have any artificial feeding as it was her wish to "go when my time is ready".

    Horrible choices I know; I wish you well and hope that you are able to reach a choice that feels comfortable with you and your family.

    Kind wishes
  6. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008

    I had a PEG some while back, when they are put in they are quite sore, and if your Mum is restless and is moving her hands there is enough tube on the outside for her to take hold of and one good pull and it will be out, so I think this would still mean some sort of restraint..

    I know this probably is not what you want to hear, but I hope it will help in your decision making.
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hello Sue,
    It's always nice to hear from you, even though under such difficult circumstances.

    My sister and I discussed this a few years ago. After reading up on it and bearing in mind my mother's often-declared repugnance about being "kept alive on a machine", we decided we will not go down the PEG route. My understanding is that it is best suited for a person who is expected to recover or at least has a very good chance of recovery.

    I think the doctors are correct in thinking she may well pull the PEG out, with all of the infection possibilities that entails. I know that restraints are sometimes necessary but I don't like the idea of your mother's hands being restrained.

    Is it still possible for your mother to swallow? You say she's having difficulties but is it with every mouthful? There are people at my mother's who also have major coughing fits when eating. Are her liquids thickened? Forgive me if I am asking stupid questions.

    This is only my opinion. If it were my mother, I would continue to have her fed by mouth and not by NG tube. I would definitely not go for the PEG feeding. I don't even know if I would go for the IV. I would want to make her as comfortable as possible and try to reassure her as much as possible. I would try to let her "go gentle into that good night".

  8. LittleL

    LittleL Registered User

    Sep 14, 2006
    East sussex
    Hello Sue,

    My mum passed away on Sun but we had to make the decision regarding artificial feeding. My mum became very reluctant to eat or drink and we had to have her hospitalised twice for re-hydration. I must point out though that the second time we had her admitted to hospital in June was because my husband had just lost his mum suddenly and we could not cope with losing my mum so soon after. She was re-hydrated but still did not eat or drink anything whilst in the hospital. She was taken off the drip and went back to the NH on the 15th June. We prepared ourselves because we absolutely were against artificial feeding because it was not what my mum wanted. As far as we were concerned she had made her wishes known to us and we had to respect that. The staff at the NH seemed to have a harder time accepting the fact than we did but I suppose that's because it's their job to try. My mum guided us by her actions. she was not in any pain that we knew of and looked very comfortable throughout. Perhaps we were just lucky. I always used to try and time my visits for around lunchtime so that I could monitor the food and drink situation. When the staff offered my mum food she used to clamp her mouth shut. Nobody was going to force her to eat or drink!!! I used to stand at the end of the bed and she used to look at me with her eyes wide and I could see That she was asking me with her eyes " why are they still trying to give me food "? I had to say to her most times, " I know mum but they have to try as it's their job". I never attempted to give her food or drink but I let her know that I understood her wishes and that I wouldn't be going against them. It was hard to come to terms with and it wasn't an easy decision but I just felt that she was indeed guiding us as to what she wanted to happen. She lasted just under five weeks, not sure how but I have started a thread titled A perfect death? These were the last few days we spent with her. Good luck in whatever you decide though.
  9. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    #9 Stimpfig, Jul 22, 2009
    Last edited: Jul 22, 2009
    A big thank you to those who replied. Michael, I remember so well that although Monique is so much younger than my mother, they could be walking hand in hand in this journey. At any given point of time, they seemed to be in the same boat ! How does it stand with her now ?

    Sylvia: Your words that they have no feelings of hunger are reassuring and are food for thought. However, I spent an entire month in May with my mother in her room and had to change a lot of things (like Brucie says in his new thread). While I was there, my mother who formerly refused food actually began to look forward to feeding times and even was able to eat a banana on her own. That is why I can't decide if she is hungry or not!

    Sandy: Thank you for the website link - I have now read it and it says the only thing to do is to keep the tongue moist when the person is off any life supporting system. I will have to mull over this. I have had the experience of having my tongue moistened while my throat was as dry as the desert, soon after a surgery and will be constantly plagued by the thought of my mother going through the same but not being able to express it. Hard, really hard.

    nbfb and nellbell : Thank you for sharing.

    Katie123: I read your recent thread which was linked to this one. As the 'old timers' here know, I am now a long distance carer. I cared for my mother both in Germany and in India personally until I collapsed one day with multiple disc prolapses. Cross cultural caring is another cup of tea, with its own socio-cultural hues. Thanks for sharing your experience.

    Canadian Joanne: Until last Thursday, the 16 of July, she was okay and choked on food (always pureed) on the 17th when she couldn't breathe properly. She was taken to hospital, was in the intensive for 2 days and a nasal tube plus a catheter were inserted by the medical staff, without any consultation. As LittleL said in her post, medical staff do what they are taught to do and are expected to do. Thank you LittleL for sharing. I have also read your other thread. You were indeed lucky !

    Now she has got this nasal tube since Friday and I have no way of knowing/ascertaining what's the best course of action. If the tube is taken off and if she eats well as in May, then she will choke on food again due to her inability to swallow correctly.

    That brings me back to Katie's query on how we feel after our experiences. My dilemma also stems from the condition of a close friend's father who at 94 suffered a serious stroke, went through all the things we have all been talking about here but unexpectedly recovered in that he is able to eat independently, indicate he wants to go to the toilet and smiles and talks. I know it is different with Dementia but still personally I can't decide what the right time is.

    Your input has helped me a lot, mainly in that it doesn't make you feel alone and gives you the necessary support to take that crucial decision when the time comes.
  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Hello Sue, I'm not sure if you'll remember me. My mother was offered nasal feeding about three years ago when in hospital. I accepted on her behalf because I was desperate to do the right thing, and because a doctor friend had said that it wasn't a big deal and if it would get nutrition into her rather than let her die, then it was the right thing to do. What I didn't realise was that in fact this was not a case of life or death and my mother went on to survive just short of another three years without it.

    The actual insertion of the tube was horrendous for her, and she only tolerated it in place for a few hours anyway before ripping it out. I was wrong to let the insertion proceed in the first place but I thought I was doing the right thing at the time. They would not re-insert the tube becasue they said that if she were to keep pullig it out then there was a danger that the a bit of the tube might break off and float around internally, causing damage.

    I don't think that a PEG feed would be any more successful.

    My mum ate smallish meals for the rest of her life. Sometimes less, sometimes more. Usually pureed, but she never enjoyed the savoury ones too much. She needed alittle substance to her meal to enjoy it. She almost always managed fluids, especially tea, and developed a notoriously sweet tooth which I happily indulged. Bananas were a big favourite of hers too.

    I watched a woman on the same ward as my mother's three years ago having her lips and tongue moistened with a sponge as a sort of last rite and I was so alarmed that I vowed never to let my mother's carers relapse into this 'treatment' whilst I was physically able to encourage her to eat or drink 'properly'. It seems to have paid off.

    It sounds as if your mum might have possibly aspired some food. She might possibly have a pneumonia because of this. I don't know what the treatment is for aspiration pneumonia, or indeed if there is any, but it is pretty common. She may just need to be encouraged to sit up or to be moved a little. Strapping her down in order to nasal feed her sounds pretty barbaric to me. You may have to accept that this is moving towards your mum's end.I hope that you can find a way to ensure that your mum is made comfortable and if you are able to be with her, then I would strongly advise it.
    Kind regards, and good luck, from Deborah.
  11. simonmonty

    simonmonty Registered User

    Nov 22, 2008
    hello sue

    Ive at the moment got a rig which is basically the same as a peg fitted and it was very painful when it was first put in and i was on morphine to help with the pain. It is anchored with two stitches to hold it in place until it is established and then the stitches are cut leaving just the tube.It can be very uncomfortable until the stitches are cut and mine got infected as most do and my rig or peg still does i have to clean it every day always puss coming out of it because of the tube as this is the body's way of trying to get rid of it.I keep catching my tube or the tube slides all the way inside me with out me knowing until i get stomach pains and i realise whats happened and have to pull it out to its correct position. There are also lots of serious complications having the rig or peg put in that might arise. so it is a major decision to make and what makes it worse is that your mother would find it hard or impossible to tell you if something was wrong or not feeling right with it its hard enough for me and i still find it uncomfortable even now at times a kind of ache some times. You really should talk with the doctors about all the scenarios were it might go wrong because they can.Plus you will in fact be giving your mum a stomach ulcer effectively because of it another down side. Sorry i just thought you should know all this. But you do need to talk with a doctor about this before making any decision. So sorry you and your mum are having to go through all this. I hope my mum dose not make it that far with this terrible illness. I know its a bad thing to say but i know my mum would not want it and i just love my mum so much and have gone through so much with her and this illness. It's always hard and never easy. That's why we should always make the most of the special times. Thinking of you both... simon
  12. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hi Deborah : I do remember you and all the others and although I have been visiting the site without logging in, have not really been able to follow up individual stories. I know you and the others have been through a lot and still have the time and the patience to offer support and solace to others in need. Thank you so much for sharing your experiences and has come in a timely fashion for me; has helped me think more clearly.

    Simonmonty: I am sorry to hear that you are going through all that pain. Still, you wrote and helped me understand what can be in store. Thank you so much.
  13. Maya

    Maya Registered User

    Jul 23, 2009
    I live in purgatory
    I really feel for you being an only child, me too ! My dad was due to be fitted with a gastric tube because he kept pulling out his nasal tube, but the risks of it and the possible infection were explained to us. Sadly he died last July before they fitted it. It's a diffcult one. It is hard to let someone you love go like that, I know. We opted for the gastric tube though and just hoped for the best for him.
  14. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    #14 Stimpfig, Jul 23, 2009
    Last edited: Jul 23, 2009
    Thank you Maya.

    I was just wondering what would happen if I decided not to continue with NG, what if she developed aspiration pneumonia again and so I googled some and came across this very helpful article as if it were written for me.

    The article is on End of Life Choices concerning Feeding Tubes and Ventilators, from the Family Caregiver's Alliance in their website:

    So now the question is if the NG is removed, and pneumonia occurs, should she be treated or not. The article does not say what comfort measures to reduce the distress of laboured breathing can be offered.
  15. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    my mother managed to pull out the ng herself

    Hi again

    I just called and I was told that my mother is 'in high spirits' and that 'colour has returned to her face'. I could hear her chatting away in the background. The catheter too has been removed which, due to her moving around the bed, was causing more of a problem.

    It seems she swallowed the sweet thickened porridge that was offered to her and was very cooperative.

    She is currently free of restraints, ng and the catheter. I can imagine how relieved she must feel and as per your suggestions, I will just ensure that she is as comfortable as possible and if she refuses to eat, so be it.

    It's a pity that I can't be with her everyday. The reassuring thing though is that my mother has really caring and loving people around her and a full time personal care giver who she is very attached to.

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