Facing decision on Tube feeding. Don't know what to do. Would value your opinions.

Discussion in 'I care for a person with dementia' started by Kittyann, Jun 14, 2015.

  1. Kittyann

    Kittyann Registered User

    Jun 19, 2013
    Dear all. Your advice has been so helpful to me in the past and now I'm hoping it will be again as I'm facing probably the biggest decision I will ever have to make.

    My Mum is in hospital after becoming dehydrated through refusing to eat or drink enough. Now she is refusing to eat atall. The Dr says if this continues we will reach the point where tube feeding is the only option. He says he would not recommend it but that it will be my decision.

    Has anybody else faced this situation and what did you decide? My head is telling me the Dr is right but my heart is finding it hard to adjust to making a decision that is effectively going to kill Mum.
  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    My father reached a stage of refusing food and drink - probably because his swallow reflex was going, as when they did get some mush in him he got aspiration pneumonia. When I arrived to see him in hospital (not in UK) he was already on intravenous ABs, liquids, foods by tube etc despite the fact I had read US research suggesting such interventions rarely work for patients with pneumonia and advanced dementia, and - indeed - increase the distress of the patient. He was certainly distressed by the tubes. The intervention prolonged his 'life' by about 5 days.

    I mention my experience. Your decision must be one you are comfortable with so you feel you have done your very best by your mum. You will know if she wants to fight on; you will know her character before dementia, her energy and happiness levels now better than any doctor.

    I raised my fears with my dad's doctors and they said they would reassess after the weekend. As it turned out, he died before that reassessment took place but I did feel I had done as well as I could have in the circumstances to be a decent advocate for him.

    Whatever you decide, it will be a considered decision, made through love. Be at peace with that.

  3. susy

    susy Registered User

    Jul 29, 2013
    North East
    I didn't want to read and run, this is a harsh decision for you either way. Just know that you are in our thoughts xx
  4. Jessbow

    Jessbow Registered User

    If the dr says he wouldn't recommend it, I think I'd be inclined to go with his thought.

    Its not a case of not caring about your Mum, its more respecting what choice she is able to make for herself. If she was physically able to do both up until now, and is now choosing not to, then maybe its a non verbal way of saying ''I have had enough and this is the only way I can show you''

    I guess her age come into it as well, and has been said,, you know her better than anyone.
  5. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Jessbow, I think you put it very well. I think this is what my mum was doing in her last few weeks. She had also said many times that she would not want to be kept going 'by machines' and so I felt at peace with the decision not to go with any artificial feeding options. She had just had enough. My FIL was the same, though in his case he was mentally alert and able to articulate his feelings himself when deciding not to have any more cancer treatment.

    We don't want to lose them, but it's not about us.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    A couple of months ago my mum got taken into hospital with what turned out to be a TIA. The doctor started asking me about end of life decisions and my initial reaction was - OMG, have we reached that stage already?
    I opted for no IV tubes and no tube/peg feeding, but to keep her comfortable. It was horrible.
    She has, in fact, rallied and is back in her care home eating and drinking without problems. I have signed a form for the CH saying that except for broken bones I do not want her to go into hospital, but for her to be kept comfortable and managed at her CH.

    No-one can make the decision for you, but I am sure that whatever you decide will be for her best.
  7. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I was asked to make a similar decision for a much loved aunt, who had begun to refuse food and drink after the umpteenth UTI. I was told that unless she went to hospital for drips almost immediately, she was going to die. She was 86 and had pretty advanced dementia. I felt quite unable to decide alone, and could only ask the GP what he would do of it were his much loved aunt.
    He said he would leave her in peace, where she was, where they would keep her comfortable. He said hospital and drips etc. and being poked about by strangers would be very distressing for her, and in any case it would only be putting off the inevitable - in a few weeks or months the situation would only arise again.

    I knew in my heart that my aunt had not been happy or having any fun for a long time - I think I knew she had simply had enough. So she was left where she was, in the lovely care home, where staff were extremely kind. I sat with her a lot during her last days - it was all very peaceful - and although the staff continued to offer food such as yoghurt and drinks, it was clear that she didn't want any of it - she would close her mouth and turn her head away.

    Although I agonised about the decision at the time, I never once regretted it afterwards. I am sure it was what she would have wanted for herself, if she had been able to say so.
  8. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    "a decision that is effectively going to kill Mum"

    Please Kittyann don't think of the decision like this. It is not an issue about "killing", it about letting her die a natural death due to her vascular dementia which is a terminal and incurable disease. As others have said, you know your mother best.

    Section starting on page 17 of this leaflet written by a former hospice and nursing home chaplain might explain choices clearly and help you to be at peace with whatever decision you take in your mother's best interests.

    This is such a difficult and painful time for you I do hope you have a relative or good friend with you to support you.
  9. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Facing decision on Tube feeding. Don't know what to do. Would value your o...

    Someone on TP said something that made real sense to me

    They are not dying because they are not eating and drinking.

    They are not eating and drinking because they are dying

    For Some people they have a "blip" and stop eating and drinking but then rally round. For others it's their time.

    Terrible times for you xxxx

    Sent from my iPhone using Talking Point
  10. meme

    meme Registered User

    Aug 29, 2011
    refusing tube feeding/ taking the Dr's advice would be nothing more than a kindness to your Mum.......
  11. opaline

    opaline Registered User

    Nov 13, 2014
    You must think about her quality of life and be extremely unselfish in your decision, thinking of you, xx
  12. HelenInBC

    HelenInBC Registered User

    Mar 23, 2013
    I am an RN and have seen people in care homes being tube fed with zero quality of life. I know I would not want this for myself or any of my loved ones. Existing is not living, in my opinion. I know it's a hard decision, but sometimes I think refusal of food and fluids is one way that a person can let us know they have reached their limit and they are ready to go.
    It's a very individual decision for anyone to make. I've already made this decision for my mom. She is 89 now and other than her dementia she is in good physical health. Once she stops eating and drinking I will let nature take it's course.
  13. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    I have also seen the comment to remember who you are trying to keep them alive for.

    In my Mum's case she would not want to be here and tube feeding her to keep her alive would be for my benefit rather than hers; it would only delay her dying rather than improve her life.
  14. LadyA

    LadyA Registered User

    Oct 19, 2009
    Just a few weeks ago my husband was hospitalised and on IV fluids. He couldn't swallow anything in the hospital. One doctor said that he would be assessed and then options, eg peg feeding or tube feeding would be discussed with me. But when it came to it, and I said that I didn't think it would be the right thing to do in his condition, the doctor then said "Well, it wouldn't really be feasible anyway, not at your husband's stage." Peg/tube feeding, I gather is best used only as a temporary measure to get someone back to sufficient health that they can eat and drink again themselves. It's not really a long-term thing - and can lead to other problems especially in people with dementia, if they pull at tubes or pull the peg out. Thankfully, we've gained a little while longer, and my husband is able to eat pureed food/ thickened liquids at the moment. For now.

    While no-one can make this decision for you, I think you have been given good advice by people here. Was it 2Jays who said "they are not dying because they are not eating and drinking, they are not eating and drinking because they are dying."? I think it boils down to that, really.
  15. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    Salford, Lancashire
    Kittyann, this is such an awful situation I do feel for you.

    My experience with my Grandad - he refused to eat for anyone at the care home or my Mum, but for me (15 yo at the time) his favourite granddaughter, he immediately took a couple of mouthfuls. I'm firmly of the belief that he knew not eating was upsetting me so tried to please me, but he really wanted to 'go'. I always tell people that not eating was his last cogent thought, he wanted to go and that was the only way he could achieve that himself. I've actually always taken comfort in thinking it was his decision.

    That's just my experience, only you can decide what is best for your Mum.
  16. count2ten

    count2ten Registered User

    Dec 13, 2013
    I started another thread about NG feeding because I had no idea what to do about my mother, moderate dementia but very frail and recent major stroke, left with right-sided paralysis and affected her swallow and speech. they tried a NG tube last week but she dislodged it and they took it out, there was some improvement in her swallow and she managed a few sips of thickened fluids for a few days, but doctor now wants to re-insert tube and saying he will put a mitten on her hand to stop her pulling it out. She looked absolutely exhausted today, like she's had enough, but the doctor said she has improved (!) and should try to get some nutrition inside her. I am just so torn about this, everyone telling me it's in her best interests, I'm not so sure but I think they will go against me anyway, even tho i have LPA. I would not wish this situation on anyone.
  17. Tara62

    Tara62 Registered User

    I decided not to do any artificial feeding, because I knew that if my mum had been mentally sound, she would have been horrified by what had happened to her, and she wouldn't have wanted to be kept alive. She had no quality of life, and it would have been cruel and pointless to have kept her alive this way.

    I hope you can make a decision that you feel comfortable with.
  18. Kittyann

    Kittyann Registered User

    Jun 19, 2013
    Thanks everyone for your thoughts. I spoke more with the Drs too and I know that, tough though it will be, if the decision has to be made, tube feeding is not the way to go.

    Like some posters have pointed out it would be me keeping her alive for me not for her. He quality of life is so poor at this point that I know that would not be the best decision for her.

    God but dementia is a truly horrible illness.
  19. count2ten

    count2ten Registered User

    Dec 13, 2013
    Horrible, cruel, indiscriminate, heartbreaking. It's such an unpredictable and uncontrollable disease , I feel like I've just been a passenger on a very long journey with my mother and I know I will be having to face this in the coming weeks. It probably doesn't help but I keep trying to remind myself it's the dementia that has caused all this distress and what eventually takes the decision out of your hands.

    Best wishes Kittyann , hope you can find some time for yourself through all this.
  20. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Hoping that your mum is being kept comfortable and that you are managing to spend some peaceful time with her. Thinking of you both at this very sad time. Take care.

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