1. Welcome to Talking Point - an online community for everyone who is affected by dementia. Whether you have dementia or know someone who does, we will be there for you.

    Sign up to join the community, or Log in if you're already a member.

    If you need help using Talking Point, read our Help pages or contact us at talkingpoint@alzheimers.org.uk

  2. Tell us what you think of Talking Point in our Annual Survey - We rely on your feedback to tell us if we're meeting your needs and how we can improve.

    So please tell us what you think about Talking Point. You could win a £20 high street voucher for sharing your feedback.

    Click here to complete the survey.

Eating and drinking

Discussion in 'End of life care' started by JanS, Sep 14, 2017.

  1. JanS

    JanS Registered User

    Sep 14, 2017
    Hi, My mum's in a CH and is in the very late stages of dementia. Over the last two weeks she has deteriorated and now takes very little food and fluids. She had lost a lot of weight and can no longer communicate with me. I visit her every day and it is truly heartbreaking to see her like that. She is very well cared for by some fantastic carers. The GP sees her regularly. She is encouraged to eat and drink by the staff and myself. She is currently on antibiotics for a chest infection. My question is this- at what stage am I able to say enough's enough- stop the antibiotics, stop making her eat and drink, make her comfortable and let her die in peace? Why do we think we need to extend a life like this?
  2. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    Oh dear, what a sad situation. I'm afraid I don't have any helpful advice for you, but I am sure others will have. I couldn't read such a sad post and then not respond. The only thing I can say, having read a lot of other posts is that this 'end stage' can go on for an awfully long time.
  3. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    #3 lemonjuice, Sep 14, 2017
    Last edited: Sep 14, 2017
    My mother is very similar and I've even been into the Home to discuss this because as I see making her eat and drink at this stage is merely 'prolonging her suffering and death'.
    Got me nowhere though. Other than confounded looks and being made to feel really, really guilty that I would even contemplate such a thing.:(
  4. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    Hello Jan. My mum too is in a care home and like your mum is in the late stage of dementia and is refusing to eat and only drinking very little. She does drink some complan but myself and the carers are struggling to encourage her to eat any solids and the GP has referred her to a dietician but I don't think this will make any difference. My mum is also being well cared for but it is so heartbreaking to see her declining daily and I just don't know how long I can go on seeing her suffering with this awful illness. She has lost nearly 8 stone in weight and is just so frail and her mobility has declined that she has difficulty walking now. Should we prolong her suffering by continually trying to persuade her to take her medication and eat? I would say no, as long as she is comfortable and not in any pain I would just wish she would pass away peacefully without any further distress for her. This may sound heartless and of course I don't want to lose my lovely mum but this is no life for her just an existence. I know the care home have a duty of care and I can understand that they must try and encourage her with food, but if she is getting so distressed and just wants her life to end why prolong it. Any thoughts would be much appreciated for me too.
  5. LilyJ

    LilyJ Registered User

    Apr 13, 2017
    I'm sorry to read how difficult this is for you but fully understand how you each feel about prolonging a life that is in such decline. I'm afraid that so many people confuse letting nature take its course with euthanasia. Hence the sometimes shocked reaction by some carehome staff! There is a profound difference between actively imposing death and refusing artificially to prolong life, for example by medication. For those for whom this is a significant point, a distinction traditionally made by the Christian church.

    It's a difficult subject at the best of times but how much more when you are so closely involved.

    I believe that there is no need for self-reproach in recognising that the life of a loved one has run its course.

    One practical point: have you considered putting in place a Do Not Attempt Cardiac Pulmonary Resuscitation (DNA CPR) instruction? this can be done with and by your relative's GP. It seems that paramedics and medical staff are required to attempt CPR if there is no order to the contrary in place.

    I hope that you each will find peace and wisdom at this difficult and distressing juncture in your lives.
  6. philamillan

    philamillan Registered User

    Feb 26, 2015
    Hi JanS.

    This is a very sensitive situation and a difficult one for the loved ones.

    There is a way but it requires discussion with her GP.

    It is called Advanced Care Planning. What that means is that in circumstances where there is little benefit or suffering to the individual then a decision can be made in conjunction with the family regarding future care.

    It presumes that a DNA CPR order is in place and if that individual becomes unwell then they would be placed on End of Life Care.

    The GP would have had to already prescribed Anticipatory Medication to keep her comfortable in the Care Home.

    Once the decision is made and the medication delivered from the Pharmacy, the Care Home could ask the District Nurse or the Palliative Care Team to manage the terminal phases.

    All this assumes that she is truly at the end and not just unwell because of infection.

    The GP will be able to clarify if that is appropriate.

    It is probably the only option in your situation and it is still not an easy decision.

    Talk to family and make sure everyone is in agreement before speaking to her doctor.

    May God be with you.
  7. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    Problem is with cases like my mother, and her sister before her, is that it is unclear that she is really at 'end of life' each time. With each 'potential emergency event' over the past 4 years, my mother seems to have the capacity to 'rally' back from the brink of death. Not enough to have any QoL afterwards but enough that she continues to keep breathing.

    She's shown so many of the end'signs of life' for so many years now.

    either sleeping a lot or 'awake' staring into space
    being bedbound and completely unable to move/support her own body
    pulling back socially and refusal/ or inability to interact with no emotional response
    inability to recognise food or what to do with it, dysphagia and little appetite, including weight loss followed by weight gain
    frequent episodes of altered states of unconciousness (and for the past 2 + years seizures)
    and of course her recent problems with respiratory secretions
    as many on here know they can live like this for literally years. My aunt lived at the very, very last stage for 6 years.

    We've had the DNRAND in place for 5+ years.

    She's had the 'Just-in-case' meds prescribed over 2 and a half years ago. Even started the syringe-driver (on a PNS 'as needed' basis) with meds for secretions about three weeks ago.

    The NH and I basically disagree about what to do. I maintain that because my mother is so lacking in capacity and they have found ways to circumvent the 'swallowing issue', they treat her rather like a doll, unable to protest. They call that 'compliance' and a willingness to eat/drink. For the past 3 years they just repeat the instruction to swallow, stroking her throat until the food/drink goes down. I have said my mother would probably still class that as 'force-feeding or 'being kept artificially alive', just with the help of human aid rather than a machine.

    I am sorry if this offends anyone, but my thoughts are based on my mother's reaction to witnessing her sister 'die' over many years like this and we used to pray every day that she wouldn't end up like this. However God seems to have other ideas.
  8. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Jan, as long as Mum is not showing signs of distress or pain, if she can still swallow her meds they are keeping her comfortable, I would let things go on as they are. My late Mum managed to eat and drink morsels up till her last 48 hours. I would just emphasise to the CH that you do not want Mum to be forced to take food, drink or medicine and that, if she refuses just make a note in her file and let her be comfortable.

    This stage can take a long while, or it could end quickly, there's no telling. Just let it remain peaceful.x.x.
  9. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    Hello there Jan

    Its a dreadful situation and so upsetting.

    Mum is in very late stages of this evil illness . Mum currently has a pretty good appertite but, after a recent scare where mums blood pressure and pulse dropped dramatically, mums doctor actually rung me to discuss the future. With his wonderful support (bet he didn't expect me to cry with relief :) ) - I just didn't know how to approach the subject - we now have a DNR in place. We also discussed and agreed that mum will never be force fed/given drips etc and neither taken to hospital. She will be made comfortable and pain free as possible in the NH. I also have the support of the NH as well. Its been a weight of my mind has I know mums feelings of being kept alive so to speak.

    Can you speak to your mums Doctor?

    Hugs at this awful time xx
  10. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I think you could say it now, Jan, if you feel that that's what would be best and kindest for your mum.
    From all one hears, medics and others involved in care may be very reluctant to suggest such a course, because some people do get terribly upset if anyone suggests that someone with a very poor quality of life be allowed to die - they want them kept alive as long as humanly possible, no matter how,pitiful the state they're in.
  11. Frankie15

    Frankie15 Registered User

    Dec 13, 2016
    I'm in the same situation. That's probably the best I can say. My mum is wasting away and sometimes won't eat or drink a thing but we've realised that this is linked to her pain patch and when it's due so now when she won't eat or drink we assume it's break through pain and she's given morphine. Sometimes later in the day she will pick up. If not in give her an ice lolly just to freshen her mouth a bit. Talk to the GP about reasonable interventions. I suspect that they wouldn't give my mum treatment for chest infection now as she's on TLC. Just know you're not alone.
  12. Kawasaki

    Kawasaki Registered User

    Oct 4, 2017
    My dad is in CH, has been hospitalised a few times with UTIs & pneumonia, now having frequent falls which they have decided are due to TIAs.

    He has declined rapidly over the past few weeks, now has zero interest in food or drink & has lost a lot of weight. He has a DNR in place & hospital now ping pong him back to CH if he gets sent in.

    Just wanted to say thanks to everyone who has shared on here. I have found it very helpful to know I am not alone, and that the thoughts in my head are normal, so even though I can hardly see for tears having read the varies things people & their loved ones are going through, thank you from the bottom of my heart for taking time to post

Share This Page