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Eating & drinking when eyes firmly shut/or cant be woken to feed

Discussion in 'Middle - later stages of dementia' started by Linbrusco, Oct 5, 2019.

  1. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,585
    Female
    Auckland...... New Zealand
    My Mum is now in Hospital Care and in a severe to end stage of Alzheimers since January and is yet again in a stage of being either asleep or awake with eyes shut pretty much 23 hrs a day.
    The only time the carers manage to get Mum to stay awake long enough is first thing in the morning when they feed her breakfast, hoist her into shower or when dressing her.

    So whats your thoughts with carers feeding, when in the state of awake but eyes shut.
    I dont even think Mums aware of being fed, or wanting food, but much like a babys automatic reaction when you put a bottle in their mouth or a spoon on their lips.
    Mums swallow is still OK, but ocassionally coughs a little in between.
    Her weight fluctuates up and down a few kilos.

    There is one lady there, ( used to be with Mum in the Dementia Ward) who to me looks in a comatose state, so soundly asleep with very little movement, that to me seems cruel to wake her sufficiently to the point where its almost like force feeding. She is only fed Fortasip and purees, but coughs and splutters through the first few swallows.
    Apparently this lady has been like this now for 2 yrs.
    I dont wish to see the same for my Mum :(

    When Mum was at a moderate stage of dementia and aware enough to refuse food or wave your hand away when she’d had enough, I had ( still do) strong views on no drip/tube feeding if it came to it, but the stage shes at now stirs up a lot of emotions and what feels right or wrong.
     
  2. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    121
    Female
    Staffordshire
    Hello , we messaged earlier in the year , mums now in nursing home and I am in agreement with you . Mum doesn’t want to eat but if it’s being spoon fed she will take it , firstly like you said it’s an automatic reaction and secondly mum is too polite I feel she doesn’t want to be rude to the lovely girls who feed her . She tells me she doesn’t want to eat . I hope you are coping ok and thinking of you ,
     
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,314
    Female
    Chester
    I don't know what the rules that the care home would have to adhere to are but I don't feel comfortable with the idea of over encouraging feeding.

    Your comment about babies bottles resonates, my dau would wake in the night, and feed her, she'd seem to be asleep before she had finished feeding, although clearly she was actively sucking otherwise she wouldn't have taken anything in. But she was actively awake in the day taking the feeds in the same way so I don't think this is a true comparison,she was gaining weight rapidly and had dropped her night feed around 18 weeks.

    Personally I'd be having a conversation with the relevant manager and maybe even GP or relevant Dr (system will maybe be a little different in NZ) and ask them if this was appropriate for your mum.

    I note Moose 1966's comments, and to my mind this isn't quite the same as her mum is able to clearly express herself, is aware of what is happening, whereas I think your mum from your previous posts has little awareness.
     
  4. millalm

    millalm Registered User

    Oct 9, 2019
    27
    @Linbrusco my Mum sounds like she is in the same stage as yours. Back in March she was reassessed because of lethargy and not eating. The home designated her 'End of Life', they immediately withdrew all meds and stopped bringing her food trays, suggesting I feed her soft pudding/jello etc but not to 'encourage ' her to eat or drink. Within 3 days she was at death's door but when I gave her a lemon flavoured swab for mouth care she suddenly latched on to it and sucked like a thirsty newborn. I suddenly realized that I had listened to the 'experts' and not to my own little voice, and I was in fact hastening my Mother's death. As terrible as this dementia journey has been, I did not want to be the one deciding it was time for her to die. I started offering her thickened liquids then soft foods and within a day or two she was back from the brink. They now think there was an underlying illness that was causing the symptoms, not her dementia. To make things worse, it turned out that they had not ever intended for her to be deemed 'End of Life' but in fact to be deemed in need of a 'Palliative ( non invasive) Approach' to care !!!! A communication problem between departments if you can believe it!

    Now here we are 8 months later and I am pretty sure she is rapidly approaching the 'End of Life' stage for real, but this time I know what to expect and so I am at peace now ( as much as you can be) with what is happening. I wanted to share this with you in response to your comment about coming to the point of not knowing what feels wrong or right. Having seen some of your earlier posts I sincerely believe that you will know when the time comes, and if you listen to your little voice the choices you make will be the right ones.
     
  5. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    121
    Female
    Staffordshire
    Mum sleeps 23 out of 24 hours , no quality of life. She will take food it’s an auto response when spoon is there she will eat . Tell me why this is right .
     
  6. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    184
    I don't wish my mother to suffer and have always been clear that I wouldn't prolong life just because I could. If she is happy I'd feed if she needed help. I'd not be feeding if unconscious
     
  7. millalm

    millalm Registered User

    Oct 9, 2019
    27
    @Moose 1966 When I said to @Linbrusco they would know what the 'right' choice is when the time comes I meant 'right' in terms of knowing what to do about feeding/drinking at the end of life. There is nothing right about having to watch the progress of this devastating disease, and know there is nothing you can do to help or even comfort the person you have loved all of your life. I'm sad for you and everyone of us who is on this soul sucking journey.
     
  8. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    121
    Female
    Staffordshire
    Thank you and I love your description of this journey .
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    My Dad refuses to open his mouth to be fed. Perhaps that’s what the home are waiting for .
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    Such an apt description
     
  11. Lovedby

    Lovedby New member

    Oct 27, 2019
    1
    Hello, I have just joined this forum. My mum, who is now in care has had dementia for the last few years and since going into a home, seems to have deteriorated. She has started to close her eyes almost all day, even when she is awake. She will try to walk with her eyes shut and has, as such, fallen frequently over the last few weeks. It’s difficult to watch. I suppose I just wanted to share this and know that there are others like me trying to deal with the most horrible of diseases. Thanks
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    It’s so difficult to watch & just stand by knowing you are powerless to stop the progression of dementia
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,462
    East of England
    I am in a similar dilemma and find the comments on this thread a helpful debate on this issue. It’s a big moral dilemma for carers whether at home or in a care home. Communication is vital and I have discussed it with our GP. One of the ladies who come to help my husband mentioned tube feeding which filled me with alarm but the GP was not in agreement and does understand my husband’s situation very well. As always I ask What purpose would it serve? My husband doesn’t eat enough to stop losing weight but enough to sustain life and I have taken a palliative approach to his care, let him eat, mostly liquidised or very soft foods, encourage but not force. If he starts refusing entirely then I am in a dilemma. At the moment I think I would try to keep him hydrated alone but I don’t know.
     
  14. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    121
    Female
    Staffordshire
    Hello , I have that dilemma mum is bedridden and cannot do anything for herself , she’s been like it now for 10 months . She’s in a great NH who through good nutrition have kept her alive . She’s refusing food and fluids more in the last few days , is tearful and has whispered how much she wants to die , it’s awful to hear her distress . My question is one of the lovely staff said yesterday “ she didn’t want her favourite porridge but after a few attempts of offering the spoon to her mouth she had some “ . Mum is a very sweet polite lady I feel she is taking the spoonfuls because she doesn’t want to be rude , can I ask the staff to respect her initial refusal of food and offer liquids as necessary. Sorry if this sounds harsh but we have been very on this long journey and her suffering is heart breaking .
     
  15. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    There comes a point where even if food is put in the persons mouth they don’t swallow. This is sometimes called pouching. After my husband had an operation to replace a broken hip this is what happened.

    I was concerned to find him with a mouthful of food which could have choked him. SALT recommended Level 4 puréed food and thickened liquid but he clearly didn’t enjoy it. I have read enough on TP to recognise the signs in front of me but I could not get hospital or nursing home staff to see what I was seeing. Either that or they are obliged by law to carry on as if all was normal. If half teaspoons of food can be normal.

    Drastic weight loss and steep decline meant that the inevitable happened and my husband died in less than six weeks after the break.
     
  16. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    121
    Female
    Staffordshire
    Thank you and mum is swallowing food again , she did struggle a few months back but then got back on track . I guess you are correct in they will continue to feed her while she’s able to swallow. It’s heartbreaking. Advice appreciated thank you
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,462
    East of England
    @Moose1966 this is truly heartbreaking and I know this myself with my husband. He will still eat his favourite foods even if only in small quantities. In a NH the staff are guided by rules such as duty of care. However your mother’s best interests come first and this is where the doctor is the way forward. Quite honestly it sounds as if the staff are doing what they should, offering not forcing. Offering more than once is normal as far as it goes and this is enough to keep her alive but slowly declining. To stop offering would be wrong and the question is should it only be offered once. This is the heart of the dilemma. I don’t have an answer I am sorry, but I don’t think anyone does at the moment. If your mother flatly refuses to eat then I would say that it would be wrong to force her but I don’t know if I am right or not.
     

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