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Stop and start eating - is this common?

Discussion in 'End of life care' started by Vivianne, Nov 3, 2018.

  1. Vivianne

    Vivianne New member

    Nov 3, 2018
    My 87 year old mom has end stage Vascular Dementia and is in a nursing home.
    A month ago she had a UTI which did not improve with antibiotics so she was given three courses in total.
    Her appetite was really poor during this but 8 days ago she stopped eating and hardly drank anything.
    She is diabetic so the doctor reduced her medications and actually took her off insulin on Wednesday, by which time she was refusing to get up and just wanted to sleep.
    On Thursday the home told me that she was 'winding down to death' and they said she probably only had days left.
    Out of the blue yesterday, mom accepted a tiny milky way chocolate cake bar followed by a small bowl of ice cream and a cup of tea! After that she wanted to get up and actually sat in the lounge for a little while.

    This morning she has refused all but a couple of teaspoons of food and refused to get out of bed again.

    Is this common?

    My mom is just skin and bones, but still 'rouse-able' so the end is not close yet, but can anyone tell me if they have had this with their loved ones please, and what happened?

    Is there a chance she could 'rally round' and carry on for weeks or months even?

    I hate seeing her the way she is and i'm wishing, for her sake, that the end comes quickly, then of course I'm wracked with guilt for even thinking that . . .

    Thank you for any help/advice you can offer.
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Vivianne, welcome to the forum.

    I'm sorry to read about your current situation. The truth is that this state of affairs can, indeed, continue for weeks or even months.

    All that I can say is that the members here will have knowledge and experience of your situation so please continue to post for support at this difficult time.

    It may be of some assistance to you to read the Society Factsheet about this stage and you can see that by clicking the following link. The PDF link will give an instant read.
    End of life care (531)
    PDF printable version
  3. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    Hi..your post reminds me so so much off my mum... after 5 chest infection and s uti..mum was unresponsive....not eaten for 8 days only sips.we withdraw all treatment..all end off life medication put in place.!..priest out to vist her.that was 6 months ago and low and behold she still her..weighing 4 stone if that!!!..she is now eating a few mouth fuls of yoghurt..and has ensure drinks..its been a horridic time for us as i family..we are all suffering with severe grief..i was actually at a point were i sobbed uncontrollably for a least 2 months..felt overwhelmed with it all..my poor mum!@..heart breaking for all..and i am thinking of you and others on this final phrase off this journey..i can only speak for ones self..but i honestly wish my poor mum with slip peacefully.xxx
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    In the case of both my father and my fil, we were called to see them three times because they were not going to last much longer. My OH was give hours, maybe days, and died 15 hours later.
    Everybody is different!
  5. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    Yes, my mum was like that for years and it was only the patience of the carers who persevered with feeding her that kept her going.
  6. Ray96

    Ray96 Registered User

    Sep 29, 2018
    #6 Ray96, Nov 12, 2018
    Last edited: Nov 12, 2018
    Same with my mum, stops eating and drinking then starts again, it's always less and less though. Was in hospital for two weeks, came out last Tuesday. I went in every day to make sure she had some liquid nutrition and fluids, it is my patience and persistence, and the carers that I have that are keeping her going, simple as that, she would have likely died in hospital if I had not gone in to her for 4-7 hours a day, they were not very good in looking after someone with late stage dementia.

    She's home now in a hospital bed, stable but under the hospice from now on for end of life care, although not seen anyone yet, her GP is due this Thursday. One thing that has got a lot worse is not just refusing food and drink but her anger is off the scale, particularly with me her son and main carer. She keeps lashing out, spilling drinks over me, scratching, says she wants to kill me, all very difficult and upsetting, and yet I just keep on going, somehow.
  7. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    I shall probably get shot down in flames for this but just airing my thoughts...
    Mum's eating and drinking became less and less and she would stay in bed 24 hours a day if allowed to. So, having eliminated UTIs and the like, it was left to us to encourage, cajole and bribe to get anything into her. Then she might pick up again for a bit but soon returned to not accepting liquids or food.
    Throughout my life I have had dogs and cats and, cats especially, seem to want to 'go away' somewhere alone and die at the ends of their lives. I could not help but compare my mum's behaviour to this and wondered maybe if this is something that mammals do?? I have asked people I know who are carers for their opinions and, although some gave me a wide berth after the enquiry (!), a few have seen some connection.
  8. Leswi

    Leswi Registered User

    Jul 13, 2014
    Hello I've not been on here for a few months but this post brought back so many memories for me. I looked after both mum and dad to the end of their lives at home, both with dementia. Mum had a gradual decline over a couple of years and from the first time we were told to expect her to pass away to the actual day she spent 3 months bedbound. During this time she took tiny spoons of purée food and fluid, we thought she was going several times but next day would perk up again. It was when she lost her swallowing that forced the issue and she lasted a couple more days. Dad took a sudden decline following a chest infection and was gone in a couple of days after his last hearty meal. So I think what I am saying is nobody knows exactly and even professionals get it wrong sometimes.. the Dr refused to make further predictions with mum after the third one.
  9. Vivianne

    Vivianne New member

    Nov 3, 2018
    My mom passed away on Friday 23rd November. I am glad, for her sake that she didn’t last longer than that. The last couple of weeks were harrowing but the end, when it came was very peaceful.
    Three months must have been awful to live through. I feel for you x

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