I don’t know what I can do next

Discussion in 'End of life care' started by Missy12, Jan 23, 2019.

  1. Missy12

    Missy12 New member

    Jan 11, 2018
    2
    Female
    Durham
    my mum is 91, she has Alzheimer’s, she is now in a care home. She isn’t eating and wasn’t drinkinking. She is now constipated. I have been today and had a shock, as I haven’t seen her for a week as I have Parkinson’s disease and have had a chest infection.

    She looks like she is nine months pregnant as her stomach is so extended, every time she tries to move she is screaming and crying in agony with pain in her back, the community matron has been out five times in the last two days to her, she has had two enemas, fruit juice, medication which they have now doubled. But nothing at all has happened, she has been constipated for over a week. She has rapidly deteriorated over the last few months and is very frail and weak. She doesnt have the energy to even push. We have today requested a doctor be called out. The home were reluctant to do this as they said the matron would be out today to assess her. But we insisted, however I have not had any phone calls to say she is going to hospital, and I feel sure this will happen, so I’m guessing they haven’t called the doctor in.

    They did tell me they are watching her every 30 minutes and if there is anything they will ring 999. I find it unbelievable that a frail, weak lady should be left in so much pain. But whatever I seem to ask they do the opposite.

    I’ve asked them how long she can be like this and they just say it’s up to the matron. We nearly lost my mum twice at Christmas through them not monitoring her fluid intake and food. The doctor told me she was going to die then. However, she pulled through simply because my brother went and gave her fluids. We have had several safeguarding meetings and each time they promise it is going to be different. We feel that she is so frail to move her now would definitely do more harm than good.

    I do not know what to do next. Has anybody else experienced this severe constipation and if you have what should we be doing. The home think I’m over reacting but I just want my mum to be comfortable and not be in pain, as she is in the last stages now. It really is heartbreaking to see her in so much pain.
     
  2. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    297
    How horrific for your mum..if it was my mum i would phone 999 myself. Your mum is at risk off a perforation of the bowel...you dont need home to do it..you are your mums advocate..wishing your mum well and relief soonxxx
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,663
    Female
    South coast
    Hello @Missy12 and welcome to Talking Point, although I am sorry about the circumstances that have brought you here.

    When someone is at end of life with dementia the body starts shutting down slowly over days, or even weeks. They stop eating and drinking because the body can no longer process it and sometimes the intestines sort of fuse, causing extreme constipation. My mum had this at the end of her life, but fortunately, suppositories shifted it.

    Im thinking that it is maybe time to have a very open and frank talk with the doctor. Ask if she is at end of life and if she is then maybe further intervention is not appropriate. Whatever the outcome, though, your mum should not be in pain - she should be kept painfree and comfortable.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,566
    Yorkshire
    hello @Missy12
    I am so sorry your poor mum is so uncomfortable - I hope a GP was called and is making sure your mum is not in pain
    best wishes to you both
     
  5. Doggy86*

    Doggy86* Registered User

    Sep 2, 2018
    48
    Islington
     
  6. Cazzita

    Cazzita Registered User

    May 12, 2018
    370
    What an awful situation. Hopefully, something has been done by now as surely nobody should be left in such pain? Thinking about you x
     
  7. Francy

    Francy Registered User

    Dec 3, 2018
    53
    Female
    Co Down
    How awful, if you haven't already done do take action yourself don't wait any longer, "no one should be in pain " to quote my nurse. If your mum is at end of life, make it as easy as possible and don't worry what care home of matron think or do, she's your mum. You have my heartfelt sympathy. XXXX
     
  8. Doggy86*

    Doggy86* Registered User

    Sep 2, 2018
    48
    Islington
     
  9. Doggy86*

    Doggy86* Registered User

    Sep 2, 2018
    48
    Islington
    Hi,

    I hope your Mum is ok now. If not just call an ambulance and get your Mum seen to.

    Be strong and trust your own gut feeling.

    Doggy86*
     
  10. Missy12

    Missy12 New member

    Jan 11, 2018
    2
    Female
    Durham
    Hi

    I know I haven’t put anything on other than what I wrote in January, but such a lot of things have been going on., my Parkinson’s has deteriorated, one of my sons has just lost his baby girl, my dog has had a major operation and my mum godpdh has rapidly deteriorated.

    We managed to get her over her bowel blockage. But she hasn’t eaten anything hardly for months. She has had to be rushed to hospital twice as she was unresponsive. She has lost lots of weight, but still she carry’s on.

    I haven’t seen her for a couple of weeks and I went yesterday, it was heartbreaking. She hasn’t the strength to lift a cup. She could hardly speak, her legs are purple and she is sleeping all the time. She didn’t know who my daughter was or my granddaughter. Victoria my daughter went to kiss her goodbye and she looked terrified. Both my daughter and granddaughter were so very upset. She was sat in her wing back chair she looked so small. I managed to get her to take a small drink, but that was it.

    She’s weary, she doesn’t want to be here. It’s cruel to have to see her like this. She was always petite but now she’s so small and frail. Each time I go she’s less and less my mum. There seems to be nothing left of her. She slept all the time we were there.

    I keep waiting for that dreaded telephone call, but I think if she did go at least she would be at peace. She’s got no life arpt all.

    But this seems to be the normal with this horrid disease it robs a person of everything, memory, dignity, personality, just everything.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,663
    Female
    South coast
    ((((((((((((((((((((((((hugs))))))))))))))))))) @Missy12 So many sad things happening


    One thing that struck me, though
    I found myself wondering who exactly benefits from her going to hospital? Surely not your mum as most people with dementia find going to hospital traumatic and also perhaps it would be for the best if your mum just passes away peacefully. Is it the care home who is organising the ambulance? They have a duty to do this unless otherwise authorised, so when mum reached this stage I had a chat with her GP, who agreed with me. She already had a Do Not Resuscitate form, but the GP made sure that this was in her care plan and also recorded not to take her to hospital, but to keep her comfortable and pain free.
     
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,566
    Yorkshire
    hi @Missy12
    such a sad and troubling time for you and your family
    I agree with canary, have a very blunt chat with the care home manager and the GP, they can be reluctant to open such a conversation themselves as some families simply want not to discuss
    I wish peace for you all
     
  13. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,287
    SW London
    I do so agree with this. By the time my mother's quality of life was so very poor, I was very clear with the CH that there should be no hospital unless it was absolutely necessary - e.g. in the case of another broken hip. It's true that some relatives never want to discuss 'palliative care only' and get very upset if anyone suggests that it might be kinder to let nature take its course - they want absolutely everything done to keep the person going. So instigating a frank discussion with staff/medics may well be the way to go.
     
  14. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,946
    Female
    East Midlands
    Oh @Missy12 your poor mum & you have had much to deal with yourself.
    I’m amazed at how some people survive on just very little & carry on with dementia. It is simply unbelievable.
    My mum was 90 when she passed away. She had all sorts of complications in the end but was also constipated & had a bowel obstruction. I think you need to have a very frank discussion with the care home & the GP as to end of life care. She must have a very strong heart. Xx
     

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