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At what stage is the final stage?

Discussion in 'Middle - later stages of dementia' started by lilacben, Mar 17, 2015.

  1. lilacben

    lilacben Registered User

    Jan 22, 2013
    39
    My mum in law hasnt eaten for weeks and only sips of drink...has been in bed for the past two weeks and will not get up. Chest infection a month ago and then another one two weeks ago.Very aggressive and screams when anyone touches her.
    She has now been in hospital since sunday... they tried to examine her but it took my husband,his brother and myself to keep her still and to stop her lashing out to do it.. same with everything like putting a line in for a drip.
    Now she is on a ward and they say she will not let them touch her ...well I would have thought A&E would have told them that.! Anyway... still not eating.drinking ect.
    What will happen? They cannot leave her like it?
    The consultant said on sunday she is in the final stages but what is final? when and how long can this be?.. she still is very strong ...as the three of us and the nurses found out.. one was smacked across her face....consultant was punched in the eye.?
    Just so confusing.? We do not live near so not there all the time. but would go up within mins if we had too. Its only four hours away.
    I know it is like saying how long is a piece of string....dont know what to think.
    Thankyou for reading this xx
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    18,359
    Male
    North Manchester
    I think you need to contact the Palliative Care Team at the hospital and ask the questions you are posing.
     
  3. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    I agree with Nitram. Is the aggression due to pain? Perhaps also ask what pain relief she is getting (if anything)? Has the chest infection cleared up? It's difficult when you are so far away.

    So sorry you and your family are having to go through this-let alone your poor MIL.

    Love

    Lyn T XX
     
  4. lilacben

    lilacben Registered User

    Jan 22, 2013
    39
    Many thanks... all we get from the hospital is we cannot force her to eat.? We are not sure about the pain with the screaming but sometimes you are nowhere near anything and she says it is hurting her and to stop. I was helping the nurse in A&E to get her cloths off and she was screaming.. the doctors touched her foot or leg and she said "the pain" as well as screaming.
    The doctor said the chest infection had cleared up but she is very crackly in her throat.?
    But nothing has been said about any of that.
     
  5. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    Definitely have her assessed for palliative care.
     
  6. kenaidog

    kenaidog Registered User

    Apr 8, 2013
    164
    I think if she is still able to communicate that she will not be near the end yet, my mam was like that when she had to go to hospital, she barely ate a thing and was very aggressive, that was more than a year ago and she is still here.
     
  7. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    My Husband was strong till the end. When he was in pain his aggression was much worse. Ok so the chest infection has been ruled out but have they tested for a UTI? The crackling in the throat is a worry-could this be aspiration pneumonia? I'm afraid that having to shout loudly may be your only option. Get the palliative care team involved. No the hospital can't force feed her-and I'm sure you wouldn't want that to happen as it causes a lot of distress. But a palliative care team would ensure she was offered liquid and 'easy food' such as jelly or yoghurt etc. on a regular basis=not just at mealtimes. If she refuses at least she will have had nutrition/fluids offered. Morphine patches could also be used to ease pain. These people have a lot of experience. If you cannot visit you need to be fierce with the hospital consultant/ward director to ensure that your MIL gets the comfort from pain that she deserves.

    Love,

    Lyn T
     
  8. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Difficult to tell. My Husband was pointing at his hallucinations and voicing 'sounds', he ate his lunch, vomited and died in my arms from aspiration pneumonia but, as you say with regard to your Mam, Pete had done that on a previous occasion and not died.
     
  9. kenaidog

    kenaidog Registered User

    Apr 8, 2013
    164
    i meant that at the very end stage they cannot communicate at all as that goes from them,. i only know this from what i have read about the final stages.
     
  10. susanh13

    susanh13 Registered User

    Oct 23, 2013
    17
    My advice would be that you ask the palliative care team in the hospital and the consultants .You should ask them what do they mean by end of life in most cases it means that the person life is coming to an end and that is where the palliative care team should come in . However ,is sounds like she is in so much discomfort and for that reason they should ensure that she is comfortable . Many a times when one is put on Palliative care they take them off medication . I would like you to find out if they have taken her off all medication ? If they have she still got the right to be given medication that could calm her down in order for her care to be taken good care of . If they haven't taken her off any medication and they are struggling to give her care then any calming medication should be given . Also please do not be afraid to ask them and be bold with your questions and ask for a private meeting . Also because of her condition have they consulted you as family that if they have taken her of medication if they haven't then ask why they never did. Please don't be afraid to ask them about anything . I'll also edge to make more research on palliative care I'm not sure if that differs from institute to institute . All I know is that in her last days she need to be comfortable . There are many ways they should administrate medication is she can't anymore take solid tablets which at this stage it sound like the case . However ' demand explanation and they should speak to you one to one not over the phone . Always note the name of the person you spoke to and write all down whatever they say . She just need comfort and she is entitled to it .

    Hope this will be of help my heart and prayers go to her and your family
     
  11. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    I accept your opinion/observations:) My Husband's end was different (but then he was always different:)) Pete was assessed as being probably at end of life stage 18/05/2014=he passed 09/12/2014.Pete hadn't said anything that anyone could understand since dec 2013 (apart from the odd word) he absolutely couldn't communicate any thoughts or needs.However, as I say, Pete was communicating in his own way that he was seeing something/someone in front of him. He was sitting up in his bed and hallucinating. One other person's passing springs to mind; Tom (nellbelles Husband) was asking for food up to 1/2 hour before he passed -I guess everyone's ending is different. Every passing is sad and tragic-some are unexpected; some like my Husband's (and Tom's)was expected but against the 'normal' fading away that I for one expected.

    I'm glad that your Mam recovered from her time in hospital-I've no idea why some people do carry on and some don't.

    Take care

    Lyn T XX
     
  12. lilacben

    lilacben Registered User

    Jan 22, 2013
    39
    Thankyou all for sharing.. Mum is hallucinating....has been for awhile..she saw Clarke Gable on her hospital ceiling on sunday. bless her..she really liked him in her days..Did I mention she is turned 90 now.
    They did tell us they do not sedate elderly people to do any tests ect.. but honestly they must do surely? She hasnt had a wash for two weeks or a bath for months they cannot let that carry on in hospital.? Well I hope not !...Althought my brother in law was her "carer" I didnt feel he was really looking after her. But after all our phone calls to SS about out concerns... they didnt do anything... Because he is down as her "Carer"
    they will not take any notice of my husband or their sister.
    But from what you have all said has helped me to understand the term used. Thankyou xx
     
  13. susanh13

    susanh13 Registered User

    Oct 23, 2013
    17
    Get PALS of the hospital involved - tell them you are not happy with what is happening in the lack of washing and communication. The ward sister will then have to answer the questions you raise.
     
  14. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    End Stage

    I think LynT has it about right here. All through this terrible disease, levels of communication vary from patient to patient. My Mum was fairly clear until just about 2 days before her death. At one stage it was very clear that she was attempting to
    'put her house in order'. My sympathies as it must feel terrible if you are a long way away. Time to made a fuss, palliative care definitly does not mean no-care. How heartrending all this must be for you.
     
  15. WIFE

    WIFE Registered User

    May 23, 2014
    857
    WEST SUSSEX
    It is all very sad - my husband was put on "end of life" care three times in nine months. In his NH it simply meant that he would not be forced to eat and the final time, to drink fluids at all if declined. He would not be medicated as previously for infection or the daily comfort medications for heart, blood thinning etc. When necessary he would be administered pain relief and anti-agitation medication finally by syringe driver three days before he died. As I understood it from the Nursing staff and Doctors who attended him "end of life" simply meant withdrawal of anything previously administered to keep him alive and in his case the end when it came was extremely peaceful and un-dramatic. I would like to think in a perfect world it could be like that for everyone. Loving thoughts WIFE
     
  16. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    I have not experience of end of life in hospital. My mother was put on palliative care at her CH and two doctors came and discussed the implication with us. Basically mum would have lasted a few more weeks with more intervention but this would have just been prolonging the agony. She was kept comfortable and pain free and washed on a daily basis in the CH.
    She had not had any recognisable speech for some time but was able to communicate in other ways . From the beginning of the palliative care she was refusing most food although they did continue to offer easy food like yoghurt and she did not want much fluid either. To have tried to force this on her would have only resulted in distress. Her mouth was kept moist and the CH got in a special mattress with air to keep her comfortable. She died peacefully after around three weeks. She was calm and dad and I were at her side. it was one week after her 60th wedding anniversary and two weeks after her 81st birthday.
    When my husband was in hospital and I was unhappy with things I got a really quick response from PALS so I would second trying to contact them. They actually had a help desk at the hospital my husband was in and I went there all fired up with rage about my husband's treatment and they were so nice I just burst into tears.
    Tre
     
  17. lilacben

    lilacben Registered User

    Jan 22, 2013
    39
    I have been very touched by your stories...Thankyou so much for sharing them with me.
    xxxx
     
  18. lilacben

    lilacben Registered User

    Jan 22, 2013
    39
    Things are continuing the same

    Hello to you all again.
    Well after a week in hospital my mother in law is still not eating or drinking...refusing her medicine..still will not get out of bed or let the nurses wash her..They are now talking about sending her to an EMI unit.... We phone everyday and everyday they say no different. They do not seem to know when she is going to be discharged into one of the EMI units or where.?
    So what happens now.? How long can she go on like this?...
     
  19. Ginnykk5

    Ginnykk5 Registered User

    Jan 6, 2015
    70
    Hemel Hempstead
    She still is very strong ...as the three of us and the nurses found out.. one was smacked across her face....consultant was punched in the eye.

    Hope you dont mind but When I read this it made me smile well laugh actually, (how i would like to be able to do this sometimes!) she seems to be a game old bird. I hope shes not in pain just being herself, wanting to be left alone.

    It took my sister 3 days but that was cancer. She had been eating and moving around till 8 days before she went. I hope she goes peacefully, God Bless
     
  20. nitram

    nitram Registered User

    Apr 6, 2011
    18,359
    Male
    North Manchester
    Life expectancy without fluid intake is measured in days or exceptionally in weeks.

    Life expectancy without food intake is measured in weeks or exceptionally in months.

    Nobody can accurately predict, in my wife's case the out of hours doctor who came to certify death happened to be her GP who had seen her a few hours before because yet another toe nail was falling off with risk of infection, he said he would have given her another 5 to 7 days. She had not had any food for 10 days or fluid for 5, she had been on a syringe driver for 3 days.
     

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