End stage Alzheimers care plan review

Discussion in 'Middle - later stages of dementia' started by Linbrusco, Dec 12, 2019.

  1. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,595
    Female
    Auckland...... New Zealand
    I’m not from the UK, but a long term member.
    My Mum 78 was diagnosed with Alzheimers 2013, and has been in care since 2016.
    Mum had a massive decline a year ago, and was transferred to Hospital level care, as she lost all mobility, last of cognition, speech etc. Mum has lost a massive amount of weight but not yet underweight. Sole nutrition now is Fortasip and pureed foods. Not on thickened liquids though.
    Mum is asleep or awake with eyes closed majority of the time.

    Since moving to hospital care she has not had one UTI ( is on a low dose anti B) not one sniffle or infection.
    A few small skin tears and oral thrush has been her only issue.
    Staff say she always has good vital signs and has a strong heart.

    We have a care plan review with Nursing/OT/GP in a few weeks.
    What should we be asking going forward.?
    Mum was so bad when she was moved from dementia care to hospital care back in January ( UTI & chest infection) that we didnt think Mum would be with us now, but can see she could be like this for some time yet.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    11,106
    Female
    South coast
    When mum got to this stage the CH manager, her GP and me talked and agreed that
    mum should have a Do Not Resuscitate form
    mum should not go to hospital except for broken bones to make sure that she is not in pain
    she should only have one round of antibiotics for any infections.

    It would also be a good idea to talk about any medication that she is taking. Mum had her donepezil stopped at this point.
     
  3. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,595
    Female
    Auckland...... New Zealand
    Thanks @canary
    all Mums meds were stopped at the beginning of the year except for them giving her paracetamol & the anti B.
    Mum was weaned off Quetiapine and has been on 12.5mg a day for some time. 6 weeks ago they stopped the last dose but she would be awake all night and highly agitated during the day, so they restarted it.
    The Care Home do resuscitate, but in the 4 yrs they have been operating they say they have never had to do CPR. We never knew Mums wishes. Its no use asking my Dad, and my sister & brother dont wish to talk about things until faced to.
    When Mum declined last year the Care Home asked if we wanted her to go to Hospital for an MRI in case of stroke but that was one thing we agreed upon, not to.

    Considering Mums advancing dementia I feel
    so unprepared for her actual passing. All we know is she wants buried and thats it. Thankfully she does have a will.
    Being Mums EPOA I hate having to make all these decisions :(
     
  4. canary

    canary Registered User

    Feb 25, 2014
    11,106
    Female
    South coast
    Making decisions on your own is awful. Can you not talk it over with her doctor so that it isnt just your decision?
     
  5. millalm

    millalm Registered User

    Oct 9, 2019
    53
    @Linbrusco If you read the statistics on the results of CPR efforts I think it will make it easier for you to make a decision,as even on younger healthy people CPR does not often restore one to their previous health. Since you have made the decision to stop your Mum's meds it sounds like you are already heading toward acceptance that she is at the End of Life stage. I have been there with my Mum since March, some days I think today will be the day and other days I think she could be here another year. I have a brother but he is an invisible so I have been making the decisions regarding my parents life and death on my own for the last 8 years so I know exactly how you feel. Having to make the decision for a DNR order is almost as difficult as having to decide to let nature take it's course, but I can tell you once the decision is made and the paper signed you can put that worry away and move on to focus on spending the remaining time with her.

    Difficult doesn't even begin to describe how it feels to have to make all these decisions by yourself, and no one can understand unless they are in the same boat. Fortunately there are so many of us here who can identify with what you are going through that you should never feel alone :)
     

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