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What to put in an end of life directive?

Discussion in 'I care for a person with dementia' started by Ash148, Mar 2, 2015.

  1. Ash148

    Ash148 Registered User

    Jan 1, 2014
    276
    Dublin, Ireland
    Hi I live in Ireland where there is very little guidance in terms of end of life planning. Mum has late stage dementia, has lost mobility and language, needs to be fed and 24 hour supervision but is not in pain, thank goodness.

    Four weeks ago she had a fall and cut her head and was sent to hospital for stitches. She was in A&E for hours because they wanted her to have a CT scan but could not get her to stay still. They had several gos at sedating her and eventually had to give IV sedation. The scan was to check for any internal bleeding. When we asked what they would do if they found any bleeding, they said transfer to the national neurosurgery centre for assessment/potential surgery. The following week she had a chest infection and the junior doctor who came wanted her transferred to hospital again. Thank goodness the senior doctor was available and advised against this. Mum rallied within 24 hours, but the doctor subsequently told us he didn't think she would survive. Last week, mum had a period of almost 24 hours during which the nurses and we were unable to rouse her. Eventually, they did a "sub-cut" to provide fluids through a needle below her skin and she revived again. This seemed to be a relatively minor and not particularly invasive procedure.

    I am terrified that at some stage one of these recurrent crises will result in mum being transferred to hospital, e.g. for IV fluids, which would be terrifying for and pointless since she her doctor says that she is in the final stages of this awful illness.

    Can anybody advise as to how best to write a directive to specify that mum should only get treatment if it will make her more comfortable or relieve pain? Is there a template that can be used for this? I have searched for something like this without success.
     
  2. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    Difficult to advise you as things may be different in Ireland. Could you speak to her Doctor before putting pen to paper? I would go for DNR, and no hospital admissions unless for broken bones. I guess its just palliative care you are after, I'm in the same position. All the best, its heartbreaking isn't it?
     
  3. irishmanc

    irishmanc Registered User

    Jan 14, 2015
    64
    Manchester
    Hi Ash148,
    Lovely to see another Irish person on here. Have you tried talking to the Alzheimer's Society of Ireland? They are very helpful and can give advice on issues like this. You can ring them on 1800 341 341.
     
  4. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    5,078
    North Bucks
  5. Ash148

    Ash148 Registered User

    Jan 1, 2014
    276
    Dublin, Ireland
    Such a good idea, thank you. I've talked to them before about other things: I don't know why I didn't think of it for this.

    As an aside, I recently missed my flight home from London to Dublin (I work in London three days a week). One other gentleman missed it too and we went together to the ticket desk to rebook for the next flight. It was a Friday evening and I was afraid that there might be no, or only one, seat on the later flight. If there was one seat only I was prepared to play my trump card: must get home to see mum who is in last stages of dementia. We got talking, and it turned out he too was travelling home to see his mum who is in last stages of dementia. Luckily there were plenty of seats left for the later flight!
     
  6. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,127
    eastern USA
    Hello. I've been wondering how it is going for you. In the US, advance directives (living wills) are usually made by the individuals while they still have capacity. I think jimbo has sent you to a good link for what might help you out now. The biggest issue most families face is getting everyone on the same page about care. I hope this gets resolved for you soon, so that you can have some peace of mind about not having your mother go through unnecessary hardship.
     
  7. irishmanc

    irishmanc Registered User

    Jan 14, 2015
    64
    Manchester
    Interesting - good to know we're not struggling alone. I'm an only child too to make it even worse!!
     

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