1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Hard choices for loving people .. immensely helpful !

Discussion in 'ARCHIVE FORUM: Support discussions' started by sarahc, Jul 6, 2007.

  1. sarahc

    sarahc Registered User

    Apr 4, 2004
    33
    #1 sarahc, Jul 6, 2007
    Last edited: Jul 7, 2007
    Sorry for long post - but please read if you have a loved one nearing the end (sorry to be depressing !....)

    I have been having a bit of a time of it recently as my lovely mum died on June 11th. Some of you may know that I rushed back from Mali , West Africa (where i live), on June 7th to find her , as she had been when I last saw her two weeks previously - that is to say totally unable to swallow, completely emaciated, bruised (side effect of frusimide medication i think), totally unable to speak etc BUT also with pneumonia that had been treated for five days with a strong broad spectrum antibiotic, to no effect. When one of the lovely nursing home carers started giving it to her again (in liquid form that she couldn't actually swallow - pills were out of the question), I said ' Do you have to ?' and she said 'only if you want'. I tell you it was like an epiphany (sp?) as i suddenly realised that actually it might be better to let the pneumonia take its course. So I discussed things with the GP who then signed off on forms to stop all treatment. What occured was totally expected - mum had some discomfort that was managed with morphine, slipped into a coma and then passed away relatively comfortably three days later. All this was fine.... until 3 weeks later ie now (!) I started to have a horrible guilt fest, and, in particular, weird dreams (!) about ' maybe I shouldn't have asked to stop the medication , as maybe in effect I killed her'... etc . I think the main point I go over in my head was that the antibiotics had already been started i e it wasn't like they were withheld from the beginning and I actively (and alone) suggested they should be stopped ( however to be honest after 5 days they had had no effect...). HOWEVER when I did an internet search of scientific journals yesterday it seems that antibiotics do not always work in the case of pneumonia in the last stages of dementia* ( they don't know why) and that also, it might be the way to go as actually slipping into a coma and floating away via untreated pneumonia is not such a bad way to go for those who are on the point of death anyway. In addition, the wonderful care home chaplain said to me at the time' if the GP hadn't agreed with you, she wouldn't have signed the forms ' - true !

    So I was quite reassured.... and then..... I read this and became 100 x more so

    http://www.hospicenet.org/html/choices-pr.html

    What an amazing article ! - that sums up exactly how things were for me and makes me feel much more at peace and rational about the terrible decision I had to make about withdrawing treatment (it is written by a pastor and I am not even very religious ! ). I found it absolutely inspiring re dementia, quality of life at the end of life ,and spirituality (in the broadest non-religious sense) particularly in relation to how how there comes a point where you have to let go of your loved one and that medical technology is not the 'be all and end all'. The author makes the point that 'letting go' is not the same as 'giving up' and points out 'fatal isn't the worst outcome' (what a great phrase!) and that 'not having lived life to the full' is - or something like that !. I found it amazingly helpful -some of you may need it now and others might like to save it for when your loved one's time comes. For others it might not be appropriate. But I can't tell you how much it has just put things into perspective for me .
    Sorry for details but I am sure there are others who have been/will be in this sad situation ...This article totally summed up my recent experience and the way i justified some of the horrible decisions I had to make- I found it very calming and reassuring and hope some of you do too.

    Sorry for going on...am going to bed now and know I will sleep soundly !!

    With love, Sarah

    * Don't quote me on this - it is my understanding only. I am not medically trained !
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sarah, thank you for writing so openly and honestly. Whilst every situation is different I do think we have to look closely sometimes on why we act in a particular way.

    Having had to make the decision for the hospital not to try to rescusitate my late husband, I was haunted by this some many months later. Even though at the time our sons were with me and agreed 100%.

    My personal sorrow was some 13 years ago now, wish I had known of your link then. Thank goodness Lionel & I have had the time to discuss what we would wish to happen to us.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    A truly great article: says it all for me really.

    Thanks so much for finding and posting it.

    Jennifer
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,730
    Kent
    Dear Sarah,

    Although you made a decision you had probably always believed was the right one, the guilt took over and made you doubt yourself.

    I`m so pleased you found the Article, as it made the decision legitimate for you and eased your conscience.

    Love xx
     
  5. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi

    What a sad situation, and what a thoughtful lady you were to make the decision. I am proud to "know" you, and am pleased that you realise it was the right choice, otherwise you would now be chastising yourself for prolonging a possibly difficult and painful end. You definitely did the right thing.

    Love

    Margaret
     

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