1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Flake

    Flake Registered User

    Mar 9, 2015
    222
    Spoke to my Mums GP. She had not had the results from the Memory Clinic regarding my Mums CT scan. I explained that she had the diagnosis of VasD and Alzheimers. I mentioned that the Consultant had said that it would be possible that TIAs followed by a Stroke would end my Mums life. The GP then said what a blessing it would be for that to happen as end of life dementia is a terrible thing. Needles to say I was slightly shocked and am now almost dreading what I may find when I go into my Mums and am thankful when she is well. I think I was hoping for a different conversation than that !
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Perhaps not wrong, but incredibly insensitive. That doctor gets a fail in bedside or chairside manners. There are times when a doctor needs to be blunt, but this wasn't one of them. I suppose it's possible she suffers from foot in mouth disease, and it just sort of fell out, particularly if she had dealt with a person with end-stage recently. But it shouldn't have.

    Personally, I would let it sit for a while (so that you can be calm about it), and then write a letter saying that while what she said might well be true (that end stage dementia can be awful) you didn't appreciate the comment or the way it was put at this early stage of your mother's journey. Perhaps that might make her more sensitive with another person. I think sometimes doctors are not called on crass statements like this and they should be.
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,658
    North West
    I think the GP is speaking out of turn personally. It's the same old sweeping generalisation. There are plenty of examples on TP where the end of life has been truly awful for the PWD and their loved ones. But there are also examples of people who have slipped away relatively peacefully. Similarly with strokes, there can be very different scenarios and no-one could be sure that a stroke would be a good way to go.

    I want to share a little information about my mum's journey to show that some people with dementia do remain contented in the 'end of life' stage and die peacefully.

    The photo below, which I've posted before, was taken just after my mum's 90th birthday.

    She died 3 months later (AD on the death certificate). At that point she had been bed-ridden for getting on for 2 years. We saw her a few days before she died. She was still smiling. Her later years were spent in a Methodist Home for the Aged. Although they didn't normally look after people with advanced dementia, they were happy for her to see out her days in their care because she had contributed so much, always helping new residents to settle in, for example. They looked after her very well. She died peacefully.

    She was, comparatively, lucky. So were we.

    Now she didn't have Vas Dem but the doctor seems to have generalised about all dementia deaths. The truth is that no-one can accurately forecast exactly how any individual will end their life.
     

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  4. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Stanley, what a beautiful picture of your Mum. Thank you for sharing it with us.

    Flake, I'm appalled at your Mum's GP. Who is she to say what would be a blessing for people she doesn't even know? And this is someone who is supposed to take care of vulnerable people?!

    The thing is, we all think it from time to time when we see the people we love deteriorating and slipping away from us. And I've said it a few times too, to my close friends. They are incredibly supportive and don't judge me for it, but they wouldn't presume to say it themselves. You don't say it to someone else who is going through it, even if you've been or are going through the exact same thing, because it's not your place to do so.
     
  5. Flake

    Flake Registered User

    Mar 9, 2015
    222
    Stanley, the picture is lovely.
    As for my Mum, the GP and also the comments (similar) from the Consultant I have decided just to go with the flow. What will be will be and I will do my best for my Mum. Yes everyone is different and this horrible disease takes its path is different ways. So yes,whilst I am not happy with the comments, I have decided not to dwell on it too much. I am taking it as a warning of what may happen and to be aware, even if it was tactless :(
     
  6. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    It was most certainly tactless, but I do know what the doctor means. Honestly, if you could see my poor old mother, nearly 97 with advanced dementia, you would not want yours to get like that. She has had Alzheimer's since her early 80s. She is incontinent, she knows none of her family, she responds to virtually nothing, her speech, what very little there is, is completely unintelligible, and her eyes are 'dead'. She has lost every shred of dignity and has zero quality of life. It is very painful to witness, especially when you know how horrified the person's former self would have been if they could have seen how they'd end up.
     
  7. MLM

    MLM Registered User

    Jun 17, 2014
    130
    Manchester
    I'm a newly qualified social worker and during my training I once lost sight of the impact of assisting a client to change residential homes because it was a relatively straightforward task to support someone through than the usual day to day issues I had to manage. It was easy to become engrossed in my role in a very short period of time and lose touch with what that "easy" bit of work for me actually felt like for the client and her family. The funny thing is they were extremely grateful, sent me a card and sang my praises to my manager at how attentive I was, and I felt it was misplaced gratitude because in reality I had missed something very important in my line of work - the human feelings behind actions and events.

    Anyway, whenever I hear something like this I hear a story about a professional who has forgotten to take the time to step back and think "what would this mean to me if it was happening in my life?" and I think that's not necessarily just a mistake or someone being a bad professional, but it is actually someone who may becoming desensitised or using their frank professional head as a defence mechanism to protect against the hugely emotional tasks we are faced with. Of course, if that GP hadn't noticed her crassness following the conversation then that would be a concern, but hopefully afterwards they thought through their choice of words and felt upset for you at the various outcomes that you are potentially facing for your relative. I know I felt bad afterwards even though my client was oblivious to my lapse in self-awareness of the impact of my involvement with herself and her family.


    Sent from my iPhone using Talking Point
     
  8. Flake

    Flake Registered User

    Mar 9, 2015
    222
    That is so very sad and I do think the GP was trying in her tactless way to warn of what may happen and that I may avoid what you are going through now. It is a very difficult conversation to have whichever way you look at it. Dementia is a horrible disease and each day is throws another challenge. Unfortunately time cannot be turned back :(
     
  9. Flake

    Flake Registered User

    Mar 9, 2015
    222
    Thank you for your message. I think and am hoping the GP was trying to be helpful and yes I do think professionals become desensitised. In a way I am thankful that she said what she did as I can look out for any early signs of TIAs. We have an appointment tomorrow for an ECG so I may get more information on my Mums heart condition. Dont feel bad about what you call your lapse, Im sure your intentions at the time were in the right place. The truth of the matter is that Dementia cannot be glossed over, it is a cruel disease and I can try and be prepared for whatever is thrown in my path.
     
  10. MLM

    MLM Registered User

    Jun 17, 2014
    130
    Manchester
    #10 MLM, May 29, 2015
    Last edited: May 29, 2015
    I think in short the "professionals" lose sight of emotions because we are often trying to not be emotional as part of the task of being professional. The fact of your situation, and indeed all of our individual situations, is that we hope for a long life and a peaceful, painless death.


    Sent from my iPhone using Talking Point
     

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