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    Hannah from our Research Team will be answering your questions on all our research efforts on Tuesday 26 March between 3-4pm.

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Advanced dementia & an operation

Discussion in 'Welcome and how to use Talking Point' started by Misstep, Nov 10, 2018.

  1. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    My Mum's had a couple of falls this last week. She's now managed to break ribs on both sides, but it also looks like she's probably broken her pelvis. I agreed with the GP that she shouldn't go to A&E as they couldn't do much & she's in a good nursing home. However, one of the nurses there is concerned about the risk of her making the injury worse and causing an internal bleed, as they can't keep her still. She can't remember she's hurt herself and gets out of bed if they don't leave her there. She's in no pain when she's still, but can't put any weight on her legs. The nurse isn't comfortable about my refusal to allow her to go to A&E & said that if there was a bleed, she'd have to have an operation. I said I felt that I would need a lot of convincing to allow that. She said that surely I should 'give her a chance'. I'm happy that I'm following my mother's wishes about this, but it would come down to what kind of life she'd have afterwards and the level of distress caused. My Mum screams in fear if she's even put in a wheelchair. She just can't cope with strange situations. Firstly, what would her chances of surviving an operation be? She's 91, with late stage 6/early stage 7 mixed dementia (she's had several small strokes this year). She'd be terrified and the last thing she'd know if she died under anaesthetic would be terror. Secondly, what would the chances be of her ever being mobile again? Her mobility has already been showing signs of serious deterioration, hence the falls. She was quite clear with me that I should not allow treatment other than to keep her comfortable if she became bed-bound & confused and specified that I should be prepared to let her die, so I feel I need to estimate her chances of what she would consider to be a reasonable quality of life, as opposed to existence. Can anyone help me to answer this?
  2. Beate

    Beate Registered User

    May 21, 2014
    Tell that nurse politely to butt out as it's nothing to do with her. You are acting on your Mum's wishes, it's the right thing to do and you have agreed it with her GP. Period.
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    I think the nurse probably knows and understands little about dementia.

    As Beate says you've agreed it with the GP.
  4. Katrine

    Katrine Registered User

    Jan 20, 2011
    What a very sad situation. I think you are considering your mother's best interests with bravery and thoughtfulness. I suppose this nurse just thinks that it's her duty to insist that your mum's poor damaged body is sent off to be mended. The reality is that going to hospital would be a nightmare. From what you say, the hospital staff would struggle to manage her and she could sustain further injuries as a result. The GP has given you the best advice. It's far better to manage her care in the nursing home where they know her and are experienced in caring for elderly people with advanced dementia.

    You shouldn't feel that you have to keep justifying your decision to the nurse. Tell her that you are following your mum's wishes and the advice of her GP. If she needs to persist with recommending surgery then she can speak to the GP and/or the nursing home management.

    Thank her for her great concern for your mum's welfare. Even if you disagree with her advice, you can acknowledge that she means well. Thank her and ask her not to keep talking about it to you. It is only making a distressing situation worse for you. You want your mum to experience the best palliative care with kindness and comfort at the end of her life.
  5. la lucia

    la lucia Registered User

    Jul 3, 2011
    Just a quick one for anyone who reads this thread.

    If a pwd needs surgery the best alternative to anaesthetic for people with dementia is an epidural which is done alongside tranquillisers.

    My mother with advanced dementia had a broken hip fixed and a replacement done like this when she was 96 (and she'd had a major stroke the year before) and she regained mobility (with a frame) with lots of exercise along the way.

    The epidural had absolutely no impact on her dementia. And the strong intravenous tranquillisers meant that she was calmly and happily oblivious.

    She's now 98 and still mobile despite having her mobility written off by hospital physiotherapy when she had aspiration pneumonia last winter... .
  6. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    It's a difficult one. Mum had a tear in her bowel which leaked into her intestines. As they took a bit of a time to discover exactly what was wrong, she had a stroke while in the hospital. Surgeons in the hospital said surgery was contraindicated but it was our decision. We made the very hard decision not to let her have an operation and had to watch her die over a period of two weeks. I've still not forgiven myself but, on the other hand, I think we made the correct decision as, because of the stroke, she would have been bed bound had she even survived the operation.
    Hips are obviously different to intestines so maybe an epidural is something to think about - although I appreciate that it is some the else to think about and complicate the thought processes.
    She is a lucky mum to have such a caring family as you.
  7. AliceA

    AliceA Registered User

    May 27, 2016
    I feel for those of us who still have capacity we should consider making our wishes for our own end of life care known. It saves the family some difficult decisions.
    There is a charity that has a comprehensive form to fill out. It is then condensed and printable. One can lodge a copy with them and print some off for GP. and family etc. One can edit at any time.
    We have done this, the GP approves. Look up My Decisions.

    I have had difficulty with nurses there is scant training for end of life care and also dementia on the ward.
    When I was in myself I had to act as interpreter, people were being treated as if they had capacity, they were questions given meal forms to fill in.
  8. Spamar

    Spamar Registered User

    Oct 5, 2013
    Epidurals were the anaesthetic of choice for everyone when I had my hip, then knee done 12/13 years ago.
  9. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    Thanks for replying. In Mum's case, I'm not sure this is possible, because she can't tolerate lignocaine, which I believe is the anaesthetic used. If it comes to it though, I'll explore this
  10. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    It sounds like your Mum had a lovely family too. Sorry you had to go through this. I think where I'm coming to is to make the same kind of decision you did, based on what I know of her wishes. Sometimes, the most loving gift we can give them is to try to ensure they have a good death, rather than preserve existence at any cost to them
  11. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    I'm lucky, in that Mum always talked to me about how she wanted me to handle things at this stage of life, and made sure I have Power of Attorney so that I can take the decisions she'd want. It's kind of hard sometimes when it comes to the specifics though
  12. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    Thank you. It's a blessing to be able to chat to other people with similar issues
  13. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    Thank you. I think it can be hard for less experienced people to understand that there are many things worse than death
  14. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    If the nurse questions your decision again as others have said just repeat 'the GP and I are in agreement'. I would imagine the chances of mobility post op are dependent on being able to follow instructions with physio and repeat exercises. .not very likely I would think in advanced dementia. In dad's NH when he was there...the nurses told me that those who break hips are usually immobile in terms of weight bearing as they cannot effectively undertake the necessary physio exercises.
  15. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    We are having to make a similar decision for mum, albeit on a more minor level. She has some sun damage on her legs from years of competitive cycling. The biopsy has shown that none of them are currently cancerous but there is a slight possibility that skin cancer might develop in the future. Mum is 86 next week and I reckon is headings towards mid stage Alzheimers although she still lives alone with our support. The dermatologist referred us to a plastic surgeon as to remove the worst one of the spots ( which cause her no discomfort) would require a skin graft and he has left it up to mum/us to decide if we want to go ahead. Contraindications are that it would need to be done under a general anaesthetic and that the skin graft might fail due to fragile skin, Mum would then need dressings changing daily which district nurses would need to do as mum would not remember
    ( and uses kitchen towel and sellotape as bandages if required!). Mum has been offered regular visits to the hospital for monitoring instead of having the procedure - but it is her decision, although she would agree with whatever we suggested.

    My sister and I do not feel that mum should go ahead, there is currently no skin cancer, not even pre cancerous cells, so why put her through the after care issues? At 86? Mum is not really capable of making a decision for herself and changes her mind every time we discuss it! I am worried about the effects of the anaesthetic on her dementia having done some research.

    It's a dilemma trying to make decisions on behalf of someone else isn't it?

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