Diagnostic tests and Medical treatments

Discussion in 'I care for a person with dementia' started by cold feet, Jan 8, 2015.

  1. cold feet

    cold feet Registered User

    Nov 19, 2010
    22
    Essex
    Hello, I haven't been on this forum for a very long time. I am hoping someone on here can help me with some information/advice, but I need to start with some background so sorry for the long story!

    Mum was diagnosed with dementia some 7 or so years a go, and after a very traumatic period when even with carers 4 times a day she was so agitated that she could not be left alone for even a few minutes without panicking. 5 years ago last June we arranged for her to move to a residential care home where she has been very well looked after - it feels like the staff treat her like a family member. Over this time she has gradually deteriorated physically, but mentally she seems to hold up well (she has no short term memory at all, but her old memories are still there and she knows us all and still joined in family events until very recently).

    Mum will be 93 next month, and over the last couple of months she has gone downhill fast after a chest infection. It was while diagnosing this that the GP noticed a hear murmer and a blood test showed high levels of BNP which apparently indicates heart failure. Gp referred her for an echo cArdiogram, for which she has to attend our local hospital.

    My question is, what will an ECG show? And if there is a murmer, if there is heart failure, how will knowing that help? I kind of feel that the whole trauma of a trip to hospital is not worth putting her through. Mum has recorded her preferred priorities for health, which states she does not want any treatments that are invasive or to extend life (such as PEG feeding) and to avoid hospital admissions unless for injury. The home agree witH the approach and are happy for her to remain in their care. I am very close to my Mum, and she has been happy with her life, but not afraid to go. I have LPA for health and welfare.

    I'm not even sure what I am asking - I guess I would like to say don't bother with the ECG because we would prefer to decline any treatment for a failing heart. But I feel so guilty just saying that. All I want is for Mum to be comfortable, and allowed to go at some point when her body is ready (her mind is already there - the nature of her dementia means we are able to discuss these things fully, even though 10 minutes later she does not recall our discussion!). I just feel so sad for her as she fades away, and don't want to prolong her suffering. I'm pretty sure Mum will be with us for a while yet, and I'm thankful for that. But looking ahead I can see this could come up more and more, and am struggling to know how to approach the issue with medical professionals.

    Sorry this is so long - I know there aren't any answers but I would be interested to hear from others who have been here, and how you have dealt with these sorts of issues over diagnosis and treatment.

    Many thanks
     
  2. Dunkers58

    Dunkers58 Registered User

    Nov 9, 2013
    65
    Hampshire
    Hi coldfeet

    I don't have experience of this but have thought what would I do if this were the situation for my mum.
    I think you have almost answered your own question,. You know what your Mum's views would be and as you have said it would be unlikely you or she would want any invasive treatment, therefore is it worth putting her through the stress of going to the hospital. If indeed she does have some heart failure... which I am sure is not uncommon in a 93 year old any symptoms I would suspect could be managed with medication to keep Her comfortable.
    Please do not feel guilty for wanting to keep your Mum comfortable and minimising any extra stress for her.
    best wishes.
     
  3. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    #3 Witzend, Jan 8, 2015
    Last edited: Jan 8, 2015
    My mother is 96 with advanced dementia. I can only say that I and my 3 siblings would all say an emphatic 'no' and we would not feel remotely bad about it. Hospital is a terrible place for anyone with dementia, let alone advanced, when they cannot understand what is going on, or why. It has been quite distressing enough for our mother at A & E, several times after falls.

    Our wish for her is that as far as possible Nature should be allowed to take its course, in familiar surroundings, where she would be kept as comfortable as possible. I would hate to think of her in a strange, noisy place, being poked about by strangers. I dread another broken hip - she already had one at 91 - which would make admission to hospital inevitable.
     
  4. Perfectdaughter

    Perfectdaughter Registered User

    Sep 25, 2014
    29
    London
    Hi Coldfeet
    I'm struggling with the same thoughts for my father - do we go ahead with hospital checkups for bladder/kidney/prostate trouble when, at 91, he finds the visits and the procedures quite traumatic? There comes a point when one wonders if it is worth it and I would hate him to have the unpeaceful death in hospital my mother suffered 5 years ago because noone addressed the subject. My father has told me and the nurse at the memory clinic that he 'doesn't want to live with tubes' in him. I have booked an appointment for us to see his GP to talk it over, including 'do not resuscitate', and am hoping that this will be recorded on his file.
    I hope others can give you more guidance than I have. I just wanted you to know you're not on your own on this one!
     
  5. cold feet

    cold feet Registered User

    Nov 19, 2010
    22
    Essex
    Thank you for the helpful replies. When it comes to any interventions we are quite clear that would be avoided at all costs. Like you Witzend, our experience of hospital has been awful. Mum has been admitted twice with broken hips through falls, and I dread something similar. Ironically, now she is less mobile, she is less at risk.

    It is the outpatient visit for diagnostics that has troubled me. While she was fit enough, hospital visits would offer her something of a distraction from the daily routine. But now they are much more difficult, and we would prefer any outings to be for something more pleasant. Like Perfectdaughter, I wonder if it is worth it.

    putting it down like this is helpful - just sharing the problem has made me feel I am not alone in this.
     
  6. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    If you are still unsure, perhaps have a chat with her GP, where you make your feelings clear about how a hospital visit would affect her, and the knowledge that, whatever the results, then no intervention would be considered. If her GP knows her well, and is well versed in dementia, then maybe that will help clarify things.

    I often find that if my Mum's GP is in agreement with my feelings when it comes to making life easier for Mum, then it takes some of the feelings of guilt away.

    Good luck, whatever you decide.
     
  7. cold feet

    cold feet Registered User

    Nov 19, 2010
    22
    Essex
    Thank you piph. Your comment has made me realise that I have fallen in to communicating with the GP through the care home manager. Time For a face to face meeting I think.
    Thanks again.
     
  8. cold feet

    cold feet Registered User

    Nov 19, 2010
    22
    Essex
    I'm just so sad how quickly things have changed for Mum. I had a chat with Mum's GP who was in full agreement about not putting Mum through the stress of diagnostics, and making sure she is comfortable with medication for water retention and breathlessness. Her view is Mum's heart is failing (no surprise there) and that it would be kindest to let things progress without intervention. But 2 weeks later and Mum has deteriorated so quickly. most days she cannot even sit up, let alone get out of bed she gets so exhausted. If she does get up it takes so much out of her she has to lay down again right away (she still says she wants too, and even now does not realise she is unwell - she thinks she is still the spring chicken she has always been, even In To her 90s). She is eating and drinking very small amounts.

    She is so well looked after at her CH. The staff are lovely, and Mum is such a popular lady, she is always cheerful, kind and still puts all other needs ahead of her own. Seeing her go down hill like this makes me so sad. But then I find myself wishing it could be over quickly so she suffers no more. Then of course I feel guilty for thinking like that.

    And of course we have no idea how long this will last. No real point to my post, but it does help knowing that others have gone through the same.
     
  9. jeany123

    jeany123 Registered User

    Mar 24, 2012
    19,049
    Durham
    I am so sorry to hear about your mum, she sounds like a lovely lady, it is such a shame, I will be thinking of you both xxx
     
  10. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    Thank you for posting this update, cold feet.
    I believe you have done the right thing for your mum. She is in familiar surroundings and cared for by people who know her.
    Just keep going, and know you have done your best for her.
     
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    It must be so hard for you to witness. But I hope it is some comfort that she is in familiar surroundings, being cared for so well by people who know and value her.
     
  12. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Glad you managed to have a talk with your Mum's GP. It is sad how quickly they deteriorate, but I think the kindest thing to do is to let nature take it's course now, as the GP advised. Please don't feel guilty about wanting it all to be over - I feel the same, and my Mum is nowhere near that stage yet, but, selfishly, I know things are only going to get worse and I'll have to cope with them as they do!
     
  13. cold feet

    cold feet Registered User

    Nov 19, 2010
    22
    Essex
    Thank you all for your kind comments. Just been to see Mum, and today she could barely lift her head from the pillow. Not distressed or in pain, and so pleased to see me. She's sleeping most of the time.
     
  14. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    How lovely that she still knows you and is pleased to see you. x
     

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