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More hospital horrors

Discussion in 'I care for a person with dementia' started by Carmar, May 15, 2018.

  1. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    I wasn't paying attention yesterday @Carmar and am pleased to read that your mum didn't stay in hospital! But, a worrying time of course with this lump. I hope it goes OK today with her further visit to the hospital and am sending best wishes. Good that a carer from the home will be going with her as well. Am sorry to read about the extra strain on your back. The hospital staff will of course have no idea of the stresses and strains we go through (unless they themselves have been through something like this of course).

    You absolutely cannot convey to anyone who has not been through this how horrendous an experience it is, especially on the hospital front. I get a sinking feeling just thinking about that hospital multi storey car park now, never mind even going anywhere near it!
  2. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    That is an appalling indictment of what seems to be a more common occurrence in our hospitals today. Attitudes have, alas, changed. That is a major problem. Funds and staffing we know are a factor, but the whole ethic of care and care and cure in a hospital situation becomes totally and utterly meaningless, when incidents and outcomes such as your own are allowed to actually take place.

    I spent the last four weeks of my late mother's life with her, sleeping alongside her in a hospital side room and making sure that every single moment was a moment of care and value. Her dementia compounded clinical care and its application, but there was a 'dementia team' in place and they were there at all times. The 'butterfly scheme' also was also in operation. I could not fault the care which was in place at 'end-of-life'. But why should anyone need to seek out proper care in a hospital? Why should anyone strive for a level of excellence which you will probably find in a Third World country? Attitudes, alas, play a very big part in all of this. You see this generally. At one time your account would have been met with total disbelief, certainly by any Matron or Nurse of my childhood. That is not sentimental memory, but fact.

    One returns to the rather simplistic line, albeit a truthful one, in asking others - clinicians, social workers, carers, consultants - whoever. " If that was your own mother, what would you expect?" You will often get a reaction which tells all, frustrated in practice by all those factors which you have cited in your very vivid post.

    I have tremendous respect and sympathy for your current situation. Addressing dementia alone, is an enormous challenge. You do not require added anxiety or indeed blatant neglect to exacerbate what is already a constant drain on heart and mind.

    with my warmest wishes.
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    Sorry for all the issues with your mum, I do agree that we have lost trust in doctors, partly as they have, in my opinion, often treated patients as not worthy of knowing things, and this doesn't just apply to dementia patients. My deceased FIL was a GP and certainly fell into this category, he was of the opinion that patients didn't understand so what was the point in telling them, and would comment on patients he had seen asking him too many questions (this was in the 80s). I think in the past patients meekly accepted this attitude and we don't now.

    My experience of PALS isn't great, when I had issues with my mum connected with her dementia I didn't have the energy to complain, as I had so much to deal with as a result of the incorrect discharge. However I mentioned it at her next memory clinic appointment to the CPN, and she said she'd had the same with her mum, and had complained to PALS and it was a waste of time. If even the professionals have this attitude, then what hope is there for us.

    I have complained to PALS twice, re my daughter, the last time was when she was treated in A & E for pneumonia, and she was sent to xray without me (ie was told not to go with her) a 16 year old in PJs who was in danger of fainting - sometime later the HCA came back and said I needed to be with her - she was swaying in the queue, got the impression the HCA thought we were time wasters and she didn't need the wheelchair I'd used to get her into the hospital, oddly the minute the dr looked at her bloods she was moved from wheelchair to bed, as deemed not well enough to be in wheelchair. I got a comment of we will remind A & E staff to treat all patients with dignity.

    The other time I complained was a waste of time as well.
  4. Scriv

    Scriv Registered User

    Feb 2, 2018
    Be kind to yourself whilst you are fighting all this.. and choose your battles.

    There is so much to battle against for all of us on behalf of our loved ones and it is already very upsetting and exhausting. Some battles would involve so much additional strain and upset and energy with little realistic gain at the end of the day and are best left. It is not giving in, it is protecting yourself. Do take care of YOU.
  5. Carmar

    Carmar Registered User

    Feb 2, 2016
  6. Carmar

    Carmar Registered User

    Feb 2, 2016
    #26 Carmar, May 16, 2018
    Last edited: May 16, 2018
    Thank you @Hazara8. I am filled with deep respect for the love that you expressed to your own Mother in your extraordinary care of her. Your support means a lot as I have read many of your beautiful posts on TP when I am replying to others threads, only to find that you have already posted before me or do so afterwards! At the risk of repeating myself, you have the ability to put profoundly painful truths in to words that paint such a beautiful picture. From your own experience your heart manages to find the essence of the painful parts in other people's hearts and your words are like balm. I am mixing my metaphors here. You have a great gift. What a wonderful community of people TP is.
  7. Carmar

    Carmar Registered User

    Feb 2, 2016
    So sorry for your experiences @jugglingmum. The times we are all finding ourselves having to fight is those very times when we have the least energy and as I have said before, we are often frightened and anxious for those we are caring for at the same time. There is little energy left for ensuring that those professionals we place our loved ones in to care with, are doing their jobs. Or even to complain afterwards when they are not. It took all I had to make that complaint in 2016 and as there were many others doing the same, for the same reasons, it did have an effect. Whether putting a hospital under special measures helps or not though, I do not know. There are a couple of times since when I could have raised the rafters but have been approaching ill health myself and have felt unable to do so. This time is going in that same category. As @Scriv says, we have to choose our battles. Thank you Scriv and Juggling Mum for your support.
  8. Carmar

    Carmar Registered User

    Feb 2, 2016
    Thank you @Marnie63, wishing you, as always, continuing strength.
  9. Carmar

    Carmar Registered User

    Feb 2, 2016
    #29 Carmar, May 16, 2018
    Last edited: May 16, 2018
    I have been laid up all day, hobbling about with my dodgy back, worrying about my Mum being taken to the hospital this morning (without me, for the first time ever) for the scan of a lump. I had paid for 2 private wheelchair taxis from my job seekers allowance and a carer from the nursing home went with her. This afternoon, the nurse from the nursing home phones me. Mum has returned. She informs me that Mum will be going in to hospital on 31st May for an operation. I said before that decision is made, could they please tell me the results of the scan. The nurse says that they have not been given any results and the carer just came back with Mum and said she was going in for an operation to have it removed. I said to her that there is no way that I am agreeing to any operation at all until I know what the lump is and all the other information. The nurse tells me that they nothing except the date of the operation and I must phone the hospital. I phone the hospital, the same ward I spent all Monday in with Mum, explain who I am that I am unwell today and Mum went in with a carer. No-one would answer my questions. They all said that I could just be pretending to be Mum's daughter and they are unable to give out the results of the scan over the phone. The doctor even quoted the General Medical Council's regulations. I asked them to transfer the results to Mum's Nursing Home GP and that I would phone the GP and discuss it with them. They said that the GP is not allowed to discuss it with me over the phone either, only face to face. They said that the carer was given the results of Mum's scan because the doctor I was speaking to was there at the time and heard everything that was said to the carer. At this point, I can feel myself losing it inside myself. My heart starts to pound. I hang up and phone the nursing home back. I tell the nurse exactly what I have been told and that I want all information that was given to the carer during Mum's scan, including the results. The carer has gone home. They will phone her to get the information. I have heard nothing since. I have been completely distraught, with pounding heart and anxiety off the richter scale, like I was when Mum was here at home with me just a few months ago.

    Stop Press. Right in the middle of this post and my typing, Mum's new GP has phoned me. I am so pathetically grateful to her. The hospital have sent information to her and she has phoned me and given it all over the phone. So much for the hospital quoting the GMC. They don't know for certain what the lump is, but they think it may be cancerous and are going to try to remove it. If it is too embedded, they will just take a biopsy at the point of the operation. This will happen at the end of May. She does have chronic kidney disease but it is age related and at early stages. She also has had anaemia for months apparently, which has been untreated. All this was discovered at the hospital visit in March when the discharge papers were never given out.

    I have been thinking this afternoon that I would go mad. I have never known stress like my dealings with the hospital and now the nursing home getting their facts wrong today. Oh the irony of Mum going in to residential care because I was at breaking point, when it just doesn't stop even when she is in care. So sorry folks. I am so very tired and full of self-pity and my head feels like it's going to pop. What was it Scarlett O'Hara said at the end of Gone with the Wind .... tomorrow is another day!
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Oh @Carmar what a time you've had. You must be wrung out.

    I'm sorry to hear about the results of the scan. more worry for you and problems for your poor mum.

    It's not at all self-pity. You're more than entitled to feel as you do. I hope you manage to get some rest tonight.
  11. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    #31 love.dad.but.., May 16, 2018
    Last edited: May 16, 2018
    It is not self pity it is frustration and exhaustion at trying to continue to do your very best for your mum. I am pleased that after your concerns about her ckd it has been confirmed that as with my elderly dad it is nothing out of the ordinary for her age...this is not to excuse the way the hospital unacceptably communicated with you but as with me..they perhaps felt it was not particularly crucial to mention it in connection with her current problems

    I found when dad went into his NH the physical strain was lifted in terms of being able to sleep and not, particularly at night, being disturbed all the time but I was still a carer and it still took its toll emotionally and mentally visiting, monitoring and speaking up for dad.

    Do you have health poa for your mum? Is it accepted that an op taking everything into account is in her best interests and any following treatment that may be suggested?
  12. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    I'm so sorry @Carmar, what an ordeal. I'm pleased you heard from the GP though so that issue isn't 'festering' overnight. At least you know the outcome of the scan.

    I hope the conversation with the GP has eased at least some of the tension and that you can wind down a bit this evening.

    Thinking of you.
  13. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    And what a humbling response to receive from one who has clearly more than enough pressures to be going on with. I have been lucky enough to set word to paper from a very early age, a kind of gift I suppose, but a gift nevertheless and not to be confused with the fundamentals, many of which are most certainly laid at your own door as I write. In a way the words which find a place in people's hearts are really alike to the moments when you sit face-to-face with someone and can 'communicate' almost without need of dialogue. You know I am quite sure, just what I mean. You see it in the face of one who is subject to either pain, illness, or cruel treatment but who cannot express how they truly feel, owing to (in our own cases, dementia) a cognitive inability to do so.

    Your own recent misery reminds me of something in complete contrast, or let me say the antitheses of all you have so bravely set out in previous posts. That being, a 1950's example of nursing care, which I recall having read about some time ago. A tramp, who used to come into the hospital on an almost annual basis, for attention. A familiar face and a character. Then one day he is brought in rather seriously ill, ridden with lice and filthy. The nurses attended to him with dignity in place, cleaned him, made him more comfortable and gave him a crisp clean bed. He died. What was so blatantly apparent was that this was not a 'one off', but a normal and ongoing procedure. Whosoever came through the doors of that hospital, would be cared for and whenever possible, nursed and made better. No "too posh to wash" nonsense, or "I don't do vomit" and such like, which one has heard of late. None of that.
    And this is what seems to have become lost in many quarters, not all of course - we know that there is simply excellent care taking place against all odds - but where that 'attitude' prevails, then something rather disconcerting seems to infiltrate the system, which somehow becomes blind to just what life truly means, it seems unable to look at it in the same way as you would if an asteroid was plunging towards Earth, hell bent on eliminating every single one of us! That is, total and utter 'awareness'. The kind of awareness which one has when you care for someone with dementia, not here and again, but each and every moment. No gaps.
    They will probably say that such an idealistic notion cannot be a practicable one, say on the wards or elsewhere. But then, you return to that same old conundrum. If it is YOU lying there,
    (King or Queen, Butcher, baker, consultant, truck driver, teacher .... whoever) and not the one who is actually lying there (patient, elderly dementia person who cannot vocalize how they feel) but YOU. Then how do YOU behave? And in so doing, if YOU feel that need for care and comfort and for attention, then why is that exact feeling perceived as something so very different in another? In other words, you cannot pick and choose 'care'. Either it is in place or it is not. The dying person does not want to hear about funding, nor staffing levels, nor anything else - just receive 'care' and 'comfort'. And if that is too much to ask for, then we fail and we fail miserably.
  14. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    Carmar I'm so sorry, what a dreadful time you're having, thank goodness for that GP, at least you know what you may be facing.
    You must be so weary with it all and wanting to see your Mum so much.
    I just hope you can sleep and rest your back tonight, regain your strength for tomorrow.
  15. Malalie

    Malalie Registered User

    Sep 1, 2016
    I'm so sorry Carmar - I have been reading your posts but have been rendered somewhat speechless really by the treatment that your Mum and more particularly you have been receiving from your hospital.
    Thinking of you. xx
  16. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I am sorry Carmar. You and your poor mum have certainly had more than your fair share of troubles lately.

    Wishing you strength
  17. Carmar

    Carmar Registered User

    Feb 2, 2016
    Thank you all so much for your kind support. Tomorrow is the other day that has arrived today and as I have just said to someone else this morning, these are my mantras for today. Thinking of the Scarlett O'Hara quote has brought many more in to my head and I intend to hold them there:-

    Never say die
    When the going gets tough the tough get going
    What doesn't kill you makes you strong
    Come on punk ... make my day (Clint Eastwood)
    I'll be back ..... (Arnold Shwarzeneggar)
    Don't let the * grind you down (my Dad)
    This too shall pass (my Grandmother)

    Thanks for being there TP. xx
  18. Louise7

    Louise7 Registered User

    Mar 25, 2016
    Wise words Carmar, which I will need to keep in mind myself today. I hope today is a better day (as much as it can be) for you and that your back problem has eased a bit.
  19. Cazzita

    Cazzita Registered User

    May 12, 2018
    OMG, I am so appalled and horrified to read this, what a nightmare experience for you and your parent, just disgusting and unacceptable. I am new to all this so have no idea what PALS even stands for at this stage but virtual hugs to you and the very best of luck with it all. I hope things improve. You have given me an idea of how awful it can be and what to look out for too. Very best wishes C x
  20. 70smand

    70smand Registered User

    Dec 4, 2011
    Sadly I can believe what you are going through having read others posts on here and through my own experience. I don’t have power of attorney for health or finance for my dad but I used to send emails to his consultant and pass messages on to her secretary telling how things really were for my mum living with my dad and his Alzheimer’s with my mums consent. I used to say that she didn’t have to tell me anything but common sense prevailed and she used to phone me to communicate to my mum as dad was totally paranoid. Thank heavens for your mums new gp in the care home and some common sense - it fills me with hope.
    I think I will use some of your quotes and one from my favourite film, The Sound of Music ‘when the lord closes a door, somewhere he opens a window’. ( not that I am at all religious, I just love the film!).
    Wishing you strength and sanity to cope with whatever today deals you and a virtual hug to and your mum x

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