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Discussion in 'After dementia — dealing with loss' started by painterman48, Mar 5, 2015.

  1. painterman48

    painterman48 Registered User

    Jan 23, 2015
    2
    This is a post that was added some days ago in a thread created by someone else?
    What that person was saying kind of struck a chord with me in relation to my own, and my family's experience.
    Maybe I was expecting some response in there I'm not sure, however what I said appears to have got lost within the original message so I've decided to upload as a new post.
    If you read the following, the conclusion may arise that it's a savage indictment towards the people who were in a position to tend for my mother, but alas did very little for her.

    It's almost 6 months now since my darling mother passed away. There isn't a day goes by when I don't shed tears over her loss, I miss her dreadfully.


    My mother had been suffering with all the classic symptoms of dementia for 3 or 4 years, most of the descriptions the OP includes in the list above, being exactly the same in her case.
    There was never an official diagnosis in the early stages, it was difficult to convince mam to see someone due to her having developed a great fear and mistrust of the health service. Whether or not that had something to do with the condition that had cruelly beset her I don't know, but that mistrust is now something that I too, have a major problem with!
    From the outset, dad decided it was his duty to care for my mam and did so with tremendous effort.
    Although both my parents were the same age (85), he did a sterling job, helped by myself although during the daytime I went out to work.
    I've always lived at home so wanted to be on hand as much as possible, even contemplating leaving my job but dad wouldn't hear of it.
    I don't know where he found the strength sometimes, yet she was the love of his life and he would have done absolutely anything for her.

    Four years ago my mam had a scan due to various health problems she was having. As a result it was discovered that she had a 'mark' (as described) on one of her lungs? Also a very small tumour was found (although very nearly missed) underneath one of her breasts.
    She underwent a month long treatment of radiotherapy for the lung problem and along with that, was prescribed medication (in tablet form) for the tumour.
    The doctors, (or whoever) were pretty confident at the time, that all would be well.
    We took mam for the radiotherapy treatment every day throughout February 2011, sadly she wasn't quite sure what was going on and she used to say 'they don't do anything, just lay me on a bed for a few minutes and that's it.'

    For the next 3+ years, we took mam to regular consultations, the feedback from the hospital always being positive. She missed one or two visits later on as she felt unwell and just wasn't up to going. We were never going to take her against her will, so we always contacted the hospital to inform them we couldn't get there. There was never a problem at their end.
    On the various visits, dad always went into the consulting room along with mam and I asked him if they ever did anything...blood tests, x-rays, examinations, scans or whatever? His reply was that none of those things ever took place, all the consultant used to say to mam was that she was doing ok and they were pleased with progress.
    It's beyond belief that anyone could diagnose someone's state of health simply by chatting with them alone?

    Going back to the Dementia mam was clearly suffering from.
    The situation seemed to be getting worse. She often didn't recognise my dad, also forgetting who I was on a couple of occasions and spoke about visiting her mam and sister who she hadn't seen or spoken to for several days? Her mother actually died in the mid 1950's, my aunt passed away in 1998. There were many instances like that, albeit very numerous to mention here.

    On August 22nd last year, mam had to go into hospital. A doctor visited our home a couple of days previously, becoming very worried about her state of health. Apparently
    her heart rate was at a dangerous level and she needed urgent attention. Mam was going berserk at the thought of going, there was even talk of her maybe needing to be
    sectioned and taken against her will, as the ambulance crew etc. were extremely worried, repeatedly saying she needed to go asap.
    The experience of seeing my mother react in the way she did, will stay with me forever.
    It was horrendous to witness the distress and anxiety she was suffering from. What were we to do when these so called experts were telling us it was imperative and a priority they got her into hospital?
    I'll never forget the journey travelling with mam in the back of the ambulance, she was screaming at me to take her back home as there was nothing wrong with her.
    I often wonder what the situation would have been had I done that.
    Once we arrived at the hospital, mam did calm down after they took her vitals but every time a member of staff approached/touched her, she went off in exactly the same way. It was so out of character for her and extremely disturbing to see her going through it, dad and myself couldn't believe it.

    Mam was taken onto an acute assessment ward where she remained until Monday 25th (bank holiday). They didn't seem to have much of a clue what was going on, there was no urgency with them and did very little to help her. It was mentioned that she could possibly have a kidney injury and nothing else, although I do appreciate that is quite a serious problem in itself.
    She was then moved to another hospital and put on a 'medical elderly ward'.
    Every moment we were allowed to visit, various members of my family were there.
    I myself was quite disturbed by the attitude and overall mood of the staff in the place. The reaction I was getting in answer to my questions was continuously unprofessional and at times quite rude. When I explained that dad and I were finding it difficult to get mam to eat, the answer I got from a SRN was 'well if you can't get her to eat, what makes you think we can, we don't force feed people you know'
    I was quite disgusted with that remark, we were in a hospital after all. I'm no doctor by any stretch but thought, surely there has to be something they can do?
    I became very worried about my mother being in there! I wanted to report the nurse but my older brother talked me out of it.
    I got sick of being told my mother was 'just another patient on a list'

    Again, each time someone tended to mam, she reacted in a very volatile, stressful manner. She was absolutely terrified. They moved her into a room on her own , I believe due to the other patients becoming disturbed by her distress?
    Although it was obvious mam was very sick, a physiotherapist came into her room on the second morning she was in there to try and get her to take a few steps! Unbelievable and as I saw it, a way of seeing if she was fit enough to go home.

    The staff at the hospital 'had' (so they said) to tend to mam every 3 hours, turning her and checking to see if she was clean. It was very clear she was getting worse and I believe all this stress and anxiety was having a terrible effect on her state of health.
    Who was I to question their supposedly tried and tested techniques?
    It was also clear she was being sedated to keep her quiet, there was very little movement and coherence from her on many of our visits.
    She wasn't eating much at all and taking fluids by small sips only. The hospital didn't appear to be doing anything for her or giving her any medication at all.

    After almost a fortnight, the hospital decided to give mam a scan. They told us it was to either confirm or deny whether dementia was present?
    It turned out it was actually the case but something far more sinister was going on too.
    It was discovered that cancer cells (metastases, we were informed) had developed in and around my mothers brain, the prognosis being that it was aggressive and there was nothing that could be done for her!
    The horrendous result being that we were now going to lose someone very precious to us all. The only thing they could offer my mother was 'end of life' care!
    It was unreal how the room my mother was in, suddenly became very stripped down
    almost immediately!

    Social services stepped in, it was their role to now organise something as we decided the only place for my mother, was for her to come back home where she belonged.
    She never wanted to leave home in the first place but there seemed to be no other option at the time.

    Mam came back home to us on 10th September, she very tragically passed away just 2 days later.
    Nearly 6 months since that day, I am still grief stricken by the loss of my mother, she was so special to me. I'll never be able to adjust to her not being here, the pain will never go.
    I worry constantly about my dad, how he is dealing with all this is beyond me quite frankly.
    Over 3 years he had tended to my mother's every need as she was suffering/struggling in so many ways.

    In closing, although my mother was told by so called experts that she was doing ok, it turns out she wasn't!
    The treatment she received for the problems she had, simply did nothing at all and she became the victim of a disease that had taken a terrifying hold on her, yet apparently was allegedly being kept in check.
    What the doctors/consultants were telling her was actually very wrong and they failed!

    Something that my father found very disturbing and upset him greatly, was the reason given for my mother's passing on her death certificate. It simply said 'old age' with a secondary description being lung cancer and breast cancer! For me, it just seemed like a kop out!

    My mother may have been 85 but despite her declining health, her slowly failing mobility and obvious difficulties, she was always as strong as an ox.
    After being carried out of her home literally fighting like a lion, to witness her returning like a fragile lamb was horrifying.
    Although my mother was discharged from hospital, I'm convinced her life ended due to her being in there!

    For me, general hospitals are not fit for purpose when it comes to taking in dementia sufferers. At best the staff appear clueless.
    Maybe it's a little harsh for me to say they don't care, but in my mothers case, they simply didn't care enough!
     
  2. Adcat

    Adcat Registered User

    Jun 15, 2014
    289
    London
    Hi Painterman48,
    I am so sorry to read your very distressing experience.
    I do hope you are receiving or are open to receiving support from a counsellor. IN my experience, it's really important to be able to discuss these horrible experiences so that you can be healthy and continue to support your dad.
    Take care
     
  3. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    I had something similar with my mother who died 18 months ago. Both myself and my brother told staff that she had pain, was urinating blood and had deteriorated rapidly. We were constantly told by nurses that she had not complained of pain, not passing blood and that the occupational therapist had assessed her as capable of looking after herself. A doctor came into a meeting we had with the hospital social worker as we were arguing that we could not cope with her coming home in this condition and that she could not look after herself. The doctor told us she had been constipated, nothing else wrong and they were discharging her.

    The day she was due to be discharged she did complain of pain and was sent for a scan. That afternoon a urologist (the first consultant we had seen during the three weeks she was on the ward) called my brother and myself into a room and told us mum had a large cancer of the kidneys and was dying!!

    We then did get help to care for her at home which we had been asking for and she died two months later.

    It seems to me that elderly people are treated as 3rd class citizens in our hospitals and that we caring relatives are still totally ignored by nurses and doctors. I'm reaching the age where I too, just like your dear mother, dread going into hospital because I will not get proper investigation and care and, no matter how caring my relatives are, they will be ignored or treated with contempt.

    I have coped with this by pushing it as far away from my thoughts as possible and trying only to think of the good times with my mother. I hope you can do the same.

    Best wishes TinaT
     

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