1. lou lou

    lou lou Registered User

    Nov 9, 2005
    46
    London
    Mum has just been discharged back to her care home from the hospital.

    It's been a strange Christmas. Normally I would have my mum and mother in Law at mine but MinL died suddenly this summer and mum was ill in hospital.I can't say there wasn't some sense of relief as mum had been increasingly hard work needing to have everything done for her and none of my brothers had ever offered to have her at Christmas.

    On the 14th of December we were told she had days maybe hours to live as she was in kidney failure but true to form she has pulled through ( she always used to say "it's the creaky gate that stands the longest").

    I have just composed a long letter of complaint about mum's care in hospital running to 4 pages and am spurred on to send it by hearing how others have struggled to get acceptable levels of care. Right from the beginnining they had not wanted to admit my mum then after a few days of intravenous fluids and antibiotics she had recovered somewhat they again wanted to discharge her when she clearly wasn't eating or drinking, they were sending her home to die. Having sat with her most of the day on Sunday I went into work on the monday and picked up a message on my mobile from someone unnamed saying they were discharging her as she was now eating and drinking.....!. I knew for a fact that barely a few sips of water and tea had passed her lips the previous day. When I demanded to know what she had eaten that morning one of the nurses told me she had had a teaspoon of porridge. I had to go to the hospital demand to see the consultant and put my mum's case to him in person. I am too tired to stay so angry.

    I don't suppose they'll take my complaint seriously, they'll make all the right soothing noises but I am fearful that nothing will change. I've tried to be very concrete about my complaints, lack of information, no adequate assessments, poor or non existent charts , totally innappropriate care plan ( which wasn't carried out anyway) but essentially my upset is at seeing my mother treated as a nuisance not worthy of timely medical intervention and when I challenged a junior doctor about sending her back to starve and dehydrate to death she told me my mother wouldn't starve as she was choosing not to eat but she might die of malnutrition......sorry a disticntion without a difference to me.

    My mother had 5 children between us we must pay more than 6 figures in taxes and national insurance ,none of us has ever been a burden on the state. I always believed that the NHS would provide quality care in a medical emergency, now I'm just becoming cynical ( and I work for the NHS) but I damn well will make a formal complaint.

    Good news is that mum is taking fluids better and is eating miniscule amounts so seems out of the danger zone. Only time will tell I suppose.

    A happy new year to everyone out there

    Lou Lou
     
  2. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Lou Lou

    Good luck with your complaint and good for you, tired as you must be.

    The line that made me most angry was saying you were told your Mum was "choosing not to eat"!!

    Surely the nature of the disease means that AD sufferers can't make decisions that stay with them for more than a few minutes at a time.

    My own Mum is hardly eating at the moment, but it is not a conscious choice on her part, she simply has no idea what to do with food presented to her and when she has had a few mouthfuls, under guidance and encouragement, no longer feels hungry, so won't eat any more. No-ones fault or choice, just how the AD has her behaving at the moment.


    I would like to know how much, if any, teaching time is given to nurses and doctors to educate them about caring for people suffering from AD or any other form of dementia. However much there may be it is clearly nowhere near enough, or we wouldn't have to fight so hard to get our loved ones even a basic standard of care.

    Let's hope someone listens to you and others who follow your Mum will be treated an great deal better than she has been.

    Kathleen
     

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