1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Ruthy

    Ruthy Registered User

    Dec 26, 2003
    Hi everyone. I posted on this forum last year. My last topic was "moving forward" and I was so very grateful for all the support given to me by the wonderful people on this list.
    My mother was diagnosed 24th dec 2003 and that Christmas and months afterwards were a nightmare. I wrote letters here when I thought I was going under.
    I know that , compared to the experiences of other carers,
    mine was not so bad, but it seemed that way at the time. I was lucky enough to get mum into a residential home last march, and the medication Mum is on has controlled her condition well. due to human error, in June Mum's Thyroxine was discontinued without my knowledge and by October she was immobile and looked like a zombie. The home could not cope with the level of care she needed and I had to quickly find a nursing home for her.
    This was when I discovered the medication foul-up, quite by chance and by being nosey. She improved enormously but the setback was not completely reversible and I have joined the ranks of the 'Nursing home user'.
    In my limited experience of private homes, and by talking to other carers, in a short time I have discovered a network of inefficient care, too many staff who just do not care and a brick wall of indifference which is the management. I was a nurse for many years and I just cannot believe that the care assistants receive so little training. The staff are mixed. with may who do know what to do, but too many who do not.
    Mum is now very ill and has been on Morphine for a few days. It is very difficult to handle. She is now mostly comfortable and more free from the pain of her pressure sore , which is what I wanted for her, but I cant reach her. That is my problem and I just have to deal with it.
    A few people have written about the multiple losses as a parent or loved one goes through several stages of the disease and I think I have reached the penultimate loss of my mother. I am feeling very weird.. I can’t really try to come to terms with what is going on because of the need to be with my mother a lot of the time, first of all because I want to be there, and secondly to keep the staff on their toes and doing things correctly. I feel desperately sorry for the residents who do not have relatives looking after their well being. Thank you very much for listening and if I can help anyone using the benefit of my experiences, I will be very glad to do so.
  2. barraf

    barraf Registered User

    Mar 27, 2004
    Dear Ruth

    I am so sorry to hear about your mum.

    You do at least seem to be keeping on top of the home, and doing your best with visiting etc.

    That is about all that any of us can do, this horrible disease take it's toll on the carers just as much, or more than on the person suffering with it.

    Try to take heart from the fact that you are doing all you can to the best of your ability, no one can do more.

    Cheers Barraf
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Ruthie, thank you for posting on TP again. I know how hard it is to deal with the situation you now find yourself in. Especially as having done nursing yourself. You are so aware of what is happening, or the lack of, so to speak aren't you? I am sure you will strive to do your best as you always have done for your Mum, to get her all she needs as well as giving her your continuing love and support. I'm so sorry to hear how things have now developed. As you yourself know only too well, the pressure sore needs continued medical attention to heal successfully, as does her fluid and solids intake to ensure that her body has strength to fight with. I wish you every success. It will not be an easy task for you. please continue to post so we can support you through this ordeal. You must be spitting back fire continually. Trouble is, slowly, slowly, gently, gently, is the only way to gain the help you need isn't it? So frustrating, but so vital in the long term for your Mum. I sincerely hope you can win over the staff at your Mum's nursing home, for your Mum's sake and for all other dementia sufferers everywhere .It is only by family carers being vigilant that things will change for the better. With love, She. XX
  4. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Dear Ruthy

    I am in the process of losing my mother. She is extremely ill in hospital and has been there over 2 months. They are desperate to get her out even though it would not be possible for her to be anywhere else. ( I have been told in confidence this is all to do with the end of the financial year approaching) They say she needs 24 hr supervision as she doesn't sleep and shouts a lot, and that sometimes she needs 4 nurses to assist her, they told me I could no longer do it alone at home. They have told me I must try to find a nursing home incase we get a "window" in her infection when she can be moved. I went through a ward meeting last week, it was ridiculous, as mum's needs can't even be assessed at the moment, and no one could tell me how she might come out of this either mentally or physically. The consultant even said she wasn't fit to go anywhere but said to go ahead with the ward meeting anyway. It was another ordeal my father and I could have done without.

    I am to go to look at 2 nursing homes today, I will have to go without any other member of my family as they are a useless lot and I am trying to save my father from the ordeal as he is already well into the grieving process. Mum keeps crying and asking us not to leave her in moments when she briefly appears through the infection. They have put her on risperidone which I really hated the idea of, but at last she is getting some sleep. The only reason I'm going to look at homes is because that ward social worker will be asking first thing if I have done anything, she even followed me to the toilet last week 1 day after the meeting when I said I needed time to think and decide what to do! A kind nurse whispered in confidence to me, "don't let them push you"

    This is a nightmare, and for all the big useless faces that sat at that meeting making notes (probably their shopping lists) there is no support at all out there for carers. I too am horrified of what it must be like for those whom have no family to fight their corner. I feel so deeply for you Ruthy, I know exactly what you're going through, I have the odd moment when mum comes through and desperatley tells dad and I she loves us. She came out of it for a moment the other day and said to dad, "I am your wife, but I'm no good to you. I love you"
    It nearly broke us both in two. I don't want her to go to a nursing home, I want to scoop her up in my arms and take her home. Sorry for rambling on, I am in turmoil and my heart feels like it's about to blow up and kill me. I'm sure yours does too.

    Thinking of you.
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Ruthy and Magic

    There seems to be a constant theme of hospitals either making situations worse, and/or not being able to cope with patients [I guess they spend so much time having to cope with their own bean counters these days that they have often lost the whole point of why they are there], and in pressurising spouses and families to get the troublesome patients off their hands, whether or not they could possibly cope.

    As to finding a window in an infection, that sounds much like they did with Jan - find a moment to ship her out, then backfill the bed, so they can say "no space at the inn".
  6. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Ruthie and Magic.
    it made me so sad to read your postings,I dread thr future but know that I going down the same road as you.
    When will more care be given to AD sufferers?When will hospitals learn to care properly for AD patients?.
    I often feel like giving up the fight but I won't, carry on for those that come after.
    Thinking of you
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear all, this the only thing we can do, try to use our experiences to help each other and those to follow. Thinking of you Magic and Ruthie, and you too Norm, Brucie and Barraf. In fact all of our fellow travellers. We all have a part to play in this, to bring about change for the good of dementia sufferers, their families and carers. With love, She. XX
  8. connie

    connie Registered User

    Mar 7, 2004
    Dear Ruthie and Majic, my heart goes out to you. What can I say to be of comfort, only that you are not alone in our thoughts. My heart goes out to you both at this time. Connie
  9. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thanks for all your kind words. When I went to the nursing homes today they were both closed to visitors because of a vomitting/ pooh bug. I must admit I had a smug smile. At least I have something to say to that SW tomorrow and I was saved for another day from the magical mystery tour of care homes.

    I look at it that it was a sign, that I was in the wrong place at the wrong time, it wasn't my wish to be there anyway, just more pain. This dementia road takes it's own course with it's own twists, we are powerless to stop what is to be, but what I can tell you all out there whom haven't come to this stage is, you will get through. Something will spur you on, you will find the courage to carry on, it's what carers and human beings do. It will hurt like hell but I am so proud and very humbled by the fact that through all her infection and sedation and dementia, my mother is still desperate to let dad and I know how much she loves us, that is something of which she is always certain, and I find that incredible.

    I wouldn't trade my wee mummy for anyone else in this world dementia and all, some people never get to know the suffering we have had in their whole lifetimes and some will never ever experience the wonderful power of love that has touched me through all of this suffering. I hear a lot about standard of life speeches made in the hospital blah blah, it's not your mother mate I think to myself, what do you know or care?
    Maybe the doctor's don't think her standard of life is up to much but her standard of love is 5 star and bloody dementia can't seem to penetrate that.
  10. Chris

    Chris Registered User

    May 20, 2003

    So sorry to read what a hard time you are having. Hope thiings ease soon.

    On a very down to earth practical note - what we can all do is make sure all & sundry are aware of what is happening.

    Writing special letter takes a huge amount of time & when you are caring you just dont have that time. But with this great Forum what we can do perhpas - is print off our own messages & those from others - with their permission I guess - although it is a public forum - and post them to - the CSCI - commission for social care inspection (there are local offices) or Hospital Managers or whoever.

    I'd also make it mandatory that 'looking in' on Talking Point is a part of all health & social care training. !!

    Reading about it 'as it is' is so much more effective than a restropective account . The archive we have on Talking Point must be the most powerful piece of evidence for evaluating services - wish Tony Blair had time to read it !!! How about inviting him 'in' .
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    more to the point, wish that Tony Blair - and the others - had the interest, the will, the compassion to read it! If they had those, they would find the time.
  12. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    Dear Ruthie

    so sad to hear what you are going through. My Mum died just over a month ago and I went thorugh exactly the same thing. I could tell at Christmas that she was very poorly, in bed with an infection. 2 lots of antibiotics didn't work and then was advised bed rest for at least 2 weeks for pressure sores. I knew she would not get up again. Time and time I asked questions of the home , I wanted the answer that yes she was near the end , but all I got was that she is a little better tnan she was yesterday. In the end after advice from my local AZ support group, I requested of on the senior carers that no more intervention was offered only TLC, this seemed to get things moving, they said I must discuss it with her GP to get things officially recorded on her records. He was lovely agreed that Mum had suffered enough and we jointly agreed just to kee her comfortable and pain free. I was then able to arrange at work to visit more, she died 3 weeks later. Don't get me wrong, I was happy with the home up to the last 3weeks and even then they looked after Mum wonderfully, but I feel they let me down by not being more honest, I needed them to tell me she was dying, I felt it me asking questions all the time. When things have settled I will go in and speak with the managment. I feel some sort of case conference should have been organised with me GP, senior staff etc so that we could have discussed Mum's care in a calm manner and I could let them know that I was not about to run to a lawyer because I thought they were letting Mum die of starvation and that I understood the process of dying and that I needed to be there with her as much as I could. Sorry that turned into a rant, you can tell I needed to get something of my chest. Anyway my point is, we know our relatives best abd we must keep asking the questions.

    best wishes

  13. Chris

    Chris Registered User

    May 20, 2003

    My Mum died in November - she gradually stopped eating and drinking - her GP could find nothing wrong - after 14 years with dementia it was decided that palliative care only was the best, Mum died 6 days later, - although I agreed - wouldnt you have thought that the GP & care home staff would have met with me (Mums only relative & visitor in 7 years at the homes apart from my husband who went on special occasions & now & then) adn as a 'team' we would have come to a decision ??? I felt like I was invisible almost. I cant believe Ijust nodded when the nurse in charge told me - but realise now I was in shock as Mum had been OK on previous visit - the staff had said she wasnt eating but I gave her her tea & she was fine so I didnt worry . They didnt phone me till was detiorating rapidly - wish I had been going in every day now - but had been so stable & often my visits were distressing due to Mums complete 'turning in ' on herself or many many times she was asleep. (but amazingly not on any drugs at all - my little success - managed to keep the drugs away all the way through).

    Time for a protocol for GPs & Care Home staff when end of life stage in dementia is apparent - its identifying that stage thats the tricky bit. Surely this is where experienced hospice staff can provide training for Primary Care & care homes ??
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    I don't know if this will help anyone, but when they told me my Mum was dying in hospital, I made them let me take her home. (You will see in my old threads if you want.) For the record, yes, she did gradually slow down, eating and drinking less, sleeping more etc. This does seem to be the pattern. I did have a problem as the hospital did not write up her pain control correctly and I had to sort it. But she was peaceful and loved at home and we had some happy times too those last few weeks. My point is, where ever they are at this stage, this is very often how it goes, a slowing down and gradually fading away so to speak. Just be there and love them. Sorry if this is upsetting, but I think some of you may want to know these things. Love She. XX

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