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. Miller65

    Miller65 Registered User

    Aug 26, 2007
    3
    UK
    Since he went on dialysis mid last month his mental function - already on the wane - hit the wall and he was left shaking tissue boxes thinking they were cigarettes and talking incomprehensible sentences most of the time. He had already become convinced that he wasn't in his house and that we had kidnapped him which was very distressing as he got aggressive verbally. We hadn't been through any of the denial and anger before which you often read about though in the last few years before now, because he had an ability to simply laugh and joke about his conditions (he used to say "it would be easier to list what I haven't got wrong with me" when reading doctors reports).

    From mid-last year onwards his wife was increasingly on the recieving end of rants and outbursts when she refused to make him tea at 3am in the morning or didn't agree with one of his statements, even though they came out as "don't you think that sunshine cap makes a good module for the backdrop" or other heartbreaking sentences, yet she continues to visit him every day, the love they have for each other still, and paticularly her for him, is extraordinary to witness. In a sense it is inevitable that he was to go into hospital or a nursing home as she just could not cope anymore and already has hypertension. She had stuck by him all the way and already has hypertension. She had stuck by him all the way, and in the end it was the hospital that erm hospitalised him, but she had began to break down crying and say things about him which spoke of not her been caring but just the sheer amount of frustration she had. He had threatened to leave and much other things but didn't apologise often because mostly he didn't remember it. It's just been terrible to watch him fade into the void like this.

    He was admitted to hospital in the middle of this month because his wife couldn't get him out of bed for dialysis after two frustrating hours. She called an ambulance and he was taken into A&E but after several hours of testing and scans they decided he should remain in and discovered shingles. He has an absolute deluge of serious medical problems: heart failure (left ventricular), ischaemic heart disease, hypertension, type ii diabetes, vascular dementia and, since last month, end stage renal failure as well as c-dif he contracted in hospital.

    The treating doctors think he has had either a stroke or a TIA earlier in the month which would explain how he failed to get out of bed for three or four days and a CT scan supported this as well as other smaller undetected strokes. Until this last Thursday he had shown no sign of improvement whatsoever, required oxygen and barely spoke. We were having discussions with the doctors about stopping dialysis which they too were in favour of if he didn't improve in the near future. To confound his trouble he also contracted the infection. But on the Thursday, after a blood transfusion and with two drips in place, he became much more awake.

    Obviously his dementia has worsened, and we think he may be confined to bed for some time - if not all the time - but generally this isn't our prinicple concern as he was left severely disabled by a motorcycle accident a few decades ago. He still retains insight into the past but his recognition skills are next to none.

    He does not know where he is and sometimes who he is with and often says things like "okay then, let's go down the pub" or "i think i'll go upstairs to bed now" (he hasn't been out of bed since he was admitted to hospital) as well as much more abstract thoughts like "i don't think that ship will make a good vet" and "what shall we go to the fancy dress party as" as well as a preoccupiation with insurance and banking, presumably due to his former career.

    The strange thing is that in hand with this he has much clarity that we did not expect such as when he asked what year it was, and we told him 2007, he said "2007. That's a good year for the queen, it's her 60th wedding anniversary" but obviously he'd forgot this as tonight he again asked what year it was. When we ask him how he is, something we do shortly after saying 'hello' usually, he inevitably replies "bl**dy awful" or "still alive but horrible otherwise" then during the time we're with him it goes either way but generally leans towards the dementia if he is initiating conversation, and not so much if he is on the opposite end.

    BUT he can't eat or drink for himself since this latest stroke so we have to do that for him along with the nurses and he also hasn't read or watched TV in months nor can he listen to radio except for Classical because he confuses all the news and thinks the street is been bombed or we've been taken hostage. He is 79 y.o btw.

    When we go he says goodnight, usually not by name, and asks us to come tomorrow, even though we haven't missed hardly a session yet. The ward has a limit of 2 visitors but because he is in a side ward (first due to shingles and now because of c-dif, much handwashing along with aprons and rubber gloves) we sometimes have over this number (something the nurses and doctors find hysterical when they come in) which he enjoys because he knows the voices even if he doesn't remember the names all the time.

    Say last night I said "If I don't come next time, I'll probably see you on Monday" to which he replies "Okay then, take care son" and you wouldn't even know there was anything wrong with him. So as it is now he is continuing the dialysis. Getting him back home is not that important to us though as he doesn't recognise his home anyway and if he had to go into a nursing home my mother manages one nearby and he is generally more content in his private side ward than he was at home, which he first said was a hotel and then became a uni dorm but is yet to become, in his mind, a hospital ward.

    Dementia has proven to be the most horrid condition to deal with, and I have nothing but sympathy and admiration for those long-suffering spouses and relatives who persist because they still care for and love the person behind the condition, living in it's shadow. Also I apologise if this is too long as I've never posted on a dementia forum before.
     
  2. germain

    germain Registered User

    Jul 7, 2007
    342
    Good morning

    No advice from me as I'm fairly new too - bit what you have is my "virtual" support . In the last few weeks I've had nothing but kindness and help from other members. It's like finding a whole new family who all appreciate what you're going through - such a relief to be able to "get it all off your chest" without anyone being judgemental.

    Big Welcome from me - another "early bird ."

    Germain
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    that's fine if you really have nothing you feel you can contribute to a particular topic on a certain day. This happens to all of us, daily.

    However, many members come to TP for the first time with loads of experience and I wouldn't want anyone to hold back because they felt they were new to the forum, or that their experience might not be as valued as that of anyone else. :)

    Forgetting all that - just doing what you have done above - offering support, is one of the key plus points of TP.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Hello Miller65, welcome to TP.

    Far from being too long, your account of your father`s decline is very moving. I read despair in every word.

    My husband`s condition is not nearly at the stage your father`s at, yet he too has type 2 diabetes, Alzheimers and Vascular Dementia, irrational behaviour and threatens to leave, on a daily basis. I am not surprised your father`s wife has her own health problems now and finds herself unable to continue caring at home.

    Those of us who are living with dementia witness the destruction of the mind and the loss of skills and can do nothing to help. All we can do is support each other and that`s what we try to do here.

    I do hope you`ll continue posting on TP. It helps to offload to people who understand.

    Take care xx
     
  5. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Hi Miller,
    I can sympathise with you on this one, my mum has AZ and Im the manager of a renal dialysis unit.

    A combination of having to cope wth AZ and dialysis is devastating for the sufferer as well as the family.

    The build of toxins when the kidneys arent working , called uraemia, adds to mental irritabilty and confusion .Dialysis is a very aggressive therapy leaving the patients exhausted for the rest of that day, sometimes into the next day too and then they have to return for another session, sitting still for 4 hours or so.
    The dietary and fluid restictions are awful, for somebody with AZ to have this to cope with too is dreadful.

    Im so sorry you all have all of this to contend with, one or the other is bad enough.

    I hope you and your family continue to get good medical advice and support.
    Love to you all
    Ally xx
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Miller, welcome to TP. It must be awful watching your dad suffer like this. AD, renal failure, c.diff, how can anyone cope with all that? I do hope you'll stay with us. I certainly have no experience of your problems, but I can offer you all the support I can.

    Ally, thank you for your explanation, it has helped me to understand the problem.

    Love,
     
  7. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Miller, and also welcome to TP.
    Capture moments like this, they are worth hanging onto.

    I don't think you will get any arguments there. I am sorry that your dad's health is so poor. I wish you and your mum the best for the times ahead. Regards Taffy.
     
  8. Miller65

    Miller65 Registered User

    Aug 26, 2007
    3
    UK
    Thanks for everyone's kind words.

    I probably won't be posting in this section any longer because last night and today, where I spent 15 hours at the hospital (7pm-10am), has brought us to the end. He has suffered either a TIA or CVA recently and become almost completely unresponsive. He nearly died last night because of fluid overload but they successfully drained 2000ml. We're going to keep draining when necessary but in agreement with his wife and the consultant renal specialist, the dialysis has been stopped. He has as little as days and as much as a few weeks to live but we have been given 24-hour visiting rights to be with him.

    Anything further I post will I presume be in the ‘After dementia - dealing with loss’ section. I'm absolutely distraught but also relieved for him personally.
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    Dear Miller

    I am so sorry to hear this news. It may not have been unexpected, but that doesn't make in any easier.

    Please feel free to post in any section of the forums that you wish.
     
  10. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Dear Miller,

    with regards to stopping dialysis I think youve all made a very brave decision.
    Its a harsh regime for the young, the elderly struggle, more so when they have other complications to contend with.

    Patients on my own unit who choose to withdraw from treatment get huge care and support, as do their families until the end.

    I hope this is the case for you and your family.

    Love to you all at the terribly dificult time

    Ally xx
     
  11. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Just wanted to say my thoughts are with you at this extremely difficult time.

    Linda x
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Miller, I'm so sorry to hear your news. Your poor dad has had so much to fight, it's not surprising that his body is giving up.

    I'm sure that this will prove to be one of your cherished memories of your dad.

    Please let us know how things go, and post in any forum you like.

    Love,
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Dear Miller .

    I hope you have the strength to face the days and weeks ahead. Please feel free to post wherever you feel most comfortable.

    I hope your father is kept comfirtable.

    With love xx
     
  14. Miller65

    Miller65 Registered User

    Aug 26, 2007
    3
    UK
    It's lovely to read all these kind words from people I don't even personally know. We have all been spared any further deterioration. He died today in his sleep at around 6.30am, thanks again to everyone, he would have appreciated your comforting words even if they are only on an internet forum. The hospital have absolutely gone the extra mile, paticularly the renal unit, where some of the staff were also crying when we told them he'd passed on. R.I.P. Tony - husband, father, grandfather, brother and son.
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Dear Miller, Please accept my deepest sympathy on the death of your father.
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Miller, I'm so sorry about your dad. At least you have the comfort of knowing he didn't linger once the end was near. His suffering is over.

    Please stay with us for as long as you like.

    Love,
     
  17. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Miller,
    I am so sorry for your loss. My Dad died last year and it was a terrible time, even though we knew he was at last at peace. Try to remember the good things and comfort yourself with the knowledge he is no longer suffering. Please come back to TP whenever you want to.
    Deepest condolences to you and all of Tony's family.
     

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