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. Rosebud

    Rosebud Registered User

    Feb 21, 2008
    11
    Hello again, and thank you for the welcome.

    My husband has had lots of tests in the last few weeks although he is waiting for a brain scan they think they have enough.

    We have gone through a memory clinic , I don't know if this is the usual way, I have been told it is better than seeing a neurologist but I am still finding my way around the options I guess.

    My husband is 69 and very intelligent,he is scoring high on the tests but they think that is because of his IQ.???

    Mostly I am seeing memory problems, but there are very definate character changes,in fact so much so that he very removed from the man he was even a few years ago.

    I have been aware of problems for quite a long time, at first I guess like most people we think of it as him being tired, not being able to concentrate etc as he was a workaholic and was responsible to the day to day management of one department of a large International electronics company , with 300 employees to take care of, now he forgets to eat, loses track of what he is doing etc, he cannot remember the name of our daughter in law who has been married to our son for 2 years, and many other things like that. He is able to drive and at first meeting you may think he is shy. He is becoming reclusive. He is very aware that there is a problem and openly discusses it if asked. His character has changed very much, he is a very gentle man, very caring, very much liked by others as he has always shown a very positive side to most things,that has changed, he can become very angry, very quickly.

    It doesn't sound much when I right it down but the changes in my husband are very real. We have been together since I was a teenager so I pretty much know him inside out.

    I know a few people whose families have had a diagnosis but they seemed to have sought help much later than we have.

    Is this good or bad, I don't know really.

    We are coping very well, I suppose we are in a very early stage.

    My husband is aware of what Alzheimers is.

    Maybe they are wrong, I guess we will find out soon enough for sure.

    Thank you for listening and I would appreciate any imput if this is typical.

    Thank you Rosebud
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    The test is on person
    memory not on their IQ Rosebud, so he must of score high on his memory
    (remembering) .
    they can score high but as the disease progressing , memory scoring go down , that why it also good to have a brain scan

    yes like my mother she was in late stages , before we new , that was because we just thought she was just. she must of been living with dementia for a long time . If it was not for the shock of my father dying we could never




    yes like my mother she was in late stages , before we new , that was because we just thought she was just. she must of been living with dementia for a long time . If it was not for the shock of my father having a heart attack in frount of her , that killed him . we could never of notices the differences in her behavior
    forgetful.

    Its good that your husband having a brain scan to find out .


    I just got back from the opticians , who tell me beside my normal short sighed and little high purser in mt eyes. my eyes are fine .

    he tell me my double vision could just be down to stress and not getting enough sleep . He was spot on . he done a glaucoma test and that was all fine . tell me that I should wear my glasses more when I go out . I just keep forgetting them .

    My son not arrived to do the painting yet in the house , I have cleared out my bedroom into my daughter bedroom . bet he turn up when my mother gets back from day centre . They you go more stress for me !!! .

    PS son arrived bye for now xx
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    Hi Rosebud. I don't know about IQ, but education can definitely skew the results of tests such as MMSE. I think that skew is more obvious when the disease is less advanced. There's been a fair amount of research about this.
     
  4. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Mmse

    Hello Rosebud..and Jennifer,

    My husband was diagnosed almost 2 years ago when, after memory test, history and subsequently a brain scan he was found to have Alzheimers plus a moderate degree of Vascular dementia.
    He was commenced on Reminyl and is now on the maximum dose..

    In those 2 years he has deteriorated to the point where he can no longer care for himself..he can shower and shave and dress etc. But it takes for ever..and he needs help choosing appropriate clothing ..and that's it..without me or someone he would not be able to survive alone.

    Yet at the beginning his MMSE score was 29 and remained at 29 until his last visit to clinic in early February when it dropped to 26..

    Rosebud..I think you've done the right thing in seeking help for your husband..if there is a problem the sooner you know about it the better..keep posting!!

    Love Gigi x
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Rosebud

    I do think IQ can have a bearing on mmse scores in the early stages (my opinion only), and I think natural aptitude also has a bearing. For example, someone who is used to dealing with numbers would be able to do the number questions for longer, while a linguist might retain the ability to answer the word questions. My husband was an architect, and for a long time could do the drawing and number questions, when his language had gone.

    I agree, you've done well to get your husband diagnoses at an early stage. The sooner treatment can be started, and a support network set up, the better. It saves having to go through all the agonies at a time when the stresses of the disease are building up.

    All the best,
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    I have often wondered about the MMSE test.

    Dhiren scores 20. But he falls down on the location questions. He doesn`t know which town he is in when he attends the clinic, nor does he know the name of the hospital.

    But if we were still in Bury or Manchester, he would know the place name, and the name of the hospital, I`m sure.
     
  7. Rosebud

    Rosebud Registered User

    Feb 21, 2008
    11
    Thank you again, they have actually told me that because of his education he is testing high (he qualified for Mensa in his earlier days so his IQ is high too )

    I think the thing that concerns me most at the moment is that the problems seem to be gradual,and am wondering if they are too gradual. I can go back 10 years and remember things being off a bit, he still worked then but I do know his secretary was holding him up a bit , she was his 'at work' memory, we used to chat and we both thought it was overwork, he still was fine, very few other folks noticed a problem then.

    I have read a lot on this forum and I am getting the impression that others people have detiorated much faster than my husband is doing, or did I just notice it ultra early

    Also I think I have covered for him so much without realising it, that it has crept up slowly and only now that there are things I can't excuse away am I really thinking this could be serious.

    My husband does not look and sound like the man he was 10 years ago but anyone meeting him for the first time would not realise there was a problem I don't think, well not at first. He looks older than he is so I presume folks think he much older and treat him as such. He hates that of course.

    He has a beard which was always immaculately trimmed, as was his hair,he was a very fastidious man, now I have to fight to get him to go to the hairdresser as he looks like Moses with a beard which is very long, this of course adds years to him.

    I can't seem to handle that one better though. It comes down to a fight, which I win, but it is not pleasant, I don't want to be his Mum or keeper unless I have to, but he seems so childlike sometimes.

    I know he now waits for me to remember for him, and sometimes I refuse,often with a few clues he will recall things, sometimes not. eg..what did you have for lunch? Usually he doesn't know.

    I still work and I keave him things prepared but they are often there when I come home, I am debating wether to phone to remind him but I am nervous that I take away from what he has too soon.

    I guess these are all things you have all heard before

    Thnak you again, I don't think I have sent a letter with so many things starting with I.
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Rosebud

    There are so many forms of dementia, some of which progress much faster than others. And some people with AD progress faster than others.

    My husband John was originally diagnosed as AD, after mmse tests and a scan. He was prescribed AD medication.

    Four years later the consultant decided that John was not progressing in the way he would expect, and changed the diagnosis to primary progressive aphasia.

    I'm not suggesting this is what your husband has (John lost all language, but had few memory problems), but there are so many forms of dementia, over 100 I believe.

    I think it might be worth asking your consultant for a review, and explain your doubts. He is the only one who knows your husband well enough to diagnose.

    Love,
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    What was his scoring ?

    When is the brain scan going to happen ?

    So what do they think wrong with him, without knowing from brain scan have they told yet or not ?
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    #10 jenniferpa, Feb 24, 2008
    Last edited: Feb 25, 2008
    Rosebud - something you said I think should be addressed. I don't think that there's any empirical evidence that helping someone remember will actually cause their memory to become worse. You see a lot of ads etc claiming that certain things will help your memory: the "use it or lose it" concept but as far as I'm aware when it comes to the organic dementias such as AD or LBD there is nothing that can be done from a "brain training" perspective to slow the decline. There IS some evidence that people who have lost capacity due to strokes can relearn skills but that's rather different.

    So I wouldn't worry overmuch about reminding him, provided the reminders are received OK (which may be another issue).
     
  11. Rosebud

    Rosebud Registered User

    Feb 21, 2008
    11
    Hi again, the ,more I read the more confused I get. Nice,MMST, where can I educate myself more about these before they call us back with results in a couple of weeks.

    Have I gone the wrong route.

    We lived overseas for a great many years and have only been back a few years so I am still not very familiar with the systems here.

    Our Dr sent us to the memory clinic, I just thought that was the route they go here.

    They told me it was good we had come there as it is better than seeing a neurologist.

    Would I have had options?

    Will they explain it all to me at the meeting about the results.

    I need some info and some education I think, I feel so out of my depth.


    XX and a hug to the lady who had the bad day,I do so hope you have a better one tomorrow.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Dear Rosebud,

    You have done nothing wrong, don`t worry. With dementia, there is no right and wrong, we are all novices when it is thrown at us and there are no rules.

    It seems different Local Authorities have diferent methods of opertation, so just go with the flow.

    You have an appointment to discuss the results of the tests. Before the appointment, write all your questions down, so you won`t forget anything, and ask the doctor.

    NICE is the body that controls the prescription of drugs....National Institute for Clinical Excellence, I think, and MMSE is the memory check, Mini Mental State Examination.

    I`ll try to find the link for more information.



    I would agree with Jennifer, that it might possibly put your husband under more pressure to try to make him remember.

    Take care xx
     
  13. Rosebud

    Rosebud Registered User

    Feb 21, 2008
    11
    Sylvia ,thankyou. One thing I was concerned about was the fact that when he first went to the memory clinic, they split us up, he with a tester and I with a nurse.He didn't want me to go but I think he was a bit intimidated by three people there apart from us.

    After the conversation I had with the nurse I felt uncomfortable as there was nothing that couldn't have been asked while my husband was there, I felt as if I had been talking behind his back and we don't have that sort of relationship. At the next meeting I voiced this concern before they took him away, I did stay with the nurse but we only chatted generally. I understand why they want him on his own as I could distract him but saw no sense in anyone seeing me alone.

    Is this the usual thing to do and if so why, I did ask and they looked uncomfortable.

    I am also concerned that the 'British' way of only telling part of an illness might happen and we don't want that either. We have always been a couple that want to know what is going on. Am I wrong on this. I guess this is different to the cancer I had some years ago.

    I want to do the right thing but this is something I have not had to deal with before.

    Thank you for listening, it is a big help to be able to ask these questions.
     
  14. Rosebud

    Rosebud Registered User

    Feb 21, 2008
    11
    Hi again, I was just reading some other posts and noticed someone had started another one like this one because they said there was too much angst on here, I do apologise , I guess that must be me causing that as I seem to have filled your page with my worries.


    It was thoughtless of me to ask so much so soon,I understand there are people far far worse off them me and they need the support much more than I do, I certainly didn't wish to chase anyone off their thread.

    Thank you all for helping me, I can see you are a tower of support to each other, I should have had more consideration and I am so sorry.

    Sincerly and thank you for your help,

    I wish you all peace.

    XX Rosebud.
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    #15 jenniferpa, Feb 25, 2008
    Last edited: Feb 25, 2008
    Oh Rosebud - please don't worry about it. We share good times and bad on this forum. Sometimes threads meander a bit which is why we suggest that substantive questions are asked on their own thread, but that's more so that people can keep things straight rather than for any other reason.

    If you want I can collect your posts into their own thread, but please don't feel that this has to happen. Every member is valuable and hopefully we can provide you with some strength as you face this difficult disease.

    Moderator note: I have copied Rosebud's posts and the responses from the "How has your day been" thread in the Tea Room because I think it might be helpful to keep them together. I tried to insert this note last night when the boards went down (grr)
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Rosebud

    As Jennifer has said, please don't be concerned.

    Sometimes we need to rearrange thread a bit because it is the nature of the forum that something that one person says will spark a thought in another and they will [usually] inadvertantly cause a diversion from the thread's original topic.

    The most prolific posters on any site are not usually those most in need of help and newer members in need of direct advice sometimes feel swamped by the sheer variety of material posted, from direct replies to specific questions, to personal agendas, jokes, and photographs. It is all here on TP, but often best if not mixed together in one place.

    The Tea Room is the place where people can chill out and raise topics of no immediate relevance to day to day caring. At times when there is nobody else in your life to speak to - which frequently happens to carers - then people can post a great deal.

    It was Connie, a long-standing member, who wrote this. Connie is one of those who has an immense caring role and a heart as big as a planet, but who still finds time to try to help others. Connie tends not to post when she has nothing substantive to contribute to others in a similar situation.

    Connie was probably thinking about the original post in the thread "Gigi had a good idea to start a chat thread." and thinking "where had the fun gone" and thus opened a new thread along the original lines.

    TP and its content evolves, and sometimes needs a little reorganisation.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Dear Rosebud,

    Everyone on TP has equal rights to be heard. Your story is as important as anyone`s. You have every right to ask away and if there is an answer it will be found.

    When you attended the memory clinic and were separated, it was to offer you individual support if you needed it, and I think, to see how much your husband depends on you.

    The `British` way of only discussing part of the illness is a tricky one. Some people do not want to know the full prognosis, others do.

    But with Dementia, you will find there may be similarities in progression but no two sufferers are the same. Factors which affect the progression are the type of dementia, and there are many different forms of it, other medical conditions, medication and 101 other things.

    With cancer, you may get answers. With dementia, it`s not always possible.

    Please ask away. Although there are no experts on TP, unfortunately there is a wealth of experience.

    Take care xx
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Rosebud,

    Of course your questions are important to us. We all know how confusing the system is when you are first hit with it, and we all try to answer questions where we have relevant experience.

    As Sylvia says, it's normal for you to be seen separately at first. For the person being tested, they usually rely on their carer for prompts when their memory fails, and can become quite distressed if the carer is there but does not help.

    Also, there are times when the carer wants to talk about things in private, for example violence, prognosis, inability to cope. I realise you haven't reached this stage yet, but there may come a time when you welcome the opportunity to talk.

    Please don't be afraid to ask your questions.

    Love,
     
  19. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Dear Rosebud,

    I'm so glad you have your own thread as you have such a lot to deal with at the moment.

    Can I reassure you that when my husband was first seen at Memory Clinic we too were seen sperately..and I felt as you did..that I was in some way betraying him...

    But I was also relieved as I knew I wouldn't be able to speak so frankly about him if he was in the room..and I knew I had to as he was obviously having problems and needed help..

    And I knew then I was not imagining things..he did need help and from that point onwards there was professional involvement and support..

    Please keep in touch with us on TP..we all support each other .. and you are as important as any of us!!:)

    Love Gigi x
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #20 Margarita, Feb 27, 2008
    Last edited: Feb 27, 2008
    I don't think its a British thing, as when my mother had her done in Gibraltar and in England . I stayed they with her on both occasions , All I was told was not to answer for her .

    I can imagine it must of felt bit intimidating for you , if you felt you had to leave , because they ask you to .

    especially where it reads from your post that you have both come from abroad so its all a new system for you in UK .

    but your in your right to voice any concerns if you did not want to leave .

    Mind you I did find in Gibraltar they gave me booklet in what was going to happen to my mother with AZ , but I did not get any info ( about AZ ) in UK when she had another test done on her for her memory was just left to get on with it.
     

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