Can anyone recognise this?

Discussion in 'ARCHIVE FORUM: Support discussions' started by barker, Feb 4, 2006.

  1. barker

    barker Registered User

    Jan 22, 2006
    26
    barker

    Hello

    My partner has some kind of dementia, as yet not diagnosed after some 3 years. Very often his behaviour and manner seem normal to the outside world, but he is a different person once we are back home. He follows me about, panics if I am out of site, he repeats himself over and over. Very often he knows the answers to the questions he asks. He panics and gets very, very anxious. His memory is poor and he gets confused. His personality has changed from confident and extremely able (he managed many men in his job) to a timid shadow of his former self with no confidence. He has to be promted at every stage during his morning ablutions. However, he seems to excel at the psychological tests and scans show only mild atrophy. Can anyone shed any light on these symptoms? His brother has Pick's Disease.
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hello & welcome

    Thanks for telling us a little about yourself & your partner. The symptoms you describe will sound very familiar to many here as, unfortunately, they are common to many of the various forms of dementia. Whether there is any hereditary aspect to Pick's Disease, I don't know, but a Google search would probably produce some information; the Alzheimer's Society Factsheets (link top left of screen) may cover it too. Or you may well get a reply from someone who does know

    This 'Tea Room' section in which your post has appeared may not be the best place to attract replies more knowledgeable than mine. The first section "Support ..." might be a better place to try. (Tea room, as you may possibly have noticed, is a sort of miscellaneous section, including some rather dubious jokes. That might seem inappropriate, but we all need some R&R sometimes.)

    Perhaps you could include your partner's age too, which may be relevant. Some who post here are caring for partners who have Early-onset dementia (pre-65), and others have more elderly parents or partners. My Mother is 86, has been showing vague symptoms for about 2 years, but like you we have still to get a definite diagnosis.

    I'm sure that reading contributions & the general ethos here of "We're all in this thing together", and the willingness of everyone to share experiences & tips for coping, will be helpful to you.

    Best wishes
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Barker and welcome,

    as Lynne has suggested, I have split your post and her reply and moved them to the "Support...." section of Talking Point, where they should get a bigger response.

    Best wishes
     
  4. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    135
    Germany/India
    Hi Barkar

    You say that your partner is sort of 'normal' in the outside world and has some sort of panic attacks (?) when at home. Would you be in a position to ask him the cause for his fear or anxiety? Perhaps he is hallucinating - seeing things or hearing voices which can be very frightening in a confined place like a house/flat whereas outside, it could dissolve in space or humanity (my assumption) , or that he could be misinterpreting shadows and objects in the house. He might be feeling the walls closing in on him causing him to panic. Does he get panicky in other enclosed spaces like lifts, garages ? Has he tried taking anti-anxiety drugs ? Probably he has an anxiety disorder.

    It appears that in Pick's disease, personality change is more predominant than forgetfulness but the doctor is the best judge - a specialist should be able to tell from the scan but since he's excelled at the psychological tests, and considering he has only mild atrophy, what are the doctors saying ?

    It must be quite hard for you not to know what it's all about but perhaps recording his behaviour can give you and the doctors a better insight into what's happening.

    Do keep us posted.
     
  5. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    Barker hi,

    Your post really strikes a cord.. I have been puzzling over the same sort of thing recently. Monique exhibits all the symptoms you were describing - follows me about, loss of confidence, repeating endlessly, getting lost in the house, inability to cope with the slightest 'real' task etc etc etc BUT - if you meet her, briefly, for the first time, then nobody would know she was ill. Her basic personalty, wit, humour is still alive and present. Her judgement of people, situations is still spot on. Her personality has not changed.

    I wonder, if partly the problem is, that the wide world closes down, to just the 4 walls of the house - because the problems of 'sorting out' - 'seeing' new places is too challenging? (I have recently moved Monique and I to another bedroom, whilst some building work is happening, and the confusion that has caused is surprising! She has found it very disorientating.)

    I also remember, from my periods of unemployment, that television in massive doses is utterly boring - uninteresting. (works fine as a form of relaxation) So people like Monique and your partner, have so little to exercise their...mind, brain, creativity, imagination that the 'demons' of helplessness, insecurity, fear of the unknown, lack of energy, can run riot in a very large empty space....

    Sad so little real research is done/available about how it is like to be inside that muddled - woolly head... Really glad you posted what is happening with your partner, as I, sometimes, momentarily, wonder if I am exaggerating Monique's problem. I am absolutely certain I do not really understand it!
    regards
    Michael
     
  6. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Barker

    My Mum was only 70 when she started showing almost the same signs as your partner.

    To the outside world she seemed fine, but when aquaintances spoke at length to her, they too saw the changes, subtle at first.

    At home, however, she had awful anxiety attacks, hallucinated and "lost" things, accused family members of "stealing" items later found in the most odd places.

    She was diagnosed after a year or so as having AD with an element of vascular dementia, and is now in an EMI home following the sudden death of my Dad 16 months ago. She was given anti-anxiety medication which helped a great deal and was on galantamine for three years, which was wonderful until it was stopped for reasons best known to her consultant and NICE!!!!!

    Your partner is clearly unwell and you may have to pester relentlessly to have a diagnosis for him as without that you are trapped in this awful limbo.

    I hope others will be of more help than I can, but remember you are not alone.

    Kathleen
     
  7. Dee

    Dee Registered User

    Mar 23, 2005
    41
    Shropshire
    Hello Barker

    Like Kathleen's mum my mum exhibited all the all the symptoms you described except she was a little older at 75. The problem really came to a head when she moved house and overnight deteriorated and has never fully recovered. That was 2 years ago. She has taken Aricept for a year now and has been in a care home for 6 months during which time she has gradually improved beyond all recognition.

    Someone on this site recently said that care homes are not necessarily a backward step and I am sure in some cases that is true. I really believe that the improvement is due to the reduction in stress that she feels - no more worries about locking doors, shopping, cooking and trying to be as she was.

    Her natural humour, intelligence and long term memory are all there - her short term memory is appalling and she acknowledges she would never cope alone again. She is rarely anxious - if she is, it is in the evening, and the carers are very good with her. What her definitive diagnosis is I dont know - dementia is such a little word for a huge number of disease processes.

    The wonderful thing about this site is you realise you are never alone.

    Best wishes

    Dee
     
  8. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello Barker:
    My husband has and had very similar symptoms to your husband. He started losing things and getting bad tempered with me and everyone else , now he doesn't really want me too far away. His ability to do understand things has changed dramatically - cannot now understand even bank statements (he has been a director of a large company with many accolades for his ability!)
    With regard to assessments - they really are a mystery. David rises to the occasion and his results are always very good - so they say he is suffering from mild dementia!!! Then he cannot always find his way to the bathroom or forgets who his daughters are married to and who the grandchildren belong to. Our CPN says they do understand they are not reliable but they are needed for the record. We are now 5/6 yrs down the track (maybe more) and he still has exceptionally lucid moments.
    I do think you have to push hard for assessments and a diagnosis although it is difficult even for the professionals to know exactly what is going on. I did have to get very stroppy indeed before the consultant jumped into action. Whilst my husband has been diagnosed with AD occasionally the nurse will say it may be 'vascular' - but that is because he had a stroke on being given the diagnosis of AD!!!
    I am sure you will find this site very very useful.
    Thinking of you, best wishes BeckyJan
     
  9. Lulu

    Lulu Registered User

    Nov 28, 2004
    391

    Michael, you have really hit the nail on the head, kathleen , too. My Mum is perhaps not quite at the stage Monique is at, and she shows her own individual symptoms of course, but this is so spot on that I had to tell you so. I now thank my lucky stars that we have our diagnosis, that there is help and support here, and you can, at least with some aspects of it, be one step ahead.
     
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi barker,

    Welcome to Talking Point.

    Glad to see that you've already had a number of replies.

    You say that the process of trying to get a diagnosis has been going on for over three years and has included a brain scan of some type.

    Have the doctors prescribed medication of any kind for your partner or discussed the possibility of trying some medication(s)?

    Take care,

    Sandy
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Barker
    after 7 years on Aricept tablets my wife is as Michael describes.Plus some.
    The difference is that she is becoming more verbally agressive,not only to me but to anyone in the firing line.
    I think she could be physically so but something is holding her back?
    We do however get fist shaking and threatening gestures
    We still get the tearing up tissues,I find them everywhere around the house.
    Humour,she said to me"Would you like a cup of tea it's no trouble to you to make it?"
    What a nightmare it all is
    Norman :confused:

    Quote by Michae El
    Your post really strikes a cord.. I have been puzzling over the same sort of thing recently. Monique exhibits all the symptoms you were describing - follows me about, loss of confidence, repeating endlessly, getting lost in the house, inability to cope with the slightest 'real' task etc etc etc BUT - if you meet her, briefly, for the first time, then nobody would know she was ill. Her basic personalty, wit, humour is still alive and present. Her judgement of people, situations is still spot on. Her personality has not changed.
     
  12. barker

    barker Registered User

    Jan 22, 2006
    26
    Quest for Diagnosis

    Firstly many thanks to all those who kindly responded to my query. I am very new to this system and seem to be posting messages in all the wrong places.

    During the three years we have been in the system, we have seen 2 GPs, 1st neurologist followed by 3 psychiatrists, 1 psychologist for psychological screening, a 2nd neurologist (privately) together with another psychologist (more testsand scans), psychiatrist no 4, ; a professor, his registrar and assistant at the Dementia Research Unit in London with a further appointment due in the spring; 1 trainee psychologist at home, 1 occupational therapist and an activities therapist.

    We are seeing neurologist no 2 again in April. My partner is now on the waiting list to see a consultant at the Memory Clinic of one of the local geriatric units, having previously been refused, as I understand it because of his age. He is 62.

    Without a diagnosis he cannot be prescribed Aricept as if it anything other than Alzheimers, we are told it will worsen his symptoms.

    I don't know what else can be done, or how much harder I can push! We are going round in circles and getting nowhere. We are no further forward since we paid to see the 2nd neurologist privately in March 2005. In the meantime he is definately deteriorating.

    He went into respite care today for a week, and I feel so, so guilty.

    Sorry if I seem to be going on somewhat, but it is all so frustrating. I am sure this feeling must be experienced by far more carers than me and I would be grateful for their imput.
     
  13. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Barker,
    As long as you post, who cares whether it is the right or wrong place! Keeps Brucie out of mischief if we give him these little tasks to do!! Blimey reading your post, I wonder who else you can see. What do all these professionals say? Do they accept that there is a real problem with your husband's health?
    I think guilt is a real problem for all of us. The thing is you are going to need courage and strength to love and support your husband through his illness, and that means that you must take some time to care for yourself. Also if he gets used to the idea of respite care and is comfortable in the place that he goes, then it may make it easier in the future if his condition deteriorates. So try and enjoy your week, you are having this break because it is in the best interest of both you and your husband.
    Take care,
    Amy
     
  14. barker

    barker Registered User

    Jan 22, 2006
    26
    diagnosis

    Hi Amy

    Thank you so much for your reply.

    I am still not sure how to work the system, do I have to post threads to start off a fresh subject? I am still finding the process confusing.

    With regards to diagnosis. The professionals are scratchig their heads, they say he is an enigma and that their branch of expertise isn't an exact science. We have an appointment coming up in April for further tests in London, as a day patient for 5 days! He has his first appointment with the memory clinic in June and a follow up appointment with the neurologist who referred him to London in the first place, in July. I am dreading them coming up blank again, as he is definately getting worse, although he still has better days, and sometimes(especially to someone who didn't know him prevoiusly), he seems normal.

    Respite care was reasonably successful. It took me half the week to settle to it, as I missed him far more than I had anticipated, especially as I had reached screaming pitch before he went. Do others feel like this, loving the person but losing sight of these feelings sometimes because of the constantly stressful situation?

    When I collected him he was in a terrible state, as he had convinced himself that 'he had lost me forever' (this is a frequent worry of his). He told the staff that he would go in again, but since then he tells everyone that his stay was awful. I have booked him in for a further week in June, but will not mention it to him until much nearer the time.
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Amy

    ...don't you believe it.... :D
     
  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Good luck with getting a diagnosis.

    It's a long way to have to travel for the tests. (With my mother, it's difficult enough to arrange a visit to the local hospital about a mile away.)

    I hope he will be OK about the respite week in June.

    I wonder if writing a letter to him or frequent cards while he is in there help to assure him you aren't "lost for ever"?

    Lila
     
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Barker

    To start off a new subject do as follows.

    Step 1. decide the most appropriate section in which to post it, for instance in "Support for people with dementia and their carers". Select that section.

    Step 2. press the "New Thread" button and type away!
     

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  18. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Barker,
    Right, if you want to start a new thread, you go to the bottom of the page where it has all the different threads on, and I think it says there "New thread". I still keep clicking the bit at the top of the page where it says Thread/ Thread Starter, and wonder why it doesn't work!! If you want to start a fresh line of conversation , that's what you can do.
    Sorry, I misread the date of your post, I thought your husband was in respite this week. You must have thought me really thick! Oh well, I was only a month late.
    I am sure that you are not alone in reaching screaming pitch; I know how my dad used to get when mum was in earlier stages of dementia. Are you getting any support from a CPN, family, anyone? Is your husband still OK to be left for times during the day? I know I used to say to dad to lock himself in the bathroom, phone me, walk round the garden, count to twenty (ten was never enough, and maybe I underestimated at twenty as well!). It was a very difficult time. Mum became obsessed with feeding her dog, (she didn't remember that she had already fed her, but it wasn't dog food, it was steak and chicken!) At the time I was on a very tight budget, and it was no joke that the dog ate better than me and my kids! She was nolonger able to cook a meal at this point.
    Well done booking the Respite for June. Are you planning to do anything, I know dad just 'enjoyed ' being in his home without the stress of caring. What interests do you have? What do you enjoy doing? I know from other people's posting it can be so hard being forced into having to develop an independent life when your partner is still there and all you want is life to be back to normal! (See some of what Norman has to say.)
    Hopefully the tests in April will throw some light on what is going on, and then maybe there will be some medicaion that might help the situation. The thing is will putting a name to it make any real difference? You know in your heart that it is some form of dementia. You have some idea about the long term implications of that. Aricept may slow down the progression if it is prescribed. Yes, try and get a diagnosis, but more importantly build up a support network; grasp the moments that you can to enjoy together. Take lots of pictures. Live each moment and try and find the goodness in it. This should be how we all live, because none of us know what is round the corner, even when we think we do know! Talk on here about your negative feelings,no-one will be shocked or condemn - you are not alone in this.
    Take care. Looking forward to hearing from you again.
    Amy.
     
  19. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    OK Bruce,
    There I am typing my reply in, explaining where these buttons are, and you go and use all this fancy tecnology and put in pictures. Well I still think my instructions for "Quotes" were easier to follow than yours! ;)
    Amy
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Amy

    Amy, maybe I just like pictures....? That is always the way I have related to things. [one day someone will teach me to read :D ]

    Mind you, I looked in the mirror this morning and saw the face below. Not so much facial expression, more facial expressionist..... ;)

    Perhaps a picture isn't worth all that many words, after all. What did I do last night.....? :confused:
     

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