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Memory problems - not dementia

Discussion in 'Memory concerns and seeking a diagnosis' started by canary, Mar 8, 2015.

  1. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    I wasnt quite sure where (or even whether) to post this as my husband doesnt actually have dementia although he has cognitive/memory problems from a traumatic brain injury. If the mods wish to move/remove it I understand

    Some background:
    Mum has AD, but my main caree is my husband who was involved in a road accident 20 yrs ago and has been left with cognitive/memory problems. These problems are quite unlike the ones that mum has. My husband knows exactly where he is, who everyone is, what day and date it is, has no trouble with numbers, etc BUT he cant remember events. He can remember that he has done something, but cant remember why. He can remember that he has met someone or been somewhere, but cant remember when or any of the details. He can remember that he has done a particular task before, but cant remember how to do it. He has no problem with his short term memory, but after a day or so it starts to fade, so that by the time it gets to two or three weeks all he has is fragments. He has very little insight and confabulates to try and join up all the fragments and as he is still a very cleaver man his stories (unlike mums) are extremely plausible and unless you knew the truth, would be entirely taken in.
    After the accident I was told that he had memory problems, but, as was the norm in those days, had nothing in writing. All was well until the dreaded ESA came along and I had to appeal to get benefits back for him. As part of the appeal I had to get documentation so he was sent for lots of tests for his memory. As you can imagine, he passed all of these tests with flying colours and he was diagnosed as having depression. It was strongly insinuated that I was the cause of the problems and it was recommended that we had couples counseling :eek: I persuaded my husband to go to see his GP to request that he could be referred back to the hospital that made the original diagnosis and I went with him. Unfortunately, because he has little insight (and had forgotten why we were there) he accused me infront of the GP of taking him over and preventing him from doing things :eek::eek: The long and short of this is that I have now been labeled as having Munchhausens by Proxy :eek::eek::eek::(:(:(

    Question
    I have managed to get him referred back to the original specialist hospital through his neurologist and he has had lots of neuropsychology testing. We have received a letter which is a copy of a letter sent to his GP saying that there is "anterior brain damage" and asking the GP to "point him in the direction of the memory clinic"

    So, my question is - is it worth going to the memory clinic?

    We wont be going back to see the specialist hospital until April, so I cant ask about anything until then. Im not sure whether the letter means that his memory loss has been found or not. If it has, then Im not sure what the purpose of the clinic is - Ive been to the memory clinic with mum and all they did was make the diagnosis of AD, start her off on meds and discharge her back to her GP. If they havent found the memory loss, then Im sure that the memory clinic wont find it as he passes all the tests.
    Im unwilling to go there if they are not likely to help as if they also turn round and say they cant find any problems then this will just reinforce the idea that I have MBP and wont do anything to help my husband.
    Im so stressed.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,861
    Female
    Scotland
    Your explanation here is so cogent and clear I would be inclined to print it out and send it to your accusers with a copy of whatever medical documentation you can lay hands on.

    Whatever next eh!
     
  3. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    My husband started off with cognitive impairment after a double scull fracture . He was exactly the same as your husband but after visit to memory clinic and extensive tests of 3 weeks and having to go on their computer doing a touch screen test they were more inclined to think he had dementia ! He then has spec scans and neurology appointments , more scans like CT and eventually after 18 month was diagnosed with early onset of ad! Now, 4 years later after 2strikes they also found some vascular dementia on his brain. Hope this helps. Xx


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  4. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    Strokes not strikes sorry typo error


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  5. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    Thank you chick and marion for your support:)
    Just to clarify - its my husbands GP who thinks I have MBP, so has access to all his medical stuff :mad:

    Im thinking I might leave getting him to go to the memory clinic until Ive had a chance to talk to the doctor in the specialist hospital
     
  6. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    I do wish you well Canary hugs to you xx


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  7. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    Hi, having seen the specialist consultant I thought I would give an update

    He believes that hubby has problems and talked about "early fronto-temperal dysfunction", but stressed that he did not think it was dementia. He said that there was a condition called Accelerated Long-term Forgetting. I googled it when we got home and found there is also a related condition called Autobiographical Memory Loss.
    I have never heard of these things before, but they fit my husband to a T!

    I asked him about going to the memory clinic, but he has referred my husband to someone else in London who specialises in dementia and "hard to diagnose cognitive problems" which sounds very promising to me.
    :D
     
  8. Madfor11

    Madfor11 Registered User

    Jun 25, 2014
    2
    Leeds
    Everdence


    Hiye I have just read your post and wanted to comment on your struggle with evidence to Benefits as well as to Doctors. I have found the most powerful evidence is a daily diary and would try and get your husband to do it himself. I was in a similar position and could not comprehend what was going on with me I felt family were confusing me and to be honest it was scary and I reacted with anger, running away from problems and life in general. The diary I have is very personal and I have prompts on it for taking Meds, having a bath, brushing teeth extra then I try and put down how I am feeling and what is going on in my day as well as appointments. I have also started to note down after an appointment what had been said and how I felt about it. I find this so useful on follow up appointments or seeing a new doctor (I think they get a bit fed up as I go in with a copy of reports and leave it with them) but it has worked as now I get listened to and I have not had a problem with benefits. Hope this helps in a small way
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    #9 canary, May 23, 2015
    Last edited: May 24, 2015
    Thank you for that advice Madfor11 and Im glad you have found something that works for you too :)
     
  10. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    465
    North West
    Interesting post canary and check. My OH had a skull fracture 50 years ago, just before I met him. He has never had a good memory and has always tended to lose things and cause social muddles. About 10 years ago he started to have headaches and hot flushes and we consulted many doctors/specialists, scans etc. First specialist said absolutely no sign of alz, strokes or epilepsy but we eventually ended up at the memory clinic diagnosed as alz. The only "new" symptom he has is poor navigation.

    I'm still not convinced he has alz or dementia but not sure whether to try to get another diagnosis or work with what we have. Would hate to think there is a diagnosis that would improve his life and I haven't tried my best to find it.

    As he has always been a bit muddly I have dealt with finance, social, etc. and it has been suggested that his condition is my fault because I'm so controlling. But truly I do not know where we would be today if I hadn't stepped up to the plate. Like you with your ludicrous MBP label. Damned if we do....

    I will look up the Accelerated and Autobiographical memory loss you mention. Please post on how your next appointment goes. Best of luck.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    I will indeed let you know how he gets on rhubarbtree. The appointment is in late June.
    TBH I doubt there is much that can be done, so in your case it may only be a change of labels. In my case, however, a diagnosis may give us evidence for PIP (when his DLA is replaced) and also stop people thinking that I am making it up.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hello canary

    I despair of the people who know so much better than you.

    I`m no medic but wonder if while dementia is progressive , other brain injury might not be.

    An accurate diagnosis is necessary for your own peace of mind , to ensure your housemaid is getting the best possible treatment for his condition and to ensure you get the benefits you are entitled to.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    Update

    Well, hubby has been back to the specialist appointment for the "hard to diagnose memory conditions" and now Im a bit shell-shocked.

    It was confirmed that he has Accelerated Long-term Forgetting, but this consultant said that there were things that didnt quite fit and he thought he also had fronto temperal dementia. :eek: It has not been actually diagnosed, but would he say that if he were not pretty sure? He wants to see him again in 6 months time to see if there have been any changes.

    I thought it was just the damage due to his accident - have I just been putting my head in the sand? Or am I worrying unnecessarily?
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    I have just re-read the thread and I see that chick and rhubarbtree have a very similar story to me. I was really not expecting dementia.

    Mum has Az and I know that 2 people with dementia are not the same and Az is very different from FTD, but Im a bit scared now
     
  15. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    So sorry Canary plz don't be scared. It's a lot to take in and a bit of a shock but there advice, support and help out there. Hugs to you xxx


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  16. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Sorry to hear your news. Have been absenting myself from this thread for a couple of days: truanting some might say. It's so hard when consultants are not as sure as we would like them to be about what is really going on. Take care. G L
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    Thank you chick and grey lad

    I think Im scared because Ive had an absolute roller-coaster of a ride with mum for the last 2 years. Ive now got her settled in her CH, got Court of Protection and am clearing and selling her home. How on earth do people cope with two?
     
  18. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    619
    Female
    Oh my goodness Canary. You have been through so much yet you still have been so kind and supportive to me. I have no experience of what you're going through but just wanted to stop by and give you a virtual hug and send lots of love, luck and hoping you find the answers you're looking for. Xxxxxxx
     
  19. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    Oh Canary that's such a lot but my John is 4 years in and still holding up quite well , has capacity still and lots of good days. Lots of hugs xxxx


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  20. canary

    canary Registered User

    Feb 25, 2014
    10,570
    Female
    South coast
    You are right chick. There are no really big problems with hubby at the moment.
    I think it came as such a shock I panicked and tried to look too far into the future

    I need to take it one step at a time

    First step - organise PoA :)
     

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