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Desperately seeking support

Discussion in 'Memory concerns and seeking a diagnosis' started by Angryperson, Oct 27, 2017.

  1. Peachez

    Peachez Registered User

    Jun 19, 2016
    45
    Female
    South East England
    You rabbit away! Sorry I haven't had any time to reply until now. We have had exactly the same conversation about attendance allowance. More than once. With the same result. Usually he'd get every penny he could, but it would mean facing up to it, and admitting to the outside world that he has a problem wouldn't it? A thorny one... also I have thought of getting the dog a pill box, as the last time he decided to do it he managed to give her the wrong meds!

    I'm struggling for Christmas presents for him. Another jumper... but what else? I love your memory board. How's that going? I bought an alarm clock that has stylus and a section for a daily reminder that can be changed everyday. I have to evict him to the spare room on a regular basis, the other night I only got 3 hours. He lies on his back and seems to find it more and more difficult to roll over on his side, making the snoring and heavy breathing even worse.

    Yes, mine still drives. We went through a year of him being banned due to his EEG suggesting epilepsy, this was about 8 months before the brain scan. It was one of the worst years of my life. He is the passenger from Hades. Since he was allowed to drive again, we've bought a new car, I made him get one that has top marks for safety for people both inside it and outside! He's generally ok, getting a bit slow at roundabouts and junctions, so gets a lot of people cutting him up. And a few beeps are happening now. One thing the car has, is an alert for if you've wandered out of lane. Strange how much it goes off when he's driving, yet doesn't go off for me ... he also blames the positioning of the pedals for him crunching the gears, even though he does it in my car as well, and again, it's not a problem for me.

    keys !!! he was so adamant that it was the keys that were sticking, he wanted the front door lock changed. So we swapped and has had to admit that it was him.

    Have you been to a local 'Carer's Hub'? they might be able to come up with help for when you want to be away. Also it might be worth looking into the Princes Trust for Carers, see if they have any way of helping you out?

    I'm escaping to be a lady that lunches today, so need to go, but will be looking out to hear from you again...
     
  2. Angryperson

    Angryperson Registered User

    Oct 27, 2017
    22
    This is really spooky! We don’t really do presents anymore other than for grandchildren.
    He was in favour of the memory board as I need it as well, however, after a good start, he forgets to hook the dog lead etc on it. I’m working on it though. A lot of it is finding the best position or having 2 separate boards. He hates change so it has to be negotiated carefully.
    I bought a dosette from a pound shop for the dog. He makes daily labels and then the label is removed after she has had her meds. It doubles up as a reminder that she has been fed in the morning. Overfeeding by mistake is an issue as she has always put weight on when I am away.
    Luckily my husband is a good passenger and accepts me driving. Your car sounds amazing! If we lived somewhere diffferent I think driving would be a major issue. My mother had Alzheimer’s and stopping driving was a big deal. I know she got lost but always managed to get back and getting lost is more worrying than the actual driving. The thing I worry about most though is that he doesn’t notice things at home and I worry that missing something driving could result in an accident. Anyway, I think we have got away with the driving issue.
    I have an issue with being a carer. Without a diagnosis I still hold out hope that this is depression plus something else going on rather than dementia. Yes, I am still a carer but he could improve. I have always been on the other side of things and would probably try to take over. The attendance allowance discussion was to bring up the possibility of getting someone to call in while I was away but he was adamant that this would not be necessary. It is difficult as where we live does not lend itself to people calling in. He doesn’t know how to use the intercom and most people just phone but he doesn’t listen on the phone and may not realise they need letting in. He can’t use the television other than the basic channel changing, which is another worry. We have always been good at and up to date with technology but he can’t seem to learn to use use new things.
    Thanks for listening!
     
  3. Claire-5000

    Claire-5000 Registered User

    May 1, 2017
    16
    I would forget about Attendance Allowance. You need to demonstrate he has a chronic medical condition that makes him unable to look after himself AND he needs constant help during the day. He doesn't have a documented medical condition so you're not likely to get anywhere.

    If it's not dementia, what is it? That's what I'd be asking the Dr and insisting he gets help for whatever it is. They can't just leave you with "we don't know".
     
  4. Angryperson

    Angryperson Registered User

    Oct 27, 2017
    22
    He would get Attendance Allowance. The test results are enough to demonstrate the need and I have a lot of experience of applying for benefits. This isn’t about money though. That is one of the incredibly annoying things. The tests were administered by a psychology student and one of the results was an IQ of 89. Although in many respects IQ is fairly meaningless, a public school educated Oxford graduate does not have an IQ of 89. An anomaly such as this would make me want to look at what is going wrong here but she just trotted out the results without any further discussion or recommendations other than attending a memory group next year. Next year! 3 months on! Madness! He will see a psychiatrist at some stage but we are still waiting for this appointment. The last time he saw a psychiatrist they did not get on and he wouldn’t engage with him.
    I had a long discussion with the student’s supervisor and she is to write to the GP. He is lovely and understands there is something serious going on but he has referred to the memory service, which is the correct thing to do and would hope that they identify whatever is going on. Someone here suggested a neurologist and I think this is the next step if my husband agrees. However, getting an appointment with the GP of choice is a challenge. I would hold out little hope of an appointment before Christmas! What on earth is this country coming to?
     
  5. Peachez

    Peachez Registered User

    Jun 19, 2016
    45
    Female
    South East England
    It seems that our OH's have a similar background given the education level and IQ (mine was one point short of 'genius' at his peak) you mention Angryperson. Our Cons Psych warned that our path would be atypical because the height our loved ones have to fall, and that the progression would also be different. Also that diagnosis would be more difficult because of his intelligence, he finds it so easy to put on a performance. Living with him is quite another matter.

    I have accepted that I am in the minority with my OH. We don't quite fit the pattern, but he is ill. In the early days I was thrashing about trying to get support for myself & at the NHS to get any other diagnosis, wanting desperately to be able to get to a place where one could say "aha, take this and it'll get better". I succeeded in part, in that the Epilepsy drugs have helped him. The few months before that were frightening indeed. However in the months since he has still declined despite the meds.
    His Grandmother 'lost her marbles', his father had a type of Parkinson's dementia called Progressive Supernuclear Palsy, and my sister-in-law is worried about some of the signs his younger brother is showing. His children don't want to know... oh, they want to know about his Will, but that's all. I helped look after their Grandfather, and cleared his flat after he died, then they turned up at the last minute to take a couple of valuables and ask if they were in his Will too, and how much money would they get!

    Any type of dementia, and there're over 100, is usually a 'clinical diagnosis'. That means it's a process of elimination based on the symptoms observed. There is no definitive test for dementia, it's often confirmed post mortem. There're statistics that suggest that some staggering percentage of people with early dementia (of any type) are just going un-diagnosed. Eventually their behaviour gets so obvious that it's plain to all.

    Can you get an appt in the books and be prepared to cancel it if you don't need it? Our GPs has an online booking system, and we have taken this approach, as I do prefer to see our own GP for the sake of continuity. By the time the apt comes round, I have needed it so have never had to cancel thus far!

    And yes, mine has refused to get a smart phone, he's still on an old Nokia with no internet. My daughters call it a Druggie phone! New tech seems to baffle him these days, and I've seen him struggling with the TV remotes lately. His reluctance to upgrade his phone I noticed years ago - I remember thinking it strange for someone who has worked mostly in computers and has a degree in electronics engineering...

    Have you found a place for your Blackboard yet? maybe the key is for him to remember to look there first, but you will have to keep running round putting the dog lead back for him ?
     
  6. Peachez

    Peachez Registered User

    Jun 19, 2016
    45
    Female
    South East England
    Sorry , Not really sure that my ramblings above addressed your post! As you say, it's just good to get it written down. Having re-read your post, it seems you are in the system, as it were, and if only those letters would arrive and someone would send you an appointment and generally get things moving for you... can you check progress by calling the surgery maybe? It's so frustrating sitting on the waiting bench...
     
  7. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    I hope you dont mind me butting in, but has anybody been thinking of Frontotemporal Dementia (FTD) for your OH? PSP is on the same "spectrum" as FTD and the symptoms are quite different from Alzheimers in the early stages. My OH has FTD and I had been thinking for a while that your OH sounded very like mine. People with FTD and related dementias dont do things like getting lost or repeating themselves or have problems with short-term memory. What they do have is behavoural problems like not washing/changing clothes and getting very angry and they get personality changes. They also have problems with making decisions so that either they make spectacularly bad ones, or they dont make any and descend into apathy. Loss of empathy is a very early sign too.
    Its all very different from the way mum with Alzheimers started. OH is also very high functioning and can compensate for his symptoms well too - at least to an outsider :rolleyes:
     
  8. Peachez

    Peachez Registered User

    Jun 19, 2016
    45
    Female
    South East England
    @canary , you are very welcome! that's an interesting suggestion about FTD. I shall mention it to my GP when I see her on Wednesday.
    I spent quite a time thinking he was heading for Parkinson's, but lacked any of the motor symptoms. He lost his sense of smell well over 10 years ago, and our first tranche of investigations was not long after that because he then developed REM sleep disorder. He was prescribed Clonazepam but refused to take it. I have spent many a night standing bedside the bed watching him thrash about. He's punched me more than once, and had very coherent conversations with me in his sleep, in the morning he has no recollection at all.

    Luckily for me, his current meds damp this all down very well, though we still have some 'twitchy' nights - very noticeably when he is stressed about something. He does have some other symptoms, among them IBS & often not being able to tell if he needs the loo or not; and unpredictable bladder urgency that means he doesn't like to drink, one day I went out and returned after 6pm to find he hadn't had a drink all day... :(
     
  9. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    Interesting that you should mention about the loss of smell, sleep disorder, IBS and not knowing whether he needs the loo or not. Im also a member of a forum specifically for FTD and although these things are not "official" symptoms of FTD, they seem to come up time and time again.
    My OH has IBS, loss of smell, has Period Leg Movement Disorder (rather tham REM sleep disorder), often doesnt know whether he needs the loo or nor - also doesnt know if hes cold, hungry or tired or not either - and gets stimulus overload so that if there is a lot of noise or light you can almost see his eyes glaze over.
     
  10. big l

    big l Registered User

    Aug 15, 2015
    4
     
  11. big l

    big l Registered User

    Aug 15, 2015
    4
    I am reading your posts. I too have a husband with m c I. and i'm struggling. I can't write any more at the moment. but it's helping just to read and know there are people out there who understand, I recognise so much of the behaviour described, I almost feel relieved.
     
  12. Peachez

    Peachez Registered User

    Jun 19, 2016
    45
    Female
    South East England
    @big l : Sending hugs to all.
    Have felt on my own with this for so long, and so relieved to have found @Angryperson and @canary came along and now you too @big l ! :D Do post if and when you can, but it's a comfort just to know you're out there :)
     
  13. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    FTD is frequently misdiagnosed in its early stages. OH was originally diagnosed with depression (due to marital problems, which were my fault, of course!), then MCI then FTD. Ive heard of it being misdiagnosed as bi-polar, late onset autism (!) or a personality disorder. The fact that short-term memory is usually preserved till mid-late stages will often catch people out. Even OHs GP said that he didnt look like someone with FTD - so what do they normally look like? Two heads?! Green skin?!! Actually my OH is spectacularly good at "host mode" and can fool most people, but behind the mask his personality is crumbling.
     
  14. Peachez

    Peachez Registered User

    Jun 19, 2016
    45
    Female
    South East England
    @canary , know just what you mean about 'behind the mask'. Mine is refusing to go out to anything social that is unfamiliar. (If I go on my own I feel somehow unfaithful, does that make any sense)? Yet if it's something he's used to it's fine.
    So he wouldn't go with me to my friends fireworks party last night, went on my own; but today I've been Beaujolais day taxi for him and his two mates (huge cooked brekkie at local pub with a bottle of wine EACH) , he was in full 'host' mode for a good few hours, meanwhile all the the houseworks been done while he was out, I've visited a sick friend and walked the dog. After getting home again, he just disappeared upstairs - hardly said a word to me all afternoon, he hasn't drunk anything for hours even though I've put tea in front of him, forgotten what day it is and got things confused, and has just spilt said (now cold) tea all over the dining room carpet... at least he's happy with a sandwich for tea, so I won't have to cook tonight and my kitchen can stay nice and clean until tomorrow!

    @Angryperson , hope you are doing ok?
     
  15. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    Oh Peachez that sounds so familiar. "Host" mode (aka - fixing on the mask) really takes it out of him and leaves him tired, irritable and confused. My OH retreats to the conservatory and spends hours on his tablet.
    Im afraid that I just let him get on with it - at least its not doing any harm!

    Mind you, I wonder whether the confusion had anything to do with the amount of alcohol consumed :p
     
  16. Angryperson

    Angryperson Registered User

    Oct 27, 2017
    22
    I’ve been really missing hearing from people - I hadn’t refreshed the page!
    My husband is unlikely to have frontal lobe dementia because his personality hasn’t really changed and he isn’t aggressive. My mother had Alzheimer’s that affected her frontal lobe and she had a total personality change and from being a very nice person, she started lashing out and insulting people.
    My father had Parkinson’s and one of issues for my mother was that his legs jerked violently in bed so she had to sleep elsewhere! That was before she developed Alzheimer’s. (Don’t feel sorry for me, I was never a carer).
    My husband has always talked in his sleep and over the years I have had many conversations with him which he had no recollection of and did not believe me until I recorded one. It was great fun but doesn’t happen so often now.
    The exclamation after late onset autism is not as silly a diagnosis as it may seem. There is no such thing as late onset autism but many people are now being diagnosed late in life. There is not enough research on the effects of aging on autism and people but it may be that people who have issues in their life such as anxiety, depression, or just being seen as ‘odd’ or anti social have not been diagnosed. Sensory issues and stomach issues are very common with autism. However, as there would be no treatment, it may not be helpful to be diagnosed.
    It is so difficult when there are so many different presentations and no definitive test. On a happier note, my husband has not been too bad this last week. Antibiotics cleared up the UTI and he is no longer ‘missing’ in the bathroom. His short term memory is not good - I’ve had a bad stomach so wasn’t cooking and I’m sure he had 2 meals tonight - he swears he gave one to the dog!
     
  17. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    Im glad the UTI has been sorted out - infections make so much differance.

    Yes people with FTD can become abusive and angry (the "rage" stage), but can also become apathetic. OH spends hours in the conservatory on his tablet. I suppose I just suggested FTD as in your early posts you said
    It all seemed so similar to OH, so I just wondered.
     
  18. Angryperson

    Angryperson Registered User

    Oct 27, 2017
    22
    Thank you, suggestions always useful. Just wish he would acknowledge there was an issue and work with me. My mother was in denial too when she started, however she had perception problems not the STM stuff. It is so frustrating and like Peachez, I start to wonder about myself, I am so tired....
     
  19. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    I understand.
    One of the symptoms of all sorts of dementia is the inability to understand that there is anything wrong with them. Its not denial, its anosognosia - they are truly unable to understand that they have dementia or that they are unable to do the things they once did. If anyone asks OH why he no longer does any gardening, or cooking, or why he no longer goes to the theatre or anything he just shrugs and says he must be lazy, or that he just doesnt want to anymore. In reality he can no longer work these things out. But when you are faced with this all the time (and he is, of course, absolutely certain about it, he is not making it up) and especially when people are saying that it isnt dementia (because they are thinking of Alzheimers) it is so, so difficult to believe in what you know is true. There are still some days when I wonder about myself.
     
  20. Angryperson

    Angryperson Registered User

    Oct 27, 2017
    22
    I have a friend who has been very worried about her memory for quite a while and her GP kept telling her not to worry because it was not dementia even though to those who know her it was very noticeable. Finally she has had an assessment by the same memory service as my husband and they have diagnosed Alzheimer’s. She was beside herself with worry but seems to be coming to terms with it now. Maybe it is better to be unaware? My husband always said he would kill himself if he got dementia having seen my mother’s situation and I always told him he wouldn’t as he wouldn’t be aware. Sorry, this popped into my mind while lying awake.
     

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