1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. poppy3838

    poppy3838 New member

    Mar 19, 2019
    #1 poppy3838, Apr 18, 2019
    Last edited: Apr 18, 2019
    My hubby is in his 60s and for a few years not been quite right . He has had a few seizures with hallucinations of insects and a religious figure/man, 18 months ago, and as all scans blood tests came back normal, he heard the word normal and is now convinced that he didn't have a seizure ( he had 6 in a 5 day span) and that there is nothing wrong with him and its me that wants him "mental". :( He loses things all the time , accuses me of having hid them, taken them or someone including family have been in and stolen them, he ransacks the house looking for the items missing/mislaid and certainly not stolen or taken, when he finds them he says I do need help don't I?. So I say yes you do my love, so we have just visited the GP been sent to the memory clinic, he had some tests which the lady said he did ok ish in them, but he was aware that he couldn't do the drawings that was asked, he also couldn't correctly count backwards, he could remember part of the address that he was told, so he was aware that he could do some of the things asked of him and he was embarrassed I told him it wasn't an exam that he had to pass , it was just a little test so that they could see what area he needed help in .. He was happy with that, He is now awaiting an MRI scan, which is next week and then 6 weeks later we should hopefully be seeing the consultant.He didn't tell them about the seizures at the memory clinic and firmly told me that I wasn't allowed to tell them either, but I asked for advice and wrote to them without his knowledge and hopefully in confidence as I know they need all the info to make the correct diagnosis. I feel in a way I have betrayed him, but I have only done this in his best interest and for his wellbeing. He accuses me off allsorts of things. he gets jealous of my son in law when he visits with my daughter. He even wants to know things like how many slices of meat we have incase I give some to my family and leave him out or give some to my son in law and favour him?? which I would never do. he says he doesn't do this and its all in my mind, but I "know" what he is thinking, which is absolutlely ridiculous and very hurtful as I am a very loyal wife and my son in law is so young that I love my family visiting but it becomes a dread too and I am a bag of nerves .It is just so ridiculous to suggest. It upsets me deeply and makes me feel so low and ill at times He wants to know why his friend and his brother telephones when he is out?. I say they rang to speak to you but I told them you weren't here till later. so he says but why do they ring when I am not here?. I say they rang to speak to YOU!. He makes lots of similar accusations too many to list but they are hurtful and all pointing to me having some sort off affair. If someone knocks on the door he runs the other way as he doesn't know who it could be, instead of going to the door to see who it is. He cannot remember passwords and codes for any bills or banking so I had to write them in a book for him so that he doesn't forget, but then he lost the book and cant find it and thinks I have hid it and am hiding something from him and when a bill goes out of thee bank he thinks that the bank is scamming him and ripping him off. He hoards things in his wardrobe and I can t believe the mess it is in but he refuses to let me sort it out as its HIS stuff, and he doesn't want me stealing it, or throwing it away. He wont take his meds that he should for his heart problems but he will take as many vitamins as he can get his hands on as he says they do him good. One minute he eats and binges the next he asks for a big meal then pushes it around the plate saying he has no appetite. He clenches his teeth and fists and his eyes go wild when he cant find things and loses them I just have to sit back and let him turf drawers out and cupboard s etc till he has calmed down, but at no point do I feel threatened I know he would never hurt me. I just put distance between us and let him get on with his search. and then when he has found it I sit with him and say now think of it logically who would actually want that item, who would break into our house to steal that item surely they would have taken something of much more value and would they actually benefit in any way by taking that item. Then he says he cant believe the way he acts and he is sorry , and will be fine for a while, maybe if I am lucky it could be for a whole day! :) He cannot follow instructions , like when the doctor asked him to cough then cough harder my hubby blew hard. Then lifting his jumper and turning his back on a consultant when the consultant asked for him to lift his jumper to examine his abdomen?. He always took pride in his appearance Now I have to remind him to shower shave, and he wont have a haircut it has now grown so long and he doesn't comb it ..,.There soo many things too many to write on here .. I am so worried that we will get the MRI scan done and all tests will come back as normal, I know that sounds bad but I do mean it in a good way.. I just don't want him hearing that word "normal" again and then going back to where we started by him saying that it is me, all in my mind. It is so not in my mind. I worked in care of the elderly for over 25 years so I know there is something wrong, It is so much more difficult looking after someone you love, of your own family .. I hope for a clear MRI scan which would be great, but don't want the consultant to just discharge him as I know I will never get my hubby back to see anyone again over this problem and I am struggling with it all and am exhausted. I have physical illnesses myself and am drained.. Some days he is ok and the others its like treading on eggshells a ticking time bomb. Even his facial expressions tell me if he is in for a bad day, What can I do or say to the consultant if everything comes back as "normal" , On his scan when he had the siezures the results were normal which as I say was 18 moths ago...So please , I just soooo need advise on how to help him get the treatment/diagnosis and hopefully get my lovey hubby back .. So sorry for the extra long post but I haven't confided in any of my family, although I do know that they "know" something isn't quite right as they keep asking is he ok as he isn't himself. So thankful for any advice. Xxx
  2. marionq

    marionq Registered User

    Apr 24, 2013
    You need to keep a diary of those things which concern you. Bullet point them for brevity and conciseness and give them to his consultant before the appointment.
  3. poppy3838

    poppy3838 New member

    Mar 19, 2019
    Thank you for that. yes I will. xx. :)
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @poppy3838
    I agree with marionq, the consultant, and your husband's GP, need as much background and context as you can provide, with a comparison of how your husband was 2, 3 years ago .... I'd send a copy of your post post here too as it's evidence of how you are being affected by these behaviours ... try to get the info to the consultant a few days before the appointment so they have time to digest it, on the day there may only be chance for a quick skim read .... seems to me, if dementia isn't at play something else sounds to be and your concerns need to be heard
  5. vmmh

    vmmh Registered User

    Jun 25, 2018
    Poppy3838, your husband, and by default you, are very deep into the world of dementia. All the behaviors you describe are classic signs of the disease. I am very sorry for both of you. It will be a difficult ride from now on for both of you but especially for you since you will remember all the events and feel all the losses deeply.
    Remember that he has a illness and would not treat you and family members so if he could help it. You will not be able to help him "make sense" of his thoughts and fears. it will drive you crazy to try to bring him back into your world. You must accept that he lives in a different world and can not find his way back.
    Please do list his behaviors as others suggested and give them to the consultant, care provider. The MRI should show signs of disease but not always. Events and behaviors will contribute greatly to the diagnosis.
    Stay linked to this forum and post as often as you can for support. Remember that he loves you...
  6. charlie10

    charlie10 Registered User

    Dec 20, 2018
    I do so understand your frustration and distress Poppy.....we just managed to get a Memory assessment for FiL and the doctor has declared no dementia, just age related stuff with delirium from his hospital stay. He did well in the tests but his main symptoms are behavioural and I think he managed to beon his best behaviour during the visit. He had an MRI last year which showed severe cerebral atrophy, but this assessment business seems somewhat hit and miss. The no-dementia verdict makes it harder in a way to move on, especially as it would make it easier for family to accept strange behaviour and acknowledge the seriousness of the situation if there was the label to hang on it. I do sympathise, please stay with the forum, people are so very kind and understanding
  7. 70smand

    70smand Registered User

    Dec 4, 2011
    I would definitely show the dr your post. This sounds a lot like my dad in the early days before he was diagnosed with Alzheimer’s. He never really accepted his diagnosis and my mum was scared to mention anything in front of him. During his clinic appointments he would give the impression everything was fine and look daggers at my mum if she said anything to the contrary. I could not talk to my mum in private as he was paranoid. I used to forward a message to his consultant prior to every meeting in confidence saying how things really were. I really wish you the best x
  8. padmag

    padmag Registered User

    May 8, 2012
    I really feel for you that was me about 8 years ago. When richard received his diagnosis I adopted a different approach especially with all the good information on this site. People here know what they are talking about. I managed to view him differently as he has an illness and wasn't being purposely difficult with me. I have more patience with him, but it took a long while for me to accept that this was our life from now on. If you keep reading on here and turn to this site for specific questions someone will help or have been in a similar situation. Wishing you all the best.

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