Still no diagnosis after 3 years!!!

Discussion in 'I have a partner with dementia' started by angelhugs, Jul 9, 2019.

  1. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Where do I go from here? I finally got my husband referred to a Memory Clinic after 3 years. He seen the Doctor and had many sessions of testing with a psychologist which showed major problems. The MRI showed Global Cortical Atrophy with a score of 2. My husband managed to blag the Doctor into thinking he is functioning normally so he said he couldn’t give a medical diagnosis of dementia and discharged him! The Doctor asked me about him in front of him so I couldn’t be honest because it would have embarrassed him and undermined him. Why would the Doctor do that? My husband convinced the Doctor he is running 3 businesses independently!!! The Doctor did say his results didn’t match the fact he is functioning normally but still discharged him. I know he’s getting worse and a scan can’t lie. He is a charmer and can talk the talk and the psychologist didn’t see through him either at first but how can an experienced Dementia Doctor be fooled.
    I can only think he’s never come across anyone like him before as he is a Psychiatrist dealing with old age dementia. The appointment ended up like a lad’s night out talking about football. I’m worried how fast things will progress without treatment as his MRI 2 years ago was normal. I’m just in shock.
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,727
    Salford
    I don't think there is any treatment for his condition as such and it's quite normal for them to discharge back to the gp after diagnosis.
    K
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,837
    Female
    South coast
    When OH has doctors appointments I always write a letter explaining what OH is like and what he now has trouble with and my concerns. I hand this in discretely to the receptionist when we arrive and ask them to give it to the doctor so that I dont have to say in front of OH. I also sit a bit behind him so that OH cant see me, but I can silently shake my head if I dont agree with the things that OH is saying and he doesnt see me.

    I know its a bit late now, but you could write a letter explaining that your husband is not as good as he thinks he is and explaining the true situation. You could ask whether this will affect the diagnosis. It might get you another appointment and you can write another letter then.
     
  4. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    I just feel so frustrated because I had appointments on my own as well with the psychologist and completed questionnaires regarding changes in my husband over the last 10 years which
    I probably was too kind. However
    he still scored really low. I was mortified when the Doctor brought this up in front of my OH, luckily he has forgotten otherwise my life wouldn’t have been worth living!
    I don’t trust this Doctor now in case he speaks in front of him. I think I will speak to my GP who referred him originally. I know he will be shocked that he hasn’t been diagnosed with anything and he seems more understanding about the way he covers it up. I just thought a specialist in a Memory clinic would know better. Thanks for sharing your experiences.
     
  5. SoAloneIn Suffolk

    SoAloneIn Suffolk New member

    Jul 9, 2019
    6
    Hi, I had the same problem with my spouse - no official diagnosis despite two years of trying. In the end she was referred to the local Community Mental Health clinic where she was seen by a Consultant Psychiatrist. If that happens in your case, you then need to insist (firmly but gently!) that you require a written official diagnosis.

    I managed to get that in the end and it does open up avenues. The important thing is it needs to be a letter written by a Consultant Psychiatrist. Hope this helps...
     
  6. dancer12

    dancer12 Registered User

    Jan 9, 2017
    450
    Mississauga
    Hi angelhugs:

    Something is definitely wrong. When my husband had the appointment with the doctor at the memory clinic I spoke to her assistant and he asked me various questions about his background, etc. The 2 doctors later consulted with each other and came up with diagnosis. After that the wheels were put in motion. ASK for a special consultation with this doctor (without your husband) and explain what has been going on. You have a right to know what is happening to your husband. His condition might not be as bad as you think or it might be worse, either way you have a right to know because you will need help in future as much as he does. Tell him (the doctor) you need to know so you will know how to proceed, make sure a power of attorney is in place Take Care & Good Luck.
     
  7. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thank you so much for your reply, I worry so much about him but he becomes so nasty to me. I get abused for caring about him. He has said such nasty things to me and then ignores me for days. I feel like running away.
     
  8. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thank you for your reply I am at the end of my tether. All I do is care and worry about him and all I get is abuse. He hasn’t been diagnosed so I don’t know whether it is him or the illness. I want to run away.
     
  9. dancer12

    dancer12 Registered User

    Jan 9, 2017
    450
    Mississauga
    Hi angehugs:

    It is an awful disease to begin with but then to top it off he is s nasty to you, it hurts, it really hurts. You do everything you can to make them feel special and then you get abused. Nobody deserves to be abused & taken advantage of. Talk to his doctor (alone), send an email, send a letter & copy the memory clinic Explain how he treats you. VERBAL ABUSE MORE OFTEN THAN NOT TURNS INTO PHYSICAL ABUSE Be careful. Get some help & take care of yourself. Inform your kids, if possible, maybe even the neighbours. Protect yourself. My son is living with us so when he hears loud voices he comes running.

    . My husband only talks to me when he needs something, then he's as sweet as pie. He talks & laughs with his psw's who are only there with him for an hour a day meanwhile I'm here 24/7 and I don't even get a How are you? It hurts and I can't forget the pain. They don't remember from one minute to the next but our pain lingers on.
     
  10. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Hi Dancer12,
    Thank you for your reply. It’s so hard isn’t it when they are nice to you again because that is the person you love? Sometimes I think it would be easier if he was horrible all the time and then I wouldn’t feel guilty if I left him. It’s just I see the vulnerability come through and I melt again. It’s so hard him not being diagnosed because all he remembers is the doctor says “there is nothing wrong with me.” I am scared of going behind his back now because my life would not be worth living if he found out. Our GP is great and really understands and has asked me to come in with him.
    I managed to get an appointment over a med review but he said he doesn’t need me with him!!! He’s going today I’ll just have to hope for the best. He probably won’t remember what the doctor says! It’s mad because on the outside he looks like he’s living normally to everyone. He goes to our business every day, driving but it is routine he has done for years. I oversee all the business and he has people doing everything anyway. Surely people have noticed his memory but I’m too scared to ask them. I’m worried sick when he’s out driving but if I ring him it causes murder even though it’s only because I care. He just seems to forget about me when he goes out the door which really hurts me. All I do is pray he comes home safe. Thinking of you and thanks for sharing. Sending love and hugs xxx
     
  11. dancer12

    dancer12 Registered User

    Jan 9, 2017
    450
    Mississauga
    Hi angelhugs:

    It's just such an awful disease. My husband was the same way when first diagnosed, he always kept himself physically fit, he was tall, nice smile, always cared for others, wonderful personality, good at his supervisory job, good motivator, well spoken, etc. etc. etc.. I actually couldn't believe it I even convinced myself he had a twin brother. He had me fooled for so long but he couldn't fool the physchiatrist. I think the MRI he had of his brain actually told the true story.
    Many doctors are not experienced enough in dementia to make an accurate diagnosis however the doctor at the Memory Clinic should have. I'm really surprised at that but maybe he was new or was having a bad day or your husband was very convincing, whatever you need a second professional opinion. I asked his doctor to refer him to a neurologist (head specialist) and he ran all the necessary tests to make a proper diagnosis, WHICH IS WHAT YOU NEED. you need a proper diagnosis which will get the ball rolling, so to speak. Good Luck:)
     
  12. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thank you dancer12,
    My husband actually let me go to see the GP with him yesterday and our GP has really took it seriously. He must have been in touch with the Memory Clinic and the Doctor will see him again when he has any more changes. The only problem is they will have to be on my say so. How do you tell such a proud man that I love so much that he is losing his mind and not coping. It is only me who sees it...I think...but definitely only me who will have to point it out. I was thinking of keeping a diary with him of incidents so he doesn’t think I am plotting against him. If I point things out as we go along he won’t remember. He is as you say your husband was fit, popular and a well respected business man. I just find it so difficult to tell him what he’s doing, and I feel disrespectful talking about him to the Doctor especially in front of him. Was your husband put on medication? What type of dementia does he have?
    Sending love and hugs xxx
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,837
    Female
    South coast
    @angelhugs - keeping a diary is a very good idea, but your husband may not believe things that you write, so you may have to do it in secret. My OH used to accuse me of taking him over and making up stuff so that I could control him. He wouldnt let me go to appointments with him (although he will now) even though, like your husband, he couldnt remember what the doctor said and he would also tell the doctor a pack of lies.

    The doctors need to know the truth of what is happening, though. In some forms of dementia, like Frontotemporal Dementia (FTD) changes in personality and behaviour are main early symptoms and reports from family/close friends are very important in making the diagnosis. If he wont let you go into the appointments write a letter to the doctor and send it in advance of his appointment and explain why you have done this. If you keep a diary this will help in telling the doctor what you are seeing.
     
  14. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thankyou canary,
    It was as comforting to hear about your experiences. Like you I get accused of trying to control him which makes me reluctant to tell him or the doctor what he is doing. I don’t want him to be diagnosed because of what I say I would be blamed forever. I get the blame for everything as it is. Why couldn’t the Doctor see through him, the lies just roll off his tongue!!?? I just wish it was taken out of my hands.
     
  15. Lawson58

    Lawson58 Registered User

    The years prior to my husband getting his diagnosis were dreadful. He was totally paranoid at the slightest suggestion that he had any problems and it took a year and the support of our GP to get him fully assessed.

    The day he was to see the geriatrician was so awful because he was adamant that he wouldn't allow me in for the consultation with the geriatrician. However, the geriatrician had seen all this before and when I phoned his rooms with news that my husband had banned me, they told me to come in early so that I could have a chat with the geriatrician before OH 's appointment. So I was sitting there waiting for him when my husband arrived and he was very nasty and surprised when he saw me.

    I think it was particularly painful because only six months earlier he had a cardiac arrest at home and I saved his life by giving him CPR.

    He has become very dependent on me to get him to all his appointments and take care of his many health issues that he likes me to see his doctors with him. That's because he can't remember what they tell him.

    So I know it's hard to work through this time. Your husband is in complete denial about his issues but eventually you will get someone to see what you do.
     
  16. dancer12

    dancer12 Registered User

    Jan 9, 2017
    450
    Mississauga
    Hi angelhugs:

    My husband was diagnosed @5 years ago with frontotemperal dementia. It affects reasoning , understanding, empathy, behaviour, communication plus a whole bunch of other things. it is also affecting his speech and hearing. He has difficulty finding the right words. Where all this came from I haven't a clue. He gets angry and he keeps saying he wants to be normal again. I know it hurts him because he was always proud of his accomplishments. Now he can't even answer the phone. I can't say much because I am worried that his behaviour will turn towards me.
    I'm glad his doctor is listening, that is one of the biggest hurdles.Upon diagnosis you will not only get help for him but for yourself as well Be prepared because chances are he won't accept it and won't want anybody to know. I don't really talk to him about his dementia because he won't acknowledge it, he gets angry and says it's me who is the sick one. I just let the doctors worry about it. He is on the prescription donepezil 5mg. This past year he has been experiencing short term memory loss, so he doesn't remember what happened from one minute to the next.
    So far I've learned not to argue with him and to take things one day at a time, no more planning for a future together. Stay strong & take care. Many hugs & love coming your way.
     
  17. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thank you so much for your reply dancer12. It is so hard for me at the moment, no diagnosis but his behaviour is becoming out of control. I’m actually afraid to go near him, he gets so angry he scares me. His MRI scan didn’t show atrophy that related to FTD or Alzheimer’s it was Global Cortical Atrophy measured at a scale of 2 which is moderate. I’ve read the highest is 3 which is severe. I don’t think I can stay around much longer the way things are. It’s getting worse I don’t know who he is sometimes. Then the man I know and love comes back.
    Thinking of you, love and hugs xx
     
  18. dancer12

    dancer12 Registered User

    Jan 9, 2017
    450
    Mississauga
    Hi angelhugs:

    We never know what to do do we. We just hope & pray for the best. We do what we can, but it's never good enough for them. Sometimes I think it's worse on us than on them. Depends on the stage I guess. if we leave we feel guilty, if we stay we feel unloved, unwanted, under-appreciated, uncared for, and the list goes on and on. so I stay & pray. What I pray for I don't know but I pray & hope GOD hears me.:) Take care & All the best with many hugs & lotsa love.:):)
     
  19. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    All I do is pray too, pray and pray more. I hope you have someone you can turn to.
    I have had to come and stay in my daughter’s it got so bad last night. I had a foot operation on Friday so I need the help and he just resents me. He gets so angry I felt scared and so vulnerable needing help myself. He told me last night he wants nothing more to do with me and went in the spare room. Then this morning he was phoning around wondering where I was. I’m going to stay away for a while and leave him to get on with it. Maybe he’ll realise how much he needs me...probably not and just get more angry. He accused my daughter and I of plotting against him and said we are a double act planning everything together against him. He shows so much hatred towards me and my daughter but can also be the most kind caring man. I feel like something more has happened over the last few weeks because he struggles a bit with his flow of conversation which he’s never had a problem with before. We never know When more of their brain dies off. I know he must be scared but I can’t help him if he won’t admit he needs help. It’s heartbreaking. I will think of you in my prayers, sending love and hugs xxxxx
     
  20. dancer12

    dancer12 Registered User

    Jan 9, 2017
    450
    Mississauga
    Hi angelhugs:

    I'm so sorry things have gotten this bad. I hope his doctor & the memory clinic are aware of this behaviour. I am so scared for you. I'm not a doctor and definitely not an expert but it sounds like paranoia has started to set in. My husband has difficulty with his speech whereas he can't find the right word and therefore a sentence seems to take forever for him to put together. He feels people will make fun at this difficulty so at times he just listens and doesn't say a word and then he gets angry at me. I understand now that he doesn't get angry at me but at himself. I strongly believe that he is mad at himself with all his anger and unfortunately, like you and I'm sure many others, I have become the receiver.,

    Take Care, All The Best & MAKE SURE THE DOCTORS KNOW ABOUT HIS BEHAVIOURS (ALL BEHAVIOURS, NO MATTER HOW SMALL).
     

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