Still no diagnosis after 3 years!!!

[dancer12]

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).

 

[angelhugs]

I spoke to the Psychologist today but she said she couldn’t do anything as he hasn’t been diagnosed. She gave me a number for Relate. I have had to come back home because I was finding it difficult to recover from my surgery with no downstairs toilet and sleeping arrangements. I’m heartbroken because he is still so angry with me and says he doesn’t want anything more to do with me. The hatred he is showing towards me and my daughter is unbelievable. I speak to his sister and I feel like she is starting to believe him too now. I’m the only one who sees what is happening maybe that’s why he hates me so much. I will go and see our GP even for my own benefit but I think I am going to have to step back and leave things to get worse and someone else has to do something about it. I’ll just have to let him be as he thinks I am trying to control him. I know he is bad mouthing me to his family and they no nothing about all the testing and MRI results. My life wouldn’t be worth living if I told them. I know it will only be a matter of time but I wish we could have the help now. I just feel so hurt, all I have ever done for him the last 45 years is love him and care for him. It’s just so unfair, I’m heartbroken
Love and hugs ❤️Xxx

 

[angelhugs]

I spoke to the Psychologist today but she said she couldn’t do anything as he hasn’t been diagnosed. She gave me a number for Relate. I have had to come back home because I was finding it difficult to recover from my surgery with no downstairs toilet and sleeping arrangements. I’m heartbroken because he is still so angry with me and says he doesn’t want anything more to do with me. The hatred he is showing towards me and my daughter is unbelievable. I speak to his sister and I feel like she is starting to believe him too now. I’m the only one who sees what is happening maybe that’s why he hates me so much. I will go and see our GP even for my own benefit but I think I am going to have to step back and leave things to get worse and someone else has to do something about it. I’ll just have to let him be as he thinks I am trying to control him. I know he is bad mouthing me to his family and they no nothing about all the testing and MRI results. My life wouldn’t be worth living if I told them. I know it will only be a matter of time but I wish we could have the help now. I just feel so hurt, all I have ever done for him the last 45 years is love him and care for him. It’s just so unfair, I’m heartbroken
Love and hugs ❤️Xxx

Hi again dancer12,
Your words rang in my head last night. Like you now I am the sick one, I have got a mental illness, there is nothing wrong with him or his behaviour it’s all me. Am I imagining it all?!!!

 

[dancer12]

I spoke to the Psychologist today but she said she couldn’t do anything as he hasn’t been diagnosed. She gave me a number for Relate. I have had to come back home because I was finding it difficult to recover from my surgery with no downstairs toilet and sleeping arrangements. I’m heartbroken because he is still so angry with me and says he doesn’t want anything more to do with me. The hatred he is showing towards me and my daughter is unbelievable. I speak to his sister and I feel like she is starting to believe him too now. I’m the only one who sees what is happening maybe that’s why he hates me so much. I will go and see our GP even for my own benefit but I think I am going to have to step back and leave things to get worse and someone else has to do something about it. I’ll just have to let him be as he thinks I am trying to control him. I know he is bad mouthing me to his family and they no nothing about all the testing and MRI results. My life wouldn’t be worth living if I told them. I know it will only be a matter of time but I wish we could have the help now. I just feel so hurt, all I have ever done for him the last 45 years is love him and care for him. It’s just so unfair, I’m heartbroken
Love and hugs ❤️Xxx

Hi angelhugs:
I really do feel for you. Your life must be in a total upset right now.

Hi again dancer12,
Your words rang in my head last night. Like you now I am the sick one, I have got a mental illness, there is nothing wrong with him or his behaviour it’s all me. Am I imagining it all?!!!

Hi angelhugs:

It's not you, it took so long for all the professional people, the Alzheimer society, his doctor, to convince me it wasn't me but him. He was so sweet & kind to all of them, but the tests (particularly the MRI) could not be disputed. It was a psychiatrist who brought down the final diagnosis and she was spot on. Like I said earlier she diagnosed him @5 years ago and he just started showing actual symptoms until this year. So for 4 years I believed it was me. I believe it was because he was in good physical shape, he always took care of himself, that he could fool so many people. He was smart also. But this year he is starting to lose weight, his walking is much slower, is speech is worse, he is hunched over, terrified of falling and is much, much angrier. It is usually directed at me and it's taking a lot out of me. He needs 24/7 care so I have to be here all the time, unless I get a caregiver to watch him for a few hours. He does get personal care - showering 5 days a week for an hour but what can you do in an hour -walk to the store & back. And so I pray he goes tp bed early & I have a few extra hours of time for myself. Thank GOD for TV & baseball (he enjoys watching baseball on tv).

Take care, good luck, all the best, sending many hugs & much love. I'm trying to find the good in this situation but it's getting more & more difficult by the minute.

 

[angelhugs]

Hi angelhugs:
I really do feel for you. Your life must be in a total upset right now.

Hi angelhugs:

It's not you, it took so long for all the professional people, the Alzheimer society, his doctor, to convince me it wasn't me but him. He was so sweet & kind to all of them, but the tests (particularly the MRI) could not be disputed. It was a psychiatrist who brought down the final diagnosis and she was spot on. Like I said earlier she diagnosed him @5 years ago and he just started showing actual symptoms until this year. So for 4 years I believed it was me. I believe it was because he was in good physical shape, he always took care of himself, that he could fool so many people. He was smart also. But this year he is starting to lose weight, his walking is much slower, is speech is worse, he is hunched over, terrified of falling and is much, much angrier. It is usually directed at me and it's taking a lot out of me. He needs 24/7 care so I have to be here all the time, unless I get a caregiver to watch him for a few hours. He does get personal care - showering 5 days a week for an hour but what can you do in an hour -walk to the store & back. And so I pray he goes tp bed early & I have a few extra hours of time for myself. Thank GOD for TV & baseball (he enjoys watching baseball on tv).

Take care, good luck, all the best, sending many hugs & much love. I'm trying to find the good in this situation but it's getting more & more difficult by the minute.

Thank you again dancer12, I am definitely going to tell our GP about the anger and rage, it is just so out of proportion and I have told my husband it is not normal and totally unacceptable. I’ll keep you posted. For now we will both carry on. Thinking of you, sending love and hugs xxx

 

[dancer12]

Thank you again dancer12, I am definitely going to tell our GP about the anger and rage, it is just so out of proportion and I have told my husband it is not normal and totally unacceptable. I’ll keep you posted. For now we will both carry on. Thinking of you, sending love and hugs xxx

Glad to hear you are okay, I was starting to get a little worried with him being angry at you.

Take care & stay safe (with a working cell phone and a room with that can be locked if necessary).

Sending many hugs & love.

 

[angelhugs]

Glad to hear you are okay, I was starting to get a little worried with him being angry at you.

Take care & stay safe (with a working cell phone and a room with that can be locked if necessary).

Sending many hugs & love.

I have just got to try and realise I can’t expect anything from him as he is unable to cope. The rage and anger is when he becomes overwhelmed. It’s lonely though.
Love and hugs xxx

 

[Ruth1974]

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.

Yes, i remember those days. 5 years after first taking him to the gp we got a diagnosis. They saw him every 3 months for 3 years and kept saying that he had a slight gap in one area of his memory. In the end i kept a diary and wrote an email summarising symptoms over the last month:

He has been watching Homes Under the Hammer on a loop for the last 6 hours.

He went to a poultry auction in Carlisle but came back 14 hours later with the same ducks he set off with, having been to Skipton.

He smells, never bathes or brushes his teeth and rarely changes his clothes.

And so on.

1. Professional, educated people are very good at passing tests.
2. If you put the symptoms in writing

they can't fail to take it seriously
But remember this:

3. A diagnosis maked very little difference. They can't cure it and even though you 'know', being told is still horrific.

 

[PJ]

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

Hi just been reading through your posts. I was diagnosed last year with FTD after 2-3 yrs of tests & scans it was a spect scan that showed FTD whereas both the mri & cat scan were ok? Very odd. I hope you & your partner are ok.
I used TP lots prior to my diagnosis & have always found everyone very supportive & helpful I hope you do too.

 

[dancer12]

I have just got to try and realise I can’t expect anything from him as he is unable to cope. The rage and anger is when he becomes overwhelmed. It’s lonely though.
Love and hugs xxx

Hi angelhugs:

What boggles my mind & don't understand is how they are able to fool so many people. I still look at him sometimes and have to shake my head two or three times in order to believe I'm not the one with dementia. The symptoms are just not always there, it's so confusing. Love & Hugs

 

[angelhugs]

Yes, i remember those days. 5 years after first taking him to the gp we got a diagnosis. They saw him every 3 months for 3 years and kept saying that he had a slight gap in one area of his memory. In the end i kept a diary and wrote an email summarising symptoms over the last month:

He has been watching Homes Under the Hammer on a loop for the last 6 hours.

He went to a poultry auction in Carlisle but came back 14 hours later with the same ducks he set off with, having been to Skipton.

He smells, never bathes or brushes his teeth and rarely changes his clothes.

And so on.

1. Professional, educated people are very good at passing tests.
2. If you put the symptoms in writing

they can't fail to take it seriously
But remember this:

3. A diagnosis maked very little difference. They can't cure it and even though you 'know', being told is still horrific.

I know @Ruth1974 but if my husband gets a diagnosis at least it can’t be denied anymore, his family will have to know and I won’t have to cope alone. It will be me who has to take it all on but at least other people will know instead of just me.
Sending love and hugs xxx

 

[Susan11]

I found the diagnosis made no difference to anything. The memory clinic gave Mum Mementine which the CH said made no difference so the Memory clinic just discharged her. They informed the CH but never contacted me even though they had my address and phone number as next of kin.

 

[angelhugs]

I found the diagnosis made no difference to anything. The memory clinic gave Mum Mementine which the CH said made no difference so the Memory clinic just discharged her. They informed the CH but never contacted me even though they had my address and phone number as next of kin.

That’s unbelievable @Susan11 Why is there always adverts saying if you notice your loved one having forgetful moments report it right away to your GP. You do and no one listens or takes you seriously. The earlier they get the help the better...more importantly we need the help as it is us who has to deal with them every day. I hope you can get some help. The Memory Clinic I went to with my husband had a Psychologist who I also seen alone and if he had been diagnosed she would have seen all our family to support us through it. Can you check with the Memory Clinic if they have that service. This forum has really opened my eyes, it’s heartbreaking listening to what you are all going through. It’s like luck of the draw whether you get the right Doctor. Thinking of you, sending love and hugs xxx

 

[dancer12]

Hi All:

Getting a proper diagnosis not only helps them but more so helps us getting the help we desperately need. It's not an easy journey.

 

[Susan11]

That’s unbelievable @Susan11 Why is there always adverts saying if you notice your loved one having forgetful moments report it right away to your GP. You do and no one listens or takes you seriously. The earlier they get the help the better...more importantly we need the help as it is us who has to deal with them every day. I hope you can get some help. The Memory Clinic I went to with my husband had a Psychologist who I also seen alone and if he had been diagnosed she would have seen all our family to support us through it. Can you check with the Memory Clinic if they have that service. This forum has really opened my eyes, it’s heartbreaking listening to what you are all going through. It’s like luck of the draw whether you get the right Doctor. Thinking of you, sending love and hugs xxx

Thank you for your message.
My Mum's care home can manage Mum (94) without any problems ...at least not ones they are reporting to me ...i am an only child so I have no siblings to convince and Mum is self funding so there are no arguments about who is paying. My experience is that there is little that can be done with medication to help Mum. She needs to live in a caring and sympathetic environment which the Care home provides. Best wishes Susan

 

[Tanya92]

It took me almost 3 years to get a diagnosis for my mum. She was great at lying to doctors and when they asked for my dads opinion, although he is classed as her direct next of kin, they were living very separate lives. He was also very naïve about what dementia was. I was in my third year of university having just seen my nan (my mums mum) pass away with the disease and was studying dementia as part of my psychology degree, I was convinced she was showing early signs but no one would listen! I wrote a letter to my mums psychologist detailing my opinions but also attached a log. I detailed all the symptoms I'd seen ensuring I gave a date, time and the behaviour i.e. 29/07/2019 at 14:15 asked me what we were watching on TV, 29/07/2019 at 14:18 repeated herself and asked what we were watching on TV. It was the only way I could get them to listen. As my mum hadn't had the diagnosis there were lots of difficulties around confidentiality and what I could be told about her appointments. They're always hesitant to diagnosis in case the memory concerns were related to anxiety and/or depression. Anyway, the log and letter was helpful and was the catalyst for the CT which led to her diagnosis. Good luck!