What do we do ?

onix

Registered User
Aug 1, 2014
5
0
Since my last post in Aug 2014 , things have not changed at all , so where do I start ? , well my husband is 49 years of age and at the end of Aug, last year when we had our last visit at the memory clinic to be told what the results were of my husband’s memory tests , but before I go into this let me say that we was told many times that my husband had tried so hard in these tests and that’s why he was so exhausted at the end of them , anyway back to what I was explaining on the last day of the tests we was told by the Trainee clinical Psychologist that all the tests that my husband had done the scores were very low across all the tests and that they can’t be right because if they were correct he would need permanent care she then back tracked and said perhaps he did no try hard enough during these tests and that’s why the test results were so low ?? And that perhaps he should take more responsibility at home with things like finances to help him, at this point I just could not believe what she was saying , the reason I had to take care of things like finances in the first place was because he would forget to pay any bills etc. which obviously caused problems let alone with all the things that was going on with his memory e.t.c , her attitude on the last day was just very abrupt and rude and also suggested that perhaps his panic attacks that he suffered from years ago played a big part with his memory problems ,

Well I went home with my husband and had to take this in first , after a day or two I decided to make an official complaint concerning this and the contradictions in what she was saying , they did look into this but it took them such a long time to do so , to cut this bit short their reply was basically that they just cannot understand why the results of the tests were so low and that perhaps his concentration played a big part in it even though he had tried so hard , I had already told them before the tests started his concentration was just terrible , but when he was being tested they insisted that he had tried so hard (how confusing) as for the finances etc. they said even though she had said that he should try and take more responsibility for the finances and other things etc. that she did not quite mean it in that way ,

After a few months my husband was given an appointment to go and see one of their specialists , when we arrived there was several people there who deal with Alzheimer’s and other mental health issues , we were there for some time discussing his problems and they said even though his scores were so low it could be attributed to other problems like stress etc. or lack of sleep which he does suffer from , my husband finds it so difficult to sleep he only gets a few hours’ sleep a day and that at this point they just cannot say if it is Alzheimer’s or not and that they would like to send him for more tests ,
My husband had lots of blood tests to rule out other causes which all came back ok and also an MRI scan which came back ok and we was also told we would have a home visit from another specialist , i have cut this down a bit to make it more readable ,
When we had the home visit My husband was asked to do more written and visual tests which took about 30 minutes after the tests we was told that the test are still coming back very low , the specialist that came for the home visit also suggested that stress could play part in what was going on in his life and well as his sleep deprivation , and that he would write back to his colleague and suggest a change in tablets and suggest a few new ones ,

At this point I need to say my husband did suffer from panic attacks for some years on and off but have been under control for a few years , we was asked about depression by the specialist and me and my husband tried to make it quiet clear that at present depression was not a problem ,

About four weeks later we heard from the main specialist and that they had recommended a change in tablets to try

The tables are :

Mitrazapine

Pizotifen

Amitriptyline

Ok regarding the above medication I do know what they are for they gave him the Mirtazapine to see if it is depression that is causing his symptoms even though we have said he does NOT suffer from depression even though the memory problems and concentration e.t.c does get him frustrated but it is more frustration than anything
The Pizotifen is for constant headaches , my husband suffers from permanent headaches due to suffering from cervical spondylosis

The amitriptyline was prescribed to see if they would help him sleep

The pizotifen have helped greatly with the constant headaches but the other tablets have made no difference at all

He is still suffering with memory relapses daily and can never remember where he has put anything or what he was doing or was going to do he cannot recall what he was doing half an hour ago, he repeats himself alot , his concentration is still bad , he does try to avoid social interaction with people because sometimes he just cannot find the right words when talking even though he knows what he wanted to say , he does become very snappy sometimes but just as quick calms down and just doesn’t see what the fuss is about afterwards he has a loss of spontaneity and takes much longer than he used to doing things and sometimes has bad judgment when doing things

Sorry if this post is a bit long but I am at my wits end right now and do not know what to do .

Well my husband has now been on these tablets for a while now and now we are brought up to present day 31/5/2015

In a few weeks we have been given another appointment to go back to see the consultant at sept but even then we just feel like no one is really listens

It does seem to me as if they do not want say it is Alzheimer’s / dementia because of his age 49 and they would rather put it down to depression or stress , it is not just me that notices the difference with my husband and his memory most of the family have noticed as well , so we just do not know what else to do now ………


is this just the normal process of things ?


Thankyou
 

Macci

Registered User
May 30, 2015
7
0
Please refer to my post yesterday.

Hi,
I understand & appreciate that all cases are different....so many variations of depression & diagnosis of different types & stages. Please take a look at my post yesterday, with regards to Pseudodementia, it us worth a read.

Take care & good luck!

Macci x
 
Last edited:

onix

Registered User
Aug 1, 2014
5
0
Thankyou Macci

Thankyou so much for your reply i am so happy your husband has improved , but our gp said she was pretty sure it is not a form of depression even the memory clinic said at first it seems not to be depression , but after the memory tests and the results they were at a loss and only then started to mention stress and depression , i think they are trying to cover every avenue , it would be great if it turned out not to be dementia and i do appreciate how difficult things are to diagnose , but sometimes it would be nice to know where we stand and to get the right help for my husband.

thankyou again
 

Macci

Registered User
May 30, 2015
7
0
No problem...plse let me know how you get on. Stay strong & don't give up! Easier said than done at times...believe me I know!

I still feel guilty because I can snap @ times, especially when I have to repeat myself over & over again, because he has forgotten something...he can't help it...it is so frustrating for them too...but I guess we are only human!

Take care x Macci
 

henfenywfach

Registered User
May 23, 2013
332
0
rct
Since my last post in Aug 2014 , things have not changed at all , so where do I start ? , well my husband is 49 years of age and at the end of Aug, last year when we had our last visit at the memory clinic to be told what the results were of my husband’s memory tests , but before I go into this let me say that we was told many times that my husband had tried so hard in these tests and that’s why he was so exhausted at the end of them , anyway back to what I was explaining on the last day of the tests we was told by the Trainee clinical Psychologist that all the tests that my husband had done the scores were very low across all the tests and that they can’t be right because if they were correct he would need permanent care she then back tracked and said perhaps he did no try hard enough during these tests and that’s why the test results were so low ?? And that perhaps he should take more responsibility at home with things like finances to help him, at this point I just could not believe what she was saying , the reason I had to take care of things like finances in the first place was because he would forget to pay any bills etc. which obviously caused problems let alone with all the things that was going on with his memory e.t.c , her attitude on the last day was just very abrupt and rude and also suggested that perhaps his panic attacks that he suffered from years ago played a big part with his memory problems ,

Well I went home with my husband and had to take this in first , after a day or two I decided to make an official complaint concerning this and the contradictions in what she was saying , they did look into this but it took them such a long time to do so , to cut this bit short their reply was basically that they just cannot understand why the results of the tests were so low and that perhaps his concentration played a big part in it even though he had tried so hard , I had already told them before the tests started his concentration was just terrible , but when he was being tested they insisted that he had tried so hard (how confusing) as for the finances etc. they said even though she had said that he should try and take more responsibility for the finances and other things etc. that she did not quite mean it in that way ,

After a few months my husband was given an appointment to go and see one of their specialists , when we arrived there was several people there who deal with Alzheimer’s and other mental health issues , we were there for some time discussing his problems and they said even though his scores were so low it could be attributed to other problems like stress etc. or lack of sleep which he does suffer from , my husband finds it so difficult to sleep he only gets a few hours’ sleep a day and that at this point they just cannot say if it is Alzheimer’s or not and that they would like to send him for more tests ,
My husband had lots of blood tests to rule out other causes which all came back ok and also an MRI scan which came back ok and we was also told we would have a home visit from another specialist , i have cut this down a bit to make it more readable ,
When we had the home visit My husband was asked to do more written and visual tests which took about 30 minutes after the tests we was told that the test are still coming back very low , the specialist that came for the home visit also suggested that stress could play part in what was going on in his life and well as his sleep deprivation , and that he would write back to his colleague and suggest a change in tablets and suggest a few new ones ,

At this point I need to say my husband did suffer from panic attacks for some years on and off but have been under control for a few years , we was asked about depression by the specialist and me and my husband tried to make it quiet clear that at present depression was not a problem ,

About four weeks later we heard from the main specialist and that they had recommended a change in tablets to try

The tables are :

Mitrazapine

Pizotifen

Amitriptyline

Ok regarding the above medication I do know what they are for they gave him the Mirtazapine to see if it is depression that is causing his symptoms even though we have said he does NOT suffer from depression even though the memory problems and concentration e.t.c does get him frustrated but it is more frustration than anything
The Pizotifen is for constant headaches , my husband suffers from permanent headaches due to suffering from cervical spondylosis

The amitriptyline was prescribed to see if they would help him sleep

The pizotifen have helped greatly with the constant headaches but the other tablets have made no difference at all

He is still suffering with memory relapses daily and can never remember where he has put anything or what he was doing or was going to do he cannot recall what he was doing half an hour ago, he repeats himself alot , his concentration is still bad , he does try to avoid social interaction with people because sometimes he just cannot find the right words when talking even though he knows what he wanted to say , he does become very snappy sometimes but just as quick calms down and just doesn’t see what the fuss is about afterwards he has a loss of spontaneity and takes much longer than he used to doing things and sometimes has bad judgment when doing things

Sorry if this post is a bit long but I am at my wits end right now and do not know what to do .

Well my husband has now been on these tablets for a while now and now we are brought up to present day 31/5/2015

In a few weeks we have been given another appointment to go back to see the consultant at sept but even then we just feel like no one is really listens

It does seem to me as if they do not want say it is Alzheimer’s / dementia because of his age 49 and they would rather put it down to depression or stress , it is not just me that notices the difference with my husband and his memory most of the family have noticed as well , so we just do not know what else to do now ………


is this just the normal process of things ?


Thankyou

Hi onyx

We all know that its extremely difficult to diagnose dementia. The reality is that the youngest diagnosis is 30 so it shouldnt be a suprise to them if younger people come to them with suspected dementia.
I really hope that it isnt. I care for my dad and had an enormous battle to get him a diagnosis. I saught a second opinion..

Certain dementias can benefit cognitively from medications and as there are over 100 different types of dementia and many that affects younger people generally but not unheard of in older.

When i printed off one of the test online they all said that the families opinion is part of the test and vital as are scores and supporting medical ct scans etc.

My dad firstly was diagnosed with cmi cognitive memory imparement. No meds needed. I was unhappy as ot took over a year to get there.
Having to wait a further year i sought a second opinion. I told them at the memory clinic i was getting 2nd opinion. Next week an appointment came...and guess what they listened..diagnosed what we suspected and we all knew where we were. My dad was then given medication. It helps 1% but thats better than nothing..

Whether its dementia or not or something else that needs diagnosing too.
Be strong and just say what you see. Its your life and your husbands.
ring the local alz society they listen and understand.
Best wishes. Be strong



Sent from my GT-I9505 using Talking Point mobile app
 

onix

Registered User
Aug 1, 2014
5
0
Thankyou

henfenywfach

Thankyou so much for your comments it is so nice to talk to other people that have been through similar circumstances, sometimes it is just so hard not knowing even though you do know it just takes time one way or the other for any diagnosis and this website and the people on it have been so helpful

Thankyou again for your support i will try and keep this post updated
 

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