Crunch day tomorrow

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
As you may remember, hubby was diagnosed with mild cognitive impairment last summer.

Sadly things seem to deteriorate over the last few months and he had a further nurses assessment in December and the nurse suggested he see the consultant again so the appointment is tomorrow morning.

I feel so uptight about it to be honest. I know that either he will get a further diagnosis or she will stick with the MCI diagnosis of last year. Either way it is hard dealing with things on a day to day basis. His memory is awful, he is making up stories all the time in his mind and for him they are completely real including taking issues with me almost every day. I am sure you all know how hard it is.

Anyway will keep you posted on how tomorrow goes.
 

nitram

Registered User
Apr 6, 2011
30,075
0
Bury
To some extent the diagnosis is irrelevant, does it really matter what it is called?

You have to impress on them his day to day condition and how you are finding this increasing hard to deal with.
 
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mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
To some extent the diagnosis irrelevant, does it really matter what it is called?

You have to impress on them his day to day condition and how you are finding this increasing hard to deal with.

A very valid point and thank you for making it. I don't suppose it really does matter what it is called just how it affects us both. The only thing I have been told by the nurse that getting a diagnosis does open a few doors for us that aren't open without one. Hope that makes sense. I will certainly be impressing on the consultant how it does affect us and how things are. Can't do anymore than that really.
 

joolzt

Registered User
Apr 1, 2016
38
0
Edinburgh
I don't suppose it really does matter what it is called just how it affects us both. The only thing I have been told by the nurse that getting a diagnosis does open a few doors for us that aren't open without one.

A diagnosis can help because you can read up on it and start preparing for the future. There are different types of dementia and, while every individual is different, and many symptoms are common for all types, some types of dementia, eg frontotemporal dementia (FTD), can bring different types of problems from Alzheimer's as described here https://www.alzheimers.org.uk/info/20007/types_of_dementia/11/frontotemporal_dementia/2

You are right about opening doors too. Where I live mum's Alz diagnosis entitled us to a minimum of a year's support from a specialist dementia team, help that has been invaluable.

Whatever type it is, people will be here for you.

Best wishes.
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
A diagnosis can help because you can read up on it and start preparing for the future. There are different types of dementia and, while every individual is different, and many symptoms are common for all types, some types of dementia, eg frontotemporal dementia (FTD), can bring different types of problems from Alzheimer's as described here https://www.alzheimers.org.uk/info/20007/types_of_dementia/11/frontotemporal_dementia/2

You are right about opening doors too. Where I live mum's Alz diagnosis entitled us to a minimum of a year's support from a specialist dementia team, help that has been invaluable.

Whatever type it is, people will be here for you.

Best wishes.

I agree with this. A diagnosis might mean medication is available. I think the entitlement to a year's post diagnostic support may only be in Scotland but a diagnosis may help you with some kind of support and if necessary benefits like Attendance Allowance.

It might be an idea to jot down your main concerns. It can be easy to forget to say things when you're on the spot. If possible try to get some time alone with the consultant so that you can say things you might not want to say infrint of your husband. If that's not possible though you'll still have to be clear about how things are for both of you.

I hope it goes well. If you feel like it let us know how it goes.
 

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
Thank you for all your comments - they are so helpful and supportive.

The appointment went well. Even though I had gone through all the points I had written down with hubby last night as I read them out to the consultant he was disagreeing with me and I was having to go through it with him as well but we got there in the end.

The consultant took everything on board. Said that although it was clear there were issues it wasn't a clear cut case as hubby's score was 84 and the cut off I think for diagnosis is 82. So she is referring him to a neuropsychologist for further in-depth testing. Has anyone been through this and do you know what it entails please? We were told there was probably a four to six month wait for this appointment.

I was glad that we weren't fobbed off or ignored which was good but obviously this is going to take a little more time. In the meantime, I have just reassured hubby and we will have to deal with things on a day to day basis as they occur.

Thank you again for all the support it means so much x
 

Amlama88

Registered User
Feb 13, 2017
46
0
Thank you for all your comments - they are so helpful and supportive.

The appointment went well. Even though I had gone through all the points I had written down with hubby last night as I read them out to the consultant he was disagreeing with me and I was having to go through it with him as well but we got there in the end.

The consultant took everything on board. Said that although it was clear there were issues it wasn't a clear cut case as hubby's score was 84 and the cut off I think for diagnosis is 82. So she is referring him to a neuropsychologist for further in-depth testing. Has anyone been through this and do you know what it entails please? We were told there was probably a four to six month wait for this appointment.

I was glad that we weren't fobbed off or ignored which was good but obviously this is going to take a little more time. In the meantime, I have just reassured hubby and we will have to deal with things on a day to day basis as they occur.

Thank you again for all the support it means so much x
I remember my dad having the neurological assessment as he started with symptoms young, I think they felt they needed to check it out. By having this assessment he got the diagnosis of alzeimers.
As you mentioned earlier he takes issue with a lot of the things we do everyday so I understand how hard that is.
Hope the wait for the neurophysiology appointment isn't too long.
Best wishes
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Neuropsychology testing is basically a pen/paper and verbal exercise that tests all the different functions of the brain so that the doctors can see which bits of the brain are not functioning properly. It usually lasts a couple of hours at least.
 

PJ

Registered User
Jan 26, 2017
358
0
57
Bristol
Hi Mary, I waited approx 8wks for my neuropsychologist appointment & we had my results within a week. I have to say we found the whole process very helpful although I never really came away with anything other than being told I was showing borderline mild cognitive impairment in some of the tests. I will be retested in 9 months if there is any further deterioration. I hope you & your husband get some helpful answers as the frustration caused by not what's wrong can be so stressful. Is your husband aware of just how bad he is?


Sent from my iPhone using Talking Point
 

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
Thank you for all the replies - they are so supportive and helpful. At least I know what to expect when we finally go to the appointment.

Hubby realises that there is something wrong - whether he is aware of how wrong I am not so sure. The night before his appointment I did a list of issues I wanted to raise with the consultant and went through it with him as I didn't want any secrets and it gave him a chance to add anything or take issue with anything. At the time he agreed with everything I had put except for his attitude with me and I gave him very clear cut examples of the name calling and combative attitude. I stressed it wasn't done or mentioned to shame him but to clearly indicate how his personality had changed. He took on board what I said. The following morning at the appointment he again denied doing any of it and said I hadn't discussed it with him. To me this is just another indication of how his mind is working (or not) and again I stressed to him that I wasn't mentioning it to the consultant to embarrass him but just to point out how things have altered. It is very hard trying to get him to understand that.

He is a retired bank manager but struggles now to deal with the finances and if anything crops up with bank statements he can't cope with it. Again this is like a red flag to me as it is something that would never have worried him in the past.

I have told him how much I love him and that a diagnosis or no diagnosis will change that and that he has my complete support but I weep inside for how things are and how things have changed and worry about how things will be in the future. I am disabled myself but trying to put a brave face on things. I am slowly learning which battles are worth fighting and which aren't. It is hard and I know that someone posted that a diagnosis wouldn't make any difference but I feel it would as surely with a diagnosis I would get some more support (from say the Admiral nurses) and may be there would be medication that might help as well.

Sorry if I am rambling. I am sure you all know where I am coming from. In the meantime, I thank you all for the support as it means everything to me.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hubby realises that there is something wrong - whether he is aware of how wrong I am not so sure. The night before his appointment I did a list of issues I wanted to raise with the consultant and went through it with him as I didn't want any secrets and it gave him a chance to add anything or take issue with anything. At the time he agreed with everything I had put except for his attitude with me and I gave him very clear cut examples of the name calling and combative attitude. I stressed it wasn't done or mentioned to shame him but to clearly indicate how his personality had changed. He took on board what I said. The following morning at the appointment he again denied doing any of it and said I hadn't discussed it with him.

My OH did exactly that to me too
Unfortunately it was before diagnosis and the doctor believed him and not me.........
 

PJ

Registered User
Jan 26, 2017
358
0
57
Bristol
I totally agree a diagnosis of something is so important just to understand what's going on. We were obviously over the moon to be told it was not early onset D but as the consultant said the frustration of not knowing can be awful. When the phycologist phoned me & asked me to bring my hubby along to discuss my results I thought the worst. I do hope you have some answers very soon.
I can't imagine how stressful this must be for you seeing him deteriorate . Keep in touch.


Sent from my iPhone using Talking Point
 
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LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Mary, my late husband was an extremely intelligent man, and very highly educated. This can hide the damage being done to the brain for years, I was told by his consultant. William was still scoring very highly on the basic tests when it was very obvious that he did indeed have dementia - he was probably in late/moderate stage of the illness before his scores suddenly dropped way down. He also used to come out with stories - some of which were complete fabrications, some were sort of made up from different incidents which happened at various times - but he would weave it into one (very believable!) incident! It drove me nuts for years, before I realised he had dementia, because I couldn't understand why he was doing this. I took training in dementia care, where I learned that the brain doesn't like "blanks" in memory. So, when it comes across a blank where it knows something should be, it will often - particularly in the early stages - just pull random memories from somewhere else and slot them into the blank place, to make a whole "memory". To the person, this now is exactly what happened as they remember it.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Lady A, OH was the same. Scored 29 or 30 in the early days. Then no test for years, then scored 1/2! Well, to be fair, they didn't bother with more than a couple of questions. But he was intelligent as well. I'm not sure it was deliberate, I think it depends on what part of the brain has been affected. But he kept most of his language skills, and his sense of humour, for many years. Skills with and understanding electronic things were going before diagnosis!
 

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
My OH did exactly that to me too
Unfortunately it was before diagnosis and the doctor believed him and not me.........

It is so hard isn't it Canary to try and explain to professionals what your concerns are as certainly in our experience he is extremely good at putting on 'host' skills - talking to someone very clearly for short periods of time and then it is lost again very quickly. Certainly I am the only one that gets the confrontational attitude and name calling. It is extremely hard and I feel for you not being believed. That just compounds the issues.
 

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
I totally agree a diagnosis of something is so important just to understand what's going on. We were obviously over the moon to be told it was not early onset D but as the consultant said the frustration of not knowing can be awful. When the phycologist phoned me & asked me to bring my hubby along to discuss my results I thought the worst. I do hope you have some answers very soon.
I can't imagine how stressful this must be for you seeing him deteriorate . Keep in touch.


Sent from my iPhone using Talking Point

Thank you so much PJ - I know it is going to be a long wait but at least it is a focus. x
 

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
Mary, my late husband was an extremely intelligent man, and very highly educated. This can hide the damage being done to the brain for years, I was told by his consultant. William was still scoring very highly on the basic tests when it was very obvious that he did indeed have dementia - he was probably in late/moderate stage of the illness before his scores suddenly dropped way down. He also used to come out with stories - some of which were complete fabrications, some were sort of made up from different incidents which happened at various times - but he would weave it into one (very believable!) incident! It drove me nuts for years, before I realised he had dementia, because I couldn't understand why he was doing this. I took training in dementia care, where I learned that the brain doesn't like "blanks" in memory. So, when it comes across a blank where it knows something should be, it will often - particularly in the early stages - just pull random memories from somewhere else and slot them into the blank place, to make a whole "memory". To the person, this now is exactly what happened as they remember it.

Lady A - thank you so much for sharing this as it is really like a lightbulb moment for me. Yes my hubby is an intelligent man who clearly held a responsible job for many many years. I had no idea this would actually make a difference with this scores and tests and no one has said as much during two assessments and two consultations. This is exactly what he is doing. Patchworking different things and experiences and weaving them into one story. I can't thank you enough for mentioning this as it is extremely helpful and makes me understand why and how it is happening and also why his scores remain high although I can see such deterioration over the months and certainly over the last two years.
 

mary2000

Registered User
Mar 24, 2016
355
0
West Sussex
Lady A, OH was the same. Scored 29 or 30 in the early days. Then no test for years, then scored 1/2! Well, to be fair, they didn't bother with more than a couple of questions. But he was intelligent as well. I'm not sure it was deliberate, I think it depends on what part of the brain has been affected. But he kept most of his language skills, and his sense of humour, for many years. Skills with and understanding electronic things were going before diagnosis!

Spamar - my husband also scored 29 out of 30 in one set of tests and 84 in another and apparently 82 is the cut off for diagnosis. He is definitely keeping his language skills but I completely understand about your husband losing the understanding of electronic things - my hubby gets confused using his mobile and has been stumped by the microwave and his computer too. This has been for some time. He also has been making mistakes with his medication. Thank you so much for sharing your experience as it is so helpful.
 

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