Very Early Days (perhaps)

[Pansy1950]

Hello Everyone
My husband has not been diagnosed with any of the conditions yet but has had two assessments at the memory clinic, one the year before last and one last year (where they told him he did not need to return unless he was experiencing more serious symptoms)
He passed the tests, especially the maths ones, but he has always been good at those kind of things.
However, within the last year he has deteriorated sharply. He is always forgetting what he came in to say, where he puts things, denies he said something. He’s very sharp to the point of cruel with some of the things he says to me, often upsetting me to the point of tears. He thrashes and shouts out at night and swears he sees things when he does half wake up. I think his hearing is also much worse too. He regularly sleeps in the clothes he wears all day (usually a soft track suit) He is very glum and gloomy most of the time and takes umbrage with drivers, people on tv, anyone really. He can say horrible things about strangers, but not to their face, but to me.
But, his driving is fine and he still cycles and swims. He still emails people and writes the Christmas cards etc, but takes a long time to do these things and gets very flustered if items are not where they were.
I know most of you will have very, very many more serious problems than me, but I’m feeling very down and scared as I am almost certain that we will need to make a new appointment to go to the memory clinic and I’m sure that this time it will be the start of things to come.
I feel so very sorry for him but already I feel life changing and it’s terrifying.
Can anyone tell me if this sounds like any experience you’ve had? Thank you.

 

[canary]

Hello @Pansy1950 and welcome to DTP

All of the things that you mention could be due to dementia, but I think the telling point in your post is

However, within the last year he has deteriorated sharply.

I think this means you should go back

 

[Pansy1950]

Hello @Pansy1950 and welcome to DTP

All of the things that you mention could be due to dementia, but I think the telling point in your post is

I think this means you should go back

 

[Pansy1950]

Thank you, Canary. I’m sure you are right.

 

[Olliebeak]

Hi Pansy1950.

Welcome to TP. I think most people on this page will know exactly how you are feeling. I agree with Canary - I think you should go back to the clinic too. It’s a way of finding out not only what is going on with your husband as it may not be a form of dementia. But if it is the clinic can give you information on what help is available locally - especially a support group for carers. I have always found this to be really helpful. Friends think they know what you are dealing with but members of the support group really do

It takes time to come to terms with realising your best beloved is changing before your eyes, but you will always find understanding and support on this forum from people who have been though it and got the tee shirts. Everyone will tell you and it’s true. Look after you!

 

[Agzy]

I remember going through similar prior to my OH being diagnosed but have to say that since diagnosis and medication the ‘nasties’ and mood swings almost disappeared for nearly two years and only now are some of the old issues raising their heads. Her memory test scores however remain unchanged although personal experience of living with her tells me different. Get the tests rerun and make sure you let the professionals know how you preserve things, good luck.

 

[Sirena]

I can understand how you feel, it is frightening. But I agree you should get another appointment at the memory clinic.
My mother was assessed and told she had normal age related memory problems, nothing to worry about - "I don't know why you're here". Within 9 months she had deteriorated to the point that when she was in hospital (for something unrelated) a doctor asked her GP to re-refer her to the memory clinic, and on that occasion she was diagnosed with dementia.

 

[Pansy1950]

Hi Pansy1950.

Welcome to TP. I think most people on this page will know exactly how you are feeling. I agree with Canary - I think you should go back to the clinic too. It’s a way of finding out not only what is going on with your husband as it may not be a form of dementia. But if it is the clinic can give you information on what help is available locally - especially a support group for carers. I have always found this to be really helpful. Friends think they know what you are dealing with but members of the support group really do

It takes time to come to terms with realising your best beloved is changing before your eyes, but you will always find understanding and support on this forum from people who have been though it and got the tee shirts. Everyone will tell you and it’s true. Look after you!

Dear Olliebeak
Thank you so much for your caring reply. I know the only real way forward is to face the Memory Clinic again but it’s agonising to wonder if I should push for him to go, knowing a diagnosis will almost certainly be the result, or to let things go on the way they are for the foreseeable, as I fear confirmation will devastate him.
Sensibly, I know we must face facts. But it’s so scary.

 

[Pansy1950]

I remember going through similar prior to my OH being diagnosed but have to say that since diagnosis and medication the ‘nasties’ and mood swings almost disappeared for nearly two years and only now are some of the old issues raising their heads. Her memory test scores however remain unchanged although personal experience of living with her tells me different. Get the tests rerun and make sure you let the professionals know how you preserve things, good luck.

I remember going through similar prior to my OH being diagnosed but have to say that since diagnosis and medication the ‘nasties’ and mood swings almost disappeared for nearly two years and only now are some of the old issues raising their heads. Her memory test scores however remain unchanged although personal experience of living with her tells me different. Get the tests rerun and make sure you let the professionals know how you preserve things, good luck.

Dear Agzy
Thanks for replying.
That’s interesting, that the scores of tests remained constant but at home behaviour told a different story. It makes you wonder how long problems can be hidden if measured by tests only.
I know we must face the tests again. This is so stressful for him. It’s so sad.

 

[Pansy1950]

I can understand how you feel, it is frightening. But I agree you should get another appointment at the memory clinic.
My mother was assessed and told she had normal age related memory problems, nothing to worry about - "I don't know why you're here". Within 9 months she had deteriorated to the point that when she was in hospital (for something unrelated) a doctor asked her GP to re-refer her to the memory clinic, and on that occasion she was diagnosed with dementia.

I can understand how you feel, it is frightening. But I agree you should get another appointment at the memory clinic.
My mother was assessed and told she had normal age related memory problems, nothing to worry about - "I don't know why you're here". Within 9 months she had deteriorated to the point that when she was in hospital (for something unrelated) a doctor asked her GP to re-refer her to the memory clinic, and on that occasion she was diagnosed with dementia.

Dear Sirena
Thank you for the reply.
That’s quite shocking, that your mother declined so rapidly. From what they deemed ‘normal’ to dementia diagnosis in that short time. I see that the only way forward is to get checked again. I’m wondering if I can simply ring up the memory clinic (they said get back in touch if anything changed) or if we will need to go back to the GP first, for him to refer hubby? I’ll ring in the New Year and check.
thans again.

 

[Sirena]

I think you need a referral from the GP, I'm not sure - good idea to ring and check.

I am not sure that she did deteriorate that quickly. Having subsequently read the correspondence, I discovered that the CPN (community psychiatric nurse) my mother initially saw, who did the usual tests, thought she did have dementia and referred her on to the memory clinic doctor, but that doctor dismissed her issues (who knows why - the notes he had transcribed were... odd). At the second visit she saw a different doctor, who confirmed the diagnosis of dementia.

So really I'm just saying that you just have to trust your judgment and persist. Please let us know how you get on.

(After diagnosis, that same CPN subsequently visited my mother at home for regular checks - she was very helpful.)

 

[Pansy1950]

I think you need a referral from the GP, I'm not sure - good idea to ring and check.

I am not sure that she did deteriorate that quickly. Having subsequently read the correspondence, I discovered that the CPN (community psychiatric nurse) my mother initially saw, who did the usual tests, thought she did have dementia and referred her on to the memory clinic doctor, but that doctor dismissed her issues (who knows why - the notes he had transcribed were... odd). At the second visit she saw a different doctor, who confirmed the diagnosis of dementia.

So really I'm just saying that you just have to trust your judgment and persist. Please let us know how you get on.

(After diagnosis, that same CPN subsequently visited my mother at home for regular checks - she was very helpful.)

Thanks Sirena, I shall let you all know what happens. I feel a little easier knowing there are real people out there who will listen.

 

[maryjoan]

Thanks Sirena, I shall let you all know what happens. I feel a little easier knowing there are real people out there who will listen.

You are at the most difficult stage of 'has he, hasn't he, what do I do' - at least with a diagnosis, you have confirmation that you are facing something life changing.

Many of us ( including me) have PWD who do not recognise there is anything amiss - that puts a completely different spin on things - but don't preempt what might be ahead.

Ask for a referral and move forward with it - we are here to help you.

 

[Lilstar]

Hello Everyone
My husband has not been diagnosed with any of the conditions yet but has had two assessments at the memory clinic, one the year before last and one last year (where they told him he did not need to return unless he was experiencing more serious symptoms)
He passed the tests, especially the maths ones, but he has always been good at those kind of things.
However, within the last year he has deteriorated sharply. He is always forgetting what he came in to say, where he puts things, denies he said something. He’s very sharp to the point of cruel with some of the things he says to me, often upsetting me to the point of tears. He thrashes and shouts out at night and swears he sees things when he does half wake up. I think his hearing is also much worse too. He regularly sleeps in the clothes he wears all day (usually a soft track suit) He is very glum and gloomy most of the time and takes umbrage with drivers, people on tv, anyone really. He can say horrible things about strangers, but not to their face, but to me.
But, his driving is fine and he still cycles and swims. He still emails people and writes the Christmas cards etc, but takes a long time to do these things and gets very flustered if items are not where they were.
I know most of you will have very, very many more serious problems than me, but I’m feeling very down and scared as I am almost certain that we will need to make a new appointment to go to the memory clinic and I’m sure that this time it will be the start of things to come.
I feel so very sorry for him but already I feel life changing and it’s terrifying.
Can anyone tell me if this sounds like any experience you’ve had? Thank you.

Hello Everyone
My husband has not been diagnosed with any of the conditions yet but has had two assessments at the memory clinic, one the year before last and one last year (where they told him he did not need to return unless he was experiencing more serious symptoms)
He passed the tests, especially the maths ones, but he has always been good at those kind of things.
However, within the last year he has deteriorated sharply. He is always forgetting what he came in to say, where he puts things, denies he said something. He’s very sharp to the point of cruel with some of the things he says to me, often upsetting me to the point of tears. He thrashes and shouts out at night and swears he sees things when he does half wake up. I think his hearing is also much worse too. He regularly sleeps in the clothes he wears all day (usually a soft track suit) He is very glum and gloomy most of the time and takes umbrage with drivers, people on tv, anyone really. He can say horrible things about strangers, but not to their face, but to me.
But, his driving is fine and he still cycles and swims. He still emails people and writes the Christmas cards etc, but takes a long time to do these things and gets very flustered if items are not where they were.
I know most of you will have very, very many more serious problems than me, but I’m feeling very down and scared as I am almost certain that we will need to make a new appointment to go to the memory clinic and I’m sure that this time it will be the start of things to come.
I feel so very sorry for him but already I feel life changing and it’s terrifying.
Can anyone tell me if this sounds like any experience you’ve had? Thank you.

Hello @Pansy1950 and welcome to DTP

All of the things that you mention could be due to dementia, but I think the telling point in your post is

I think this means you should go back

Hi Pansy 1950.
My husband took 4 years to get a diagnosis from first test which he scored high, I knew there was something going on and four years later after still scoring high in all tests , after me telling the memory clinic team his symptoms they decided to cut him where it showed just minor blood vessels changes, it was then we scored lucky with a consultant who gave him a further scan which revealed he had Alzheimer’s and vascular . If I had not kept pushing them, they would of just said he had Mci.

 

[jenniferjean]

If I had not kept pushing them, they would of just said he had Mci.

That was what the memory clinic kept telling me, that my husband had MCI. It was only after we had moved that our new doctor pointed out that his records showed that he had Alzheimers.