WHY DO i FEEL SO ALONE

[susiesue]

Hello Helen33

I am afraid I am very disallusioned with hospitals generally - afterall the National Neurology Hospital in London are supposed to be the leading experts in this disease. They said we should continue with the Aricept - goodbye!!!and that was that.
On our last visit to the local Memory Clinic the lady there who tested him said she had been doing this for many years and she found David quite unique in that although he has severe communication problems, he still looks after himself (washing etc etc) and this was most unusual. This is why I have always thought that perhaps it isn't Alzheimers - I suppose you can live in hope - time will tell!
Take care
Susiesue

 

[Grannie G]

Hello Susiesue

My husband was diagnosed with Alzheimers In 2005 and is still self caring. I only help him with a bath.

 

[susiesue]

Hi Grannie G
I'm glad to hear your husband is still self caring. Did you get a definite diagnosis of Alzheimers?, which we were told was not possible - just an opinion of the Consultant.
It makes me think therefore that maybe your husband (and mine) do have a problem but it is not necessarily Alzheimers. There are so many different dementias and it seems to me that if in doubt Alzheimers is probably the cause.
Take Care
Susiesue:

 

[Helen33]

Hello Hazel

John was on AD meds from the day he was first diagnosed. When the diagnosis was changed, the consultant left him on them, as he was doing so well. He was on them for 7 years.

Thanks Hazel for that information. The consultant sounded so sure and definite that I never thought what he said was in question! It clearly is questionable and I will be very annoyed if he has made a statement that has meant Alan has been denied possibilities of treatment that might have slowed down the progress of this disease. I do appreciate having a glimpse into the bigger picture - thank you

Dear Susie,

As you will have read Alan has been offered no help - they don't even offer him a memory clinic. He has language problems but still can dress himself and wash (but cannot work the bath taps) I was told in these words "there is nothing that can be done" and that is precisely our experience - nothing. This is where the Alzheimers Society stepped in because without them (including Talking Point) it would be like Alan doesn't exist!!

We are all here Susie and I hope you find some of the support you need.

Love and best wishes

 

[Grannie G]

Hello Susiesue

The scan my husband had showed brain shrinkage. The word `Alzheimers was never used but he was immediately prescribed Aricept. When he had bad reactions to it, he was tried with Reminyl. Because of the prescriptions I presumed he was being treated for possible Alzheimers.

Now his condition is referred to as dementia. There is also a possibility of vascular dementia as he is diabetic.

Of course only a Post Mortem would tell us his precise condition.

My mother was considered to have had Alzheimers and yet her symptoms were so different to those of my husband. The only similarity was memory loss. When my mother died, cause of death was given as Global Dementia.

I hope this helps you.

Edited to add........my husband has only minimal loss of language. He uses language fluently, although sometimes inappropriately, and understands when spoken to.

 

[susiesue]

Hello Grannie G

My husband's scan showed deterioration of the brain and blood vessels in the centre.
I still think that they put people on Aricept 'just in case it is Alzheimers' probably working on the basis that 'it won't do any harm - but it might do some good!! I really don't know whether it is helping as how do I know what he would have been like without it!

I too know many people who have had relatives with Alzheimers and they all say that my husband's problems are nothing like Alzheimers. This doesn't make it any easier but I have just discovered how hard it is to get Travel Insurance without a definite diagnosis!

My husband loves to talk still - trouble is I haven't a clue what he is talking about most of the time!!
Take Care

 

[Skye]

Susie, John was physically very fit until Agust 2007, exactly 7 years from diagnosis.

Then he had a severe infection, which took away his balance and mobility. Since then, he is moved from bed to reclining chair by hoist.

This seems to be the norm for PPA, insofar as there is ever a norm in dementia. A very slow decline for 6/7 years, then a sudden plunge. So if your husband follows the pattern, you can look forward to more good years. Make the most of them!

If he has no adverse side effects from Aricept, I'd keep him on it. You're right that we can't tell what effect it is having -- but I'd be positive, so long as it's not doing any harm.

Love,

 

[susiesue]

Hello Skye

I'm sorry to hear your husband is no longer mobile - it must be very stressful for you and also him. Did you ever find out why he got PPA? - I have a friend whose young husband in his fifties has developed PPA and her Consultant says it is just one of those things. Our Consultant said that as it wasn't a result of a brain tumour or stroke, it must be Alzheimers - which I find a rather odd way of making a 'probable diagnosis'. From what you and others say people can get PPA but not necessarily Alzheimers.

I don't think the Aricept are having any bad effect - although I do find that David is always falling asleep - mostly I think thru boredom.

Love

 

[Skye]

I don't think anyone knows how anyone gets any form of dementia -- unless it;s drink or drug related.

Alzheimer's is just one form of dementia, though it's the most common. That's why it's often diagnosed when the consultant isn't sure what form of dementia it is.

Some people do have mixed dementia, i.e. Alzheimer's together with another form, and people with PPA usually develop Alzheimer's symptoms in the late stages, because by that time the damage has spread to the rest of the brain.

Have you read the Alzheimer's Society factsheets? They will explain the different forms of dementia.

http://www.alzheimers.org.uk/factsheets

 

[susiesue]

Hello Skye

Thanks for the Factsheets, which I will read.
Did you notice with your husband that he had a sort of list of set phrases that he would use continually? also I find that David confuses 'he' with 'she'. I must admit he is at his worst in the mornings and it is rather like trying to talk to someone with a scrambler in their head!
Yesterday he got very confused and concerned because he couldn't find 'it'. When I asked him to either draw or show me something similar so I could help him, as I didn't know what 'it' was, he just carried on getting more and more confused. In the end it turned out to be his watch! - why couldn't he just point to mine on my wrist, so that I could understand him!! - or am I being unrealistic? - I do wish I could be more understanding and patient!!!!

 

[gigi]

Hello Susie...

Did you notice with your husband that he had a sort of list of set phrases that he would use continually?

..

My husband only has set phrases now...same comments..same statements..same questions..

(It's almost 3 years since his Alzheimers diagnosis)

I call them his "stock phrases"..and he can get by with these with strangers for about 10 minutes and they would think there's nothing wrong with him. Longer than that and it all starts again...We haven't had a decent conversation about anything for about 2 years now..or maybe longer than that..

I agree it's frustrating...and can stretch your patience to its limits...suppose I've just become used to it.

It is very isolating...and I do worry occasionally that I'll lose the art of conversation myself..

Love gigi xx

 

[Grannie G]

It is very isolating...and I do worry occasionally that I'll lose the art of conversation myself..

No you won`t Gigi for you are a natural communicator. And anyway, our `virtual` conversations keep us in practice.

 

[Brucie]

I find that David confuses 'he' with 'she'

I also had Jan talking to me about 'them', by which she was referring to me.

I guess for her, there was the nice 'me', and, when sundowning came along, or some other manifestation, I gained a new persona as the unhelpful one in the house.

On thinking as I write, I am, 8 years on, heartened by the fact that Jan retained the nice me in her world, rather than adding me totally to the nasty things of life.

 

[susiesue]

Hello Gigi

I understand exactly what you mean - our friends also can spend a small amount of time with him thinking that all is fine and then realise that he keeps repeating these same phrases. Do you find that friends are becoming more scarce? - that really worries me not having people to talk to.

Does your husband have PPA? We haven't really had a diagnosis of anything definite - probably early onset Alzheimers 2 years ago, and also PPA.

Take care

 

[Skye]

John also had stock phrases, and confused he and she.

'Thing' became the most used word, and led to many misunderstandings as I tried to discover which particular 'thing' he was talking about.

One morning, when I had a 9.00 meeting, and was still able to leave him alone, we had the following converstion:

J. I've put the thing out.
H. Oh, thank you darling, that's a help.
(It was wheelie bin day, so I assumed .....!)
J. But I haven't put the things in.
H. What things?
J. You know, the metal things.
(I racked my brains trying to think of what metal things needed to go in the wheelie bin)
H. I can't remember. Can you show me?

What he meant was, he'd emptied the dishwasher, but hadn't put the cutlery away!

 

[gigi]

Hello again Susie...

Does your husband have PPA?

....No he doesn't...he was diagnosed with Alzheimers and samll vessel vascular disease following an MRI scan in 2006. He takes Reminyl which seems to be holding things at bay..but I've no idea how he'd be without it....

And yes..."friends" vanish into thin air...for whatever reasons. It doesn't matter any more..those that remain are the true friends who can be counted on....

And "thing" is also one of Eric's stock words...it describes everything.... I think I'm so in tune with his thinking that I generally know what he means...but 'twas not always so.... In one sense we've become closer since I gave up work to care for him. In other ways we're further apart as he deteriorates.
It's a strange existence...

Love gigi xx

 

[Skye]

Another example, which clearly shows the difference between Alzheimer's and PPA:

We were shopping in the supermarket:

J. We need things.
H. What things?
J. You know. They're like this.
(holds hands to indicate a cylinder. Now supermarkets are full of cylindrical 'things' ........)
H. I'm sorry, I still don't know. Can you show me?
J. I don't know where they are. But you get three and three and three. (Indicates stacking)

Eventually the penny dropped; he meant toilet rolls!

He had remembered we needed them, remembered how they were packaged, but didn't know the name.

 

[Grannie G]

Now that is very interesting Hazel. It`s as if the language goes before the memory.

So was language one of the early symptoms, or was it loss of short term memory?

 

[susiesue]

Hi Skye

Exactly!!! they do remember what they want to talk about it is recalling the word that is the problem - that is why I disagreed with the probable Alzheimer's 'diagnosis. I kept telling them that David knew what he wanted to say but could not retrieve the word. In fact one of the tests they gave him was a sheet of six pictures, cat, dog etc etc and they would point to one and ask him what it was. He couldn't give an answer to any of them. HOWEVER, they tried it the other way round and said 'point to the dog' - which he did immediately - therefore his memory was fine he just could not retrieve the word...

As you say if memory was the problem your husband wouldn't have remembered you needed toilet rolls, just like my husband would not have been able to point to the correct picture.

 

[Skye]

Now that is very interesting Hazel. It`s as if the language goes before the memory.

So was language one of the early symptoms, or was it loss of short term memory?

Exactly, Sylvia.

John's short-term memory never went, until his infection last year. It was quite common for him to remind me of things -- the problem was, trying to work out what he was reminding me of!