Knowing you have Alzheimers and Reminyl

[Cliff]

My wife Dee is well into stage 6 but has never been told that she has Alzheimers.

As she reacted badly to Aricept, she has been tried on Reminyl and has been taking this for one month, and all seems well.

Last night she struggled to compose a sentence during the ‘going to bed routine’. I tried to understand her and I believe she was really asking: “why do people treat me differently ?” . Fortunately the moment passed and we laughed about something.

This resulted, I suspect, from the well meaning invitation from a very kind neighbour who asked her for a cup of tea yesterday morning and escorted her from our house to her’s and back after the little break.

I have not had the opportunity to ask the clinic staff why patients are guarded against the identification of Alzheimers.

Have other carers faced this problem and what happens if the patient knows ?

And Reminyl. How have other carers found behaviour changes after taking this drug ?

Would be very grateful for your experience with this please - Cliff

 

[BeckyJan]

Hi Cliff:

Things seem have been so different for us. David knew all along he was being tested for his 'poor memory' and that it could be Alz. When he was told by the physchologist (not the consultant) that he definitely had it - he that weekend had a stroke!

His first reaction was dont tell anyone not even our daughters. However after a couple of weeks he began to tell friends himself. That was a tremendous relief to me and has been a godsend - the real friends have supported him. Within the first year of this diagnosis he went to 'old colleagues' reunion lunch which he had always organised. He stood up in front of all friends and colleagues (20+) and said 'the trouble with this bl Alz I cannot remember anything' - they all admired him for that.

Because his mobility is so bad he does need a lot of help and guidance walking around - he is quite happy about that, but just gets frustrated with his own slowness.

Writing things make it look rosy, but in fact I have had a difficult few days as his confusion, disorientation etc etc has had a downturn - maybe it will pass, who knows!

Good thread this - it will be interesting to hear from others. Does Dee never ask 'what is the matter with me?' or does she think there is nothing wrong?

Best wishes Beckyjan

 

[Grannie G]

Dear Cliff,

I think, as it was with cancer, the medics leave it to the family to decide whether to tell or not to tell.

When my husband was diagnosed, the consultant talked about the scan showing brain shrinkage, but it was only when he gave me a prescription for Aricept, that the penny dropped.
But my husband didn`t take it in.

It was months later when he kept asking what was wrong with him that I told him. His reaction wasn`t what I`d expected. He was upset but relatively calm.

He knows what he has but doesn`t really understand the implications. He has referred to himself as senile, as having dementia, while at the same time, on good days, thinks he has recovered.

By the way, Aricept was discontinued as he had dreadful hallucinations, and Reminyl was also tried, but stopped within a week, for the same reasons.

Take care xx

 

[Skye]

Hi Cliff

John was prescribed Reminyl from diagnosis, and the results were dramatic. Within a couple of weeks he was back to his old self, and after six months he re-applied for his driving licence, and continued to drive for three years.

After six years he suffered a serious decline after contracting a virus on a cruise holiday. The decline has continued, and I am now seriously worried about him. He still takes Reminyl, plus Ebixa for the last two years.

He was with me when we were given the diagnosis, but has never asked about it, or worried. From the word go he has just assumed that I'll care for him. He's not embarrassed by his lack of speech, or his incontinence, he just comes and tells me.

But John's diagnosis has been in doubt for the last two years. Originally it was AD, then changed to PPA (primary progressive aphasia). He's now showing increasing AD symptoms. Apparently this is normal in PPA, for six years on average the main symptom is aphasia, and then the damage begins to spread rapidly to the rest of the brain.

Of course, he doen't know any of this, he understands hardly anything that is said to him.

Not very helpful, I'm afraid, as John probably has a completely different form of dementia from Dee.

Love,

 

[germain]

Hello

Our Mum was diagnosed around 4 years ago and went straight onto a low dosage of Reminyl. The effects were wonderful - although her memory & motivation remained poor she "got her life back" and has been living alone for the last few years (albeit with a lot of help)

We had a quite sudden decline this year , a period of hospitalisation and some increased confusion. Her MME scores declined from a stable level of around 21, suddenly to 15. (not now living alone any more)

Reminyl dose has now been increased to 12mg x 2 daily and although it could be wishful thinking on our part we think we've noticed a real improvement in the last week or so.

Its possible she has mixed AD and vascular which could explain the sudden declines. Only possible side effect we've noticed is some extra sleepiness but as she uses sleep as an avoidance tactic anyway its hard to tell.

No other side effects that we can identify at all.

Mum was told of her diagnosis at the time but as she had practically nil short term memory it didn't really "click" with her. She's never asked again and all the staff at the Memory Clinic are very tactful. We took the attitude - why distress her more. Others might think this is wrong but thats what worked for us.

Good luck - Reminyl has been our life saver.

Germain

 

[Cliff]

Your replies are heartbreaking.

Dee knows something is wrong. She was so intelligent and artistic. Her work was a costume designer and she carried her skills into retirement. But she cannot express her feelings now.

Her decline has been so rapid after the initial couple of years, it's been unbelievable. All your experiences are so different, I cannot relate to any of them. The Reminyl is making a difference but nothing like the experience of others.

I have a bond with Dee and have promised always to tell the truth. I dread being asked THE question, but will have to answer truthfully.

We just have to enjoy the loving bond we have and try to make it last.

Love to you all - Cliff

 

[Canadian Joanne]

We tried to tell her

We did want to tell my mother but she was in such violent denial it was impossible. The closest we got to it was once when she & I were on the phone (when we were still 3,000 miles apart) and she asked in a very small, frightened voice "Do you think I have Alzheimer's?" As we didn't have an actual diagnosis at that time, all I could say was "I don't know, but there's something wrong & we have to find out". Later, when she was diagnosed, I was advised that since she became so agitated when the word Alzheimer was even mentioned, not to bother telling her.

In many ways I regret we were unable to tell her because she didn't get to make any decisions ahead of time or tell us what she wanted done in the future. But we made the best decisions we could at the time and that's all anyone can do.

I'm sure on some level she knew, because on several occasions she came out with the statment "I don't have Alzheimer's". Quite interesting, really.

 

[connie]

Dear Cliff

and have promised always to tell the truth.

yes, that's how things were wbetween myself and Lionel. He always knew what was wrong with him, but as the illness progressed his understanding decreased.

When he went into the care home last November, having for 6 years stated to everyone that "when things got too bad he wanted to go into a home", he challenged me saying "did I hate him that much"

I tried explaining that it was purely his mobility (or lack of) that had caused the move. Did not work, in his eyes there was nothing wrong with him., after all "I can still wash and dress myself". This from a man who could not do anything.

To keep the peace I told him that he was in the care home because I was not well.
Complete lie, but his love for me enabled him to accept this more easily.

All academic now, but your comments about you and Dee made me remember.

 

[Nell]

I made the mistake of trying to talk to Mum about it when I thought she was still rational enough to take it in and she went ballistic. Dad would never accept there was anything wrong with Mum, either - altho' she used to drive him mad with her constant repitition and forgetfulness.

Now I don't mention it but Mum herself has made a few remarks lately that make me think she does know she has dementia.

I can understand your dread of telling your beloved Dee and I only hope you can be spared this awful experience.

I think there is a lot in what Connie says too. When you promised to tell Dee the truth it was when she was rational and could understand the truth. As time goes on, it may be that her understanding of the truth is not as important as her need to be protected from hurt. Only you can make this decision, Cliff.

Sending you warmest wishes.

 

[Cliff]

Thank you Nell and everyone,

So much good, loving advice, I feel much easier about it now.

The most important thing now, is not to hurt her in anyway and hope the drugs help.

Love to you all

 

[Margarita]

is not to hurt her in anyway and hope the drugs help

No what you mean .

with my mother she was really not aware of what was happing to her , so thought nothing was wrong with her , put up a good argument not wanting to see doctor , but did get her to brain scan

when put on Ebixa it brought her awareness back , she know she taking medication for her memory , knows people reaction to her are different especially when-one man at day-center garden party said she won't understand , mum said what he talking about of cause I understand .

my mother see dementia as madness , so I don't use the word dementia , she does not know what AZ mean , I have told her one day she forget me , told her it's like a cancer in her brain , she did listen to that did not get angry , but that was years ago,

when they pick her up from day-center and can't keep her balance when walking out of door to take the driver arm she tell him pointing to her leg ''its hurting ''[ meaning that all that wrong with her , her legs ]
mum had test for her legs they nothing wrong with them .

She tell me to cover up for her , that said it all she knows something wrong .

 

[Cliff]

I feel that I have many friends.

Love to all,