I'm sure someone knows what to do !

[Cliff]

Dee, my wife, is on 16mg Reminyl. She is brighter and has regained some of her wit, all of which is lovely.

But, she faced me with the question: "what is wrong with me, I feel I must do something, go for a walk ?"

All I could answer was: "You're fine - just a bit confused at times"

She has never been told she has Alzheimers'. Dee is confused, unable to concentrate for long or help in the house. Am sure you know the pattern, But she is brighter, cheerful and as loving as ever even though she doesn't know who I am.

When she asks me again, "what is wrong with me ?" - what do I say ?

 

[Brucie]

Hi Cliff

It is a difficult one, and one that each person needs to decide according to their situation.

I told my Jan that she had memory problems that we were trying to sort out.

That caused us no obvious problems.

Good luck

 

[Skye]

Hi Cliff, I'm glad Dee is a bit brighter. I'm a great advocate of Reminyl, it worked wonders for John for a long time.

I think the need to walk is part of the disease (or part of the treatment? ). John is very restless, can't sit still for long.

In reply to your question, the answer is 'Whatever satisfies her'!

I tell John he's been quite ill, but the medication is helping, and we're trying to make him stronger. Sort of side-stepping the truth a bit, but it keeps him happy. Only you know if that would work with Dee.

Love,

 

[Nebiroth]

That is exactly the approach we used as well. Most people are willing to accept that they may have problems remembering things - it is generally accepted as being "old age" and, thankfuly, is not placed in the same category as "mental illness".

There is not the same stigma around memory loss, as there is with say schizophrenia even though they are malfunctions of the brain.

My dad accepts that he has "memory problems" and believes that the Aricept/Reminyl are "memory tablets".

He does not believe there is anything else wrong with him, and would not, even if he was told and was shown the evidence. He has virtually no insight into his own illness.

 

[Grommit]

If it's any help, Jean used to tell people she had Alzheimers disease but it was quite clear that it wzas just a set of words to her. She had and has no real understanding of the meaning of the words.

I believe that it helped her to put a name to her condition even though she did not know what the name meant.

 

[Grannie G]

I told Dhiren he has Alzheimers. he knew he had memory problems but seemed to need more when he asked `What`s really wrong with me?`

At the time, although he was shocked, he said he had thought it was more than just a memory problem. Now he knows he has it, he thinks he can get better, and I`ve no intention of disillusioning him.

It really is an individual decision. We all know our sufferers better than anyone else, and have to hope we say enough to satisfy, them but not enough to terrify them.

 

[connie]

Lionel was very aware when he was diagnosed. He did his own research, and told people he had Alzheimers.

He never, ever recognised that his mobility was going, that he listed sideways, that he had a problem when trying to sit, that he walked at a snails pace.

In his eyes 'he had a memory problem', never did understand or accecpt how many other traits this desease robbed him of.

Dear Cliff, you will find the words - whatever works for you both.
Thinking of you,

 

[BeckyJan]

David was also very aware when he was first diagnosed and was able to tell people that he had Alz. Now he has forgotten all that and I just talk about memory problems and poor mobility due to a stroke! Also we bring in 'getting older now'. It seems to satisfy for the immediate moment.

He worries about being a burden to me, having me as nursemaid etc etc. but it is all just for the moment

If it is discussed at all we seem to divert the conversation to how lucky we are to have what we have!!!

Personally I think it is better for all concerned (ie patient and carer) to come to terms with the phrase 'Alzheimers' or 'Vascular Dementia' or whatever. It is hard but surely better than constantly wondering what is the matter with me!! Each person is so different but that is how it has worked for us and for the few friends we have with a similar problem.

Best wishes Jan

 

[Cliff]

Thank you all so much - TP is marvellous - and so are you.

I'll read all these again tomorrow but there seems to be a common thread running through.

I know Dee will ask me again and I can think about it whilst going to bed,

I've exposed her to Alzheimers' on these pages and no reaction at all.

Bless you all and it was especially good to hear from dear Grommit.

With love

 

[elaineo2]

Dear Cliff,My dad was diagnosed only a few weeks ago.My word has the Reminyl kicked in.he is like a different person.Yes still lapses,but to a degree whereby there is still a change.Dad was told he had Alzheimers by the consultant,mum,and me.And he now "tels" people he knows but may not recognise that he has "alzheimers".power to his elbow!love elainex

 

[Margaret W]

My mum has been told that her brain has shrunk and that there are holes in it, indicating memory loss. She was tried on Aricept for a month, but withdrawn as the consultant said that although the effect of Aricept take a while to work, the likelihood of it working is evident very quickly. Would appreciate someone's view on that - if I knew how to find your view on this website, I am totally lost.

She doesn't know why she is in a home, insists she doesn't need to be, says she is wandering at night any more (well, she isn't cos they put her back to bed), says she is safe to go home again, that is all she wants. I cry about it every day. She wants to be a housewife. A very poor one from the state of the house I have just emptied ready for sale. But it was what she wanted to do.

I am so sad.

But I don't know what thread or piece of knitting this will land up on, and no idea how to check if I get any replies.

Margaret

 

[Taffy]

Hello Cliff,
I am really pleased that Dee is much brighter. It would be so hard to answer her questions but as others have said it depends on the level of understanding. Mum always new in the early days that her memory was failing her and she just associated it with old age. It was not long before she forgot that and then it was just everyone elses fault. Nothing wrong with her! Take Care. Taffy.

 

[Margarita]

But, she faced me with the question: "what is wrong with me, I feel I must do something, go for a walk ?"

All I could answer was: "You're fine - just a bit confused at times"

I can't mention or say any thing to deep about mum memory what is really wrong with her , when she ask me '' what wrong with me '' because it distress her to much she get so confused and think I am insinuating that she Mad because that how she perceive my brother to be , because he has schizophrenia , so it trigger anger in her and she get to distress more
confused


so I tell her it must be because of diabetic , or her kidneys tell her anything rather then what its really all about .

you could tell her she got restless legs , we all get like that get bored and want to do something ,
life society how we where brought up wanting to do something all the time , turning it around on to you other people in the out side world , taking away her worry about herself .

I've done that lots of time with mum , because its hard for me to see , let alone for mum when she has insight . so as it take away her worry I shall keep on doing that .


PS

At the end of the day every human has a human right to know to know they are ill, in my view only

that why I told my mother when I saw she could not handle it mental . I took the blame and I must of got it wrong and change the subject .

so really if you don't tell her your never know her reaction , but then if you know your wife will you may know her reaction if you tell her . if you know its going to course distress , torment her . don't say anything .

 

[Cliff]

To: Magaret W,

Dear Margaret, I am so sorry to read your post.

I hope one of the Moderators will respond to this and advise you how to get the best reponse.

In the meantime, I do wish you well.

Love

 

[Norman]

Dear Margaret W
Medication works in different ways for different people.
I don't know how the consultant can tell if Ariicept is benificial after a month?
Was it 5mg or 10 mg that he prescribed.
Have a look at this fact sheet,hope it is helpful
Norman

http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm

 

[gerrie ley]

the truth

Dear Margaret Like Grommit I told Mollie the truth from the beggining she has had this dreadfull disease for four years I dont regret telling her she did accept it in the beggining but now of course she is lost.

 

[Cliff]

What is wrong with me ?

Thank you everyone.

I've read all your replies again and have decided that in our case, I will keep to the confusion/memory explanation.

Dee has kept asking me today how to protect all her precious things when we move as she has a fixation that we are going/moving/leaving. So I was able to tell her that she was a little confused and we are not leaving. So will use this as my explanation if asked again "what is wrong with me ?"

I have also spoken to the RMN at the Memory Clinic, who inspires me with a lot of confidence, and she agrees with my decision. This is good as she knows Dee well now.

Again, thank you all - that's another hurdle cleared.