Should I tell her?

[her]

Hi, I am new to all this so please bear with me.
My Mum has just been told she has Alzheimers and although she heard what was said by the Doctor, she still thinks she will get over it as if it was flu or something.
Should I let her carry on believing this or try to get her to accept that she will only get worse.
I have to try to decide what will be best for her in the future when her illness progresses, and I really would like her to tell me, the best she can, what she would like to happen. I am kind of scared that I will decide for her and that she will be unhappy. Dont get me wrong I am NOT thinking of putting her in a home or trying to shift the responsibility I just won't to get it right.
So please if you have been where I am now and you found the answer, tell me.

 

[jenniferpa]

Hi there, and welcome to TP

Part of the problem with trying to get someone to understand that they have any form of dementia, is that while they might understand today, will they understand tomorrow? At least one of our posters has indicated that her husband understands he has AD sometimes, and then at other times thinks he's cured.

Can I offer you a word of advice? Never say never. Circumstances change, the disease changes the person, and if you decide here and now you will never place your mother in a residential facility, you may be setting yourself up for tremendous feeling of guilt in the future. Guilt is part and parcel of caring, and dementia is the sort of illness where you never know what tomorrow (or the next minute) will bring.

Jennifer

 

[her]

Guilt Trip

Hi Jennifer
Thanks for the reply. Never say Never makes sence, but I feel guilty already and all I've done is pursuaded her to go to see the doctor with me.
Guess I have a lot to learn.
Jackie (her because that is what Mum calls me when she cant remember my name)

 

[connie]

Hi Jackie, my Lionel quite understood when he was given his diagnosis.

In the beginining it did simplify things. However some five years on he is now in a lovely care home, and only yesterday he asked "why did I put him in there?"

Does not matter what has gone on before, it is now, and now he cannot remember.

Take it as it comes, go with her inclination to talk about things, and with her interpreation of the outcome. (Only my opinion, of course)

 

[jenniferpa]

Hi Jackie

In my first response I failed to address the issue of whether to actually tell her. I have to agree with Nada that much depends on your individual situation. Having said that I would, personally, tell. I would want to be told myself, no matter how scary it might be, but do not be surprised if the information doesn't "stick". I note that she has already been told by the Doctor that she has AD, so I suppose it's not a question of whether to tell, but to whether to keep telling. Most people at the earlier stages seem to have periods where they are more lucid, for want of a better word. Even if she can't remember that she has this condition, perhaps when a "good" period arrives, you could discuss future care arrangements not relating specifically to this disease but just to any illnesss. This is not to say that in the future she will be happy with any arrangements that you put in place: this is not a happy condition, nor at the later stages will it probably be possible for her to look back at previously agreed arrangements and say "Oh yes, I agreed to that". Personally, I go with what my mother said before she became ill, rather than what she might say now. Which is not to say that you don't adjust your expectations, because you do, and go with the flow, or roll with the puches, or any other cliche you can think of. Having reread what I've written, I realise that I am saying essentially what you said: find out now before the disease progresses too far, then at least you've got that to hold on to down the road.

Jennifer

 

[Skye]

My Mum has just been told she has Alzheimers and although she heard what was said by the Doctor, she still thinks she will get over it as if it was flu or something.
Should I let her carry on believing this or try to get her to accept that she will only get worse.
I have to try to decide what will be best for her in the future when her illness progresses, and I really would like her to tell me, the best she can, what she would like to happen.

Hi Jackie

Welcome to TP. You've done well to find us so quickly, you'll find lots of support and information here.

As for telling your Mum, I don't think you should stress the fact that she won't get better. She's been told she has AD, and is possibly blocking it out at the moment. It's a hard diagnosis to handle, and I don't think you should put any more pressure on her, without telling her any lies.

The day may come when she wants to know more, and that is the time to be open with her.

Regarding her future care, have you got her Power of Attorney? If not, that the mot important thing to organise. (Lots of posts on this, and AS factsheet).

Have you been in touch with the local branch of Alzheimer's Society? You'll find them a great source of information and support.

Good luck,

 

[Nell]

When Mum was first "sort of" diagnosed (we've never received an official diagnosis, but her doctor has it written on her notes!), I gently suggested to my Mum that "perhaps" she had Alzheimer's. The outcome was devastating. She was outraged. SHE was not "mad" like all of those people, etc. etc.. Obviously I backed away quickly! My Dad (now deceased) would never accept there was anything wrong with his wife (but would say things like "I don't understand why she's like this" - so was obviously in denial).

Gradually I have talked about AZ as a disease - I read somewhere that if we all lived long enough, 100% of us would get AZ! The article said that it appears in some people earlier than others but is the unavoidable final stage for us all - it is just that many people die before they get to it! I'm not sure why, but this seemed reassuring for Mum, and lately (nearly 2 years on) she has started to half-accept the diagnosis. We still talk euphemistically about "having a bad memory" and "getting older", but I think she really does know she has an illness that cannot be reversed.

Of course, as others have said, does she remember?? I doubt it. She "knows" on good days (ironically) but on bad days, she hasn't a clue!

None of this answers your question but I think it highlights that every case is different. I suggest uyou do what feels right to you - but be prepared to change if it seems not to work!!
Nell

 

[Grannie G]

Hi Jackie, I`ve only just come accross your post. Welcome to TP.

We didn`t tell my husband directly, what was wrong, until he became quite frightened by his confusion and his feelings and asked what was wrong. By that time, it was as if it made it better for him to have a label and we refer to his Alzheimers on a regular basis, whenever he has a bad day.

When he has a good day, he still thinks he is getting better, nearly 2 years on.

Sadly, he shuddered when he heard someone refer to dementia, which told me he doesn`t really understand what Alzheimers is. He can accept he has Alzheimers, but would be horrified to think he had Dementia, so I`ve no intention of enlightening him.