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MiL just diagnosed with probable Alzheimer's - Carers UK Forum

MiL just diagnosed with probable Alzheimer's

For issues specific to caring for someone with dementia.
Hi, my Mother-in-Law has just been diagnosed with probable Alzheimer's. Who's responsibility is it to explain the diagnosis to her?
Does anyone actually have to tell her she has Alzheimers? My argument against would be that if she is capable still of understanding it then she will be distressed by it (wouldn't you and I be distressed if it were us?), and if she's already too far gone into dementia then it won't mean anything to her anyway.

My MIL (91) has vascular dementia, but no one has ever said 'You've got dementia' to her, and I wouldn't want them to! Why 'rub it in'?

What are the practical advantage to her of telling her the diagnosis? Is it something along the lines of 'MIL, it's sensible at this stage of your life for your children to have PoA "in case anything happens to you" ? (in a 'vague' and non-specific sort of way!). Or are there other reasons you want her to know (except for honesty?).

The practical implications of someone HAVING dementia of any kind, of course huge, and the 'big one' is "At what point will they cease to have legal capacity to make decisions about themselves?"

This point may not be a precise 'either/or' - my MIL was 'in time' to make a new will, but NOT in time for that will to be repeated under English law (rather than Scots) when she moved south. My solicitor asked her enough questions about herself which she could not answer (what are the names of your two sons, what is your middle name, that sort of thing) (asked in a very 'let's get all the details down' sort of way, not as a test of her lucidity - she didn't realise she was being assessed!), and so my solicitor just smiled and said, 'Ok, that's fine for now'.....and then had a 'quiet word' with me and said 'The Scots will will have to stand I'm afraid....'. And that is about the only 'formal' test she went through until she had an operation recently and had to be assessed by the doctor as to whether she could give informed consent (did she know what the op was for, and why she needed it!), or whether they had to act in her best interests (the op went ahead, so that was good)

I get the impression from the wording of your post that you think 'someone' SHOULD be responsible, but aren't sure who, and maybe that indicates some family 'tension' about the issue?

I would assume, legally, that it is actually the GP's responsibility to tell, or not tell, of any diagnosis, as in the end, patient confidentiality probably trumps everything, unless she is assigned some kind of 'legal guardian' or a PoA is granted for welfare not just finance.

But that's just an assumptions. Others here will know better than I do.

What do you think will happen next with your MIL when it comes to her welfare? How long can she continue to live an independent life (if that is what she is doing now, of course). Thinking ahead to the progression of this dreadful disease is going to take a lot of discussion with all concerned.
My reason for asking was mainly because she believes she's just had a nervous breakdown and that she's going to get better with time which unfortunately she won't and has got worse very quickly. Thankfully we had enough experience with my FiL to have her will and PoA documents sorted in advance of her condition and the PoA has been registered so that my hubby can now step in to assist with the decisions that need to be made. All the paperwork I've read said that it was important to explain to the newly diagnosed person but no - one said who that should be. My hubby is an only child so all of this falls on his shoulders (in communication with her sister and sisters-in-law). I see a tough year ahead based on the speed of things so far.
Hmm, is the paperwork related to financial matters etc etc and so has a degree of 'formality' that seems to require a person to understand that they have no understanding (or soon won't)??!!!!

If there is no compelling legal or financial or medical reason for telling her her diagnosis then, again, I can only say that to my mind, deliberately telling someone that they are quite literally starting to 'lose their mind' is unnecessarily cruel. What would be gained by her knowing that terrifying fact?

Personally, I can't see it harms your MIL for her to belive she had a nervous breakdown, and leave it at that .I've become quite adept at 'fine tuning' my answers and information that I give, so that it doesn't spell out 'MIL, you have no legal capacity and are completely overwhelmed by dementia'.

It wil lbe interesting to read what other more experienced members will say!
An interesting moral dilemma. Do we have the right to withhold information?

In my mum's case the consultant told her very bluntly. She did not understand or possibly hear a word. I explained it by saying,that her brain was declining as other parts of her body were. In her case her legs. I said the tablet was to make sure her brain didn't get any worse. Of course it did but by then she did not understand a thing.

I do understand the dreadful responsibility. I too am an only child and also single. The buck stopped with me.
Looking back I wish that the consultant hadn't told my Mum she had Alzheimer's.

From that moment on she kept on about "I'm going mad, don't let them take me to the asylum". No matter how many times we told her she was just getting 'forgetful' she was really fearful of being committed (and at 80+ an "asylum" to her was the "mad house" and on a par with the workhouse).

"Contented Dementia" by Oliver James gives a different perspective on how to care for someone with dementia and is worth a read. Basically it advocates living in their world and not trying to "correct" them every time they forget or get something wrong.
My mum has vascular dementia and although at times I find it very difficult living in her world as the book suggests it also works far better than the alternatives. I try to keep things vague on anything we discuss so that when the conversation is repeated over and over it is easy to say the same things and reassure when I answer her. Mum knows (knew?) she has dementia but says things like 'I'm a bit muddle headed today' and I just agree and offer a few consoling words before helping with whatever needs doing. It takes time for this to become second nature but it definitely helps.
Take care
We don't live close to my MiL, we're a good 90 mins away, so all our communications are done by phone and she can ring upto a dozen times a day. She has started making alot of accusations towards us (me - hubby's her blue-eyed boy) that we are taking things, moving things, tampering with things and her accounts behind her back and that we're trying to force her out of her home. Unfortunately she and I have never seen eye to eye so it's very difficult for me to not take it to heart. I have always tried to do my best around her (family's family as far as I'm concerned) but I've had to step back and only help in the background. We're lucky that the people she has been contacting have recognised that she is having cognitive difficulties and hubby is in the process of sorting everything out legally now he has the EPA document. We're not trying to do anything but the best for her and it's heartbreaking to see how things is affecting my hubby - he's usually completely unflappable. I'm not after answers I just wanted to get it off my chest.
It is indeed quite horrible to be the subject of accusations when in fact you're doing your damndest to keep her well and happy! The 'accusation stage' is definitely one beyond the 'ingratitude' stage. My MIL never accuses me of anything (and, thankfully, she was an excellent MIL to me all through my marriage and beyond into widowhood - can't fault her at all, and I'm very grateful!), BUT, it did take me a LONG time for me to get past the fact that she never, ever, ever, ever, ever, ONCE said 'thank you' to me when I had to start looking after her.

With my head I knew it was because of her developing dementia, but it really, really riled me when I was running what I used to call Hotel Jenny, when she came to stay for up to five weeks at a time, and I waited on her hand and foot and did everything for her, devote my entire day and evening to making her comfortable and entertaining her and taking her out and about etc etc, and not a WORD of 'thank you'. She could and did say 'thank you' if I gave her a cuppa, etc, but she was blithely unappreciative of the 'big stuff' like staying with me and me waiting on her hand and foot etc etc and my own life just 'stopping'........

It took me a long time to accept that she had become a 'toddler' again, and would no more think to thank me for looking after than a toddler would....just utterly beyond her ken by then.

I used to have to drive up and down from London to Glasgow endlessly (she could only last out about two weeks on her own)(before she finally couldn't last at all and had to move south into care), and then I'd bring her back with me to stay for weeks, and the ONLY comment she ever made to me about all my driving up and down was to remark to me, somewhere around Manchester one time 'This is a very long drive, isn't it'..........YES, I wanted to yell, AND I DO IT OVER AND OVER AND OVER AGAIN JUST TO LOOK AFTER YOU AND YOU NEVER EVER SAY THANK YOU FOR ANYTHING AT ALL!!!!!!!

But, of course, I didn't. Now that I 'know' she has full on dementia, it's actually easier on me, as I no longer expect her to behave like a 'real' person any more, with moral obligations to anyone. So sad.

Anyway - one practical suggestion, made by others here as well I know, is when they start phoning you endlessly you simply leave the phone to answerphone all the time, and only phone them back once or twice a day. Sanity saver!
Thanks everyone - needed to vent and I can't to hubby (even though I'm his person to vent go)