About to tell mum diagnosis..help/advice welcome

[Amethyst59]

We all start out like that. But truth and dementia are not compatible. No matter how hard you might try to keep them together, it's like trying to push magnets together... the harder you try, the harder it gets for both sides.

Lies, untruths, deception, misdirection; the word itself doesn't matter. What matters is what's in your heart as you try to smooth the inevitable decline for your loved one. Truth can be used to manipulate in the hands of immoral people, and lies can be used to sooth in the hands of carers. You will learn to lie and you will learn to do it well... so well that sometimes you'll look at yourself in the mirror and wonder where this person came from.

Good luck, whatever you choose to do. I'm lucky now because I've battled through the period when I had to take control of Mum's life for her. Now all I have to consider when I open my mouth in front of her is "will what I'm about to say make her feel better or worse?"

I just wish I could stick to that all the time instead of just when typing online and pretending I know what I'm doing!

Oh this is perceptive, and so helpful. And honest! I know just what you mean about real life not always matching what we write! I'm not getting the 'truth' bit right very often. Because my OH is still so 'with it' a lot of the time, the dementia often takes me by surprise, and so I react as I would to my 'real' husband...and arguments and upsets follow. It is so hard to remember that it is the disease making him like he is. When he is not 'with it' I actually find it easier to go into 'professional mode' and cope better.

 

[Patr1ck]

Hello Patrick,
I have always been an 'honesty is best' person having been brought up like that by my parents. I did find it very difficult to 'sugar-coat the truth' with my mother but really. looking back in hindsight, it is often the only way to cope.


Yes she does, . . .but her ability to 'cope' with the truth is quite another thing. Even supposing she were to remember the conversation and you don't end up having the same conversation over and over.

Back in 2010 when my mother was finally 'diagnosed' the Psychologist came straight out and told my mother. I was furious and kept trying to make signs at him behind my mother not to tell her. Later when I challenged him on it he simply said, 'It was the patient's right to know.' I suspect he had not himself ever had a person close to him with dementia and had simply no idea of the devastation of that diagnosis, particularly so for my mother and I, because we had seen the ravages of severe end-stage dementia with other relatives. My mother was only too well aware of what that 'diagnosis' meant.

To be honest my mother who had been showing symptoms for many years before, suddenly did a nose-dive during the next 6 months. The Aricept did not help at all, probably because hers was Vascular rather than Alzheimers, and she never re-gained that 'competency' which she had retained up to that point. I ended up caring for her and after 18 months I was at the end of my tether, my husband and I hardly ever saw each other and we were also caring for his 90 year old parents too.

I do think that you need to consider carefully 'how much of the truth' you tell your Mum When I'd reached the end with mine and knew we would have to put her into a Nursing Home. I kept referring to how 'posh' this hotel was and did she remember how we'd had our wedding reception here. Which of course she didn't remember but it seemed to comfort her that she had enough money to live in a posh hotel. This was at the suggestion of another resident's relative who never told his mother anything different during her entire life there. Of course it was fortunate that it had indeed been a hotel and one where we'd had our wedding reception, with chandeliers and all the accoutrements of a large country hotel which made it easier for us.

Hi Lemonjuice,

I get this....and what you write is exactly what I have been mulling over...first dilemma is if anyone is telling my mum, I want it to be me..or at least to be there...Now that the word 'Alzheimers' may be planted in her head (see reply to Katrine), she is the type that that may go the the Dr and ask directly 'Do I have Alzeimers?'....and the Dr will have to answer....I don't want her to be on her own when/if she finds out.

What you experienced is probably the thing I fear most...nose diving or going into a downward spiral...Although mum is a strong person...I don't think anyone can estimate or underestimate the reaction on learning this news....and we only get one chance at this now..right? She may forget over time......she may not......she may understand the full implications...she may not.....and as you say...having the same conversation over and over......that may be torturous. Such a dilemma!!!

You've been incredibly helpful here...thank you so much....please let me know more if there's more you could add....I got a lot out of this...Thank you!

 

[Rosettastone57]

Hi Katrine,
there will only be two of us there...sorry that wasn't made too clear.. and was planning a gentle conversation to start with...I think one of the reasons I want mum to know, is that I feel like I am entering a lying and deceiving area...and that is the last thing I want with mum.

She was supposed to start taking the memantine starter pack weeks ago.....I told her that these were for her memory.....while I was not there, she collected the memantine herself and while at home, started to read/scan the medical leaflet inside (she never reads this stuff..never).

When I got there..she mentioned under her breath..'alzheimers'...as if to test me..as it was obviously written on the leaflet...I managed to ignore it this time...but I didn't feel so good about it.

To get her to continue taking the memantine, I feel I need to be honest with her...as she has never been a 'pill' person. If we have the conversation, at least I can tell her what they are really for, and if she doesn't want to take them, then that's her decision...right?

AS also say that they feel the patient always has the right to know. She has been ok at the doctors when the Dr mentioned 'early onset dementia' in front of her.......I'm not sure how much of that phrase she understood.

She is also asking/hinting what is wrong with her...but not necessarily in a direct way...she knows something is not quite right...My mum does have a right to know so she can make decisions while she can, right?

Thanks for you response... I am open to more advice or suggestions from you

When my mother-in-law was diagnosed 2 years ago my husband and I decided that we would simply tell her that she has some memory problems and that we were here to support her and take over anything that she felt upset angry about. She has been in complete denial and does not accept any way that there is anything wrong with her and this has continued for the last two years and I expect it to continue in the future. Now we don't even mention the word dementia what we do is try and keep her calm as much as possible to do her increasing agitation and verbal aggression. And I'm sorry to say the only way of doing that is to lie to her there's no way that we will tell her the truth about her illness now or how it might deteriorate in the future.

You may find as time progresses that in fact she will be unable to make any decisions about herself her medication what she actually wants. And I'm talking about even the most basic of things she cannot choose for herself even a meal her clothes or what she even she wants to drink. Is all very laudable to say that you would be honest with her that I'm afraid as time progresses you will find that things may have to start to change in order to keep her calm . My mother-in-law does not understand in any way any logic or reasoning and we can no longer have a discussion about her needs. I simply tell her what's what is going to go on I don't make let her make a decision. You may find that your mother may need to be prompted to even take her pills.

I have read this forum now for many months and I'm not alone in saying that lying to the person with dementia sorry to say is the only way forward. I used to think that my husband and I were the only ones who made this decision to deceive my mother-in-law over a number of issues including finances to make sure that she has no stress and worry . But in fact I have found that many people on this forum do exactly the same thing and I don't feel bad about it at all. Nor should you

 

[Bunpoots]

I haven't had to lie to dad - yet - I just keep things vague and upbeat and make sure I look after him as well as I know how. But if I had to I would tell a white lie, for now distraction is working for us. I don't think reminding him that he has dementia would do either of us any good...

 

[Sammie234]

First post....mum diagnosed 3 months ago and between 4 sons we agreed not to tell her fearing the worst.....now agreed it would be better and easier long term to tell her, which we will do next Thursday. Apart from the usual, letting her know that we are there for her and will be there to help and support and of course, we love her.....any other advice would be most welcome as I can't currently think beyond what I just mentioned......I'm feeling totally blinkered.........Any other advice or suggestions most welcome so we can prepare as best as we possibly can..........thanks in advance......oh, mum is in early to mid (I believe) stages...so she is aware, although conversations are becoming shorter. She will know what it is....but not necessarily what it really means.......thanks

Hi Patrick,

My husband was diagnosed in 2015 with early onset dementia/alzheimers he was 64 work had sent him home with the suggestion he saw a doctor, they had been noticing deterioration with his work he was a manager, we had noticed looking back about repetitive conversations. Anyway had tests done and a scan which showed some deterioration to left side of the brain then memory clinic during which time he was off work sick. The doc finally told him what the diagnoses was. He has never accepted it, despite all evidence to the contrary and has been in denial since! He hates that he can't drive, obsessess about our money I tell him what we have he says oh that's ok then 10/15 mins later asks again multiple times a day. Some times I think the least said the better. Anyway we had our wills done and then sorted out a POA . Now we just get on with life as best we can. Whatever is decided I can only wish you and yours the best outcome.