Do you tell a person with dementia they have been diagnosed?

[Noorza]

This is not for the newly diagnosed section because she's not newly diagnosed, she just hasn't been told because she gets angry and scared at the dementia and alzheimer words referring to her. She will tell you the doctors are mad and don't know what they're talking about so we just discuss brain vessel damage causing her problems.

She is now getting to the point two years in that she is scared she is losing her mind.
She knows she is hallucinating and they are fearful ones now, she knows she can't remember days of the week and she finds the world frightening.

Should she be told she has dementia, she will understand at the moment a lot of the time or just keep to the brain vessel damage story.

Does she have the right to know? Do I have the right not to tell her if it will cause her distress, anxiety and upset?

 

[tiggs72]

This is not for the newly diagnosed section because she's not newly diagnosed, she just hasn't been told because she gets angry and scared at the dementia and alzheimer words referring to her. She will tell you the doctors are mad and don't know what they're talking about so we just discuss brain vessel damage causing her problems.

She is now getting to the point two years in that she is scared she is losing her mind.
She knows she is hallucinating and they are fearful ones now, she knows she can't remember days of the week and she finds the world frightening.

Should she be told she has dementia, she will understand at the moment a lot of the time or just keep to the brain vessel damage story.

Does she have the right to know? Do I have the right not to tell her if it will cause her distress, anxiety and upset?

Hi Noorza

My dad was told at his diagnosis and as we were driving along afterwards he had forgotten! He thought we were talking about his diabetes!

I still stand by the decision to tell him - and when we go to the Drs or have appointments I am always honest with him in the hope the decisions I am making make some sense if only for a few minutes.

I don't refer to it as AD or VD just that he has problems remembering stuff and he seems to accept it. My dad has hallucinations and I try to reassure him that's its because of the memory problems - if late it's much harder as his rapid decline means his understanding is more limited.

I would say from your point of view she knows there's an issue and is scared so maybe telling the truth might ease that anxiety?! At least she will know there's a reason for what is happening to her.

As ever I feel for you - my dad keeps asking me 'what do I do now ?' Purely because he no longer can remember what comes next in the day - it's so sad

X

 

[1954]

This is a difficult one isn't it? I would normally say they have a right to know BUT since MIL diagnosis I know that it causes her distress and is in total denial about it. Now we avoid the diagnosis as much as possible but if needed I will be completely honest even if she is there. IE at the A/E 2 weeks ago I told the nurses and doctors that she had dementia so they could decide on the best course of action. Not easy at all

 

[garnuft]

My Mam is in the same place mentally, Noorza.
She isn't able to manage on her own but can manage to live on her own with support.

She keeps saying 'My memory's terrible'.

It has been terrible for 3 years.

She said to me today...'If you didn't visit me every day, I would forget to take my tablets'.
Aw....me darling Mam.
There was no point in saying that that's why I was there.
She doesn't know.
My oldest sister has told her, when older sister was cross, that she has Dementia....
Mam was gutted but thankfully not for long.

Mam's moments of doubt in herself are so fleeting, I can see no point in pushing it on to her.
My sister rang me in tears for 2 days after she had been cross with mam.
Sister was gutted, Mam was just living her life.

 

[Noorza]

It is so wrong and telling her should only be in her best interests. But I have a total wa**toad of a brother who has cleaned her out of her meagre life savings four times over. If he knows he might stop taking her savings, savings that she will need for her care. That is not a good reason for telling her but someone has to stop him taking her life savings. He wants to think she is thinking clearly as he empties her bank account time and time again.

If I talk to my family my sister may tell her I am saying she has dementia when she believes she doesn't and she will reject me although I am her only carer which is dangerous for her. My sister and her 4 hourly weekly visits wants mum to believe her only carer is not doing the right thing by her. Before dementia my mum trusted me as her carer for 20 years when the rest of my siblings wouldn't have anything to do with her.

I wish my familly weren't such a nasty bunch of self serving toads and they'd put mum's needs first.

 

[ceroc46]

Evening Noorza,

My mum has vas dem, diagnosed March '12.

I haven't told her, and I don't think I will. She most probably wouldn't understand anyway, or she would worry and get fretful and agitated. She does sometimes say that her memory isn't what it used to be, when I'm trying to have a normal conversation with her. I just answer that everyone's memory plays up sometimes, and this seems to placate her. But in our case I don't see what purpose it would serve.

ps. Invisible came this evening, first time in 2 months. I realise it must be difficult for him, he lives a whole 15 minutes away, but, get this, he stayed for a whole 20 minutes! As he was leaving, Mum shuffled out of her room,on her frame, looking at him, and he turned his back and walked out the door. I have never seen something so heart-breaking in all my life. How could he have done that? I'm crying now thinking about it. My heart is breaking a little more every day, as I'm sure all of ours on here, are.

 

[nerak]

Funny you should bring this up today!

The district nurse came today (what a waste of time??) anywhoo she was asking my mum all these stupid questions and the usual mum would say yes id say no and so on draining.............. then the nurse turned to me and said quite loudly "so has the doc mentioned als or dementia??????????? I was stuck to the floor lucky my mum wasnt paying attention but what on earth VERY UNPROFESSIONAL??????

NEVER in 2yrs have I even sugested to mum or mentioned her memory issues as its not fair until you get a diagnosis how could a nurse be so cold?????????

I am in the same boat do we tell her of not??? we will see when time comes?

 

[Noorza]

That's awful Nerak. The first people to mention it to me were the ambulance crew two years ago as mum wasn't showing any real mental health or memory problems but she was falling without any reason 2 or 3 times a week.

They took me to the hallway while mum (deaf) was in the lounge and asked had I considered dementia. Of course at that time I hadn't but they knew her history of heart disease then the falls and correctly put two and two together. They were more on the ball than I was.

People with dementia have feelings and their feelings are very fragile.

Unfortunately as I have a totally dysfunctional family, a brother who would break her financially and a sister who is just utterly cruel.

I think after a long night awake that I have to decide whether the risk of someone else telling her in a cruel and nasty way, or a kind and gentle way (if that can be achieved) might be the balance I have to strike. Which would cause her less pain because both will be painful.

I hate dementia.

 

[Noorza]

Evening Noorza,

My mum has vas dem, diagnosed March '12.

I haven't told her, and I don't think I will. She most probably wouldn't understand anyway, or she would worry and get fretful and agitated. She does sometimes say that her memory isn't what it used to be, when I'm trying to have a normal conversation with her. I just answer that everyone's memory plays up sometimes, and this seems to placate her. But in our case I don't see what purpose it would serve.

ps. Invisible came this evening, first time in 2 months. I realise it must be difficult for him, he lives a whole 15 minutes away, but, get this, he stayed for a whole 20 minutes! As he was leaving, Mum shuffled out of her room,on her frame, looking at him, and he turned his back and walked out the door. I have never seen something so heart-breaking in all my life. How could he have done that? I'm crying now thinking about it. My heart is breaking a little more every day, as I'm sure all of ours on here, are.

I have a brother like that, the only difference is he would have taken her cash link card, hit it for what was left in the account, and then left.

I switch between anger and heartbreak. Then fear as poor mum trusts those who would hurt her the most.

 

[Noorza]

My Mam is in the same place mentally, Noorza.
She isn't able to manage on her own but can manage to live on her own with support.

She keeps saying 'My memory's terrible'.

It has been terrible for 3 years.

She said to me today...'If you didn't visit me every day, I would forget to take my tablets'.
Aw....me darling Mam.
There was no point in saying that that's why I was there.
She doesn't know.
My oldest sister has told her, when older sister was cross, that she has Dementia....
Mam was gutted but thankfully not for long.

Mam's moments of doubt in herself are so fleeting, I can see no point in pushing it on to her.
My sister rang me in tears for 2 days after she had been cross with mam.
Sister was gutted, Mam was just living her life.

Your sister should be gutted I'd be so angry if mine had done that but at least it was only in frustration and God knows it's a frustrating disease. What I can't take is when those with dementia are manipulated and used, frustration is totally understandable, manipulation is planned. Sadly as well as my brother I also have an invisible who can manipulate from a distance and a weekly visit.

 

[Noorza]

Hi Noorza

My dad was told at his diagnosis and as we were driving along afterwards he had forgotten! He thought we were talking about his diabetes!

I still stand by the decision to tell him - and when we go to the Drs or have appointments I am always honest with him in the hope the decisions I am making make some sense if only for a few minutes.

I don't refer to it as AD or VD just that he has problems remembering stuff and he seems to accept it. My dad has hallucinations and I try to reassure him that's its because of the memory problems - if late it's much harder as his rapid decline means his understanding is more limited.

I would say from your point of view she knows there's an issue and is scared so maybe telling the truth might ease that anxiety?! At least she will know there's a reason for what is happening to her.

As ever I feel for you - my dad keeps asking me 'what do I do now ?' Purely because he no longer can remember what comes next in the day - it's so sad

X

Mum will remember for a while but her memory is getting worse by the day. There has been a massive deterioration since her last TIA. She had no idea how I knew what the balance in her account was but she had just given me her card so I could check her balance.

Poor poor lady.

 

[gillou]

Hi Noorza,
Firstly speak to a social worker about your Mum and her relationship with your siblings. Next get some advice on getting power of attorney, the social worker may be able to help. I think you need to take control of the situation as you are providing your mum's care. If your brother and sister don't like it perhaps they might like to take over her care!! I think you need to stop your brother from being able to help himself to her cash, what if you become ill and she needs temporary care, who will pay?

I think that us carers need to get a bit more assertive, society seems to look down on us when in fact we do a very important and vital job. My two sisters in law and my husband seemed to think for a long time that I am some sort of slave who takes all the responsiblity and care for no money and no thanks. Stand up for yourself and be proud of what you do for your Mum, if you don't they will continue to cause problems rather then give the help that you need.

 

[Noorza]

Thanks Gillou, I do have Power of Attorney and had it now for 20 years, My sister who was invisible but now visits weekly for a few hours wanted the courts to take it from me and give it to her. She has manipulated Mum in the most horrible horrible way. Mum no longer wants me knowing what is in her bank but she trusted me for 20 years as PoA.

I know my brother needs to be stopped but when I reduced his ability to hit Mum's account for £250 on the card a day, he went mad, mum got mad and the bank followed mum's instruction to remove me as PoA at the bank.

Not at mum she's ill but my family are awful. I'm worrying all day what to do about it and post like a frenzied mad woman.

I have kept the OotPG informed I think I'll have to breathe in deeply and take on the bank, that will make mum mad but that can't be helped. She's gets mad anyway.

 

[Witzend]

This is not for the newly diagnosed section because she's not newly diagnosed, she just hasn't been told because she gets angry and scared at the dementia and alzheimer words referring to her. She will tell you the doctors are mad and don't know what they're talking about so we just discuss brain vessel damage causing her problems.

She is now getting to the point two years in that she is scared she is losing her mind.
She knows she is hallucinating and they are fearful ones now, she knows she can't remember days of the week and she finds the world frightening.

Should she be told she has dementia, she will understand at the moment a lot of the time or just keep to the brain vessel damage story.

Does she have the right to know? Do I have the right not to tell her if it will cause her distress, anxiety and upset?

IMO a lot depends on the state of the person's short-term memory. If they are going to get upset or angry, or not believe you, and are going to forget whatever you say very quickly anyway, then personally I can't see the point of creating any extra stress.

My mother was told by her GP that she had AD, but had forgotten by the time she got home 15 minutes later. Although she accepted it from the GP (aka God) she would not accept it from us - just became angry and accused us of all sorts, so apart from the initial once or twice we never saw fit to remind her again. There was really no point, esp. when she was going to forget again so soon.

But as always, so much depends on the individual and their own circumstances.

 

[meme]

I think when there's a point your mother is asking you that question, that giving her a simple truthfull answer is called for...you can then decide whether to answer the same question differently or not at all next time...

 

[Canadian Joanne]

We were never able to tell my mother directly that she has AD because every time we tried, she would start getting very agitated. She accepted that "her memory wasn't what it used to be". She did worry about losing her mind but I would tell her that she wasn't losing her mind, she was losing her memory. For some reason she found that reassuring.

I wish she had be able to accept the fact she has AD but she could not. Rather than upsetting her all the time, we just went with the flow.

 

[Austinsmum]

Our Doctor’s and CPN came straight out with it that mum had Alzheimer’s Dementia She was quite stressed at first, trying to find Alzheimer’s in the dictionary (she is a total technophobe) and fortunately it’s not in ours. I think she would have been very distressed if she’d known the truth. We play it down and just say it’s her memory and that we all have blanks now and again. Think she’s forgotten all about it now as she only has about 5 minutes of lucidness per day. But I’d much rather those 5 minutes were talking about something interesting than her prognosis.

 

[FifiMo]

Why tell your mum anything that is going to cause her grief? Your beef is with the bank and them failing to recognise a Power of Attorney document which is (I assume) registered with the OPG.

What you have to do is make a formal complaint to the HQ of the bank and follow their complaints procedure. Point out to them that their actions have now led to a vulnerable person having their savings taken from them. Tell them you have reported the matter to the OPG who have advised that the bank have contravened not just the provisions of a legal document but have made a medical diagnosis that they are not qualified to make about your mother's capacity to manage her own affairs. Do all this in writing. If the bank fail to remedy the situation and make restitution, then forward the paperwork to the financial services ombudsman and get them involved. This cannot happen until such time as you have followed the bank's complaints procedures.

There is no point in complaining via the local branch as they will have little or no expertise about PoA. In the meantime, I would consider removing OT hiding the bank card. Ok, brother can still take mum to the bank to get him money, but it will be recorded that a cashier handed over the money without a card etc! More power to your argument that the bank didn't know if it was New York or New Year!

Hope this helps,

Fiona