Anyone else kept diagnosis a secret?

[babypie]

Hi All

This is not a post for a problem as such rather I am wondering if I have done right thing.

Dad 86 diagnosed 3 months ago with Alzheimers and I have not told him.(He was in hospital at time and the Doctor rang me at home and told me results of brain scan)The reason being that my dear Mom (passed 3 years) had it and it was the most terrible time as anyone that posts on here knows,sadly,themselves. Dad did not treat her well and to compound things she had Capgras syndrome and things got horrendous.

I decided that he does not need to know and so far has no idea. He recently had 2 psychiatrists come out and he is deemed no mental capacity now but he remembers that they were physios!

When we go to Doctors or hospital appointments-he has many for lots of problems- they look at screen and only comment on his "memory problems" to which Dad takes no notice.

To make matters worse he is blaming me for bringing the "army" in, as he calls his carers, consultants, doctors and all other professional people he sees on a regular basis. He is most hostile to me and very verbally aggressive and I guess I wonder if he knew he had the illness would he understand I am doing it all for his best interests

Also he is quite obsessed with money and has thousands at his disposal and I am about to go to court of protection for guardian/deputy ship for his financial affairs. The person has to be told so I wonder what will happen and what he will think when it lands on his mat-no doubt think I am "stealing" his money, because after all as far as he is concerned there is nothing wrong with him.

I feel like I am opening a big can of worms and for what? he has no treatment and obviously there is no cure.

Anyway it was just to see if anyone was successful in hiding it from their relative and do they think it was right decision. Incidentally we kept it from Mom and the only thing she said quite early on, in a determined voice was "hey you pair, I haven't got that dementia thingy going on you know!" bless her soul.

Appreciate any comments.

 

[frazzled1]

Hi All

This is not a post for a problem as such rather I am wondering if I have done right thing.

Dad 86 diagnosed 3 months ago with Alzheimers and I have not told him.(He was in hospital at time and the Doctor rang me at home and told me results of brain scan)The reason being that my dear Mom (passed 3 years) had it and it was the most terrible time as anyone that posts on here knows,sadly,themselves. Dad did not treat her well and to compound things she had Capgras syndrome and things got horrendous.

I decided that he does not need to know and so far has no idea. He recently had 2 psychiatrists come out and he is deemed no mental capacity now but he remembers that they were physios!

When we go to Doctors or hospital appointments-he has many for lots of problems- they look at screen and only comment on his "memory problems" to which Dad takes no notice.

To make matters worse he is blaming me for bringing the "army" in, as he calls his carers, consultants, doctors and all other professional people he sees on a regular basis. He is most hostile to me and very verbally aggressive and I guess I wonder if he knew he had the illness would he understand I am doing it all for his best interests

Also he is quite obsessed with money and has thousands at his disposal and I am about to go to court of protection for guardian/deputy ship for his financial affairs. The person has to be told so I wonder what will happen and what he will think when it lands on his mat-no doubt think I am "stealing" his money, because after all as far as he is concerned there is nothing wrong with him.

I feel like I am opening a big can of worms and for what? he has no treatment and obviously there is no cure.

Anyway it was just to see if anyone was successful in hiding it from their relative and do they think it was right decision. Incidentally we kept it from Mom and the only thing she said quite early on, in a determined voice was "hey you pair, I haven't got that dementia thingy going on you know!" bless her soul.

Appreciate any comments.

hiya,

I really dont think it would be possible to hide this at the "next stage"....better to face things with lots and lots of care, love and support, than struggle in denial. I was going to hide a family cancer diagnosis...but no point now as has re surfaced in the face......i have learnt my lesson....there is no hiding place for illness. If someone asked me if they were dying though , or how long had the doctor said they had to live, i would just say "no one knows these answers, just enjoy each day and dont think past that". There ARE treatments and there MAY soon be a cure

 

[CollegeGirl]

I don't think there's a right or wrong course of action really. It all depends on the circumstances and the person, in my humble opinion.

My dad decided not to tell my mam, when she was diagnosed three years ago, and although I know that he made that decision to try to protect her, it has caused us lots of problems because in front of her we have to pretend all is well, when it clearly isn't. The stress that this causes my dad is absolutely massive and I worry about him constantly. He has no life at all.

I can't talk to him in front of her and as I rarely am able to speak to him without mam being there, that means we have had to resort to passing notes to each other. We can't even talk on the phone. It's awful and very difficult to manage. However, if you are your dad's main carer, this may not be an issue, as you will be involved at each stage, whereas I'm not always aware of what has happened in appointments, discussions, assessments, etc. and can't always find out easily.

He has to give her all her medication surreptitiously by crushing it up and adding it to her food - not ideal I know, but the doctor is aware. But doing this adds to his daily stress, preparing the medication, in case she catches him.

It's now too late to tell her as her short term memory is almost non-existent, so there would be no point distressing her now (assuming that "in the moment" she even understood what it was) because we'd have to keep repeating it and therefore distressing her each time, which we can't do.

On the other hand, what a horrible thing to have to tell someone, and what horrible news to have to receive. I can fully understand why someone would choose not to disclose, for all the obvious reasons on both sides.

However, because of what we are all going through, my husband and I have agreed with each other that if either one of us is ever diagnosed with any form of dementia, then we want to be told as early on as possible, so that we can put plans in place to help whoever is going to be the carer in the future. We just have to accept that to be given this diagnosis will be devastating, but neither of us wants the other one to go through what my dad is going through now.

I'm so sorry for the long post, and I don't know if this will be of any help to you, and I think you'll probably get lots of answers with good arguments for both decisions! You can only do what you personally think is right for your dad, yourself and the rest of your family and the situation that you are facing.

It's such a dilemma, and such a horrible disease.

With kind regards and very best wishes, take care x

 

[thatwoman]

Hi,

I felt Dad deserved to know so I asked the psychiatrist to explain it to him. (He has Vascular Dementia.) Dad listened, was very upset for a couple of hours and has never acknowledged it again! Within hours of being told, he had forgotten it all, and 3 years later I've never felt the need to mention it again. All it did was frighten him, so it seemed unkind to remind him. I also don't remind him that anyone is dead, so we have the surprising situation where I reassure him that his Grandad will be home from work later. My Dad is 85 and his Grandad died before I was born, but it makes Dad happy to think that all his family are around. His Mum is always popping in!

I used to worry about telling the truth, but now I just go with what he wants to hear. He quite often tells me he's been to India this week, or he's on a cruise, and it makes him happy to talk about it. Others may disagree, but we're happy in our own little world.

Love, Sue

 

[zeeeb]

depending on how far advanced it is, it' might be pointless telling him if he is juts going to be super stressed for a day and then forget about it in a week. If you think he'll remember it, it might help your cause to let go of control and allow the help in. But, yeah, if he just forgets, it's not like you are going to go in there every monday and break the news to him again and go through the hell of him realising it all over again over and over.

Catch 22. And unfortunately you will cop the blame for everything, as the closest ones seem to always do.

 

[Witzend]

I would disagree, too. What is the point of telling someone something that's going to upset them, when they're only going to forget so soon anyway? Is there any possible advantage to be gained from it? It's not as if knowing what they have is going to help them in any way, or help them to get better.

Makes you wonder how much these CH staff actually understand the condition. They have probably been told that on principle people should always be told the truth, which is all very well in general, but as many of us on here know, it's not much use when they can't retain any information for more than 2 seconds.

 

[PurpleJay]

I think if the person won't remember the conversation then there is no point in telling them what is wrong with them. It will upset them and then they will forget - what would be the point? In the early stages yes perhaps I would tell someone but in the later stages no as they will forget anyway.

With mum, she wasn't diagnosed until she was already very confused (she has vascular dementia). She went into hospital with a UTI and has had a number of these since. She also had terrible problems with swallowing and had to have a number of gastroscopies. We discussed these problems at the time but not the dementia. She had a stroke a few years back and the doctor said she may have had further mini strokes which affected her mobility. If asked I would have taken this route rather than put the label of dementia to it. Now she usually knows she isn't well but has no concept of her limitations. She has never asked 'what is wrong with me' although she has said things like 'I shouldn't be like this' or 'it isn't very nice for you - me being like this' bless her. Other times she thinks she is fine and cannot understand what all the fuss is about. She thinks she can walk and look after herself when actually she needs to be hoisted, washed, dressed, toileted etc.

Mum is in a nursing home but I don't think she knows where she is. We have explained many times that she needs to stay there because she needs help. I haven't actually called it a nursing home or a care home but I have called it by it's name and said she needs to stay there where there are staff to look after her.

The lady from Dols asked her if she knew where she was and mum told her the name of a hospital. The lady explained where she actually was was and why she was there (because people believe you need care around the clock - mum looked at her as if she were daft). 10 mins later she asked her again if she knew where she was and mum told her the name of the hospital again as though the other conversation had never happened.

Nowadays she is more settled although can be quite shouty when she is on her own. I play along with whatever she says so far as I can. She often tells me she has been shopping with her mum or that her sisters visited (one is dead, the other has been ill and unable to visit so hasn't been for weeks). They are nice memories to have. Where is the harm. If she tries to take herself to the toilet (e.g. she will move her feet up and down in the recliner as though walking but not touching the floor) then I will tell her she needs to wait while I get someone to help and she will say I don't need any help so I gently try to explain that she does and she can become quite agitated. It must be very frightening to have people telling you you aren't able to do things when you think you remember doing them just earlier that day. I am sure mum thinks she is fine and everyone else is mad at times!

Yesterday the psychiatrist went to see her during my visit and asked if she was worried about anything or maybe frightened as the staff had said she shouts out quite a bit when she is on her own. She looked at him like he was daft and he said 'aren't I making any sense' and she said 'no not to me'. Everything is in the moment with mum - she forgets quickly and yet still remembers people and can sometimes have quite a 'normal' chat. She sometimes thinks she is in a hotel and asks to see the landlady (matron)! She will say things like 'they asked me if I wanted to stay for tea and I thought I might as well'. She has no idea how long she has been there, often thinking it is just a short time when she has been there about 6 months now. It can be very sureal at times.

 

[Witzend]

Yesterday the psychiatrist went to see her during my visit and asked if she was worried about anything or maybe frightened as the staff had said she shouts out quite a bit when she is on her own. She looked at him like he was daft and he said 'aren't I making any sense' and she said 'no not to me'. Everything is in the moment with mum - she forgets quickly and yet still remembers people and can sometimes have quite a 'normal' chat. She sometimes thinks she is in a hotel and asks to see the landlady (matron)! She will say things like 'they asked me if I wanted to stay for tea and I thought I might as well'. She has no idea how long she has been there, often thinking it is just a short time when she has been there about 6 months now. It can be very sureal at times.

Same here. My mother once told elder visiting daughter that she was fed up with this job and was going to look for another! That was a new one.

So nice that your mum is relatively settled, though. Who cares what they say or what ideas are in their heads, as long as they're reasonably contented.

One lovely old lady in my mother's CH - always seemed contented - told me every single time I went that her parents and grandma and granddad and all her brothers and sisters were coming later, and they were all going to the seaside together. Wouldn't it be lovely if all of them were living in such happy fantasies?

 

[RobinH]

tell or not

Hi
I'm very sorry to hear your news. you have to ask yourself what is best for your dad. it seems likely that if you tell him, he will be upset & angry, possibly hurtful,then forget. what then? are you going to tell him again tomorrow? And the next day? You have told him he has memory problems and he ignored it. that is a clue. unfortunately it seems likely he will be a difficult patient. he can't help it, and you can't change it, so the secret of making this as good as it can be for you is to accept it. find a way to let off steam if it gets bad. Make the most of any good days or good moments you get. rememberbad as it is for you, it's worse for him. all the best.

 

[Jaxx23]

To tell or not

My mum was diagnosed late last year, luckily I noticed the signs as my Grandma had it too, so got mum off to the GP asap! As far as I am aware, she is fairly early stages, she is on Aricept and seems to be doing well. She still does her own shopping, pays her bills, pays her papers, cooks etc....but does have memory lapses, so all in all Im happy. BUT...she doesnt know she has Alzheimers. I have mentioned that she has dementia, and she is ok ish with that. She did once ask about Alzheimers, saying 'I havent got that have I?' in a scared voice, so I just said no, I dont think so, they havent actually said. And this is because I know how upset/scared she would be, and Im not putting her through that. We mention her 'memory problems' as do the doctors etc. At the moment its plain sailing. Mum is 80, and this is all new to me trying to sort monies etc, so Im sure I will be asking a lot more questions ;-)

So basically, you have to do what is right for you and your Dad, you know him best.

 

[Canadian Joanne]

My mother kicked up very strongly whenever we tried to tell her she had Alzheimer's, so we never did in the end. But she accepted that her memory wasn't what it used to be and we proceeded on that basis.

Babypie, you know your father best. If it will cause more anguish and trauma for both of you to tell him his diagnosis, then don't. I also think it is the doctor's job to do so, not the family's. You do what is best for the both of you, and, in my opinion only, I think you shouldn't tell him.

 

[hollycat]

If we could have got away with NOT telling my mum we would have not told her.

Every decision we seem to take now is based around one simple question:

What benefit will there be if we xxxxxxxxxxxxxx

When the answer is OF NO benefit, we say and do nothing.

 

[traceface]

court of protection

Every decision we seem to take now is based around one simple question:

What benefit will there be if we xxxxxxxxxxxxxx

When the answer is OF NO benefit, we say and do nothing.[/QUOTE]

I received Deputyship order for my mother aged 67 in january this year . When you aply to the court there is a form you can get to have permission from a judge so that you do not have to tell the client that you are applying. It was very simple to fill in and mums gp, and care home manager supported me in not telling her. They said there was no point telling someone who would not understand or remember such a distressing thing. The order was processed very quickly, I have just checked my order, COP9. i downloaded this form from COP website but they will send you it if you phone and ask.

 

[2TT charlie]

It's kind of an open secret. When they diagnosed my father at the memory clinic the doctor explained about dementia levels and said we'd say it was mild to moderate Alzheimers and explained what that meant and what the medication would do and how they would prescribe it. And father sat there and didn't really understand a word, which is just how far it had gone, because he used to watch all the Open University science programs on BBC2 in the mornings and Sky at Night and listen to all the R4 science programs, but it seemed to just go over his head.

I didn't really see the point in trying to make him understand that he has a condition that's affecting his brain and that can only get worse. He says he doesn't know what's wrong with him and I say, 'You're getting old, father' and he kind of accepts that, as he's 92. I started giving him the tablets (Exelon) 'for his memory problems' and now he just takes them and doesn't wonder what they're for.

But I can take him to medical appointments and start off by saying, 'This is my father, he has Alzheimers' and it means nothing to him. I think the word is just noise that he blanks out.

 

[Flick]

My father was diagnoses last year during a 4 month hospital admission. I decided not to tell him because I knew that it would upset him. He's been the type to not want to know bad news, particulary if nothing can be done about it. He insists that he's totally fine but has significant stm loss, so may not remember but I think it would niggle in the back of his mind so we've kept the diagnosis from him. He had a letter from his GP a little while ago, inviting him in to "review his dementia"! I was so annoyed and complained to the surgery. When they told me that he had a "right to know", I reminded them that he also had the right NOT to know. They agreed to discuss it at the next practice meeting and must have agreed with me because they have now changed the standard letter they send out to patient and have removed the word dementia.

 

[worriedson1]

I have told people about my mum's diagnois for 2 reasons

1-I REFUSE to give dementia the power that stigma is. Dementia deserves no power.

2. I woud rather it came from me than from tittle tattle in my area.

 

[babypie]

Thank you

Thank you all for your help. I still have not told him and now I am in a terrible predicament as it has now been decided he will be going into a home. No mental capacity and it will be against his will and with the professionals applying for guardianship and getting deprivation of liberty powers.

Sorry I am late in replying but had a terrible time with Dad falling and going into hospital twice in 24 hours and now moved to older peoples hospital,sort of a rehab.

Been told to start looking for care homes and as he has own house have to sort all that out. My head hurts so much. I may start another thread.

So as well as not knowing he has dementia he has NO idea he will be not ever be returning home from hospital.

Been in tears all day and have asked his CPN to go in and tell him as I cant bear too.

Thank you all for helping me and for all the posts

xx

 

[rosiee]

I think you've done the right thing

I lost my Dad to vas D last year and my mum has recently been diagainsed. I didn't tell either of them, Dad was too far along the line before it was diagnised and it would frighten Mum too much. I very much agree with the policy of: is there a benefit to tell them, if not don't.

Also sympathise with the other stuff you're having to sort out. I can only say that once those bits are sorted out, they'll be finshed and you can enjoy just visiting. It will get better from here on.

 

[nicoise]

Dear Babypie,

So now a second challenge with the care home situation.

I'm afraid I went from my solid stance of my naive younger days that "honesty was the best policy" to "kindness was the best policy" with my mum.

I didn't tell her she had a diagnosis of dementia - I just said memory problems, which she understood about, but wasn't worried about. And telling her that I didn't know what was going to happen, but we would try to make it be as good as it could be. She just wanted to know that she didn't need to worry, and that things would be alright.

And then the care home - that was just where she had to go to get better after being in hospital. When she was better and could walk and look after herself again she could go home.

Of course that couldn't, and didn't, happen. But she didn't need to face the miserable truth - it was miserable enough as it was, and in fact she was safer and better looked after than in her own home.

And she didn't need the burden of being told the unvarnished truth - it wouldn't have helped, and would have been cruel. I wasn't happy about any of it - but that was my problem, and she needed me to be strong for her and make her life as good as it could be.

I'm sorry that you find yourself in this situation, and sorry for your Dad too. It is very sad, and takes a lot out of you as to try to sort it out and get used to it. Keep coming here for support and information as time goes on. Good luck x

 

[Saffie]

I think it would be cruel to keep repeating to a relative that he/she had any form of dementia. The only possible reason would be that in the very early stages of AD, it might be appropriate for medication reasons. My husband was told by the consultant psychiatrist that he had vascular dementia but he added that it was quite common amongst longtime diabetics and was like his peripheral artery disease, only instead of the bloodflow to the legs being affected, it was the bloodflow to parts of the brain. That explained why he could not remember the right words but could still remember numbers. This did explain it in a physical way which I think my husband accepted. He also suggested there might be a degree of AD so would prescribe Aricept. Whether there is or not, we will never know but the fact that he received medication made him feel better. Despite going to the Memory clinic,I never referred to the dementia as such again and I hope he didn't worry about it. As said, it possibly does depend on the person concerned and circumstances but i can not see that it serves any purpose.