Tell or not to Tell

[Vkleisner]

My father (67 years) has been diagnosed Alzheimer 6 months ago. My mother (64 years old) live with him. A doctor recommended us not to tell him about his desease. We don´t really know what to do. We fear that if we tell him he might depress very much, we don´t really know. I have a brother (42) and a sister (27).
Thanks for any comment about it.

 

[Brucie]

Hello and welcome to Talking Point.

whether or not to tell the person is a difficult thing to decide. I believe that decision is best taken by the immediate family as everyone there - the patient included - has to live with the development of the illness.

I assume that your mother had been told?

Because dementia develops at different speeds according to the type [Alzheimer's, vascular, etc], and according to the age of the person, and according to the person themselves and their state of health otherwise, it is difficult to understand how long they will understand what they have anyway. Does that make sense?

I chose not to tell my wife, instead we referred to her 'memory problems'. After a year, I don't believe she would have understood if I had told her then anyway.

Ask yourself "what benefit will there be for my father, if we tell him?" Perhaps that will enable you to decide.

There is no correct answer here. You need to do what you think is best for him, and for your mother, and for the family generally - but mostly, of course, for him.

Best wishes

 

[Geoff]

We decided not to tell

Hi VK,

Like Brucie we decided not to tell my mum that she had developed Alzheimers at the age of 53.

We as a family weighed up the pro's and cons and decided that there was no real benefit in telling her especially in the very early days. She had been a nurse and so would know what lay ahead.

We thought it was better that she enjoyed the few years of being "just slightly forgetful"without knowing the full extent of what lay ahead.

It's hard to know if the right decision was made, maybe she would liked to have known so she could put her affairs in order etc, but we felt at the time not to tell her was best, and seven years on I think it probably was.

All the best,
Geoff

 

[Norman]

VK
I didn't tell my wife 7 years ago,we both talked about her memory problems.
Over recent years she has asked many times"What is Alzheimer's"?
I have told her it's what you have,it doesn't register however.
To us now it doesn't matter what we call it.
Norman

 

[Sheila]

Hi all, we did the same as Norm, memory problems were the problem etc. This was because Mum was already saying so herself. Later on, when she asked about Alzheimers if it was mentioned at assessments etc, I just said, that's the name they give to your memory problems. It never seemed to bother her, guess it mostly went over her head by then anyway. I know it would have shattered her at the beginning had I made a big thing of it though, and I wouldn't have hurt her for the world. Love She. XX

 

[Canadian Joanne]

We were unable to tell

We tried several times to tell my mother. She was in complete denial and was accusing my stepfather of plotting against her, telling the neighbours lies about her, etc etc. I was advised by various health professionals that there wasn't really any point. We too started to referring to her "memory problems". It seems that memory problems are okay, but the Alzheimer's label is not.

What is most important is how you think your father will react. And is he the kind of person who needs to know what's going on? My mother always preferred to ignore unpleasant things, she didn't want to face issues so for us it was better not to tell her.

The important thing is for your family to enjoy your father as much as possible now. Time will go so quickly and your father will change. Keep him to your heart and love him.

Good luck.

Joanne

 

[daughter]

Dad was too far away into the Alzheimers to understand the word by the time we could even mention it in my family and I'm glad because I'm not sure how he would have handled it. Even though he has had depression in AD, I feel he would have been worse if he had been told while he was still aware.

Yes, the time now with Dad is precious - if there's just one good thing to come from AD it is that realisation for the other family members... Yet I still can't help 'if only-ing'.

 

[Michael E]

Really interesting - learn a lot here.

My wife is the same - in complete denial that there is anything really wrong - the neurologist also said not to tell her it is Alzheimer's as the shock would be damaging.... We live a sort strange existence of not admitting anything is really wrong.... she did see the word on a letter once from the neurologist about a condition I have and was upset but now she has 'forgotten' the incident.. I will use the expression 'memory problem' from now on - possibly it is a better way altogether -

 

[Lulu]

Can I tell you how it was for us? Following all the tests at Mum's first Memory Clinic appointment, the Consultant told us first of her findings (probable AD, early stage) and we were asked how we thought Mum would take the news if they also told her. I had no idea how she would react, but felt that she should also be told. I think they did tell her because we then all met together to discuss the next steps (Aricept etc), and on the way home, I remember talking to her openly about the diagnosis. She just seemed to 'accept' it all, said yes and no in all the right places, as though it were all happening to someone else, and I was never sure if it had really 'sunk in'.

Since then, there hasn't seemed to be much point in talking of the diagnosis, and I very much doubt she remembers. We just say 'memory problems' if the subject comes up. I think I could tell her anything and she would just accept it because she doesn't seem to understand anything in too much depth -though to talk to her you wouldn't know it since she has all the right answers/replies in all the right places. Sometimes, we will see something on TV about an Alzheimer's sufferer, and Mum feels so sorry for them ..'poor soul', she'll say.

So I believe I could go over and over the diagnosis, each and every day, reminding her, but she wouldn't understand, even if she said she understood. Does that make sense?

 

[mandyp]

I'm interested in all your replies, Dad and I weren't actually given a choice.....the consultant told Mum and Dad at the same time. She was diagnosed a year past in January and still remembers. As time goes on I don't think she appreciated the enormity of it, but at the time she was worried about 'memory problems'. She said back then that she was glad 'to have a name for it'.

Nowadays she seems to accept it quite well and goes around telling people that's what's wrong with her, which to be honest seems to cause them more embarrasment than it causes her!

Sometimes she gets frightened about what's to come, but for the most part I don't really think she appreciates it. She asks Dad to turn the TV over if there's any mention of it on TV at the moment, I think she wants to stay blissfully ignorant.

Not sure, given the choice what we'd have done....it's a difficult one.....I assumed for most people the choice wasn't really there.

 

[Nutty Nan]

Obstacle or Challenge?

The decision whether to tell or not may depend greatly on whether the person is a fighter (will face it head on), or a 'runner' (will get very depressed about it). The difficulty is in predicting such a reaction.

We decided not to tell my husband, as he used to worry about "ending up like his mother". However, I suspect that by the time the diagnosis was made, he would not have taken on board the implications: He is a very intelligent man, yet he has never asked what Aricept is for.
In contrast, 5 years down the line, he wants to know every morning what's wrong with him, says that he didn't used to be like that, used to be able to function, is no good to anyone any longer ....... it seems to me there are different levels of 'understanding', and whilst we will do anything to reduce stress and anxiety, we quite simply can't win all the time.

 

[connie]

Lionel was very aware when his diagnosis was made, and three years later still astounds the carers at the day centre with his insight into his illness. Of course things are slipping away from him quite rapidly now, but he still thinks of himself as the man he was three years ago.
It is heartbreaking sometimes, but I guess eveyone is different. Connie

 

[Sandy]

It seems like the person’s ability to take things on board is one of the key factors in deciding how much to tell. My father-in-law was in the early/middle stages when the diagnosis of dementia was given to him and my mother-in-law by the consultant. The terms Alzheimer’s and dementia did not mean much to them. They are in their early 80’s and I suspect have not heard the terms much.

Also, my father-in-law resisted seeing a doctor for well over a year and doesn’t like doctors/hospitals in general. He acknowledges he has a memory problem (most of the time) but the label isn’t important at this stage. It has helped him to attribute the problem to “old age”. What is important I think, regardless of what the condition is called, is to give the person the opportunity to share their feelings, frustrations and concerns about their changing world – on their terms and when they want to.

I read somewhere that the diagnosis of Alzheimer’s is now what the diagnosis of cancer was 50 years ago (when 90% of the patients were not told the true diagnosis). Perhaps this reflects the fact that there are few treatments available, compared to the advances in cancer therapies.

One thing that I think the Alzheimer’s Society has got right, is to give people with dementia a chance to speak out and share experiences. If you haven’t seen the Living with Dementia section of the Society web site, check it out.

Since I can never make a post without including a link to something else, here are two very good documents that discuss this issue from two branches of the Alzheimer’s Association in the US:

http://www.alz-nca.org/caretips/paris2.asp

http://alzmndak.org/items/tipsprofessionals/tipsheetdiagnosisdiscussion.pdf

Take Care,

Sandy

 

[Sheila]

Hi all, this is such a dificult issue. I think it also depends a bit on the age of the sufferer.I saw a film starring Mia Farrow, "Forget Me Never" it's about a younger person, struggling to come to terms with the disease. It certainly gave me food for thought, especially as even now, some of the things she says and does, I do, now it could easily be put down to normal aging/menopause, but in her case it became worse and was actually dementia. We just have to do the best we can in the early stages, to come to terms with it in our own ways with our loved ones. Later on, as Connie says, the person seems to not really be taking it in, so it doesn't hurt in the same way. This is just my own rambling thoughts on it, we all will be different depending on our circumstances. If you get the chance, watch the film, it's very good. Love She. XX

 

[Chris]

Hello

We didnt tell Mum & even went to great lengths to hide letters etc that might have Alz or dementia on them. I was so scared Mum would have a heart attack (literally) if she knew. Also I was 99% sure she wouldnt want to know - at the time tlat was - she suffered depression all the way through - all 12 + years . Now I wonder if shed had something to explain it all - would it have been better for her - but as others have siad here - peopel cant always remember even when given the diagnosis.

Well into the dementia Mum was in hospital in a room on her own (due to MRSA & hip replacement op) & a nurse burst inot the room & spoke to me (we'd been discussing chair monitors earlier & I'd mentioned the Alzheimer's Society ). the nurse blurted out very loud & clear - "Have the Dementia Care Trust people contacted you" - without thnking I said "you mean Alzheimer's Society" etc etc Then I looked round at Mum and wanted to die - her face was so awful - her eyes were like 'organ stops' - I'd never seen that before - huge - and her little face so incredibly sad & shocked - as long as I'd never seen it before. At that time Mum couldnt find any words - jsut sounds - but she stayed silent & tears rolled down her cheeks . I hated myself for speaking so quickly without thinking and cursed the nurse. All those years we'd protected Mum - I just held her tight for ages.

At least shes not suffering anymore thank God. Sorry to be depressing.

 

[janey]

Poor Chris - you must have felt gutted, and obviously still do. This memory must be so painful, and I know that its not much consolation, but you have to hang on to the fact that you did the best you could at the time. How tragic that your very best intentions backfired in such a traumatic way for you both.

 

[Sheila]

Dear Chris, how awful that must have been for you, sending you a big hug love, thinking of you, love She. XX

 

[Chris]

Thanks everyone - I think it needs to be well known - to professionals in particular - that there isnt a right and a wrong way with this - as several people have already said - it depends on the personality of the person with dementia - but something else equally important too - their life experiences and how much fear of Alzheimer's or other dementias they ALREADY have.

My Mum was a real toughie - without divulging everythng she bore a lot in her life - as cheerfully as anyone could - always said "i'm fine " with a ready smile whatever was happening to her. BUT - she had a very real dread of having to be cared for herself - she had looked after grandfather who lived with us - at a time when 'senile dementia' as it was then called was barely recognised - and said to me then "when I get to 60 shoot me" - such was her dread of getting older & frail - When she reached 60 I teased her about this as she always looked 20 yrs younger & wsa veyr fit till dementia set in at 80yrs. I felt if she knew she had dementia & knowing what was to come - it would have given her more sorrow and fear than living by her prinicple of 'making the best of it' . I know she worried about what was happening to her but what we did or didnt do seemed best at the time.

Sometimes I feel a rather rosy picture is painted - give the diagnosis, the person then has someting to blame for the things that go wrong, they will get a support system in place (relief carers, befrienders, a club for people in same situation where they use computers etc etc etc) but this is only reality for a select few - not everyone wants all that - they want to stay in their old routines , at home , with people they already know. they dont want to go to day centres , or out on a minibus or anything else.

whilst money is pumped into Alzheimer's Society branches to provide services for a few I worry about the majority who are out there with veyr few peopel around them who understand what they are going through . If more money was put into educating general public then family and friends would be able to support and enable the people close to them who have dementia. the commuity services would not be needed quite so much - if more neighbours & friends & fanily were each giving a little of thier time to supporting the person it would make a huge difference. Kind of propping up the person in their existing life style . eg the need for strangers to come in as paid workers to relieve hte carer would be less if more frequent visits were made by family etc Sorry ranbling on tnight !!!

 

[Norman]

Chris
I was so sad to read your post,I can understand how you must have felt.
I agree no two people are the same,I also agree about friends and relatives but!!!!!
It is a proven fact that when AD arrives most relatives and friends?vanish.
This then leaves us with the problem of obtaining a little time and relief for the carers.
If we dont use the like of crossroads and agencies there would be no relief at all.
It would be great if neighbours etc all gave a little time but that aint life is it Chris?
Best wishes
Norman

 

[Brucie]

Hi Chris and Norman

I'm in a quandary because I agree with both of you.

Chris, I agree entirely about there being situations when it is definitely not good to disclose the diagnosis to the patient.

I also agree that the minority seem to get the good facilities.

But I also agree with Norman that aliens seem to abduct almost every friend and relative when someone has the diagnosis, leaving the one who cares to...care.

Unconfirmed Space Agency reports say that the aliens beam the people back to Earth around the time of the reading of the Will.