Should Mum be told that she has Alzheimers?

[Liz5]

Hello. My 86yr old MIR has been diagnosed for a year with Alzheimers - now at moderate stage. She lives in independent living and loves it there. A very independent person who loves to get out and about – always able to find her way home ... so far. But Mum now needs help from carers at times each day. Unfortunately she flatly refuses any help as she doesn’t think there is anything wrong with her.
Her community nurse says that we must have her approval for help, however Mum will not agree to it and she is becoming very agitated and sometimes aggressive, due to her frustrations. We are pretty sure she knows that something is wrong but is in denial, although she has said that she hopes that I would tell her if something major was wrong. To date we tell her that her short term memory isn’t very good now.
My fear is that if we can’t make her life easier for her with care help then she will quickly get to the point where she cannot cope in her home and a move to a care home will be forced on her. And at this stage it doesn’t bare thinking about whilst she is so active.
If she was told about her condition then although the shock would be devastating for her it might help her (if only briefly) to understand the need for carers to help her remain in her current home.
I feel that she has a right to know her destiny however painful. Moving to a home at this stage would be unbearably painful for her.
The Community Nurse still thinks we must bide our time to tell Mum but I fear that time is not on our side. All this frustration and anger cannot be doing mum any good.
Does anyone have any suggestions or opinions in this sort of situation?
Thanks

[FifiMo]

Just my view but I see no point in telling her she has dementia. If she is already in denial then what purpose would it serve to point this out to her? Other than distressing her even more? Chances are she would forget eventually what you tell her or if in denial, refuse to accept what she is being told. Unfortunately for many old people they remember the times when dementia meant being locked up in mental institutions etc and for this reason there is a lot of stigma associated with dementia for people from this generation.

As to the carers, you could tell her that they are free to anyone over a certain age? Tell her the GP sent them so that she can stay in her own home. Would she accept them more if they were referred to as district nurses rather than carers? Or home helps? Tell her they won't be there for long - just a few minutes to say hello - sign the book then leave. Tell her that everyone in her street is getting a visit from them. Say it is for a trial period only -so why not help them by letting them in to do their trial and ask her some questions. Sometimes you find that the more you press the more stubborn they can become - so try and keep it lighthearted and casual. It might help too if you are there for the first couple of visits so that it is quite informal.

Fiona

[sussexsue]

Once mum started needing help I did tell her she had Alzheimers (she would have been around 83 at the time). I was very matter of fact about it and explained that it was an illness in her brain, in just the same way her arthritis was an illness in her knee. I highlighted the positives, such as it didnt hurt, and that she was taking Aricept to stop it getting worse (slight lie there ).

It made life much easier for us as all as she agreed to go to "Alzheimers Club" (day care), and when at the doctors I could always say "mum has Alzheimers and wont mind me mentioning something as she tends to forget things". Anytime she needed any extra assistance, I would say "you just need a little bit of help because of your Alzheimers". In no time at all the word had very little meaning to her, so could be used openly.

It worked for us, but obviously wouldnt work for other people. Only you can decide. I have never used the word "dementia" as that would really upset her.

[SWMBO1950]

My mother also refused help in the beginning but I am afraid I insisted! I was still at work then and was getting there and finding allsorts. Whether telling her she has AD would help is anyones guess as it is not a defined condition. She may be very upset or not believe you or not remember you have told her. It must be very 'interesting' to be inside an AD suffers mind as they probably know they are not quite right but cannot understand what is going on.

She showed off terribly with the carers to begin with but now 3 years later is quite content to have them come in and help (she lives in private sheltered accommodation). She no longer goes out - thankfully - but navigates herself very well around where she lives - she makes lunch everyday downstairs

I think the suggestions from FiFiMo are a good idea particularly using the GP as the reason (wish I had thought of that way back!!). My mother has a lovely doctor and I think had I used that reason I think she would have been more inclined to go along with it without being awkward.

Unfortunately my mother will still buck my help but I always say 'I am doing this for your best interests not mine'.

Best Wishes with whatever you decide to do - but it is never easy

[CollegeGirl]

When my mam was diagnosed, my dad made the difficult decision, with the very best of intentions, not to tell her. I can totally understand why he did this, as I know she would have been devastated at the time. Unfortunately as things have progressed it's made things very difficult because it's become a huge secret and we can't talk about anything at all in front of her. We have to pretend everything is fine when it's not.

I know every case is different, but if I could turn back the clock I would try to persuade dad to tell her at the beginning so that she could have told us what she would want us to do in the future. Now, I don't feel that it's my place to tell her because I have to respect my dad's wishes, and I'm not sure she'd understand or be able to retain the knowledge anyway.

In my humble opinion, it sounds to me like you are leaning towards wanting to tell your mum, and I think you should go with your gut feelings, as you know your mum better than anyone else. If you do go down this road, I think Sussexsue's approach sounds very good regarding explaining the Alzheimer's, and Fiona's suggestions of describing the carers in a different way is a really good idea that just might work.

Good luck and I wish you all the best whatever you decide to do. xx

[Christin]

Hello Liz and welcome to Talking Point.

I am sorry to read that your mum has a diagnosis but hope that you will find TP a great support.

In my own opinion, I do think that telling someone they have Alzheimers Disease is very much a personal decision, however I also believe that people have a right to know. It also depends very much on the way in which the information is given and at what stage of the disease it is given.

There are many AS factsheets which may help you, and this one Diagnsis & Assessment may help you. There is a section on explaing the diagnosis.

Please do let us know how you get on. Very best wishes to you. x

[Witzend]

Hello. My 86yr old MIR has been diagnosed for a year with Alzheimers - now at moderate stage. She lives in independent living and loves it there. A very independent person who loves to get out and about – always able to find her way home ... so far. But Mum now needs help from carers at times each day. Unfortunately she flatly refuses any help as she doesn’t think there is anything wrong with her.
Her community nurse says that we must have her approval for help, however Mum will not agree to it and she is becoming very agitated and sometimes aggressive, due to her frustrations. We are pretty sure she knows that something is wrong but is in denial, although she has said that she hopes that I would tell her if something major was wrong. To date we tell her that her short term memory isn’t very good now.
My fear is that if we can’t make her life easier for her with care help then she will quickly get to the point where she cannot cope in her home and a move to a care home will be forced on her. And at this stage it doesn’t bare thinking about whilst she is so active.
If she was told about her condition then although the shock would be devastating for her it might help her (if only briefly) to understand the need for carers to help her remain in her current home.
I feel that she has a right to know her destiny however painful. Moving to a home at this stage would be unbearably painful for her.
The Community Nurse still thinks we must bide our time to tell Mum but I fear that time is not on our side. All this frustration and anger cannot be doing mum any good.
Does anyone have any suggestions or opinions in this sort of situation?
Thanks

IMO so much depends on the individual and what stage of AD they're at.

If they're at the stage where a) they won't believe you, b) will think you're in some sort of foul plot against them, c) will get very upset and/or angry, and d) and won't remember what you've said anyway 5 minutes later, (or any of these) I really can't see the point.

Of course, everyone is different and the 'compliant' type may take it all very well.
Only you know your own mother best and how she might react.

Personally, when managing AD can be so difficult anyway, I can't ever see the point of upsetting anyone unnecessarily or asking their cooperation for decisions that are going to have to be made anyway. Past a certain stage IMO it becomes like dealing with a small child - if you ask whether they'd like to put their coat on because it's cold outside, or go to bed because it's past bedtime and they're tired, you just risk a pointless argument about something that's got to happen regardless.

I hope this doesn't sound harsh, but it's what I eventually learned over many years of coping with two cases of AD, neither of them 'compliant' - if only.

[Liz5]

Thanks Fiona and sussex for the posts – I agree with what both of you say and that is our dilemma.
The topic of carers (in many guises) has been casually introduced to mum over a number of weeks by the Community nurse but has been fiercely refused by her. A matter of pride I guess and to her it would be admission that she cannot cope .... which she clearly can’t now. I can sympathise with her.
Mum lives in her own flat which is in an independent living complex. Some of the other residents take advantage of carers who are available throughout the 24 hrs if required, so instigating help for Mum would be easy and the staff are familiar to her.
She will accept help from me but that is not a satisfactory situation as she is becoming too dependent on me. We have tried everything to encourage her acceptance of carers, or even eating in the main dining room of the complex at lunchtimes but she still considers herself to young and independent to join in with the others, most of whom are younger than herself.
The decision to withhold diagnosis to Mum until now was deliberate as it would have been too painful for her. At times Mum is still very switched on, very active – she walks everywhere, and is certainly not ready to be in a care home.
We are being led by the community nurse who now seems to be waiting for Mum to see the light and agree to help but I feel we are at a stage that if we wait for Mum to accept help – which she won’t – things could slide so much that the decision is taken out of her/our hands and she is moved into a care home under duress.
I agree that if Mum is already in denial then what purpose would it serve to point this out to her and until now I would concur with that.
But does she not have the right to know. It might just be enough for her to comprehend so that she can help herself and stay (with care) in her home for longer.
I believe that for Mum to move into a care home whilst so active would be more devastating than coping with the knowledge that she has Alzheimers. (We prefer not to say dementia).
I am not suggesting that I agree with telling Mum, I just don’t know what would be right for her.

[Liz5]

Thank you for all your posts. It’s re to assuring to have other suggestions and opinions, some I have tried but have failed dismally and most of which I agree with.
Mums condition is relatively new to us as it’s only been a year and seems to be galloping along. As fast as we cope with one situation mum seems to take a dip and move on and decline a little further even with medication.
Quietly introducing help for Mum may be the way forward. Although the Comm Nurse seemed to think we needed her approval.
Mum certainly isn’t the compliant type and doesn’t think there is a problem. She is confused, frightened and cross with herself and doesn’t understand why we are all so concerned about her. She doesn’t always recognise the amount of behind scenes work I do on an often daily basis to keep her independent.
You are right Witzend it is as though Mum has regressed to a small child. It is almost impossible for her to make a choice from two options and logic has flown out of the window. I can only try to imagine how awful it must be for her. I normally choose an option that I know she would prefer and offer it.
My gut instinct is that perhaps we should tell Mum but I am no expert and I could be completely wrong.
Mum hates it if she thinks decisions are made over her head and she isn’t included in discussions. She knows there is a problem but I think it all stems from the fact that she has had to cope on her own for many years. She just can’t accept that her logic and ability to do things is now limited and declining. She honestly believes that she is doing all the things as normal. Eg she loves to cook or eat out. She thinks that she cooks herself meals each day or goes out for lunch – that hasn’t happened for some months now

[hollycat]

On balance, I wouldn't tell mum she has alz.

Question I am asking myself is:

What BENEFIT would it serve ?

Unfortunately, I can't think of one.

To make YOU feel better about your decision on whether you tell her or not, simply PASS THE DECISION. Get help yourself and seek expert/qualified opinions, thereby taking the stress and decision, in effect, out of your hands.

Hope this helps ?

x x x

[Saffie]

I agree with others that whether to tell or not to tell depends on the person, their understanding and the stage they might be at.Personally, I think it is very much a subjective decision whether to tell the person concerned or not. If somebody has no prior knowledge about AD/VD,they might accept it rather more readily than someone who has experience of a relative with this disease. My mother had AD and my husband was diagnosed with VD (with possiblty an element of AD included). The cons. psychiatrist said it was quite common with long-term diabetics - which my husband is, especially those with PAD. My husband accepted this at the time. I didn't refer referred to it later, rather just helped him when he couldn't remember things, especially words. I saw no point in pressing the point of diagnosis.

However, if he had been told that he had AD at that time, I am sure he would have been devastated because of his memories of the experience we have of my mother and how she suffered. Of course, the stage of dementia affects matters as well as he was able to recall such things then but not now. I don't think it affects how much help people are prepared to accept either really. It is enough to say that they seem to need a little help and hope it will eventually be accepted. Kindness costs nothing - except a lot of patience I know! Good luck to everyone pondering this question.

[Witzend]

On balance, I wouldn't tell mum she has alz.

Question I am asking myself is:

What BENEFIT would it serve ?

Unfortunately, I can't think of one.

To make YOU feel better about your decision on whether you tell her or not, simply PASS THE DECISION. Get help yourself and seek expert/qualified opinions, thereby taking the stress and decision, in effect, out of your hands.

Do so agree about any benefit. Thing is, even the most compliant person, the sort who might say e.g. , 'Yes, dear, I do see that it's going to be for the best,' - they're almost certainly going to forget right afterwards and then you have to go through the whole, patiently-explaining rigmarole again, over and over and over and over and over and over again.
Of course we often have to do that anyway with all sort of things - it's one of the things that makes AD so exhausting.

There are hardly ever any easy answers - O would that there were. :-(

[BethT]

We told my Dad he had 'memory problems' which seemed to satisfy him. He knew he had something wrong with him and having help for his memory problems was ok with him - we didnt want to say the A word and have maybe explaining to do or opposition from him.

[Christin]

I think the one main benefit, if someone is aware and at the right stage, is that they can prepare/arrange any affairs they may have. We missed this entirely with my FIL, he never had a proper diagnosis as far as we know, and when it was finally confirmed by a GP that he did have some form of dementia he was also judged to lack the capacity to make his own decisions. This meant that we had to apply for deputyship and all that that entailed.

Looking back, it would have all been so much simpler if he had had the chance of an explanation and the opportunity to discuss what choices he had.

It is a very difficult decision, and I do feel for you. x

[Petrina]

It wasn't really an issue for us because the geriatrician was open from the start. But then, Dad's no fool and he knew something was wrong.

To begin with, he found it easier to understand his VasD in terms of having had a stroke (although actually it's the hardening of arteries sort not the sort with strokes) and that's what he tells other people is the problem. We openly refer to his dementia as such but when he's having a fuzzy day, it helps to refer more often to his memory being poor. I sometimes explain things in terms of his blood pressure (which has been high for many years) affecting the blood supply to his brain which then leaves him feeling woolly headed.

I cannot for one moment imagine ever not having told him but maybe it would have been harder if he hadn't been diagnosed until he was more advanced and maybe it's different if it's Alzheimer's?

Personally, I would be very angry if anyone kept something like that from me, but then if you don't find out maybe you never get angry.