What do i say?

[Dearth]

What strikes me in this whole thread is that none of us - carers or 'professionals' are comfortable with the truth, or about how much those we are caring for understand the 'truth', how much we should tell the 'truth', whether it is fairest to articulate or avoid 'the truth' ... when any 'decent' person has been brought up to 'always tell the truth'......

Is it just me, or is it that dementia and care for sufferers throws up so many moral/ethical dilemmas that makes this journey so hard??????

Karen (TF), hmmmph

You got me thinking there... don't think I'm 'trying to be funny' with my answer here... just a point I want to raise.

Let's chuck in a scenario.

There's a lady, 86 years old. She tells you that her mother will be wondering where she is. Also in that conversation, she tells you that she's just had her 21st birthday and this is her party... but why is the party fully of old people? and one of them has just told her that she's in hospital! And then she asks you to tell her what's going on.

Now, a lot of stuff there... but believe me, I can give you many examples of similar.

Now in that, if we want to be 'honest' there are the following bits of info you could impart... using whatever verbal/counselling skills at your disposal... but how do you explain the following:

• 1. You are 86.
• 2. There's a good possibility that your mother has passed away (although not always the case... so you check the notes to find out that is a FACT first).
• 3. You ARE in hospital... and the reasons for you being here are...

Now you can see how difficult this is.

If the person has 'insight' then it makes it a lot easier... you could explain issues of memory problems that the person could be aware of anyhow, and discussing it could support and reassure them.

Now, if you were going down the '100% Brutally Honest' line you might say the following to someone:

"You have been given a probable diagnosis of Alzheimer's Disease - this will affect your Memory, Reasoning, Judgement and Language - it IS a terminal illness, and we can try to stabilise it and slow down the proression - but in the end..."

You see where I'm going here - who would ever be so blunt (I wouldn't, I'll be honest - because I think that that would be cruel).

Hope my post here is valid folks.



N.

 

[Lila13]

I don't know if anyone gave my mother a probably diagnosis, but they did give her packets of Aricept and she could read the leaflets enclosed in the packets.

When I asked if the carers were giving her the pills she said she was taking them herself, ("I don't need carers to give me pills").

Lila

 

[Rosalind]

My husband is trying day care for the first time tomorrow, and we (CPN, man from Alz Support and me) have agreed there is just no point in telling him in advance. He gets into the most dreadful state of anxiety about anything new, although usually copes OK when it is actually happening. So the AS befriender is going to take him 'to see' the place, and will then say that as I am going somewhere for lunch he might just as well stay there for his lunch, and I will collect him in the evening.

Have to say I am very nervous of the collecting, as if he kicks up about how awful it has been will be at a loss about what to do next. But anything is better than him going through the level of anxiety he demonstrated before going into respite care at another home, which he absolutely hated.

 

[Dearth]

Good luck with that Rosalind - please reply back and let us know how it went.



Regards.

NEIL

 

[Tender Face]

Hiya Neil!

Talk about a busman’s holiday!!!! You’re a star!!!!

Glad to get you thinking (not that I believe you ever need motivation for that!!!!) I do know I seem to do a lot of ‘thinking out loud’ on this site
and I for one certainly appreciate any different perspective anyone here can offer .. helps me better to think things through for myself….

I absolutely agree with the scenario you have painted but where I think I am coming from is that I have reached a point of having to tell lies/withhold truths but haven’t yet reached Dick’s level of not feeling guilty about it. Did you see how I ‘pounced’ on Brucie’s phrase “a few well placed untruths” and snatched it up for myself???? Well, if it’s only a few, then maybe it’s ok…. Well if they’re well placed that must be positive…..

To me, all loving relationships (as well as others) have to be based on trust - which to me implies honesty. The fact that mum’s dementia is forcing me into being dishonest is growing like an internal demon (well, I suppose it’s company for the other guilt monsters?) - and how ironic that the very person who has drummed into me for so many years ‘Don’t tell fibs!!!!’ is the very person I am PURPOSEFULLY ‘fibbing’ to at times……

Thought loads more on this again today (including the cancer versus dementia battle that rages within me - but I’m not going there….) and did see yet another irony….

How come I’m beating myself up about telling ‘porkie pies’ when mum will swear to me she has eaten her dinner (but I’ve just found it in the bin), tell me her friend has not been to see her for weeks (when I know she’s been every other day for months) etc etc……actually, there’s something here about being on the receiving end too!!!!!

Love Karen, (TF) x

 

[Libby]

It's not telling lies Karen, it's just making up a story of things you think your mum might be pleased to hear!

Libs

 

[Tender Face]

Thanks Libs (again!)

Have been really struggling to change my way of thinking on this one - but I think you've just delivered!!!!!

Love Karen (TF), x

 

[DickG]

Hi Karen

It is not that I have eliminated guilt, I try to weigh up each lie to assess whether I should feel guilty about it or not and nine times out of ten I come to the conclusion that there is no guilt.

Dick

 

[Brucie]

To me, all loving relationships (as well as others) have to be based on trust - which to me implies honesty.

Don't forget that DementiaWorld is different from the one most of us live in, and we have to respond to that world in its own way. To me, also, all loving relationships (as well as others) have to be based on trust. When DementiaWorld comes into the frame, there are other factors to consider. For me, the trust then is Jan's trust in me to do all that is humanly possible to keep her safe, calm, unworried and as far as the word has any meaning - happy. Jan makes no judgements - as far as I can tell - about what I say and do. As was always the case, she trusts me to do whatever I can.

The fact that mum’s dementia is forcing me into being dishonest is growing like an internal demon (

For my part, the word 'dishonest' has no meaning in this context - unless I would be doing something I knew was not right, in that it could cause Jan harm, distress, pain, etc

Ah, perhaps I have just created BrucieWorld, to enable me to keep going. Perhaps I'm madder than a Spring Hare.

... but it seems to work, for me at least.

 

[Lila13]

I don't think my mother ever stopped making judgements about what any of us said and did, (one of the hardest things about looking after her was all the negative comments and criticisms, and the "this is my house so you have to do what I say" attitude) and she never trusted anyone completely.

Lila