Confronting the carer of a Dementia sufferer.

[Irene Harper]

Note to Dancedintherain (what an intriguing pseudonym - what happened that you stopped?) - nice of you to comment that 'I have been very lucky to have every single one of these responses commenting on the topic I have opened'. You've commented also on the posts of Sajehar as being 'refreshingly frank', perhaps I could nominate both of you for the Carers UK Forum's wooden spoon award. Anyway, as I proceed I do hope you don't experience that stepping on treacle feeling.

This post was about something simple, yet fundamental - relative rights. We have had paralysis by analysis on the subject of committee protocol,( most of us are not intending to be MPs), assumptions about probabilities or impossibilities, professionalism, amateurish responses, and at times I have been nauseated by the patronising and mocking tone of some posts i.e. 'but they have each attempted to open your mind on the situation you seem to be trying to control' . You really don't say!

I really would have liked to hear the word COMPASSION for the gentleman carer and his need to look after his own needs occasionally. How so? By taking a much needed break himself, with his wife left at home with a carer.

Now here's the type of letter I'm thinking of writing. For those who might feel the urge to attack the naive, but well-meaning, please don't read on.

Dear X,
Could I first of all start by saying that I have been given no instructions by the committee of xxx to write to you. I am writing because I am thinking of the rights of everyone affected by the sadness of your wife's condition.
It is important as a Carer ( and I have been one myself for many years) to have breaks where you are able to make the contributions we value so highly in the xxx .
It concerns me that I have heard members and newcomers, who are very sympathetic to your intentions in bringing your wife along to meetings, also feel that she would be best left at home with a carer.
I hope you do not take offence at the content of this email, for it is not my intention. Nevertheless I would ask you most sincerely to consider your needs for a short break on a Monday evening and the needs of members attending the xxx.
Kind regards,
Irene

[rosemary]

Whilst I would never 'attack', I almost

never read on

I find the letter in poor taste, cold, contradictory and offensive. That's just me though. I have always preferred a personal touch.

[Dancedintherain]

Rolling on floor laughing.......

Pity you posted its website really.... Have you not heard of Internet security ... or did you post for fun?

Poor Irene, you really are your own worst enemy. Sad.

[Dancedintherain]

My pseudonym?

It is what I want on my tombstone, of course.

[Tristesa]

I'm sorry, Irene, because I do genuinely sympathise with the delicacy of this situation, but I'm afraid that your draft letter is not going to sort it out. To me, it reads as both patronising — a classic example of the irresistible urge apparently felt by all and sundry to tell carers what they are doing wrong, and how they should correct their perverse conduct — and hypocritical. Though the suggestions are couched in terms of concern for the wellbeing of the member and his wife, the sub-text, the actual motivating force, is perfectly obvious; namely, the complaint that some members find the lady's presence disturbing. Frankly, I would be incandescent with rage if I received a letter like that.

Incidentally, committee protocol is not an arcane subject of interest only to lawyers or MPs(!) Well-thought-out rules and administrative procedures can often avert precisely the kind of problem in which you are currently enmeshed. I am not going to apologise for having raised the subject. And you know, some of us have actually spent a good deal of time and thought trying to help.

Tristesa

[julie blake]

Dear Irene,
I am confused your draft email starts that you have been given no instructions by the committee so does that mean you are writing on your own behalf it does appear as though no one else feels strongly enough to want to push this couple out of the group .As Sajehar said this could backfire because people will back away very quickly from this when the proverbial hits the fan they might mutter in agreement with you now but the phrase run with the hare and hunt with the hounds comes to mind.If you must go ahead with it please don't expect a better response by telling the gentleman it's for his own good he needs a break that sounds very patronizing if he wanted to and could leave his wife with another carer he would that is his decision. As a committee member it is not only your right but your duty to look at the needs of the group as a whole but please don't try and make it better by telling this man it is for his own good.I can see where you are coming from with all of this but I wonder why you are asking people on this forum how you should word this email/letter we are all here with our carers hats on you are more qualified and capable than me at least of writing a letter I think you might find advice that suits you better elsewhere in drafting difficult letters if that is what you are set on doing but without the backing of the committee and the support of the rest of the group I would be inclined to hold fire and see what happens because this could backfire and you could end up being vilified.I don't mean to have a go at you or be negative but I feel I have to call it as I see it
Regards Julie

[Sajehar]

I’m confused too??

I was under the impression that the committee itself wanted Irene to write this letter on their behalf, which is why I so strongly recommended she got all those who agreed with its contents to all sign it.
Having re-read her draft I’m now under the impression that she’s doing this letter writing entirely off her own bat.

Irene, you may think you have the backing of various committee members, and you may even have it in private, now.
But do you honestly think that if this man were to put in a formal complaint against you for sending such a letter, that they would openly admit to that in public?
This man is a former president, after all. They’re not going to want to appear in public as if they’re attacking his wife – someone with Alzheimer’s! – by backing you up, no matter how much they may agree with you in private.

You may well even achieve your stated aim, that he leaves his wife at home, but they then might ask you to leave. Having done the dirty work for them, they may then wash their hands of any bad blood by washing it off with yours.
I should imagine that a public speakers public reputation is important to them, and will not want to tarred with the brush of being instrumental in having an old lady with Alzheimer’s barred from meetings, for that is how it will be publicly perceived, whatever the finer ins and outs.

If this kerfuffle comes to a boil, I wouldn’t be at all surprised if it ended up in the local rag, with you being cast in the role of the Cruella De Ville of the Belfast speaking scene, with your biggest supporters in ‘private’ now being your biggest ‘public’ detractors.

Therefore, unless you’re hell bent on being a sacrificial lamb for the greater good of the group, I strongly recommend that you show your letter to the committee for approval first, and that they show their approval by signing it. If they feel as strongly about this issue as you do, then they should have the courage of their convictions and have no trouble signing it. If they do have trouble signing it, then at least you know where they stand.
Otherwise, I suspect you are about to stir up a hornet’s nest, and it’ll be you who gets stung.


Dancintherain… cool epitath!
Can’t have a decent send off without bagpipes!

[charles47]

Sajehar, far from taking the wooden spoon, your analysis of the potential fallout is pretty much spot on.

While the club can wash its hands of you, Irene, you can't wash your hands of the reputation it would gain you.

Good luck with that.

[no1mum]

I have spoken up and said I would independently write to this carer stressing that he needs to look after his own health, give himself a break away from his wife etc. plus a reminder about the rights of others in the group. I am annoyed that no-one else seems to be able to grasp the nettle of the need to take action.

Above quoted from Irenes first post.

My thinking is that this thread has now run its course, the question was answered, maybe not in the way Irene would have liked, it went a bit off topic for a while and then the email/letter to be sent to the gentleman was posted up. I think that now would be a good time to draw a line under the thread and for us to move on.

[JHR57]

Again as a carer to my Mum with Vascular Dementia I have followed this thread right through and I must admit I am now beginning to think that the "wooden spoon" that has been mentioned has been placed in the wrong "persons" hands - every post on here seems to provoke anger and resentment in those looking after loved ones who have this dreadful disease and rightfully so, no one knows the horrors of this disease unless you live with it - I know I need the occasional respite from my Mum but unless I have someone I truly trust to look over her it is not respite at all..... If I had received that letter I would be seeking professional legal advice on the next course of action it just beggars belief that anyone with any amount of compassion would even think to send it (you see that's the anger taking over again)............. not everyone will agree but I am still entitled to my opinion even if the brain cells are slowly seizing up due to lack of challenging use.......but I for one wouldn't trade my Mums final years of relative serenity for my own personal gain, but then again in the human race some of us are like this and some obviously not. Whether the gentleman in question has invoked this action by his own previous action is not the issue primarily the compassion should still rest with his wife - what a society we sometimes come up against as carers of the suffers of dementia hey folks - RANT OVER