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Confronting the carer of a Dementia sufferer. - Page 3 - Carers UK Forum

Confronting the carer of a Dementia sufferer.

For issues specific to caring for someone with dementia.
81 posts
In addition could I also thank, Sajehar, JHR57, and Rosemary. Regards, Irene
Irene, I honestly don't think that any of the members who replied to you were guilty of anything worse than a natural, emotional response based on protectiveness towards those with long-term illness and their carers, and I did not see anything that a moderator should have edited or deleted. My own caveats were based on my feeling that the situation was not quite as simple as it appeared, and my natural tendency to analyse and react intellectually rather than emotionally.

One of the problems about communicating in writing (as I think someone has already mentioned here) is that nuances of tone and expression are lost, and a text may give a false impression. (This is part of the reason for the common use of emoticons in internet discussion groups, to try to substitute for the facial and vocal subtleties that are lost). On a highly emotional subject such as this one, there are always dangers of misunderstandings. I have sometimes been accused of sounding 'cold' or 'haughty' on internet forums, usually by Americans much younger than myself: my slightly formal, slightly old-fashioned, British prose can apparently give that impression when read by a young American. Your first post, and indeed at least one of the later ones, did sound unsympathetic and exasperated, even though they may not have been intended that way.

Am I right in suspecting that there is already a 'history' involving the group and the gentleman with the sick wife, involving matters that were nothing to do with her? If so, I doubt whether this is the right time or the appropriate context in which to bring your concerns into the open. Both the poor lady herself and her husband are too vulnerable, and with hindsight, you would probably deeply regret taking what amounts to punitive action. Imagine how you would feel if you effectively chased him out of the group, and a couple of weeks later, his wife died.

Having said that, I think that some of the issues you have raised are valid and interesting. The wider social lives of carers, dementia sufferers and those with whom they come in contact are full of challenges, pitfalls and potential hurt feelings.

I don't know the format of your meetings but is there no way you could accommodate this couple ie encourage them to come for the latter part when the less experienced speakers have done their bit so that they are not interrupted and a shorter session might suit the lady better also if you do write the letter I would be very careful to get the other commitee members to sign it as well because I have a feeling when this man stands before them with tears in his eyes and his dying wife at his side and asks do you all feel this way everyone in the room is going to say no not me not really it is everyone else so for your own sake Irene make sure this is what the group or at least the committee really wants and not what you think should be done.I hope you find a solution that meets every ones needs this is a tricky one x
To Tristessa and Julie,
Thank you for your kind and helpful support. The Secretary and also on behalf of complaining members asked me to write a letter . I told her I would first of all contact a Carers Support site for advice. That was the background to my action. Best wishes, Irene
1. I stand by my original post.

2. It is debatable whether my post was any more or any less an emotional response than The OPs reaction to posters who did not give her the answers she wanted.

3. In addition, I see the irony is this. A Speakers group with the objective of improving their speaking skills. And a dementia CARER and his caree.

As some of you will be aware many dementias victims have problems Quite early on with LISTENING skills. Later, verbalisation skills can deteriorate to the point that communication becomes mere noises. Followed later by silence and a total locked world.

I wonder which skill is the most important.

(Tristesa ... No wrath from me, honest!)

4. Irene, you could also try asking the question on the Alzheimer's website.
Irene, I sincerely hope you will be able to find a solution to this that alleviates the problem and does not hurt anyone needlessly. It is a genuinely difficult dilemma.
It may (or may not!) help to try to envisage it in the alternative form of someone who cannot attend an event that requires some silent listening and attentiveness unless they bring their hyperactive 5-year-old child with them. You need to be fair to all the members and address their concerns, but you need to do that without hurting or disrespecting either the parent or the child. I honestly don't think there is an easy answer if the parent/carer does not elect to forgo the meetings him/herself.
I wish I could think of more constructive advice, but my own feeling is that your group needs, out of courtesy, to live with this situation for as long as it lasts. It may not be very long, and if you bear it graciously, you will feel glad later that you did so without causing more pain to those who are already suffering.

I would be obliged if anyone who has nothing to offer but condemnation could consider not replying. I would welcome hearing from people who have the capacities of empathy, and understanding reference the issues raised in my posts. Thank you.
Irene Harper

You simply haven’t given enough relevant info for people to be able to offer empathetic understanding, advice or ideas.
Exactly what kind of speaking group is this exactly, for instance. Amateur/hobbyist or hoping to make a living out of public speaking or simply to gain confidence?
If the primary purpose of your group is social (likeminded people sharing a passion and then a pint afterward) that’s very different to people wanting to turn professional.
Your posts are very unclear on this. My first impression is that it was mainly a social thing, but your last one makes me think it’s more professionally based. If you were to clarify this, I’m sure you’d get more useful responses based on facts. But only you can supply the facts... we're not mind readers!

You implied in your last post that the group was in financial danger because of this man and his poor wife. If so, has your group already actually made its mind up to give him an ultimatum? If so, did you ask the forum for help in how best to do this, or whether you should do it in the first place?
Again it’s not made clear. Perhaps because you don’t really know yourself. If so, say so straight up. If you resent the task you’ve been given to sort out, admit it. There’s no shame in being conflicted. I suspect that’s what you are.

However, you’re heading was amazingly insensitive. Confronting the carer of a dementia sufferer
I assumed this thread was about some public spirited soul wanting to confront a carer about cruelty to a caree or something, something important. Surely the word Approaching would have been more appropriate in the circumstances you described.
I bet one of the lessons your group drives home is the importance of 'first impressions.' I bet another one is the importance and power of words, and to choose them carefully. Yet, you broke both of those rules, so it’s a bit rich to accuse others of lacking empathy and understanding, and then wanting to know why the moderators aren’t slapping the cyber wrists of those who had the temerity to criticize you.
Rightly or wrongly, you’ve done nothing but criticize this bloke – he won’t pay for help, or use his daughters, take care of himself, etc – yet you object to it here regarding yourself. In my book that’s called hypocrisy.
We're all guilty of it from time to time, it's all part of being human. Admit being human, and I think you'll reap much better responses.
For what it’s worth, I personally think you’ve been given excellent feedback by the likes of Triesta, etc. Of course, what you do with it is up to you. I wish you luck with your dilemma.
Hi Irene,

Just to add my point of view but again, as I support my mother with dementia, it may not be what you want to hear. However, if you ask those who live with dementia every day, you can expect an impassioned response

Firstly and most importantly, do not send a letter. I fail to see how this can be written in any way that will not be upsetting and/or cause offence. If your post here is deemed to be inflammatory, imagine the damage a letter could cause.

I do understand the problem. Why don't you and perhaps one other individual close to the gentleman SPEAK to him and ask his advice? Maybe his wife could come along for half the group with a carer who could then take her to a separate room? Would the club members perhaps wish to contribute to pay for the carer, as they are so concerned about it??

Your local Alzheimers Society and/or Age Concern may also be able to provide some advice and support.

Good luck, Anne
I would be obliged if anyone who has nothing to offer but condemnation could consider not replying. I would welcome hearing from people who have the capacities of empathy, and understanding reference the issues raised in my posts. Thank you.
Irene Harper

Sorry Irene, I didn't realise that you only wanted people who agreed with you to post, you should have said. Thank you for pointing out that as a carer for my Mum who has dementia and for my Dad who had MS, I wouldn't know anything about empathy and understanding.
Hi Irene

My mum's only got early stages dementia. So I've been following this tread with fascination; I strongly suspect I've got this to come if she lives long enough. Forewarned is far armed and all that.

I've been watching a lot of telly of late (watching out for mum before I'm accused of lead swinging; I'd much rather be active) and you sound a bit like Hyacinth Bucket in your posts.
But you've obviously touched on a raw nerve... I think you may have done more good than harm by inadvertently highlighting certain issues.
Still think your title was rubbish though; 'Confronting' for god's sake! That's a red rag to a bull if ever I saw one. No use complaining if a bull charges if you wave red flags, is there?
81 posts