Confronting the carer of a Dementia sufferer.

[Irene Harper]

The title of my post seems to have produced a knee-jerk reaction. I feel upset and misunderstood and am most disappointed that no-one to date has offered a balanced perspective. Of course a letter would not be couched in cold insensitive words!

Many of the members have to tolerate shouting out, screaming, crying out, running around the room chaotically.

The Secretary is afraid to represent the members' views because on a previous occasion this gentleman with the wife who has Alzheimer's told her 'she was a waste of space'.

I would be obliged if members of this Forum would not demonise me and appreciate that there are occasions in life where one sided opinions are not appropriate.

[no1mum]

Irene, our replies to your post have been based on the information YOU gave.

I'm wondering what type of strategy, or wording in the letter would be most effective in managing this situation

From what I read this quote is the question you asked and we have answered, we cannot tell you what to put in any letter as the general feeling is that this is an insensitive way to approach your problem, not the route any one of us would go down. As ever if you have a problem with any of the advice given or if you feel any member/moderator has spoken inappropriately then you are able to contact admin with your concerns.

[Bluebird]

I agree with the other replies that have been posted.

Basically, the group are saying ' we don't like your wife being here, so either get someone to look after her or leave', so however carefully worded a letter or conversation would be, this gentleman is going to be very hurt and let down by people that say he is a valued member?? Not nice is it? Your group have already decided that you don't want this lady to attend, but you are all frightened to say something, doesn't that make you think that you all know you are being unkind and discriminating against her?

[Violet]

Irene - it seems to me from your first post that this is primarily more about you than anyone else:

(Quote)
I have expressed to the committee the need to spell out to this carer, that the majority's needs for a calm, and non distracting atmosphere are important, and that he should find someone to look after his wife at home, while he attends our meetings"


This man is to be admired in that, although the situation is getting progressively more difficult as his wife's condition deteriorates, he is desperately trying to hold on to some kind of activity together. It's not really about whether or not he is wealthy and could afford to pay for someone else to stay at home with his wife but let me say that not all the wealth in the world could undo the damage your letter would do to this man who you say is a valued member of "your" group

This situation will not continue indefinitely as nature takes its course - in the meantime please do not send the letter, be thankful for the health you have and hope that neither you nor the other members ever experience what this man and his wife are going through.

[Tristesa]

I think there is a genuine issue to address here, and simply jumping on Irene and branding her 'insensitive' is not going to help or enlighten anyone. I know exactly where you are all coming from and how easy it is to leap into defensive mode (after all, I care for a dementia patient myself), and I agree that Irene's post was couched in terms that pretty well guaranteed the hostile response she has received.

But the crux of the matter is that there are certain activities that cannot be pursued satisfactorily in the presence of individuals whose interest and comprehension is limited and whose natural responses may distract the concentration of others. Very young children, as well as adults with advanced dementia or acute learning difficulties, are not going to enjoy or be able to take part in certain activities and events, and the sensible course of action is for their carers not to take them along. Most people do not take toddlers to an academic lecture or to the theatre or concert hall, because the child would become tired and bored, and his or her reactions would significantly interfere with the whole purpose of the event, compromising the enjoyment of the rest of the audience. Most parents just accept that while their children are young, they must either forgo events that are unsuitable for little ones, or arrange childcare if they desperately want to attend themselves. Those of us who look after loved ones with dementia (or indeed with those with physical disabilities) have to make similar decisions, and I would be very surprised if I were the only carer here who has wanted to go somewhere or do something that interests me, but has had to refrain because it it is no longer suitable for my husband, and I have been unable to arrange for someone to be with him. In fact, precisely this kind of diminution in one's social life is one of the stresses that has often been mentioned here: we are no longer free agents, and cannot do all the things we want to do, because we care for someone who cannot share some of those things any more.

Obviously none of us knows the full details of this particular case, but it is at least conceivable that the husband/carer may be being deliberately confrontational in this setting for unknown reasons of his own. If so, it is unacceptable that he is using his sick wife as a pawn in a battle with other people.

I hope I will not bring down wrath on my own head, but I feel that we should stand back from the immediate and understandable emotional response and think rationally about something that is in fact one of the practical problems that affects all of us.

Tristesa

[Sajehar]

Hi Irene
Just a thought, but maybe the man can't leave his wife with a paid carer or daughter because she becomes too distressed/fearful/angry/aggressive/etc if he's out of her sight? Maybe that's why he's with her 24/7?
If I'm right, then maybe the real reason he refuses pointblank to leave her at home isn't a fear of her dying (understandable though that is) maybe it's chivalry towards his wife?
Maybe he doesn't want to tell others how bad she gets if he's not around because he'd view that as slagging her off behind her back or something. Maybe he doesn't want others to know, out of respect and love for the woman she once was. Perhaps it pains him too much to speak about it.

In which case, if my musings are correct, there are only two outcomes I can see.
1) Either your group collectively comes to the decision that their speech making needs overide him and his wife's situation. In which case, your going to have to be brutally honest with him and regretfully boot him out.

2) Or, collectively decide the opposite. And except with good grace and humour his wife's behaviour. Consider it good practice for dealing with hecklers in the public arena, instead of a nuisance. Accentuate the positive... and all that.

This issue clearly bugs the hell out of you, or you'd never have written to this forum. But maybe the others refuse to grasp the nettle, because there isn't a nettle to grasp in the first place?
As for those 'Glare Throwers' why don't you print of these replies and hand them out to them. Maybe they'll then stop and act with a bit more understanding. If not, boot them out instead!
After all, if they can't handle disruption from a fellow members wife, how on earth will they cope with the general public. They're in the wrong game! If they want peace and quiet all the time, point them in the direction of the nearest Quakers meeting house.
I'll get off my soap box now!
P.S. Just had another thought. Why don't you have two meetings a week? The normal one, and one without the bloke and his wife. That way everyone's happy!
But discuss it with him first. Put it to him first as a suggestion, ask him what he thinks of the idea and take it from there.

[rosemary]

I hope I will not bring down wrath on my own head, but I feel that we should stand back from the immediate and understandable emotional response and think rationally about something that is in fact one of the practical problems that affects all of us.

Tristesa

I agree with what you have posted Tristesa, but the reactions here were to be expected given the details in the original posting. I think the problem lies in that we were not informed if any steps have already been taken to resolve this issue.

Personally speaking it is hard for any of us to post 'true' opinions up, as we have only the typed word of one person. It is different when face to face. For example I would need to listen to other committee members to hear their views, also talk to the gentleman concerned, All these would lead to a measured response and hopefully ensure some support put in place for him.

Without above all we can do is 'react' to words on a screen.

Irene, I am sorry you feel upset and 'demonised', I can ensure you that is not the intention of myself or any other member here. We reacted to your question based on what you told us. A balanced perspective is not possible without us hearing all sides of the people involved in this situation. Even after reading your last post, I stand by my initial reaction.

Does the gentleman receive any support from his local carers group? From his local Alzheimers society office if he has one?
With his long term involvement in the group and having been President I would imagine his daughters known to some of the group members ? If close enough maybe a word with one of his daughters but they would need know them well and it not be seen as interfering.

This puzzled me....

I am annoyed that no-one else seems to be able to grasp the nettle of the need to take action.

Is it really they don't see the need or the fact they see the situation but don't want to take any action.

How many committee members are there? It speaks volumes if you are the only one wanting to take action.
What does the present president of the group say?

You have known me long enough Irene to know my posting is to determine the whole situation and nothing directed at yourself.

[JHR57]

As the carer of a dementia sufferer myself I am amazed that this delightful man wishes to be part of such a group, poor Man would really be better off in a group of people who supported him. I am just very grateful that my Mum ,who has for most of her life been a deacon at her local chapel, has this week still received her invitation to attend the half yearly meeting, all of these kind ladies and gents are aware that my Mother is most often on the planet Mars and can offer no quality comment to the meeting whatsoever but they always treat my Mum with respect, compassion and most of all simple friendship - what is happening to this world I ask myself when folk simply do not stop to think this poor lady and her husband did not ask to be in a position like the dreadful one they are in and the decision of whether this Man should be in need of some respite from his wife is his and no one else's.

[Tristesa]

Rosemary, your points are all absolutely valid. I was naturally nervous about expressing a slightly different view, but it seems to me that we simply do not know enough about the situation and the people involved to make a balanced judgement. As the story was set out in the original post, it was indeed to be expected that forum members here would react as they did, but my own impression is that there may be quite a complicated back-story that we are not being told, maybe including some old enmities and tensions that are now being played out in a very inappropriate context. Irene quoted a very hostile and discourteous remark made by him: we don't know the context, so we don't know who was chiefly at fault, but there is evidently a lot more here than meets the eye, and perhaps the tension is not even primarily about the allegedly disruptive conduct of the poor lady with dementia.

Tristesa

[Irene Harper]

Dear Tristesa,
Thank you most sincerely for your kind and understanding response. I have been very disappointed at the examples of inability to interpret my posts, and the sarcastic replies from some posters. I would have expected the moderators to have demonstrated the ability to offer a balanced perspective on the issues I've raised. Is it such a big deal to be able to AFFORD paying for the services of a carer, while a stressed carer takes some refreshing away time? How people spend their finances is a matter of choice, I worked hard to acquire mine. I have not seen much sympathy for the important issue of taking care of oneself, so as to be a better carer of a caree.

This Speakers' group has recently been trying to attract more members, and this has taken some effort to contact newspapers, write PR material etc. so when new people come along, they wonder why this kind of disturbance is tolerated and may even decide to leave the group. Members have approached us with their complaints. They pay a fee, adjudicators come along and judge their work. Their expectations are that they will be able to have their voice heard.

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.