Confronting the carer of a Dementia sufferer.

[Irene Harper]

I am a member of a group that meets to practice speaking skills in a supportive atmosphere. One of our respected members brings his wife, a dementia sufferer, along to meetings. Often she will make a lot of distracting noise and her husband tries valiantly to quieten and calm her. The noise is so annoying that some of our members glare over, despite the sadness of the situation.

Last night, when the carer of this lady got up to make his practice speech, he was quite emotional and said that his wife may not have much longer to live and he wanted to spend as much time as possible with her.

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. The situation has gone on so long and this carer seems to be impervious to the needs of others. The committee is concerned in case there is an unpleasant confrontation and this valuable member either stubbornly continues to bring his wife or leaves the Speakers' Circle altogether.

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.

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

[no1mum]

Irene, as someone who has seen the decline and change in close relatives who I have lost to this dreadful disease I find your post extremely insensitive. This poor man has lost his wife to dementia, she is never going to recover from it, it is perfectly natural for him to want his wife close by his side so he can keep an eye on her and CARE for her, it's not always easy to get someone in to sit with a relative. Personally I can only admire this man for his devotion to his wife. I would have thought some compassion should be shown by your members.

[Irene Harper]

Dear Number 1 Mum,
This situation has caused considerable aggravation to members for a considerable time. This carer is with his wife 24/7. Do you not think it's insensitive for a carer not to take care of their own mental and physical health, by taking a very small break of two hours per week? It is this carers assumption that his wife may not have long to live. The situation has gone on for three years. When I looked after my Mum, I made provision for a carer, and paid for such services myself, because a break allowed me to keep my sanity, and consequently be a better carer to my mum.

I find this expectation that we should be super, super carers, or else burden ourselves with debilitating guilt, very unreasonable. In the case I mentioned there are majority rights here, the greatest good for the greatest number of people. As well as that, I would have considered bringing my mum along in a similar situation to this carer, as selfish and an imposition on the tolerance of others.

I contacted this support site, for some measured, rational and balanced thinking about this issue, not an invitation to burden myself with a guilt trip and to think of myself as a 'bad' person.

[Lazydaisy]

Like No1Mum,I find the post insensitive.
I am shocked that a Carer/Former Carer,should lack compassion.
Not all of us can find a care worker easily,not all of us can AFFORD to hire someone to look after our loved one for an hour or two,not all of us can TRUST someone to look after the person we love. What are we supposed to do?
If I remember rightly,did you not ask something similar about a group where there was a "disruptive person" with a Learning Disability? Apologies if it was not you.(I have just looked the person up,and it was "Late of this parish," not you but similar in its wording).
Who are the "right people" to be in such a group?And what right does everyone else have to judge a loving caring husband for taking the best care of his wife that he can? We don't live in a perfect world. I feel very sad that another Carer can judge so harshly.
My son with a Learning Disability sat with us when his brother had just been declared dead, he came with us to see his brother in the chapel of rest,he was one of the Bearers at his brother's funeral and I am so proud of this young man, the most devastating moments in his(and our) life and he has been there alongside everyone else,an equal to us all.

[Irene Harper]

This Carer can afford to employ a Carer. As I said I would welcome hearing more views which take everyone's rights into consideration.

[Myrtle]

Irene, you say

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.

and also

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

Perhaps no one else sees the situation in quite the same light that you do and don't see that any action needs to be taken at all.

[rosemary]

The situation has gone on so long and this carer seems to be impervious to the needs of others. .

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

The problem lies not with the gentleman but with the group as a whole. Regardless the reason for the meeting, if one of the members is struggling I would expect there to be support and understanding from friends/colleagues, not so called letters. It is obvious he is a respected member and as such deserves to be treat as so, not be sent a cold letter outlining 'options'.

I am amazed that the majority of the group are impervious to this gentleman's needs, not the other way round. The lack of compassion shocks me.

There are many steps that can be taken before you reach this type of 'ultimatum' stage.

[Dancedintherain]

No matter how you wrap it Irene, or how you squirm, your post is insensitive and inflammatory. And you know it.

You say your group see no need to grasp the nettle. Yet you pursue Your opinion.

So far, you have not had the response you were looking for on this particular forum.

I suspect you feels kinda lonely right now.

My advice is to think this through.

[julie blake]

Has anyone else in the group actually said they want this letter written or is it just you Irene and I have to say the if the group really feels this way they don't sound very supportive to me I don't know what sort of speaking you are practicing that needs a completely silent audience and I doubt you will find one anywhere in the real world so I would have thought these interruptions would be a healthy challenge for you all.As to being impervious to anyone elses needs I would have thought this poor devoted husband and his very sick wifes needs would in most peoples minds have taken priority over anyone elses need for silence.If you write this letter no matter how you word it he will be heartbroken and you will have kicked the man at probably the lowest point of his life please think carefully before you act

[charles47]

This, for me, is not a situation to confront. It's one to support.

If people feel uncomfortable for a few moments, or for an hour, perhaps they can learn to be sensitive to the fact that this gentleman deals with the situation all day. Every day.

And is worthy of respect.