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How much do you say. - Carers UK Forum

How much do you say.

For issues specific to caring for someone with dementia.
My Mum has mental health problems which are complicated by the early stages of dementia. She lives in a residential care home where she is well looked after. Problem is that she really bonds with some carers to the extent that she comes to rely on them, but believes that some of the carers are nasty to her and do not speak to her with respect. Whilst I accept that some of the carers are less affectionate than others I am happy that they are not unkind to her. When I try to say that I am sure they didn't mean it and that she may have misunderstood she gets cross with me and tells me that I never believe her.

I am really confused as to what I should do, do I humour her to keep her happy and let her carry on believing that the carers are nasty or do I reason with her, knowing she doesn't believe me and resents that I am not supporting her.

I am baffled. Please help me.
Hi Kaycee

Unfortunately 'reasoning' with someone who has dementia is usually a thankless task, 'cos no sooner have you 'reasoned' then they've forgotten !

I know that going along with their fantasy/misconception sometimes seems like you're condoning a lie but for everyone's peace of mind it's usually the best way to go. When my Mum was in the care home she would have similar feelings - she'd "love" one Care Assistant but take against another for no logical reason; I'd just say "Don't worry Mum I'll sort it out" and she would be happy until she forgot about it and then we'd go through the whole rigmarole again. I did have a quiet word with the home's Manager who understood the situation as it happens regularly - after all in "real life" we don't always like all the people we meet do we? There will always be at least one person that we don't 'take' to.
Hi Kaycee (good to see you on here Image )

I too look after my Mum who has dementia and I agree with Sussex and Susieq completely.

Hope you are doing as ok as you can x
I do fully understand the reasons for sidestepping some issues rather than trying to argue or 'reason' about them, but I remain uncomfortable about the way in which this can sometimes tip over into not being strictly truthful. There is sometimes quite a fine line between distracting or reassuring someone, and actually misleading them.

I am particularly sensitive about this, chiefly because I am temperamentally incurably truthful myself(*), and am inclined to get into futile arguments rather than tell a social white lie, but also because of my husband's particular form of dementia. Very vivid dreams that spill over into waking hallucinations are a major feature of Lewy Body Dementia, and they are often distressing and nightmarish. From the early stages of the illness, I have assured him that I will never lie to him, and so, when I tell him, 'I don't think that can really have happened. It must have been one of your dreams, so try not to worry about it', he accepts this reassurance, because he (still) knows that I would not say that if it were not true. My stepdaughter will happily tell him half-truths if she thinks they will be expedient, but I am not willing to do that.

I realise that all cases are different, that the illnesses change and progress in various ways, and that there are many ways of smoothing things over without actually telling lies. Yes, the sufferer is living in a different world, but it seems to me important to preserve the links with the 'real' world as long as that is feasible, so I remain uncomfortable about any deception, however mild or well-intentioned.


(*) I still remember some of the half-truths and expedient lies I was occasionally told as a child, 'for my own good'. I usually saw through them at the time, resented them, and resent them still.
One of the things I have learned on this journey is to be willing to look for advice and listen to it, to follow it when appropriate, but also to have confidence in my own judgement and sometimes to reject standard advice and do things my way, precisely because people are so different.

As my husband's sense of time started to evaporate, and he was continually asking me what day/time it was, when he was next going to visit his son, when his next hospital appointment was, etc., I dutifully acquired clocks with day/date displays, a whiteboard to jot down the next week's appointments, and so forth, all standard and perfectly sensible suggestions for helping dementia patients. I still use the whiteboard and find it quite handy now I am living alone.

But it took me a while to realise that these particular aids actually made my husband worse, by making him more acutely conscious of his declining ability to understand a written text. He would get fixated, almost obsessed, staring anxiously at the board for minutes on end trying to understand and interpret what I had written on it. It also made the loss of time perception a much bigger issue in his mind (and mine) than it was when he would just ask, 'what day is it today?' and I would answer 'Tuesday', and the subject would be dropped till he had forgotten again. The written reminders made him worry constantly about what day it was, and made him painfully aware of his own mental deterioration. This is a man who had a long and successful academic career, and published numerous scholarly books and papers: it is not hard to understand how distressing it was for him to find it a challenge to grasp the meaning of a handwritten note saying, 'Wednesday 10.30, dentist'. Anyone can briefly forget a time or date and need reminding, so just asking me and receiving a spoken answer was much less stressful for both of us than his struggles to comprehend notes. The written reminders made the whole subject bulk much larger in his mind. I can easily believe that for some sufferers and their carers, written reminders of this kind are a useful tool, and I don't regret trying that approach, but they simply did not work well for us.

I wish that some people who have not lived 24/7 with dementia (I am thinking of my stepdaughter...) could understand, as people here understand, that one size does not fit all, and that tips which help one patient or carer may not work with another. I have occasionally been accused of being 'obstructive' and 'negative' because I have not instantly done all the things proposed by some other family members: all I was doing was assessing whether they would actually help in my husband's case, and sometimes concluding that they would not.