Telling it like it is

Recent posts by other carers (Wits End & Alzheimer's Moments) have got me thinking. Which is great,because so often I find that I am so busy being busy like Rabbit, that I don't have time to stop and think. And the conundrum is this: what language do people with dementia speak? How do they tell us what they want to say, and how do we interpret it? And when all's said and done, given that most dementia contains an element of paranoia, is it credible?

This is one of the hardest things of all. There's no linguistic divining stick that will point you in the right direction. And dementia isn't like the Enigma - devilishly difficult but once you have the decoder, you're unlocked. It isn't a one size fits all. I guess the answer lies simply in knowing so well the person whom you are caring for, that eventually the verbal and non-verbal clues stack up.

Mum had and still has, latent paranoia. Ten years ago, it started with the central heating. Joan of Arc heard voices and Mum heard the central heating. We never quite decoded CH speak but it culminated with her being found in our village, wandering in her nightie. I was 500 miles away at the time but got a call from my father at about 3 in the morning, asking me to Sort It Out. Daddy had remarried and the divorce had been acrimonious.

When I eventually tracked Mum down via the police and the local hospital, she told me in whispered tones that I had to contact the Queen to beg for a stay of execution. It was just one of the funny episodes that we've been through with Mum. Funny with hindsight but deeply upsetting at the time. She was terribly alone, terribly scared and convinced that she was about to be executed. Luckily, she was in the care of an old-style nurse - a kindly soul blessed with great commonsense who knew exactly what it was all about. UTI. Hadn't heard of it at the time, but it now just trips off the tongue - Uterine Tract Infection. And it sends you very loopy, very, very quickly.

I've since learned that the elderly in general, and those with dementia in particular, are prone to UTIs. It's less to do with personal hygiene, and more to do with dehydration and not drinking enough to flush the toxins out of your system. (Cranberry juice is a helpful preventative but needs to be diluted with water to render it less acidic.) Often the remedy is very simple: a blast with antibiotics (watch the constipation!) and it's soon sorted.

So UTI is paranoia with a twist. But over time, I have also realised that just because clarity has long departed Mum's turn of phrase, that doesn't make her an unreliable witness. Last night when I visited her, I found her (unusually) unhappy. She was lying on a soiled sheet, in soiled clothes, half asleep. Not usual at all.

So I managed to coax her up, wheedle her into a shower and from there into some warm PJs and a freshly made bed. I even managed to dry her hair and cut her nails, a major achievement! Finally, she started to look a little happier and settled down to sleep. Her conversation had been a jumbled tale of being told off and being pushed in the cupboard. Nothing too alarming there - the tiredness that accompanies nightfall tends to exacerbate the latent paranoia. What was slightly different though, was that she looked hounded.

Dirty clothes and dirty sheets wouldn't worry Mum. She simply doesn't notice any more. But when I checked in the diary to see who had been in that night, it was a carer who finds dementia difficult. I don't know whether it's impatience, a lack of understanding or wilful misunderstanding. Or perhaps case overload. But she's the only carer to complain habitually that Mum is rude or stroppy. In response, I leave notes apologising and explaining that unfortunately, it is Mum's illness that makes her behave this way.

Not so long ago, another carer called me to say that Mum looked upset. She called because mostly (and thankfully), Mum is a cheery soul with rare flashes of irritation and frustration. On that occasion too, her previous caller had been the same carer who probably chastised Mum last night. Given that there could only have been 15 minutes max between my arrival and her departure (in fact, I arrived half way through her 30 minutes alloted visiting time), and given too, that Mum is no longer able to sprint from the conservatory and into bed - there is no doubt, in my mind, that Mum was already lying on the soiled sheets when the carer arrived. Yet the note in the diary read: "....sitting in the conservatory watching television. Not in a good mood. All well".

What can I do about it? Not a lot. There is a desperate shortage of caring carers and we are still struggling to get Direct Payments up and running. (Three "recruits" in our tentative care plan have had to withdraw before we even got started. All for very good reason, but it means our start-up has had to be postponed.)

The point is, that Mum is still able to communicate, even if it's a little unconventional or it's by non-verbal means. And she was probably right. Not about being shoved in a cupboard, but about being ticked off. Just because she has dementia, doesn't mean that she doesn't have anything worthwhile to say, or that she can't say it. Or that I shouldn't believe her.

A few years ago, when my father was diagnosed with a brain tumour, his speech was completely to pot. It was almost impossible to unravel the sense, but he was desperate to say something. And he cried. My father never cried. Like any family, we had been through the lot - blissfully happy times, sad and tortured times - and my father was always moved and affected - but he never cried. Until that night in the hospital.

Eventually, by repeating words and asking him to nod when I got it right, I gleaned that the night staff were uncaring and completely different from the day nurses. When my father asked for help to get to the bathroom, the night staff ignored him only to criticise and ridicule when he soiled the bed. It was the loss of dignity for himself and for the other patients in the ward, that made him cry. When I filed a complaint the next day, I was told that it was not the first and that action had already been taken.

So here's the thing: even if we don't understand, even if it doesn't seem possible or even probable, maybe sometimes they are telling it like it is. We just need to find another way to listen.