I'd seen it coming

I’d seen it coming for some time.  I've been in the mental healthcare business since 2007, working with, among others, dementia patients.  I recognise the signs, I’ve had training.  Prior to that I’d encountered the condition among my church members, in varying degrees of severity.  I’ve seen them a bit muddled in their homes and completely “away with the fairies” in care homes, and many stages in between.  I supported them and their carers as best I could, on the basis of general pastoral commitment.  I’d no specific knowledge, never thought to read up on it and was never encouraged to do so.

Is “away with the fairies” a demeaning/pejorative term?  Must find out how other people react to the phrase: it’s usually spoken in tones of sympathy. To call someone demented, when they actually are, still sounds harsh – because of the market-place, non-clinical usage of the same word.  We tend to talk to service users about their having “memory problems”, which most dementia sufferers will admit to – part of growing old, innit? – without having to acknowledge that there may be something more serious wrong with them.  And as for “suffering from brain failure”, a phrase which one high profile carer favours, that really does sound rude, despite being completely accurate.  Normally, to be PC, you ask a person if they are comfortable with a certain label being used to describe them – are you OK if I call you bald?  Thin on top?  Slaphead?  No?  What then?  Oh, receding.  Fine.  But you can’t ask someone with severe dementia if they mind being described as away with the fairies.  Because they don’t know that they are.

I digress.

Twelve months ago I’d have said that for an old man on his own, Dad was coping pretty well.  My antennae were twitching away but I picked up no more than the normal forgetfulness, muddle and faffing about that go with getting on in years.  I’ll describe his decline in later posts, but it was obvious by Christmas 2010 that something was seriously amiss, and I started to describe him as “showing signs of dementia” to professional colleagues and people I knew who’d had experience of the disease.

Fantastic Fred reminded me of the other factors that can cause confusion in elderly people: depression and urine infection to name just two.  But I’ve seen the confusion he gets when he has a urine infection, and if he was depressed and I hadn’t picked that up, I’m not sure I should be doing this job.  No, this was a different flavour of confusion.  Fantastic Fred wasn’t wrong, just covering all bases with his usual thoroughness.  Other friends felt I was definitely on the right track.  If it quacks and waddles, I kept saying…. well now I know; it really is a duck.

There is a HUGE difference between knowing something and being told, especially when the something is as momentous as dementia.  I was not prepared for the emotional shock and didn’t achieve much work-wise for the rest of the morning.  Even had a little weep in the car and it’s only music that can make me cry as a rule.  I was playing out various scenarios that might unfold over the next few years and dreading some of them.

I had an urge to let people know.  I told Akela, manager of the elderly ward I was visiting in the afternoon anyway, partly to do some singing with the patients.  She gave me five minutes one-to-one and would have offered more but I felt it was an imposition on her time: but did suggest that she and I, plus Fantastic Fred go out for a drink sometime.  “You do drink, don’t you?  A man of the cloth?”  Thanks for asking, Akela, and yes I do, but I’m still amused by the assumption that clergy are abstemious these days: some are of course, but they tend not to be of the kind who would want to work for the NHS.

I e-mailed Fantastic Fred.  Part of his reply: “I truly believe it is important to know the specific type of dementia as it has implications for treatment and ‘at his age’ doesn’t reflect well on valuing our senior citizens”. Well, I’d have thought it was important too: the differences between Alzheimer’s and vascular dementia are considerable.  I sort of had, and sort of hadn’t, registered the dismissive tone in “at his age” because I was more occupied with absorbing the actual news.  But thanks, FF: I know my dad is in for some years of decline, leading in all probability to death in confusion and that’s not the cheerfullest of prospects; but I know the condition can be managed, can be managed well, and that people with dementia can have a good quality of life – I am partly in the business of helping to see that they do.  How it’s managed partly depends on a knowledge of what we’re dealing with.  So if Dad’s GP hasn’t been able to work it out, let’s hope the Community Mental Health Team can.