CARE HOME DIARIES PART 4: Pictures on a Bedroom Wall

We can now see, read and hear about dementia more than ever before. But what does it really ‘look like’?

Edith stares up from the pillow as myself and another care assistant get her ready for bed. Her expression is blank and it’s difficult to know just how much she is actually aware of. The latter stages of Alzheimers have rendered Edith virtually immobile, and she has almost no ability to communicate beyond the facial expressions and eye movements only time and familiarity can translate.

Edith is not entirely silent, a fact I only found shortly after starting  at Hill View. One morning, apropos absolutely nothing, Edith lifted her head off the pillow, turned, and looked straight at my colleague Karen. “Get off me, you four-eyed bitch” she hissed. She then turned her gaze back at the ceiling, dropped her head back to the pillow and resumed her usual blank expression. This scared the crap out of me, but Karen simply laughed. “Okay my darling, that’s the last time I wear my specs to work.”

Edith’s room and ceiling are covered in photographs. There is Edith with her husband and family. Edith as the proud hat-wearing Mum at her daughter’s wedding. Edith as a fairly mature looking student in mortar board and gown receiving a degree. And on her chest of drawers sits a particularly striking black and white portrait of her as a young nurse. It looks like one of those old publicity shots for a Hollywood starlet. She was clearly a very striking young woman.

Hill View has given me some eye-burning images, but most vivid of all are those photos of residents long, or not so long, before they were struck by dementia. I try to equate those happy, animated faces with the staring eyes and haunted features of the person sat in front of me as I help them comb their hair or wash their face.

For this is a slow-burning, degenerative and ultimately terminal condition that will eventually kill the sufferer if other conditions don’t get there first. Early stage dementia allows sufferers some degree of independence and dignity. The latter stages, which can be many years down the line if the person is physically fit and well, require more and more supervision and support for people such as Edith, who needs help with just about every aspect of human existence. The expensively photographed young woman in the photo is now being fed puréed food and having her pads changed several times a day. Alzheimers has destroyed her..

Unlike Edith, Margaret doesn’t spend hours staring quietly into space. She can cover a hundred metres not very much slower than Ussain Bolt. Margaret still has the presence of the head teacher she once was, and talks ten to the dozen. She doesn’t always make sense but she makes use of a wide and educated vocabulary which sometimes stops me dead in my tracks wondering how words like ‘idiosyncrasy’ can still come from the mouth of someone with dementia as advanced as hers. Margaret will often come running up to me as if to tell me the most brilliant news I’ve ever heard, or to make some random statement which makes sense to nobody but her. But quicker than I can fashion an answer she’s staring through me as if I’m air. She then scurries off for another conversation with somebody else.

Margaret has pictures on her wall as well. Most of hers are more recent than Edith’s. She is retired and visiting far flung places with her late husband, a university lecturer. They are sipping cocktails on a hotel balcony overlooking the Med. In another photo, Margaret is proudly cradling a grandaughter. She looks eerily similar to how she looks now and is even wearing the same clothes. The Margaret in the snaps does not have a care assistant helping her put on her shoes.

Frank has a memory span of less than a minute. As a former chemical engineer he’s a clever man with a vast knowledge of local angling and science. He walks slowly with a frame but if you remind him to lift his feet “just like Neil Armstrong on the moon” he can speed up considerably. Frank has a quick wit. “By all means remove my jumper, young man, but please leave my head where it is” says Frank as we help him get undressed for a bath. His wife lives locally and phones him every evening. Frank is never really sure who she is but speaks to her as if he knows he ought to. 

His son lives far away but sends a word processed letter every week, often with an old photo or two scanned in. Frank will read the letter as if pretending to make sense of it’s contents, but enjoys staff reading his letters aloud to him. Every so often we’ll read out the name of a grandaughter or daughter-in-law and explain to Frank who this is. But the photos his son includes need no explanation. Frank can put names to faces of seemingly anyone from his past. A next door neighbour. A work colleague. The vice-secretary of the local angling association circa 1953.

Dementia is a convenient term but lacks descriptive power. As we can see from just a few brief stories, diagnoses such as Alzheimers have certain key features that exist on a long continuum stretching from slight memory loss and a little cognitive impairment to more or less wholesale destruction of the human being whose brain it invades. 

And every so often those of us paid to wash, dress and feed people no longer capable of doing it for themselves need to stop and look at the person in front of them. Because for every empty, burnt out shell of a human being left behind by dementia is a picture on a wall. A window through which we glimpse a moment in time of the real Michaels, Margarets and Ediths who lived, loved, brought up children, sipped cocktails, got degrees, posed with the vice-secretary of the angling society and wore posh hats at weddings.

Connor Kinsella
Lead Trainer, JCK Training

Next time: CARE HOME DIARIES PART 5: ‘Where have all the relatives gone?’

Mental Illness: A Severe and Enduring Media Silence

Refreshing as it may be to see mental health on the telly every five minutes, are viewers seeing a rather sanitised version of ‘Mad’?

Photo of Cane Hill Hospital, Surrey
Cane Hill Hospital, Surrey Thanks to abandoned britain.com

For anyone growing up in Croydon during the 70s and 80s, Cane Hill Hospital was a local landmark of notoriety, intrigue and all manner of imagined horrors. Many a family car journey would be coloured by a quick peek at the gothic asylum as it rose up between the trees from the A23 London to Brighton Road. We wondered aloud at what darkness and derangement went on in that spookiest of buildings, and parents warned their offspring how they too could end up at Cane Hill if they didn’t eat their veg.

The closure of the Cane Hills and the advent of so-called community care should have meant a fundamental change in how mental illness was perceived by Mr and Mrs Normal on Normal Street. But it never really happened like that. If you wanted to see mental illness on TV, well you didn’t. Yes there was Hitchcock and The Shining on the big screen, but all Jack Nicholson and Psycho did was suggest mentally ill people ran around old hotels waving axes around or got all dressed up in the clothes of their decomposing parents stabbing the odd blonde. Combating stigma took a while to get going.

But fast forward a few years and switch on the telly. Mental health is ubiquitous. Not quite as ubiquitous as Midsomer Murders, but not too far behind.

Last Summer’s 4 Goes Mad season on Channel 4 was a bit of a mixed bag, and like everything else on television suffered from an over-reliance on celebrities. But among the comedians unpacking their pasts was more than one thought-provoking, stigma-challenging contribution to poke at the myths and stereotypes around mental health.

BBC3 is just coming to the end of it’s Mad World season which has focussed on the mental health of young people. Last week Channel 4’s Notes from the Inside featured classical pianist and former in-patient James Rhodes meeting and playing music for several long-stay residents of a large psychiatric hospital. And just to make sure we’re not solely talking about documentaries and flies on the wall, the much anticipated second series of My Big Fat Mad Diary made big waves and should be starting to film around about now-ish.

And for further chipping away at the stigma of mental illness, who better than top sportspeople such as Andrew ‘Freddie’ Flintoff to demonstrate how Depression (capital ‘D’) can chip away and even destroy even the tough, well honed psyche of the champion athlete?

All of this is of course brilliant and wonderful. But there is a ‘but’.

Earlier this week BBC3 broadcast the slightly ill-titled Failed by the NHS.  Several young people with histories of mental health problems described their experiences of being let down by mental health services, although perhaps it’s fair to say in most cases they had actually been let down by shoddy individual practitioners and a chronic withdrawal of resources, but that’s another story.

Like most of the documentary output from the ‘New Mad’ franchise, the contributors were not psychiatrists nor psychologists nor any other species of mental health professional. They were ordinary people who have themselves experienced mental health problems at first hand. We should celebrate this. But I took to Twitter to wonder aloud who was missing from this show and most of those that have come before. Are all users of mental health services articulate, intelligent, middle-class and white?

Where are the voices of those whose lives have been punctured by constant admissions and readmissions, often compelled by the Mental Health Act? Those whose psychosis has them on first name terms with every local copper and paramedic within a twenty mile radius? Or the patients of our Psychiatric Intensive Care Units (PICUs) who, to quote Will Self’s recent (and highly controversial) Guardian polemic ‘present a terrifying spectacle of seriously disturbed patients shouting, yelping, gurning and shaking – I know, I’ve seen them.’ Yes, Will. So have I. Up close and personal, but never on my flatscreen.

As a long in the tooth trainer running frequent Mental Health Awareness courses I can see how much has changed over the last fifteen years. Mental health is, if not quite mainstream, much, much better understood than it ever was before. We no longer have to spend a whole session explaining how Schizophrenia doesn’t mean ‘split personality’ or that ‘psychotic’ isn’t a by-word for serial killer. People seem to be ‘getting it’.

But there does remain a deep-rooted curiosity about the effects of mental illness at it’s severe, debilitating worst. The short-term effects of terrifying delusions. Thought disorder that renders conversation all but impossible. Voices of people known and not known in real life, some friendly, some nasty, some commanding their victims to do quite appalling things. The sort of bizarre, incomprehensible public behaviour that has people phoning 999 and crossing the road in a hurry.

And then there are the long term effects of severe and enduring mental illness. The appalling mortality rates and physical ill-health. The homelessness, petty crime, substance use and social withdrawal. Whether we call Severe and Enduring Mental Illness Schizophrenia, Bipolar Disorder, Depression or whatever is increasingly open to conjecture. Whether some of the worst effects of SEMI are as much to do with harmful medication regimes as the illness itself is another debate. But what is not in dispute is that this is a significant population who aren’t sat talking to camera crews in coffee shops drinking skinny lattes. This is a population about whom we see or hear very, very little.

Let’s celebrate the fact that mental illness is probably far less mysterious, stereotyped and misunderstood than it was. But at the same time maybe it’s time to take more than just a quick peek at mental disorder and really throw the doors wide open. Let’s see the otherwise unseen. The real, visceral and yes, frankly bloody horrible side of severe mental illness that is yet to see the light of day and stays ever more mysterious and frightening as a result.

Connor Kinsella
Lead Trainer, JCK Training

For further information on training and services, contact JCK Training at enquiries@jcktraining.co.uk or call 0208 133 9458

* Many thanks to @McLikey for the Twitter chat that inspired this blog. Sometimes 140 characters just isn’t enough!