CARE HOME DIARIES PART 5: “I saw Mum. She didn’t see me”

I’ve blogged elsewhere about my Archers fetish.  I belong to a rather peculiar sub-group of ‘tune-in and tweet’ Archers fans spending seventy-five minutes every Sunday morning listening to the omnibus edition while tweeting affectionate mockery about everything from Bartleby the horse to Helen Archer’s organic yoghurt.

But the onset of 2014 brought one of those memorable moments when fiction genuinely touched real life and even the most acerbic of ‘tweetalongers’ paused briefly to dab at moist eyes with a sheet of kitchen roll.  But it wasn’t really the death of Jack Whoolley that had us shedding a tear or two. In truth, it was the story of Alzheimers disease and how dementia can kill even the brightest and strongest-willed among us long before the heart stops beating.

In a scene as beautifully written and acted as it was poignant, his wife Peggy visits her husband at The Laurels for what turns out to be the last time. By this stage Jack is in the final stages of what is in effect a terminal illness. Most sufferers will die from other conditions before Alzheimers itself can be listed as a cause of death, but by the time he dies Jack has clearly not been ‘alive’ in any real sense for several years. He no longer recognises Peggy, has lost the power of speech and shows little or no recognition of what is happening around him.

Those of us who know the real-life ferocity of end-stage dementia would recognise all too well a scene which is no less moving for it’s fictionality.  They would recognise Peggy’s attempts to sustain what is an entirely one-sided conversation with a husband who hasn’t spoken for several years and is almost certainly unaware of what is being said to him. They would be familiar with how Peggy reminds Jack of a funny story from the past, and how she notices the slightest of smiles from the corner of his mouth. Perhaps there is the slightest glimmer of awareness there just this once. Perhaps she imagines it.  In any case, she was just about to go but decides to sit down and spend just a little longer with her husband before she leaves.

As touching a drama as this was, these scenes are played out for real every day of the year. And for those of us who work with dementia, seeing friends and relatives struggling to connect with care home residents is a familiar, and sometimes slightly awkward reality.

Some listeners were a little perplexed that Peggy didn’t react more dramatically to that phone call from The Laurels.  But as she says herself: “Seeing Jack decline like he did, disappear in front of my eyes, it was awful… but it’s meant I had a lot of time to get used to the idea of losing him. Because really I lost him a long time ago.”

Thanks to a much greater awareness about dementia, most of us are now well enough informed to cite symptoms such as short-term memory loss or confusion as being fundamental to dementia. But for families of sufferers and those of us who work in the field, it’s the gradual deterioration of the all-round ‘human-ness’ of the person that is most striking. Dementia means the gradual inability to comprehend, to interact, or to hold anything but the simplest of conversations. At Jack’s stage of dementia, there is no conversation at all.

My colleagues and I at Hill View House* try our best to see even the most impaired of residents as real people who can hear and understand us as well as anyone else. In ‘Pictures on a Bedroom Wall‘ I wrote about the power of old photos** to allow staff like me to see the most disabled of our residents not as mute, immobile or vegetative, but as vibrant livers of life posing for holiday snaps and wearing fancy hats at weddings. To involve people at the end stages of dementia in choosing their clothes or deciding what they’d like for lunch isn’t easy. In some cases it isn’t possible at all.  But we try.

In The Archers it was that faintest flicker of a smile that tells Peggy she’s connected Jack with something resonant from the past. In real life it’s more likely to be a facial expression that says “you’ve forgotten to put sugar in my tea” or “pureed broccoli. Again?” It might even be an occasional “f*** off” after months of complete silence. Yes, that has happened.

But no matter how much and how well care home staff do care, there’s one thing we can’t affect. Some of our residents have visitors every day, or several times a week. Some have the odd visit from friends or children. And some have none at all.

There seems to be a fairly linear relationship between a residents cognitive ability and the amount of time they get from visitors.  Wives and husbands seem the best able to tolerate the ravages of what dementia has done to their loved ones, but for the most part we could plot on a graph how those least aware of other people and events are also the least likely to have contact with family and friends.

We staff frown upon the neglectful, ungrateful children who disappear from view once parents are safely dumped with us, only to pop up once again as soon as the popping of clogs seems imminent and an inheritance looms on the horizon.

In some cases this might well be true. But I suspect that for others the reluctance to visit is about something a little deeper. Perhaps the thought of sitting with a Mum or Dad or Nan or Grandad staring blankly, silently and unknowing into space is simply too painful to stomach after a lifetime of knowing them as the people who were once every bit as vibrant and alive as we are now. There’s always something else to do at weekends.

 

* If you haven’t read this blog before, Hill View House is a real care home with a made-up name. For obvious reasons.

** This now seems to have been adopted as good practice in NHS general hospitals. Thanks to @LauraDron for the link

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Training the Trainer: A Beginner’s Guide Part 1

Setting the Scene
 
Derek’s boss has dumped a new role on his desk. The learning and Development budget has shrunk quicker than a scrotum in an ice bath and his organisation is now transferring it’s training provision from those pricey
freelance consultants to him. And Karen from Human Resources.
 
Of course he knows how myself and my trainer colleagues will react to that. We’ll make that sharp intake of breath noise like the hairdresser in the wake of a disastrous attempt at home makeover. “Tried
cutting your own fringe, love? Oh dear.” 
 
I’ve ranted about health and social care budgets elsewhere, but the slashing  and burning of this government’s administration has already made one thing very clear. More and more health trusts, local authorities and service providers are taking a DIY approach to training, and we in the professional training community need to be offering a helping hand to our less experienced colleagues. 
 
So here’s the first of two brief weekly ‘tasters’ taken from my company’s Train the Trainer programme
 
Come Dine with Me?
 
So what makes a good health and social care trainer? After fourteen years in the business and a long career in ‘shop-floor’ clinical work, I’ve seen lots of Dereks and lots of Karens. Derek is very enthusiastic and thinks he’ll make a great trainer because: a) he’s quite knowledgeable b) he can communicate with more than one person at a time and c) he knows how to do groovy fade effects on a Powerpoint slide.
 
And to demonstrate the sheer daftness of this assumption we’re going to use the analogy of a dinner party. Dinner party? Yes, really.
 
Being more of a pie and a pint sort of chap myself I can’t
profess great experience of ‘doing’ dinner parties, but I’ve seen enough ‘competitive entertaining’ to have half an idea how it works, or doesn’t work as the case may be. And the different approaches seem to me highly analogous to the training process.
 
Derek decides on a whim to have a few people round for
dinner. He has half an idea who to invite and texts a random selection of Facebook ‘friends’ the day before his ‘spectacular.’ He hops off down to Tesco. He hasn’t quite got around to deciding what to cook, so emerges with a few jars of Chicken Tonight, a packet of Uncle Bens and a carrier bag full of red wine. Just red? Well Derek likes red so if nobody else does, tough. In
the words of the song, ‘it’s my party and I’ll throw up if I want to.’  
 
Karen from Human Resources has a slightly different
approach. She thinks carefully about why she’s having the party, and who she’s going to invite. And she asks herself whether the answers to the why question match the answers to the who question. It’s going to be a birthday party for her best friend, and the evening is aimed at a ‘good food and fun’ sort of do.
 
She realises that most of the guests are vegetarians. Now Karen is a woman who likes her meat. In fact, she likes her steak so rare it’s practically walking around and mooing, but she decides on a rather nice Mushroom
Risotto from that nice Jamie Oliver book.
 
She has a shopping list. She prepares the ingredients carefully. She makes sure to sit her guests around
the table with people they know or who have something in common.
 
And the results? At Derek’s house half his invited guests don’t turn up, and those that do are the sort of people who don’t get out much and think World of Warcraft is a networking event. They shuffle around uncomfortably in the plastic chairs our hapless host turfed out of the garden shed at the last minute. Guests pick at poor Derek’s plateful of E-numbers wondering just how much they have to force down before turning radioactive, and Derek’s little dog is sleeping contentedly under the table
having suddenly become a much larger dog. And everyone leaves as early as is politely possible citing pressing engagements with unfed and imaginary pets.  
 
But at Karen’s they’ve licked the plates clean, are giving Tina Turner a run for her money on the Karaoke and have already invited themselves back for her next evening of fine dining. 
And while none of my own training courses to date have featured either Mushroom Risotto or Tina Turner, I hope the analogy is clear. Preparation and planning is all. Learning objectives are key. Structure is essential. A good course outline isn’t just something to be scribbled on the back of a fag packet, and the needs of your audience may be very different from your needs as a trainer. 
 
In the next instalment we’ll be looking at ‘setting the scene’ for training. Doing the ground work that goes into delivering course that helps colleagues do their job better and isn’t a dog’s dinner. 
 
See you again for Part Two.
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Training the Trainer: A Beginner’s Guide Part 2

So if you’ve read Part One of this Train the Trainer double bill you’ll now be aware of a) how to take part in Come Dine with Me without looking a complete helmet, and b) the importance of REALLY GOOD PREPARATION in running a good health and social care training course. In fact, it’s so bloody important it’s in big capital letters and warrants a cheeky swear word.

 

Well let’s move on to look at what goes into REALLY GOOD PREPARATION long before we get anywhere near a gaggle of learners chewing nervously on custard creams and trying to figure out how the coffee machine works.

For the sake of authenticity we’re going to assume a real world situation. We’ve been asked to run a workshop on Dementia Awareness. Why Dementia Awareness? Well as I’m writing this it’s a topic very fresh in my experience (e.g this week) and in terms of bang for learning buck, its a subject that can yield significant results within a short period of time.

So let’s start off by asking ourselves these four fundamental questions:

1) How long have we got? 

With budgets getting squeezed to the Nth degree and every minute of every day carefully accounted for, we’ve been allocated three hours. Three hours!? This may seem a weeny bit harsh, but let’s look on the bright side. Sometimes a tight time window can lend much needed focus to course design, and we’re delivering a Dementia Awareness course and not a BSc degree programme. And haven’t we all attended courses stretched way beyond the time needed to achieve their objectives simply because the trainer has been booked by the day and not the hour?

2) Who are the learners, and what roles do they perform?  

We have a group of fifteen domiciliary care workers. They provide personal care and household tasks for older people in their own homes. Many of their clients experience a range of dementias of varying severity. The group are quite mixed in terms of experience, educational achievement, and command of English.

3) What are the group’s learning and job needs? 

Let’s all stop being cynical for a moment and assume that our domiciliary care provider has the funding, time and management nous to have conducted some form of learning needs analysis with our staff. Some have years of experience working with dementia while others simply can’t understand their client’s constant demands for that cup of tea they actually made five minutes ago, or how a simple request to make way for the vacuum cleaner becomes World War Three. Being able to understand and communicate better with dementia sufferers is a major learning and job need.

4) What are we trying to achieve in our allotted time? 

Well, with only three hours to play with (including the all important coffee break) let’s not be too ambitious. But we’re aware of a number of misconceptions held by staff about dementia. We’ve heard carers referring to clients as ‘a bit demented’ which roughly translated means ‘daft.’ Others get the terminologies of ‘Dementia’, ‘Dementias’ and ‘Alzheimer’s’ completely confused. Some of our colleagues seem to think all people with dementia have hearing problems AND SHOUT AT THEM ALL THE TIME. So if we’re looking for learning objectives (and if not, why not?) the busting of a few myths and improved communication skills may not be too much of a moving target.  

Some Do’s and Don’t s

So now we’re in the training room as our audience filters in. We feel great. Why? 

Because we have:

  • A very clear idea of our learning objectives and what we and our group want to achieve.
  • A fast-moving and varied programme which will prove interesting, challenging and thought-provoking. 
  • An atmosphere that encourages our learners to share experiences, discuss, debate, and ask questions without fear.
  • Well prepared training materials that are going to be useful for more than just doodling, origami or scribbling down phone numbers.

And hopefully we haven’t got:

  • Reams and reams of notes from which we’re going to stand. And read. And read. And… Zzzzzzzzzz
  • A 45-minute documentary downloaded from YouTube which allows the trainer to put their feet up and eat sweets, but does precious little in terms of meeting our learning objectives. 
  • A 76-slide Powerpoint file. Especially not a 76-slide Powerpoint file with a collection of different fonts, copious amounts of WordArt, teeny-weeny text and a dozen whizzy animations. A little Powerpoint (or one of its alternatives such as Prezi) can be very useful, but overuse is the highway to Snoozeville

So that’s our chopped-down to the bare basics minimalist guide to preparing a training session. Our next and final instalment will take a look at training delivery. Yes, the sexy bit. So if you don’t want to miss some valuable insights into getting ‘warmed up’, the use of visual aids and of course the joy of role-play then follow @connorkinsella on Twitter or subscribe to this blog. Or if you’re very old skool you could just write a note in your diary for next Friday 24 January. 

See you again next Friday. 

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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?’

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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!

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CARE HOME DIARIES PART 3: ‘Dementia and The Sound of Music’

If you missed Part Two of our dementia care series it’s here, but for Part Three we’re having a little musical interlude. How can someone with a memory span of 30 seconds know all the words to Love Me Tender?

The care home day is measured not so much in hours and minutes but by meals and periods in between breakfast, lunch and supper. We have an Activities Co-ordinator at Hill View House and staff who are on the whole very good at thinking up ways of entertaining and stimulating our residents. Even those with very severe dementia seem to register some sense of enjoyment in having their nails done, their hair put in rollers or having a book or letter read out to them.

But one Saturday afternoon we had a few residents who, for various reasons, were not in the best of moods and looked a little bored. Entertainment was required, and yours truly was nominated for the not particularly enviable task of thinking something up.

As a social care trainer I have fifteen years experience devising fun ways of engaging groups of people for several hours at a time, but looking around the rather bored, grumpy faces staring back at me from the lobby where our residents tend to congregate, I was running out of ideas for things we hadn’t done in a while. There are some good resources I’ve used before such as nostalgia quizzes on DVD, but in our particular home it’s difficult to get more than a small group around any of the TVs. I needed something we could do in a large area that would be entertaining enough not to have my audience wandering off, falling asleep or constantly asking “is it time for tea yet?”

Word games? A colleague had done a really good one the other day so it was too early to try again, even if we had only got to ‘Boys names beginning with C’. Panicking, I rooted around in a cupboard. Bingo? Popular with some of the residents, but bingo needs prizes and the help of other staff to help out the less able players. My colleagues were all busy elsewhere and besides, I know for a fact that if I was in a care home and staff suggested bingo I’d be telling them exactly where they could stick their two fat ladies.

I was just about to give up and tell the shift leader my time really would be better spent spell-checking the care plans when I came across a red plastic wallet with a CD and an A4 sheet with song titles on it. ‘The Musical Quiz’ didn’t look too promising at first, but I was grasping at straws here. I knew at least a few of our residents could belt out the big tunes from Calamity Jane or High Society whenever we put on the the DVDs, but would a session of ‘Name that Tune’ be a step too far for people who couldn’t remember what they’d had for lunch?

So ten minutes later I’d gathered a CD player, some cups, a jug of squash and a dozen people with a combined age of one thousand and a bit. And an hour and a half after that, we had, I think it’s fair to say, created a bit of a buzz. Yes, let’s repeat that. A buzz. In a care home. 

As resources go, The Musical Quiz was decidedly low-tech. Two discs each with thirty brief clips of well known tunes, each of which was numbered and announced, and repeated twice to help those who didn’t quite get it the first time. All I had to do was press the Play button, let the clip play once or twice, add a little showbiz-lite, crack some woeful jokes and wait for my makeshift choir to burst into song. Well, it wasn’t quite as easy as that, and that’s why the session worked so well. Some of the tunes were instantly familiar and picked up in seconds. Others needed a little more work. “Hang on, hang on – it’s on the tip of my tongue!” said Bert, as Mary would ‘la-la-la’ the tune until yet another of the group would suddenly grasp the first line as if retrieving the words from a radio show she’d last heard in 1945.

These were people whose dementia normally taunted and frustrated them for not being able to remember words and phrases that could and should trip off the tongue. But for this afternoon at least the effort of trawling deep-seated archives of memory (stored well away from those parts of the brain most damaged by dementia) was a pleasure, not a pain. It’s been well known for years how regular and frequent brain ‘exercise’ can slow down the progression of dementias such as Alzheimers Disease, but this wasn’t really therapy. This was fun.

Among the group were people for whom getting dressed is impossible without the help of staff. Some need constant reminders that meals don’t need paying for, or that they now live at Hill View and their daughter isn’t coming to take them home. Some have short-term memories so brief they forget the answer to a question within a few moments and have to ask the same question again. And again. And again.

But somewhere in each of those minds was a jukebox of songs. Songs that had perhaps lain dormant for decades but brought back to life by a few seconds of playback on a CD player. Occasionally I asked “When was the last time you sung this?’” or “Anyone remember who had a hit with that?” but nobody seemed to know. It didn’t matter. It’s the sheer joy of a good tune that had our early hominid ancestors building flutes out of deer antlers, me bouncing around the mosh pit to Bauhaus in 1979, and care home residents belting out songs in 2013 that were loved and sung by them, their families and friends long before I was born.

Now that’s what I call music.

Connor Kinsella
Lead Trainer, JCK Training

Next time: CARE HOME DIARIES PART 4: ‘Pictures on a Bedroom Wall’ where dementia makes my jaw drop

 

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

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CARE HOME DIARIES PART 2 ‘The Good, the Bad and the Ugly’

If you missed Part 1 it’s here. But in the second part of this short series, I get a job at Hill View House just as I start to think of social care as the new slave trade. Well, I still do. A bit.

No, of course Hill View House isn’t the real name of where I work, and we won’t be identifying any staff or residents by name or detail. But let’s just say I liked Hill View as soon as I walked in for my interview. For starters, it smelt nice. As anyone ‘in the know’ will tell you, this is usually a good sign for a care home. If you need nuclear-grade breathing assistance just to get through the front door of a care home, chances are it’ll be more than just your nose telling a bad story for the rest of the place.

I’d wanted to get back to some ‘hands on’ work but had let my my registration lapse some years ago and couldn’t go back as a qualified nurse.  So I’d been to visit a local agency  shortly before interview at Hill View. Their office reminded me of the shabby old car hire place my Dad used to run in the 70’s. Dust hung in the few shards of light that lit the shelves full of old ring-binder files with labels like ‘Helf & safety 2010’. A few wan faces looked up from their PC monitors to gaze at me for a moment. “Male, middle-aged. Looks a bit weird for this sort of thing” they probably thought before staring back at their spreadsheets.

I quickly learnt from the chap I’d agreed to meet that there “wasn’t much work for agency staff any more.” The sales pitch didn’t get any better. I would have to pay for a uniform. I’d have to pay for a CRB check. I’d have to attend 5 days of mandatory training, which is good of course. Apart from the fact I wouldn’t get paid to attend. And I’d have to do 2 ‘shadow’ shifts with another agency worker before flying solo. Yep, you’ve guessed it. In my own time. It was a very quick chat. I didn’t quite say ‘You’re [bleep] having a [bleep] laugh’ but let’s just say the agency manager wasn’t too unhappy to see me darting off into the fresh air and daylight muttering something about modern day slave labour and the taking of piss.

So back to Hill View. It was immediately clear that Hill View was a home for people with varying degrees of dementia. The more mobile residents looked bustling and alert, free of the slump and dead eyes of the Haloperidol fugue* I’d seen elsewhere. Other residents were clearly long immobile, coming toward the end of the long, terminal journey of Alzheimer’s or one of the other dementias. While I waited I could see staff engaging with people who were, in all probability, beyond comprehension of speech and certainly incapable of chatting about the weather. But carers chatted away nonetheless, knowing full well that this would only ever be a one-way conversation. With six months of these conversations under my belt I now know how difficult this is. I didn’t back then then, but it another thing I liked about Hill View.

Fortunately they seemed to like me too. With one brief but successful interview I was a relief care assistant, and with 5 days induction training and a CRB certificate to my name I was ready for my first shift and that dark Saturday morning with Ted and a very experienced care assistant called Hannah. 

Next week: CARE HOME DIARIES PART 3: ‘Pictures on a Bedroom Wall’ where dementia makes my jaw drop

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CARE HOME DIARIES PART 1 ‘Unfashionable, Unseen, Unmentionable’

Introducing a series of posts from the front-line of dementia care

It had been twenty years since I’d last dealt with bodily fluids that didn’t belong to either small children or one of the dogs. But here I was at 7am on a Saturday morning helping to wash and dress a chap called Ted. Ted has severe Alzheimer’s Disease. He cannot walk or talk, and needs constant assistance to do just about everything.

Before this, my last encounter with Alzheimer’s had been twenty years ago. I was training to be a Registered Mental Nurse and what was then known as ‘Psychogeriatrics’ really wasn’t the most popular placement for students. Hardly surprising for a specialty sounding like a David Lynch movie and promising little more than a seven hour shift full of old people’s bits and an ocean of human waste.  But I finished my placement through gritted teeth and carried on toward a career with mentally disordered offenders and far, far away from the ravages of dementia.

So wiping Ted’s bum on a Saturday morning while normal people were having a lie-in could reasonably be described as a culture shock for one who normally earns a living travelling up and down the country running courses, or sitting at home bashing away at a laptop. But in six months as a relief care assistant I’ve learnt an incredible amount.  About life. About death. About people. And a lot about dementia.

There was a time when dementia was, as it seemed to us student nurses, the unfashionable, unseen and unmentionable of health care. But more recently the blogosphere, social media, a smattering of telly and a renewed interest in the harm that can come to a group of people who are just about as vulnerable as it’s possible to be has made dementia a great deal more visible than it has been in the past. It is now something most people are aware of, even where they haven’t been touched by it themselves.

But there remains one perspective pretty much invisible to the dementia story. Not those of the sons and daughters of sufferers, many of whom have provided moving and hugely educational accounts of Alzheimers, Vascular, Lewy Body and all the other conditions which form the umbrella of ‘dementia’.

There are around 18000 nursing and residential care homes in the UK. They will be staffed by a team of mainly unqualified care assistants, primarily female and paid minimum or near minimum wage, In many cases they will have had just about enough training to tick a box and satisfy the CQC inspector, and may often have little command of English.

Theirs is pretty much a silence broken only by the odd hidden camera expose of physical abuse, verbal hostility or theft, or the ever growing focus on care home scandals where residents are left starving, dehydrated and rotting in their own excrement. If they work in people’s own homes as domiciliary carers, they don’t turn up, or when they do, spend barely any of the allotted (and paid for) time with their clients. We hear some pretty terrible stuff, but how often do we hear the care assistants’ side of the story?

Most people working on the front line of dementia care aren’t big on talking about what they do. From my own experience, this certainly isn’t because they’re inarticulate or have nothing to say. They’re just too busy putting in enough minimum wage hours to pay the gas bill. So this is a carers-eye view of a degenerative brain condition which ranges from the mild early-stage to the severe, terminal condition we rather clumsily lump into the term ‘dementia.’  It won’t always be easy reading and there will be mention of things we British would never normally mention, but I’m lucky to work in the sort of home where good things happen as well.

Connor Kinsella
JCK Training

Next Time: CARE HOME DIARIES PART 2: ‘The Good, the Bad and the Ugly’ where I get a job at Hill View House just as I start to think of social care as the new slave trade. Well, I still do. A bit.

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Physical Restraint: The Story Behind the Stats

As Mind publishes survey data and calls for a ban on face-down restraint, The Stuff of Social Care looks at the issue from the point of view of those doing the restraining

It’s been a long time since I last took part in physical restraint, but for many years I did work in environments where the need to prevent harm was part and parcel of a nurse’s working day.

For the most part we relied on the first resort. Talking, listening, reasoning, observing. Using a rapport that may have been built up over a period of time, and developing skills that were fundamental to working with highly distressed, agitated people. For most of my nursing career I was lucky enough to work in well-staffed forensic units where staff and patients knew each other well, and where the very thought of an agency or locum nurse was unimaginable.

But at times the last resort was unavoidable. Most of the trained, professional staff I worked with would much rather not use physical restraint. Like me, they would loathe the idea of holding down another human being to inject them with powerful drugs. But when all else has failed, or extreme harm was imminent, or where leaving a severely psychotic man or woman unmedicated would almost certainly leave them more terrified, confused and at risk than they already were, then I for one would not lose any sleep restraining that individual.

By the time I had qualified as a nurse, physical restraint had gone from the often chaotic bundle of arms legs and torsos of my student days toward a set of techniques called Control and Restraint (C&R), a Home Office approved means of managing physical aggression. I along with my colleagues attended regular training in C&R. We turned up at sports halls in trackies and trainers spending hours and days learning and practising the management of physical aggression.

A major (and rather unpopular) part of the training involved role-playing ‘the patient’ and being subjected to the procedures oneself. C&R was based on a 3-person team immobilising the patient. It used a certain amount of discomfort and even short bursts of pain to contain violent people, a fact which we as the role player would be only too well aware. Some of the techniques we learnt involved immobilising the patient face-down on a floor or bed. The reasons for this were that a) the person on their back can fight back much more effectively than if they are face down, and b) saliva and teeth make very potent weapons when they belong to a person who really, really doesn’t like being held down on a floor by several nurses. A key part of the 3-person team was the ‘head’ man or woman, whose job was to ensure minimum discomfort for the person on the floor and protect their airway.

But apart from the actual physical techniques, a fundamental of the training was that physical restraint was absolutely a last resort once every other strategy had failed, or where danger was imminent.

There are those who believe that physical restraint of the mentally ill is little more than state-sponsored thuggery, or who wonder whether restraint is necessary at all. Well, physical restraint is a necessary part of mental health care at times. That’s an undeniable fact, but it’s easy to see why and how restraint gets such a bad press, and why bodies such as Mind need to spend time, money and effort surveying it’s use.

We need go little further than Winterbourne View to acknowledge the presence of thugs masquerading as care professionals. From the very first emergence of the lunatic asylum, the opportunity to get paid for wielding power, authority and physical dominance over others has always proved attractive to a certain type of psychopath.

But there are much deeper and wide-ranging reasons why physical restraint may be over-used or abused. Mental health care certainly needs a sensible, contextualised and much broader discussion about physical restraint per se, and the reasons behind it’s use and misuse. The ‘face down’ issue is perhaps something of a narrow lens, and when 22% of staff report not having had face-to-face training in the last 12 months, we need to ask why that is.

I have a few observations. Questions about restraint are far from being a solely modern phenomenon, but for those whose 7.5 hour shift seems incomplete without a dose of adrenalin-pumping action and a ‘good decking’, current conditions have never been better.

Beds are disappearing. Only the very sickest of the sick have access to hospital treatment. The most distressed and disturbed are funnelled into smaller and smaller pockets of in-patient chaos, often provided by companies with shareholders and profit margins to maintain and gladly filling the gaps left by the running down of NHS in-patient psychiatry.

I would hope that such critical care would be delivered by the sort of skilled, well trained staff I described earlier. This all too often isn’t the case. Many of our most severely ill patients are being cared for by agency and locum staff with bare minimum training, a lack of experience and often poor communication skills. Many will barely know the names of the people in their temporary care.

This is where the ‘jump on, grab a limb and for f*** sake make sure they’re still breathing’ model of managing potential and actual aggression is practised today much as it was in the dungeons of Bedlam.

Right at this moment, someone, somewhere is in a psychiatric unit posing potential or actual danger to themselves or others. People with mental disorders can and do become violent, and staff are needed to contain the violence and minimise that risk. Hopefully they are with staff who can reassure, listen and diffuse aggression with empathy and skill. They are trained to use restraint safely and appropriately, and to be able to make decisions as to when and how it is used.

Mind’s survey results suggest this is all too often not the case.

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Welcome to the Re-Boot!

The Stuff of Social Care blog has now moved to the newly refurbished JCK Training website. It will look a little odd until I finish the integration process, but in the meantime the blog itself is fully functional so please feel free to dig around! Now that the JCK Training website is almost fully re-booted, more content will be on here very shortly indeed, and I for one can’t wait to get blogging again! see you soon.

Connor Kinsella

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With Connor Kinsella: Lead Trainer, JCK Training