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

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.

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.