The Art of Living

Photo credit © Royal Academy of Arts, photographer: John Hammond

What do you see when you look at this painting?  A couple in the foreground who look a bit bored in what looks to be a gallery or artist’s studio?  Or perhaps your gaze goes straight to the collection of impressive looking busts and the striking white horse which, it suddenly hits you, is bang in the middle of the piece.  No coincidence, surely?

These thoughts and questions were raised by a bunch of about 16 of us gathered in one of the fine collection rooms of London’s Royal Academy the other morning.  None of us knew what the painting was called, or who it was by.  We were simply observing closely, guided by two experts. Within the space of a few minutes we had been drawn in, our day to day lives forgotten, our attention riveted on a piece of painted canvas.  Another world.

Dr Brian Morris, 76, wondered why the slumped, seated figure on the right had no head.  It could be, explained Kim Jacobson, one of the artist educators steering the discussion, because the woman was bent over, her back to us so her head was obscured.  An explanation which, on careful examination of the sculpture in the painting, seemed eminently feasible.

Penny Davis observed that the woman in the foreground seemed to be keeping herself to herself, that there was a calmness about the couple.   There was broad agreement that the pair knew each other and were comfortable in each other’s company.  As to their relationship, a long debate ensued as to its nature – friends, uncle and niece perhaps, or father and daughter, lovers even?

The great thing about the morning was that each contributor’s opinion was as valid as the next.   Unless I’d been told I wouldn’t have known that at least half those present were living with dementia.  For we were all enjoying one of the Royal Academy’s monthly Monday morning art, coffee and conversation sessions for people living with the condition (for more information, see the link here)  .

It turned out that Dr Morris, attending with his wife Marian, had been diagnosed with Alzheimer’s six years ago.  “Brian has good days and bad days” she told me.

“Coming to the art session gives him a good day because he’s living in the moment and not worrying that he’ll get something wrong – his opinion of the painting is as valid as that of the person sitting next to him”.

Penny Davis and her daughter Harriet at the Royal Academy

Seventy-seven-year-old Penny who had come with her daughter Harriet was diagnosed in 2016.

Here, in the Lee and James C. Slaughter room of the Royal Academy we were all existing in the here and now, in front of an intriguing painting, free to say as much or as little as we wished.  No labels.  No discrimination.  No stigma.  For myself, I found it very refreshing to take time out of a busy life to simply stop and stare and think.

The morning, with its emphasis on living in the moment, reminded me of an early blog I wrote about a report with some innovative ideas on how to improve the lot of those with dementia.

One the most controversial suggestions of the report, commissioned by Red and Yellow Care (now rebranded as Halcyon Doctors) is that in the process of helping people with this cruel condition to live well, too much emphasis is placed on memory, on things as they once were, instead of things as they are.  It’s a notion that defies conventional thinking, which often sees those with dementia being surrounded by objects and photographs from their past in an effort to make them feel happier and more secure.

The report cites Nobel Prize-winning psychologist Daniel Kahneman, who draws a key distinction between what he calls the “remembering self” (our memory of our experiences) and the “experiencing self” (the elusive here and now which those of us with busy lives rarely stop to dwell in).  Kahneman suggests that we should all suppress our “remembering selves” a bit and focus more on the present.

The report says that Kahneman’s theory has implications for those with the condition. “One might even argue that the growing inability of people with dementia to remember – coupled with their often uninhibited approach to enjoying happenings in the moment – has something to teach those without dementia about the value of the experiencing self”.

When the actor Timothy West spoke of his wife Prunella Scales losing the ability to remember things very well because of her Alzheimer’s, he described how much the two of them enjoyed their leisurely canal trips.   “You don’t have to remember things on the canal.  You can just enjoy things as they happen – so it’s perfect for her”.

Meanwhile, back at the RA, we finally discovered the name of the painting.  It was Tea in the Studio,  an oil on canvas painted in 1932 by Arthur George Walker RA and the two people having tea were in fact the artist’s brother Harold and a friend.

This was intriguing.  But in the scheme of things it wasn’t really that important.  What mattered was the taking part.  The discussion.  The engagement.  The stimulation.  All of us, to paraphrase Kahneman, let go of our piled-up cares, the other bits of our lives, and focused on what was in front of our eyes in the here and now, on our experiencing self.  It was rare, and wonderful.

Occasionally, just occasionally, dementia throws up a tiny morsel of something good to think about.  At the Royal Academy the other Monday morning, it did just that.

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Carers

This week seems to be all about carers for me.  I opened my inbox to find an email from one of my oldest friends.  Her mum, diagnosed with dementia the year before, died last autumn aged 85 and now her elderly dad, a partially-sighted diabetic, has developed dementia and is struggling to live alone after over 60 years of married life.   Sad and difficult times for a family I’ve known since I was a nipper.

My friend wondered what questions she should ask three agencies she’d contacted seeking live-in care for her 92-year-old dad.  All three have been awarded Outstanding by the Care Quality Commission, which sounds like a good start, and Linda had already enquired about what was expected in terms of the carers’ accommodation, and about rotas, money and food.

But we all know that nothing beats meeting carers face to face, sounding them out, getting to know them.  People are nothing else if not individual.  As is Linda’s dad.  A lovely man who never quite lost his Nottinghamshire accent despite having lived in Surrey for over seven decades.

What you want, of course, as my mother-in-law identified when her husband needed extra help in his final days, is a blend of professionalism and compassion.  It’s the holy grail of social and healthcare.

Sometimes, fortune smiles on us relatives – as it did with me and dad.  Caught off guard one Friday night (it’s always Friday isn’t it?) by a GP’s call informing me that dad had suffered a stroke and needed 24 hour care immediately I phoned around care agencies with a growing sense of panic.   No one – good, bad or indifferent – was available for at least two weeks.

In desperation I phoned my mum’s nursing home, whose manager saved the day.  “I’ll put in a call,” she said.  The next morning, Saturday no less, Martha arrived at my father’s flat at 8am.  She stayed three years, until dad died.  She was a God send.  A natural carer with a loving touch and a warm heart.

Originally from Zimbabwe, her English wasn’t perfect, but it didn’t matter.   Within a few weeks dad’s rheumy eyes followed Martha’s every move, and in his final months this church-going, middle-aged mother came to mean more to him than any of us family because, with quiet, seemingly infinite patience, she performed the most intimate tasks for him.

Before Martha, before dad needed formalised, live-in care, there was Marius.  A young Polish lad who worked for a charity (so was CRB checked) and did the odd stint at dad’s favourite local restaurant.

When I realised that dad needed a hand with shaving, washing and cooking, word came to me that Marius might like to help out.  I went to meet him before his lunchtime shift at the Rialto in Dorking.   Two hours and three cappuccinos later there was no doubt in my mind that Marius was the one.

Dad, who’d come across several Poles while serving with the Royal Signals in the second world war, loved them.  He didn’t speak Polish but he did speak French, and so did Marius.  The two of them enjoyed chatting en français for hours on end – Marius’s accent was better than dad’s but that didn’t matter, the important thing was that they got on.  Like a house on fire.

In Marius and Martha, I had stumbled across carers who perfectly suited, not just dad’s needs at the relevant times but, just as importantly, his personality – and him.  This feeds into my argument that care homes for those of similar backgrounds – such as the Royal Hospital Chelsea for army veterans, London’s Denville Hall for retired actors and the much-lamented Pickering House in my home town of Dorking, Surrey for ex-journalists (which closed last year) – provide immediate connections and topics of conversation for those who live there.

Recently I came across Elder, a live-in care specialist that matches your loved ones with experienced, vetted carers.  I haven’t tested Elder’s claims but am very much in favour of their advertised offering and will investigate and report back in a later blog.

I was reminded of Marius when I read of the Government’s drive to recruit thousands more care workers, specifically young people.  The Every Day is Different campaign is being promoted on social media platforms and online sites through this month and next to encourage under-40s to take jobs such as care workers, therapists and activity co-ordinators.

It comes as a report by the Health Foundation charity says that a lack of community staff may damage the NHS.  The recruitment drive focuses on the rewarding and diverse work to be found in care – something that many of you reading this won’t need to be told.

But while many of the young care workers involved in the campaign have inspirational stories to tell, they talk too of the poor pay and lack of career structure.  Twenty-two-year-old Greg Mather is a final year degree student who has been working part-time as a domicile care worker for a year.

He told the BBC, “It has been hugely advantageous to me in the long term as it has provided me with amazing experience in working with vulnerable adults”.  But adds that it is not enough to say that ‘you’ll feel so rewarded after each shift’ if you are paid so little.

“For such an emotionally and sometimes physically demanding job it is shocking that the majority of care workers are paid the minimum wage”.

I couldn’t agree more.  In 2013 I wrote a Thunderer column for the Times arguing that as a society we outsource the care of our elderly relatives to formal carers, pay those carers peanuts (less than my then 15-year-old daughter received for babysitting), fail to provide carers with meaningful training or to recognise the complex emotional and physical demands they face and then moan like stink about them.  In six years nothing much has changed.  Now there’s the added worry of a post-Brexit world.

To return to my old friend and her dad, and hopefully end on a more positive note, if any readers have further suggestions for questions that Linda might ask potential agencies and their live-in carers could you leave a comment or DM me on Twitter.  Likewise, I’m happy to pass on the names of the three agencies Linda has approached if you contact me privately – and keen to know your views on them.

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Back to Basics

The BBC has been told to go back to basics and concentrate on public service broadcasting if it wants to survive. 

James Kirkup, director of the Social Market Foundation think tank, hailed the corporation for helping to make Britain not just a country but a nation, but warned that it was in danger of being killed off by the internet as more and more of us watch our favourite TV programmes and listen to radio on our laptops, Ipads and Iphones.  

“When everyone watches the world through their own screen on their own terms, we all have less in common,” he argued recently in the Times.  

I know what he means: I’ve just published a blog on togetherness, urging us all to think less in terms of them and us and more in terms of we when it comes to different generations and those with dementia.

Even more to the point, I have up my sleeve the perfect way for the BBC to redress this balance.  As Kirkup says, trying to fight YouTube and other internet streams on their own ground with youth-focused content hasn’t worked for a behemoth like the British Broadcasting Corporation – in fact it’s only succeeded in annoying existing listeners.

So, why not do what it does best: some good old-fashioned public service broadcasting – in the form of a weekly radio programme which, while it has multi-generational appeal, will hugely enhance the lives of older people (particularly lonely ones) and those with dementia?  To test the waters, trail it on local radio first.  Simples.

I am talking of soprano Lesley Garrett’s inspired idea to reintroduce the BBC’s defunct weekly radio programme Singing Together, this time with a slant towards the elderly and those living with one of the cruellest conditions there is, for which singing has been proven beyond doubt to be hugely beneficial. 

I’ve a sneaking suspicion that Kirkup may have other things in mind when he argues that a BBC focused on public service programming “would offer the cultural common ground that an angry, divided country needs”.   But Brexit withstanding, he is right to say that if a family needs shared experiences and reference points, so does a nation. 

The original Singing Together radio programme was introduced in September 1939 at the outbreak of the second world war to comfort evacuated children separated from their families and help them feel less displaced. 

By the time I was enjoying it as a nine-year-old in my home counties’ convent Britain was into the ’60s and the war was well over.  But I can still remember the sense of reassuring continuity and community that it engendered as I belted out One Man Went To Mow knowing that all over the country hundreds of others were singing the same song at exactly the same time.

The programme, originally aired on the home service for schools, had been moved to 11am on Radio 4 by the time I encountered it.  It ran for just 20 minutes, presented in the friendly Yorkshire tones of William Appleby, who told us a bit about the song – its history and some of its simple musical characteristics – sang a couple of lines and then invited us youngsters to join in.

As many of you may know, I lobbied Tony Hall, the BBC’s director general, to take up Miss Garrett’s idea.  He politely refused.   But as the nation suffers a collective nervous breakdown over Brexit perhaps now’s the time to go back to the corporation, urge it to heed Kirkup’s warnings, return to its roots and its public service remit, and reintroduce a radio programme that will bring the nation together to sing.  

It would be a great way to save the BBC from being killed off by the listening and viewing habits of the YouTube generation – while at the same time providing a wonderful sense of belonging to those of an older generation whose lives are all too often lonely and isolated.

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Togetherness

There was a great Twitter exchange about the term “service users” recently.  Big Ian Donaghy, aka @trainingcarers, asked if anybody else hated the phrase as much as he did. 

“It’s like they had a contest to find the best word for people we care for and the 31st best answer WON!”

His view was shared by numerous other tweeps, many of whom disliked the inhumane nature of the term – Scottish-based @ClydeCarers thought it sounded as if it belonged to someone using a washing machine. 

Nursing home manager @Benjami8784 said the first thing he did on taking up his post was to abolish terminology, telling staff that they shouldn’t use any labels they wouldn’t be happy to wear themselves.  “It works,” he concludes, adding that the home’s policy is to use “people we care for” to differentiate between the different groups.

Innovations in Dementia co-director Damian Murphy (aka @elhijodevera) mused that there was still a long way to go before expressions such as “there was me and five residents in the home” – I must say as a pedant, I’m not wild about the grammar of that phrase, let alone its divisive nature – are widely replaced by “there were six of us”, which is so much better in every way.

Someone else mentioned how people living in care homes suddenly become passive recipients requiring feeding (horribly reminiscent of feeding time at the zoo), when in fact coming together to chat and share food and drink around a table is one of the oldest and best forms of socialising. 

If and when I’m living in a care home and no longer able to eat unaided I’d love a friend, one of the family, or someone living or working with me, to come and sit and chat with me while offering the odd helping hand.   Whereas I wouldn’t like to think of myself as someone in need of feeding – or toileting come to that.

The discussion got me wondering about labels and why we love to dish them out to people who generally don’t want or like them.  I believe much of the reason lies in our inbuilt sense of them and us – nowhere is this more true than in our attitude to older people.    

The American writer May Sarton described old age as “a foreign country with an unknown language to the young and even to the middle aged”.   

While the US philanthropist Bernard Baruch put it another, equally good, way:  “Old age is always fifteen years older than I am”. I’ll go with that, forever and ever.  But seriously, why is old age always over there, somewhere else, never where we are, even when we are?   Because deep inside ourselves, we irrationally think that it will never happen to us.  Until it does. 

I’m of an age now where, catching sight of myself in the mirror, particularly if I haven’t sorted out my hair or carefully applied my camouflage of makeup, I wonder who on earth the much older woman looking back at me over there, actually is.  And then realise with a shock that it’s me. 

This irrational sense of our own individual immunity to ageing combines to contribute to the differentiation, even stigma, felt by society to older people, who are so often viewed as a burden, undervalued and neglected.  All of which of course is not only patronising, divisive and, let’s face it, pretty unpleasant, but a missed opportunity to harness the wisdom and experience of those who are more mature than us.

Sadly, this misplaced notion of them and us in relation to old age is even more pronounced when it comes to those with dementia – with the subsequent increase in stigma and exclusion that this entails. 

I confess that before dementia affected me personally I had no interest in it.  On the rare occasions the condition crossed my radar I was almost certainly careless and unthinking, not only in my use of language but in the way I interacted with anyone who happened to be living with it.  I was never intentionally rude but I didn’t understand what dementia was and my ignorance fed my fear.   Replicate my ill-informed reaction to dementia across the population at large and you can easily see why stigma lingers.

But once my own mum developed vascular dementia, woe betide anyone who looked at her askance or spoke of her dismissively when dad and I took her to her favourite restaurant.  She was my mum.  So, she happened to have dementia.  She was still my mum, with her big heart, her eccentric ways and her numerous faults.  At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated.  We are all in this together.

Now that I meet and write about so many who are dedicating themselves in myriad ways to improving the lives of older people and those with dementia, I realise that the most successful enterprises all share something in common: a sense of inclusivity, of us rather than them and us.

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Lambeth’s Healthy Living Club: there is no them and us, just all of us together

A few years ago I visited Lambeth’s Healthy Living Club where those with dementia and their families and carers come together to eat lunch, sing, dance and generally have fun.  This is how I described it in my blog: “This is not somewhere that “provides care”; there are no carers and cared for, no them and us, and certainly (thank goodness) no service users.  Instead, I met a group of people who have gradually evolved into a community and become friends”. 

The same thing struck me at The Mede – a holiday home-cum-day-club for those with dementia and their families in Topsham, Devon.  The afternoon I arrived eight people were sitting round a table playing a variety of games – it turned out that four of them had dementia, the other four were carers or volunteers.  I didn’t know this and it was irrelevant.  What mattered was the chat and laughter, the endless cups of tea, the delicious smell of freshly baked biscuits and, through the large picture windows, the expansive, ever-changing view of the Exe estuary.

Life is life; it’s finite and it has its ups and downs, but it’s ours for the moment.   Whether you’re young or old, a person with or without dementia, a carer or a someone being cared for, the thing to remember is that we’ve all been put on this earth together.   Divisive attitudes are never good.   

 

 

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