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.   

 

 

2 Responses to Togetherness

  1. Steve Bailey 1st February 2019 at 12:04 pm #

    Hello Pippa

    I have just read your wonderful article about Togetherness and I would like to share something I posted on a forum about 10 days ago. The subject under discussion was ‘ the therapeutic lie ‘ which is something I have thought about quite a bit. I have copied and pasted my comment below and I realise it is reallly about mine and mum’s togetherness.

    ” I have thought about this subject for a long time now and mixed myself a little cocktail from other people’s thinking and my own. It has been said that truth is not just a two edged sword i.e. truth as seen from ‘ my perspective ‘ and truth as seen from ‘ your perspective ‘ but a three edged sword ‘ mine ‘ ‘ yours ‘ and then the truth as it really is beyond human perspective. So, does reality and our thoughts about it ever fully correspond…? I have my reality and my mother has ( for her ) an equally valid reality so I lie quite readily and engage with her as if hers were true using all the strategies recommended in this course.

    Paradoxically, light itself behaves as if it were a particle and as if it were a wave….I am the particle mum is the wave as we live our paradoxical life together …

    And we are two but neither tall nor short
    And equally we love in heart and mind
    And we are like two pillars of one fort
    Of equal faith and equally combined. ( from Strambotti by F.T.Prince )

    If all this seems like impractical nonsense ( and I’m not saying it isn’t ) it works for mum and me…..up to now.

    Warm regards
    Steve Bailey

  2. Pippa Kelly 10th February 2019 at 3:55 pm #

    Thank you for your characteristically thoughtful and wise comment Steve. I’m with you on this: why upset someone whose reality is true and valid for them? I am intrigued by the image of you and your mum living your paradoxical life together, while completely appreciating how very hard this must be sometimes. All the very best, as ever, Pippa

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