You don’t live here any more

John*, you don’t live here anymore.

 

28 days ago,

we served you notice –

wrote to your family,

your (90-year-old) wife

and advised that

we can no longer look after you.

 

You see,

your behaviour is

far too

challenging for us…

 

Again, you see,

There have been complaints.

 

The night you

accidentally,

we presume

entered Mrs P’s bedroom and

climbed into her bed;

peed on the floor,

or, the aspidistra,

 

That was not OK.

 

We know you don’t know at times

where you are or

what

you are doing.

 

Your capacity is, lacking;

and that

for us, is a problem.

 

And now

a problem for your family.

who must find somewhere for you to go;

 

Organise your relocation;

acclimatisation

and

adaptation to another place

 

Somewhere else,

just,

not here.

 

We have served you notice.

and

If you aren’t off very soon;

well…

we aren’t sure what we will do – but, it is unlikely to end well.

 

The next tiff or tantrum or angry spat where you appear to threaten

or hold too tightly

to someone’s fingers,

and we will likely

Call the doctor.

 

No… this is not a threat.

We wouldn’t threaten to have you admitted under a section of the mental health act

to

Secure accommodation

but,

that’s always an option.

 

Just, so you know.

 

Just so your family are aware

That the night-time antics;

Running around the garden,

or

Trying to climb through the window

or

over the wall

are just not something we can accept

and

nor can the other residents.

 

We may have offered you a home six months ago,

called this your

place of residence

since then,

but,

homes are moveable feasts

and

You now must relocate

to another place

In the borough.

 

Someplace else,

that is not here.

 

Change of address;

 

New carers or nurses or friends,

unfamiliarity within a vague space.

 

Dementia and struggling to form new memories,

you are

allocated a place

that is better suited to meet your needs.

 

John.

Yes,

That is your name.

We honestly, really, do, very much care

and

are totally interested in your

wellbeing.

 

But,

enough is enough;

 

Periods of notice relate to the correspondence sent to relatives and next-of-kin of those in our society living in nursing and residential homes, when, after a period of assessment and review, it is felt that care home can ‘no longer meet the needs’ of that individual.

The most frequent reasons relate to situations where the person, often an older man who has vascular or another dementia, following episodes of aggression, anger, fear or agitation is felt to be having a significantly detrimental effect on other residents.

Most care homes do not take this decision lightly, for they know the consequences, which can be disastrous for the older person – the trauma of relocation is huge.

In some areas, we have community psychiatric teams supporting older people, who are able to work with the care home and the resident, review what triggers certain behaviours – inadequate lighting and the resident can’t see where they are going, confusing way-markers and the bedroom of another is mistaken for theirs, fear, pain or anxiety and they cling to you for dear life, unaware that their grip is causing pain.

There is much unravelling that can be done to rationalise patterns of behaviour that seem complex and, are described by some as challenging.

Seeing the person, perceiving the world as best we can from their perspective, or point of view, can take us far. Recognising triggers – hunger, a need for the loo, fatigue, all require sensitivity which are hard to programme into the scheduled protocols of a CQC compliant residence. Some of this cannot be learned, it is innate – an internal sensitivity; emotional intelligence that allows for unspoken communication and understanding.

Sometimes what is needed is, slowing down. Pausing. Observing. Listening, reassuring, empathising.

The person who cares and the people who care and those who sit in the centre, who, belong in the caring professions, the mystical arts of empathy and compassion.

Call it mystic if you like.

 

*This narrative is a fictionalised composite.

 

 

 

 

 

 

Sleep

There is a science of sleep.

This evening as I was driving home, I heard Peter White discussing sleep disorders in those who are blind or have significant visual impairment.

Unlike our crepuscular cousins, humans are diurnal; we are designed to sleep when it is dark and potter during the day, creating industry, building things.

Central to this system is the function of the pineal gland and the hormone melatonin, which alongside an array of other chemicals regulates our sleep-wake cycle.

Light plays a central role in this which, via our retina which feeds directly into our brains,* makes us sleepy at bedtime and perky in the morning (for those early-birds like me.)

Sleep and wake are of huge importance to patients in hospital and, in particular those who have dementia and related disorders, where their sleep-wake cycle can be turned upside down; inverted. Added to this, reduced exposure to meaningful daylight and monotony, loneliness, immobility and frequent cat-napping and you have a perfect storm for sleeplessness.

The nurses on Mallard know all about sleeplessness; sometimes preceded by sun-downing – the change in behaviour experienced by people with dementia as light fades, cortisol falls and visitors head for home.

I sometimes jokingly refer to this experience as being akin to Night at the Museum – the Ben Stiller movie where the exhibits come to life as the lights go-down.

When my patients sleep during the day and are awake at night all sorts of bad things can happen. At night, with fewer staff, there is less supervision, with lower levels of light, the likelihood of falling increases, with night, shape-shifting illusions come-out of the dark, worsening confusion and disorientation; meals are missed (although we do our best to be flexible), as are tea-rounds; weight-loss and dehydration can ensue.

It is all a jumble. We aren’t designed to be up and about at three in the morning.

We try to rebalance sleep by increasing daytime activities, by talking, joking and engaging with our patients, getting them up and dressed, dancing, singing, drawing, painting.

Hospitalisation as well as being one of the highest risk experiences for older people can also be one of the most boring.

We try to break the monotony, I know however, despite some great work across the country, the standard experience for the average hospital patient – particularly someone who is older and trapped by pathway delays, is one of days that are long and uneventful and tedious.

Your pineal gland doesn’t get a look-in in these situations.

I sometimes resort to sleeping remedies, when the Horlicks hasn’t worked – Melatonin, the recent addition to the pharmacopoeia has shown some promise, but like all drugs, works for some but not others, more often than not the latter.

This is back to the start – it is shining the light on the complexity of care, on what it means to look holistically; to be responsible for the journey, beginning to end. Acknowledging that the old thinking – the doctor see, doctor do, is no longer adequate; only when all the dimensions of night and day, sickness and health are considered, in the round, can we hope to make a difference.

Enough is not good enough.

It is not just what you see that matters, but the hidden, the esoteric pathways of nursing and medicine, pharmacy and therapy, talking and listening. Night and the day; sleep and wake.

robin-williams-in-night-at-the-museum-3-is-heart-wrenching-to-watch-video

*Never realised I was photovoltaic.

UTI

UTI – Urinary Tract Infection.

UTI has become part of everyday language. A meme that represents our changing society.

Twenty years ago, when I was at medical school UTIs existed, they were however still within the rarefied toolkit of doctors.

UTIs have grown and changed, morphed from something specialised, something that you needed a medical degree to diagnose, into a 21st Century commodity like Vapes or cans of Red Bull.

It is not uncommon for a relative to tell me that they think their mum or dad has a UTI.

‘They always behave like this when they have a UTI,’ or, ‘It’s a UTI – you can smell it a mile-off,’ and, words to this effect.

Relatives and carers aren’t to blame for this quick-fix, quick-fire method of diagnosis as the whole health and social care economy has jumped-on the bandwagon of UTIs, not as a panacea, but as an explanation for most that goes wrong with older people – falls, confusion, pain, immobility, fever, non-specific blood-test anomalies; you name it and it can be caused by a UTI.

Or not.

You see, when a scientific approach is taken and the situation analysed, we discover that there is more in the world of frailty and ageing than urine infections.

In reality, UTIs are actually more complicated than an older person smelling of pee.

Smell is not a UTI. Smell is just the smell of pee.

Falls. Older people fall. They also on occasion become confused; this is delirium – a reversible condition akin to dementia which is irreversible and, which can also be experienced by people with or without UTIs.

As we age, our microbiome evolves; the bugs living on our skin, in our bowel and bladder alter. Urine is meant to be sterile, although often, in older people, bacteria get in, but, instead of pathogens causing disease, are either commensals – living in harmony or, tourists in your urethra.

These aren’t UTIs; for this purpose, we invented Asymptomatic Bacteriuria.

Treating asymptomatic bacteriuria is a little like the tactics used by Texas police; Hands in the air. You look iffy… I’m taking you down the station.

Time has fuelled the growth in UTIs in A&E and, in 21st Century Healthcare in general. The numbers of people, seeking assessment, diagnosis and treatment, all, squeezed into a limited window of opportunity encourage quick fixes; botched jobs that take you nowhere;

This is the prescription for Trimethoprim, when, a person is lonely.

It doesn’t work.

Or, when an old woman is poisoned by other drugs prescribed decades before to treat real conditions and which are no longer a risk – statins, pain-killers and blood pressure treatments; the answer, another drug that isn’t needed and compounds the insult.

‘It’s a UTI,’ doctors and nurses become complicit in the scam. Often this is given as a diagnosis when nothing else fits, or, when what fits is not congruent with what is apparent. And then, with more time, more reflection and analysis the diagnosis is undone – de-diagnosed and the medicine de-prescribed, we find ourselves untangling the knot.

The overuse of antibiotics globally is considered by some, to be as great a threat as global warming, international terrorism or avian flu. These are boogeymen that capture the headlines.

Nitrofurantoin – how can that harm you; go on, just a little prescription, just a few tablets;

My request? Well, that is to slow down.

Think UTI by all means, but don’t allow it to overwhelm the senses.

Think linear.

In most instances it is straightforward, and here is the trick.

Stop, look and listen.

When in doubt, don’t UTI.

When in doubt, stop, look and listen.

The patient will almost always have the answer; the befuddlement of dementia or delirium or, aphasia is why we have doctors and nurses – to disentangle the narrative.

That is the challenge. That is the effort.

david prowse

 

Psst, over here…

Look,

Over here,

There is a door;

The lock has broken.

Off,

Off you go,

Yes, that way…

She immediately stepped into the wardrobe and got in among the coats and rubbed her face against them, leaving the door open, of course, because she knew that it is very foolish to shut oneself into any wardrobe.
Soon she went further in and found that there was a second row of coats hanging up behind the first one.

Off, to wherever you want.

Magical transportation that cuts-out the social-care assessment as middle-man and destroyer of hope, that fast-tracks you to home, or even, manipulating the magic of time and space, back to that happy July in the garden with mum, baggy shorts and old Celtic top, spinning though the moments of tot squeezing into the living-room chair, snuggling; kitchen table Friday night smells and creaking floorboards.

Back, back, to the farm, the milk round, back, to the days before the evacuation or the sirens, back to the place of comfort where mum and dad and baby are safely waiting.

Here it is, the bus to Upton.

Stuttering stop-start moments that are the present; your son, husband? Children, gathered round, concerned, smiling, vulnerable; the uncertainty between independence and locked away somewhere, with fifty other old men and women for the final days.

And, back with nurse, holding my hand as we negotiate the corridor, the dayroom, flower-bed, sensory garden.

Is it any wonder your frustration is occasionally perceived as anger and my compassion as hurt?

Website Through the Wardrobe

 

 

Me, we, dementia and Donne

This year the Dementia Action Alliance, released a new set of ‘we’ statements relating to dementia.

This was a significant change in the way a disease – dementia is considered. The statements were generated through discussion and consultation with those living with dementia and those supporting them.

Here they are:

      We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.
      We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
     We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
     We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
     We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

Disease, although it primarily affects the individual does not stop with them; it occupies a place central to friendship, family and society.

Dementia is a disease of neurones, one brain cell at a time malfunctions, spreading eventually to the whole person.

None of us can live in isolation (beyond the Aristotle/Nietzschean idyll) – I link to you who connects with me; I become us and we.

Perhaps this is an approach that should be taken to all disease – moving the expectation that whether you have eczema, asthma, diabetes or cancer – the monad of me alone, suffering in silence is not what we are about.

We, evolved to live in groups, societies, collaboratively, supportively – if we allow disease to affect just individuals, to peel them off from society, for whom does the bell toll?

My hay fever affects me; it is me who is sniffing and snuffling through the night, yet, it has affects beyond my person, it reverberates throughout the household.

My arthritic knee, or back or neck, causes me pain, yet, the experience ripples through my family and friends, it changes the dynamic.

Grenfell tower is a representation of me and we; me – the mansion owners of Kensington, somewhere in the world, living it up, their empty houses abandoned yet secure with the latest burglar and fire alarms. And, down the road, the people packaged into minimum square-space existence.

Brexit is another example; I am fine, thank you very much; We isn’t something that is part of the equation – you, you foreign, dark-skinned migrant, refugee, asylum-seeker are not part of we, you are peripheral to us.

The irony of the justification for TM not meeting victims of the fire because of concerns over her own safety.

The irony that so long as I have my car, my holidays, pension and day-time TV, things are alright, don’t bother me with the trivialities of Mogadishu or Damascus.

The we statements represent a shift, a movement away from me to us, from them to we;

Don’t peer too deeply inside; it’s not just about the medicine or the tablet, it is the relationship that counts.

This spills-over into patient safety; when I am considered first, and my patient second, when my troubles or preoccupations are allowed to dominate the narrative, when I forget that my place is to care, I risk forgetting the ‘we’ – I risk not seeing the patient, who by extension is me.

Person-centred care – seeing the person as central is as relevant as seeing that the person you are treating is you, could be you or, your mum or dad, brother or sister.

Once this shift, this change in perspective has occurred, nothing can ever be the same.

We not I.

Us not me.

xxxx

I learned yesterday a little about photons.

Photons are the smallest indivisible particles of light that exist without mass, without occupying space or volume.

Beyond this conception are different species of Photons. Entangled Photons are paired particles that are also indivisible. What makes them stand apart from anything else in the universe is that the two can never be entirely detached.

Stretch the entangled photons to different sides of the universe and what affects one will affect the other, no matter the distance or separation.

Like conjoined twins who share feelings or sensations regardless of distance or geography.

This takes us back to the notion that ‘we’ needs to be considered the smallest unit of society. And, this is not just ‘we’ in the sense of, my family, my town or tribe, but, ‘we’ in the sense that what affects one of us affects us all.

We are indivisible.

This is what makes us human.

photon

York – somewhere else;

I spent a few hours in York yesterday.

I travelled up to present some of the work we have done in Doncaster in relation to Quality Improvement, dementia and delirium (signing, dancing, dog-visits – that sort of thing).

Recently, I have been talking about the perpetual Narnia which the government has foisted on the NHS; walking into the reception of the York Racecourse – where the Quality Improvement event was held for the 600-odd delegates was like not just going back through the wardrobe, but shaking Aslan out of his stupor and having a jig.

york.jpg

The place was abuzz with positivity, can-do creativity and energy, I had to pause and question whether I had come to the right place.

There was a roomful of posters created by a multitude of departments across their organisation – discussing everything from falls prevention to operating theatres and happiness.

york 2.jpg

Well-done York.

Perhaps the post-election disorientation affected my perceptions; on three floors staff from different departments demonstrated their work – showed-off what amazing things they have achieved and plan to accomplish; it was positive psychology in action.

Why I am telling this story, is not to big-up York, although I think they should be bigged-up, but, more, to explain that despite all the crap, regardless of the illegitimi carborundum, they managed to pull-off something special, something that demonstrated the reality that good begets good, which leads to great and, you sometimes need that step-up to proceed.

Thanks to York for opening the Land of Spare Oom door, If only we can harness this energy, there will be no crisis, we’ll be flying.

Memory

Memory; as, quicksilver, unintelligible, hypnotic, intoxicating.

I remember, it was likely 1993, in a garden in Dundee.

A young woman said hello;

It’s Pxxx; how are you?

My expression blank; puzzled.

It appears that Pxxx and I were once classmates in primary school; that would have been in the early 1980’s. 13 years before.

I had no recollection of Pxxx. She didn’t look familiar. I couldn’t place her name. Nada.

I guess, had I been a different person, I would have pretended to know her, perhaps talked about the good old days, running around playgrounds with grey shorts and anorak. Instead, I said, Sorry, I don’t know you.

After a while, she walked-off.

I had a similar experience today, but, worse.

I met someone I knew, someone I had talked with maybe three or four years ago, and, I didn’t recognise them at all.

The person I met was so ill, had so deteriorated, physically, that I was unable to recognise them, even after we spoke; walking away, I wasn’t certain whether they weren’t someone else;

To compound this lack of recognition; when I first approached, I smiled – something I do frequently at work; smiling at people I do not know. Some smile-back, others less-so.

This person returned my smile times-ten.

My lack of recognition confused me; I returned a so-so smile and went on my way, later, I spoke with them.

I still did not recognise them. Now, I realise, I am pained to think, that they recognised me, but then, they saw that I had not remembered them, and they, insightfully, continued the ruse; they didn’t challenge my lack of recognition, they accepted it, as I imagine they have experienced before with others who were unable to see, for whatever reason.

I could not remember the classmate, nor the friend, yet, when I look back at moments of my past, some are frozen in time.

So many of those I have known then never seen again, from my childhood, my youth, adolescence; are still, in moments in time, their images hanging in perpetuity. They do not grow old, just as the soldiers, just as the film-stars and icons.

And I, who spend so much of my time surrounded by people whose memories have faded, who have lost the last 10 or 20 or 40 years of their lives, who exist in a vacuum of the 40’s and 50’s.

Perhaps my fallibility explains the affinity. Perhaps the recognition that I am no better or worse, no different to them, is what maintains me, is what enables me to continue like this.

In a moment, we all exist in moments. Bubbles of time. Perhaps.

And, this realisation gives me an impression of my place in the tableau;

I often talk of person-centred care; it forms the centre of much of my work, yet, when I unravel the meaning, when I unlock, and, look deeper, the realisation becomes more apparent – it is the awareness that this form of care is only possible when I do not just see the person, even, see them as my mother or father, but, as me.

When I see that the old woman who has fallen could be me, the young man with pneumonia, those with confusion, hospital acquired harm and disability, depression, anxiety, organ failure, deterioration and degradation could be me, that is when I can begin to provide more meaningful care.

It stops being us and them and transforms into us and we. Me. I might be the person that is forgotten, who a friend or colleague fails to recognise. It could be me. We must maintain this awareness to facilitate a balance. To ensure our humanness.