Patience: coming into

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Patience' defined as 'the ability to wait or endure without complaint'. The term suggests dignity and stoicism. Qualities that emerge from the participants in this book when their thoughts are expressed. For eg/ 'Coming into hospital for the fifth time.... (Mary Anandale)

 

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

Coming into hospital for the fifth time

coming into hospital for the fifth

hate to think of so many times

it’s a desperate thought

I don’t want to think it

get on and forget sadness

get on with it and remember only the

forget

who you’ve been with

where you’ve been you’re not yourself

I’m so glad that they come

I’m so glad that they come

I can’t say how often but they do

it’s action for yourself

to see someone

to see some with the same

perhaps the same difficulties

you are not alone

there are many people like you for better or worse

there are many people who like you

good people there are many

friends of myself friends of I

saw

my place

sat in my chair

saw my place sat in my chair

I can see so much from here

I wish

good

I can see I can hear.

Mary Arrandale

Anona Entwhistle

Close-reading PATIENCE - by Matt Dalby

Matt Dalby is one of several contemporary poets we asked to repsond to PATIENCE. Here, Matt traces a path between two pieces: Be Patient by Margaret Hargreaves, the poem that states the theme of the collection, and a self-exploration of Parkinson's Disease by Doreen Jones, Thee Thy Summer.

Margaret Hargreaves’ Be Patient includes the line ‘was a dressmaker’. There is a sense here that Margaret may no longer be who she was, or at least may feel she is no longer who she was. But it is not a sentimental, nostalgic, ‘when I was younger’ reverie. It is a lot more interesting than that. Here are skills and experience, here is something that makes the loss or impairment of capabilities with illness become more real. Here is something that is often hidden.

Anecdote. An elderly Muslim man in Trafford walking slowly around two parks supported on either side by two young women who appear to be his daughters. The sight is only striking because it is so unusual.

But this is to make assumptions. The assumption that ‘was a dressmaker’ refers to Margaret Hargreaves herself. The assumption of impairment through illness. The assumption that the women supporting the elderly man are his daughters. The only assumption for which there is any evidence is the first of these:

‘I call myself
a quiet person

was a dressmaker
if a stitch went wrong
I set it right
in two words, two small words’

But without knowing the author, and without knowing how the poem was put together it is a dangerous assumption to make. And even if it were a simple statement of fact about the author it only provides limited information. Many people could say ‘was a shop assistant’ and it would tell you precisely nothing about them.

Even so, this is a relatively straightforward poem in comparison to a poem like Doreen Jones’ Thee Thy Summer, which is much more fragmented. Thoughts are abandoned partway through, broken into fragments, and revisited later. The kind of fractures recur throughout the collection. Numbers play a large role in the text, as if they are fixed points within a generalized confusion:

’21 x pills a day’

‘fell 4 x times’

‘7 in morning’

Some numbers, especially 21, recur in the poem. So too does 7. The poem itself is arranged in six stanzas of seven lines in pairs across three columns, which might be read as three sonnets. But there is an ambiguity introduced by fragmenting the poem that means the poem need not be read down each column in turn running left to right. It is also possible to read each line across the columns, or the first stanza of each column in turn. Both of these reading give a poem in two halves of 21 lines each.

The first stanza gives a good sense of how the poem is constructed, and contains words and phrases that recur in the rest of the poem:

’21 x pills a day
make sweet thy beauty
parkinson’s you see
started vertigo
dizzy all the while
fell 4 x times = smashed face
started parkinson’s’

’21’, ‘make sweet’, ‘thy beauty’, ‘parkinson’s you see’, ‘started’, ‘vertigo’, and ‘parkinson’s’ all appear again. Even while broken into pieces the poem circles itself, its own areas of concern, giving it a unity and coherence it might initially seem to lack.

This does not seem designed to imitate any particular mental confusion so much as it feels like an act of resistance. Illness is defined more by medication than by symptoms, and both are an inconvenience. And here and there some aspect of a person (the subject of the poem? the author?) keeps slipping out. This is not loss but an ongoing negotiation with life and illness.

From the four sections I have read this idea of an ongoing negotiation with life and illness is a consistent theme throughout the book. For me this allows for a far greater human interaction and identification with the experiences of the authors than some sentimental veneration of their wisdom and remembrance of things past. To acknowledge the frustrations, pain, anger and limitations of age-related illness is surely more healthy than a vague sympathy. It does not make for a comfortable read, and the poetry is not instantly recognizable as the personal reminiscence and anecdote in conventional forms you might expect from a project of this nature. To my mind this is a good thing. It is more interesting and compelling for the reader.

It would be interesting to know whether the experience of creating the book was more satisfying for the participants than just writing a set of conventional personal reminiscences. Certainly one of my initial thoughts in response to being approached to comment on the book was that experimental approaches, being less codified, less familiar, might be more accessible than more conventional poetry. We all have an idea of what conventional poetry should look like, and that it has a number of rules that we do not understand. These preexisting ideas can limit what we feel is possible, and therefore what we ultimately produce. Whatever the truth, the more experimental approach has led to a book you are actually likely to read and return to, rather than pick up out of sympathy and never open again.


Matt Dalby is an experimental poet whose works take shape within multiple approaches and mediums, including sound and visual making. His blog Santiago's Dead Wasp is a key journal of experimental writing and related events in the North West of England, as well as a document of Matt's ongoing project. His extraordinary communal Mutapoem is world-embracing.

Caring and dementia

Anne Sadler and Anne Parry interviewed at Bluebell Ward Dementia Day Centre, The Meadows, Stockport, 2009

Ann Parry

Our job? Making life a little better, making it fun.

Anne Sadler

Treating people as you’d wish yourself or yours to be treated – as individuals. People aren’t a condition, it’s individualised for all of us. As health professionals we are in a privileged position to be with these people. Carers are often talked about as the ones who have to give their personal lives, their time, their caring, and so on. But the flipside is what we get from it- we get people’s histories, lives, wisdom.

Ann

We also get their trust. Making them feel wanted, because they might feel they don’t fit in anymore and they need reassurance. We can give that, among other things. You feel better about yourself because you have given something. I’ve never wanted praise, just that the patient feels settled and enjoys the group. If I can give that, I feel better.

Anne

You might not be having a great day, but if you catch glimpses of people, it brings you back to where you are and what you’re doing. It grounds you.

Ann

What we’re doing is caring for someone. We give life. We give choices, so they can make their mind up about things. We give them our attention.

Anne

Compassion fatigue can happen, I’ve seen it. The only thing I hope for is that if I burn out that I’m able to realise, because that is the time that I give up this job. If your compassion goes, you should go. A partner can lose compassion. They have to deal with it night and day, but we can go home at the end of the shift.

Anne

We try to keep sight of the fact that these people are made up of their own lives, which they can articulate and feel, despite the dementias. We need to keep listening, maybe listening more intently to people who are unwell. I liken it to day-to-day conversations where I will listen with half an ear. At work it’s very important that I give my full attention, truly listening.

Ann

Otherwise you make assumptions and they get frustrated.

Anne

The way people behave is explained partly by knowing their history, it helps you piece together what they’re saying now. I remember 30 years ago in residential care a lady with fists clenched, shouting. It didn’t make sense at first, but then it transpired that she was bothered about something that had happened from years gone by. That was the essence of it.

People cope with dementias the same way that people cope with physical issues. They get the strength from somewhere, faced with any illness.

Ann

With dementia, as with any illness there’s some who fight and some give in. Some want to be looked after, dependent. If the carer is fed up and doesn’t want to give care then these people have problems.

In the poem written in the workshop I liked the image of dementia being a bit like getting off a bus in the rain and not being able to tell where you are.

Anne

I like images of dementia to be more than just confusion. I like them to be lighter and brighter, that it isn’t all a dark journey. That’s what I’d like to get across to the general public. TV images of dementia as sadness I don’t agree with. You always get this awful chamber music and shots of gravestones. There is happiness too. It’s not all the time, but it is there. And are any of us happy all the time? No!

If we can help channel the happiness – and the anger too - that’s our job. If we can take some of the anger it helps them. It’s not always pleasant, but it isn’t about us it’s about them. There’s a balance to be struck and people who attend as staff are aware of this. People’s emotions change as their illnesses progress. Some kind be insightful at times which can bring comfort, but at times can make them angry. “Why me?”

Ann

In the early stages a dementia can be awful, especially in young onset. People giving up jobs, big effect on the family.

Anne

Part of our job is to help people with that understanding. People can be angry, seem nasty, threatened. But it’s up to us to look beyond that. When I do home visits, very often it’s my job to help them maintain independence, not to take it. People worry about independence going.

When we talk about independence going, we often talk about this big whole. But there’s fractions of independence and they are important, little flags of independence. So for example, self-care might be very important to one person and not to someone else. Social independence – just the ability to socialise – can keep people going. If you chat to someone, that’s your choice and you’re exercising independence. A lot of it comes down to choice. It’s the same with our help. If we explain what we are doing and they give assent, then they are still showing a sign of independence.

Interview with Ian Clark, Healthcare Assistant

Cherry Tree Hospital, Stockport

Every morning I come in – and I’m the first person the patients see. I try to make sure it’s a friendly start. I’d hate to be woken with someone giving orders: “Wake up! Get showered!” People are poorly, frail, elderly, sometimes they’re forgetful, sometimes they’re not good at speaking… I always say: “I’ll give you 5-10 minutes to wake yourself.” It makes all the difference, a big smile, the expression on a face.

I ask them how they’re doing and I also check with the other staff to see how the patient is. Certain patients never get a good night’s sleep, they only sleep well in their own room. Here they’re out of their house, out of their routine, it’s totally alien.

Whatever help I give to patients, I ask myself first, “Would I like this situation?” I put myself in their shoes, it’s commonsense. People here are frail and you’ve got to support them all the time, keep asking them if they’re OK. My last shift was 12 hours and it was difficult, it drains you, all the little things. But you’ve got to give everyone the same care, it’s what they deserve. I think of my mum and dad and I hope they’d get good care. I hope someone looks after me when I’m in that situation.

From a patient’s point-of-view, hospital can be very frustrating. They’re hanging on for someone to take them to the toilet, for instance. It’s humbling. They might get in a mood and it can last all day. To change from independence to asking permission is confusing for people. Yes, some independence is lost, but we’re actually trying to help. Some folks look at us as if we’re the enemy and I have to reassure them WE ARE HERE FOR YOU.

Who copes best? Patients who have visitors seem better; they have something to talk about. Those who don’t get visits – well, it must feel heart-breaking, it’s going to play on the mind. A man here, he gets irate seeing others having visits. It’s doubly isolating because he won’t speak about it to us. If I’ve got a spare 10 minutes, I take people outside into the hospital gardens.

At the end of the day, it’s good to see them tucked up and safe. You can tell they’re happy and content. I can go home without worrying about them, knowing I’ve done a good job. Then if the patient’s better and they get back their own lives – all that effort and patience was worth it in the end.

Stepping Hill Hospital at Night (after Vosnesensky)

coughing at night

other breathing at night

people tend

droning to sleep

quietly

nurses’

footsteps

low light faces

the television

an adventure

of dark blue glass

constant

quiet breath engine

in their beds

three or four

calmed

safe



people

moving that’s the thing

I want to hear

people

X-ray photos of the soul

lonely

speak to me with dark tongues

lone

night

yawning




Ralph Starmer and Keith Philips

Stepping Hill

parachute landing in jungle terrain

I’ve seen me whack
done me jumps
floating down Egypt Cyprus Malaya

that tattoo says in memory of Mitch
killed in Malay jungles
a tattoo that hurt me
I’ve killed and I’m not proud of it
(or they’d kill you
prisoner of war – whatcha gonna do?)

ever tried to pack a parachute?
bloody handfuls
like trying to get a bed into a pillow

they won’t let me out of here
told me straight I’m not for getting out
driven to die
very very very very
bored in the brain
so bored it’s ridiculous
bored to the ears

these wards are in lost time

landing in jungle terrain
we laugh
butterflies

what’ll we do after the war?
lost a lot of weight
don’t know if I’ll get a visitor
my wife died and I didn’t go to the funeral
I’d jump
to go as I want
even prisoners are allowed to
walk to the great door

parachute regiment I’d jump again tomorrow
you worry til it cracks out
cracks out open and you’re floating

down
down
down

Albert Burrows
Cherry Tree
2007

football

stanley matthews georgie best nobby stiles sammy much roger byrnes busby babes in packs in a set players 10 or 20 cigarettes on the back their age height history wifeswaps then in germany in munich early morn the takeoff

I do as best I can I do the journey from here to there is no different to any other journey more’s the difficulty is keeping your friends cos you cant get out the wheelchair

known as the munich crash the ground frosted fog photos of them on the runway matt busby sandy busby the son (good at spending money) when they emerged the babes were near unbeatable on £15 a week put edwards on he could cream the lot dog them clobber them sort em out

you cant get out the wheelchair and start getting angry telling the fellow where you want to go well lets say it does make you feel you’re not getting anywhere it’s just a question of administration

stanley matthews turned up at 8 in the morning running barefoot feels free blackpool sands (soak your feet in cold water you’ll walk a million miles) georgie best kidded the goalie banged it a brilliant shot but he done himself in daily brandy-soaked

you feel limited in the weight of this you’re not designing the journey the other person is I was an apprentice pro blackpool fc loved every minute gave back every penny

the footballs were heavier then leather soaked in rain describe a great god the best he was a tippler of everything two or three wives he had so many women over the weekend hundreds seen him train in the park a dangerous man a danger

you’ve got to be determined to stay alive otherwise this world will see you off falling into chaos somebody needs to mop the world up nurse sort the ends out I’m sat in a chair thinking literature I cant express

re-match: duncan edward he was only 19 in munich on the runway play was awhile ago you’ll hear them you’ll hear them a mile away no problem just a trick of the foot.

Allan Whittaker, Frank Wigley

Cherry Tree Hospital

2007

Coming into

Coming into hospital for the fifth time

coming into hospital for the fifth

hate to think of so many times

it’s a desperate thought

I don’t want to think it

get on and forget sadness

get on with it and remember only the

forget

who you’ve been with

where you’ve been you’re not yourself

I’m so glad that they come

I’m so glad that they come

I can’t say how often but they do

it’s action for yourself

to see someone

to see some with the same

perhaps the same difficulties

you are not alone

there are many people like you for better or worse

there are many people who like you

good people there are many

friends of myself friends of I

saw

my place

sat in my chair

saw my place sat in my chair

I can see so much from here

I wish

good

I can see I can hear.

Mary Arrandale

Stepping Hill Hospital

Yearby yearning

In the mirror I see a reflection in the glass
Looking growing yearby yearning
Time goes by

Time passing yearby year
Flowers slowly
Life suddenly

In the mirror
I see a reflection in the glass

Getting sad and old
Life slowly gone
Time passing
Suddenly tears have past

Eyes blue grey
Pale and small
Getting bluer
Going blind

My memory
Now my voice
Learning to talk + remember

Not sure I believe in angels
Maybe life could start again
Perhaps?

Summer sun
Growing yearby
Sand rain marred seeds growing
Ending
Growing

In the mirror
I see a reflection in the glass

Ending
Growing





Pauline Eaton
Oct 2006

photo copyright Lois Blackburn 2006

Sitting looking out

sitting looking out
the windowaiting
for them to come
hurry up
hurry up
minutes
hours
days
it seems
forever





Pauleen Eaton

a robin red breast

A robin red breast
in a cage


Harry Wantling
2008

part of the Brackenhurst Collection

starcrossd

what time is it?

it is she may ring by every star

she may not forever now

*

at home rather know

than feel and fell

pain it’s getting better

lovers tell

*

my daughter may ring

waitinghome and fellwaiting

*

someone came to me

saw me when

I fell

*

waiting for my daughter

what time is it?

it is she may ring by every star

she may not forever now

Anon
8 July 2009

Half the river and all the way up to the sea

It's a commonplace to say you can be lonely in a crowd, but crowded hospitals incubate some particular strains of loneliness. This morning was spent sitting around the table in Ward 5 at Cherry Tree Hospital, with Nora, Dorothy, Leila, Helen and Hilda, trying to put a finger on what hospital loneliness is.

The very fact that we were gathered around a table was an issue. As Leila said, "To talk, you need a table to sit round." Chatting over cups of tea, taking turns with the conversation, is much easier with a table as meeting place. Unfortunately, many wards - especially some of the modern builds - have tiny day rooms and no large communal spaces. People can spend weeks sitting by their beds, in rows, cut off from close contact with one another.

The uncertainty of ill health is another factor. Not only might you be physically at a low ebb, medicated, and moved from ward to ward - but uncertainty as a continued state erodes confidence. As Dorothy said: "It's the general setup of it all, and then you don't know what you've got to face. Waiting to see what's going to happen. You're not as outgoing if you've got something on your mind, worry. This thing, it's happening to you, no one else but you. So you feel alone. Swimming half the river and all the way up to the sea."

Language is of course another problem. We are beseiged by misunderstanding. Whether we simply don't have the words, or the words have been taken away from us (by a stroke, medication, tiredness, dementia) it is a difficult thing to reach a happy meeting with these sounds we make. Just before I started the session, I spent a little time with a woman whose stroke had taken most of her speech, she spoke instead with smiles and hand pressure, and with her eyes. Leila's first language is not English and so a different set of problems appears. The word for loneliness in Polish is samonsc.

And what to do about loneliness? Helen: "Think of your close people. I would do that, after all they're the ones you really love."

Norma: "I approach people and ask them 'Would you like to talk?' People often say yes, they're pleased to know me. If you don't talk to em they think your too posh for them!"

Dorothy: "Every day is a little different - it can change sometimes for the good."

We discussed the photographs that people have by their beds. Norma again: "Bring a photograph of people you love - then you're near to them. You feel you're with them and they feel the same."

And what would a picture of loneliness be, I wondered?

Dorothy: "Empty!"

Interview: The Director of Public Health

In June, Phil and I had a fascinating, insightful interview with Dr Stephen Watkins, the Director of Public health for Stockport PCT. We discussed the independence of older people, dependency, care and control, choice, being a carer, social roles and patience....

Dr Stephen Watkins
Interview
8th June 2009

There is a gap between healthy life and life expectancy – and that gap is what we must reduce. It’s important that we narrow the gap to delay the onset of dependency, so that people enjoy life longer.

About a year ago I began to find that my right ankle was stiffening. It became difficult going up hills. I told my wife: ‘I feel like an old man.’ I went to a physio, who recognised some restricted movement at the site of an old fracture. She said: do exercises and force through the pain. I followed that advice and have been fine, although I’m slower uphill. Now, if I had been of the mindset that says ‘You’re 58, your life is ending’ I would’ve stopped going up hills. And then gradually I would have stopped walking altogether – a downward spiral.

We need to fight off the expectation of dependency. People have a right to care and will be dependent to a point, but we also have to accept people living with a degree of risk. We don’t stop the young climbing mountains – we must also trust the choices of old people.

This is the difference between care and control. Even when people have accepted a state of dependency they don’t have to lose all choice. You mustn’t become dependent before you really need to – and also when you are dependent, you still should be allowed to make choices, be trusted to take risks.

There needs to be policy that supports this, that recognises there’s a duty of care, but no right to force care on people. These are patients’ rights. In the case of allowing risk, the nature of that decision needs to be recorded. It must be shown that an individual was allowed to make a choice and that there wasn’t negligence, just the allowing of choice. It isn’t actually caring for someone to take away their choice, for instance taking them out of the environment they want to be in.

Being a carer can have a devastating effect on people. Often a carer can become as damaged as the person they are looking after. Sometimes you wonder if it wouldn’t be better if they weren’t caring – if they were able to just visit and be a supporter, friend, advocate. Better that than being trapped in a situation where all the opportunity for loving interaction is gone. Who benefits from that?

These are very personal things, affected by people’s individuality. I’m sure there are carers who would offer support, even if their independence is devastated. But it’s important for statutory bodies to realise that these people need support and can be neglected. This is especially the case in caring for sufferers of dementia who cease to be the person they were. Then the carer is grieving that loss alongside the stresses of the care. I’d like to see more support for carers but there’s a resource issue. That’s why it’s important life expectancy grows, but healthy life grows even more and so the dependency group gets smaller.

That gap isn’t understood. The assumption is that the number of dependent elderly is getting bigger, but this is based on a misunderstanding. The first time the population aged dramatically was when the last generation of large families came of age. Previously there had been high infant mortality so people had large families to compensate. With improvements in medical help the babies lived, but people didn’t change their behaviour and that cohort of unmarried women (the men died in the First World War) created the first ageing population in the UK at the end of the 20th Century. Predominantly female, dependent. People needing care increased because it was a particular demographic with certain needs. People gained a sense that this is what having an elderly population means. But the gender balance has changed, the older men have not been in a war, they’ve faced less occupational danger. People are living to be older, happier, which raises the possibility of narrowing gap. The pension crisis remains but the care crisis doesn’t have to.

The maths is very striking. If healthy life expectancy is 60 and life expectancy 70, then one seventh of the population will be dependent. If healthy life expectancy is say 85 and life expectancy is 90 then dependency drops to one in eighteen. It is absolutely affected by what people do in their 50s, 60s, 70s – we have to get to the people who would’ve stopped walking when faced with my bad ankle. That’s the beginning of dependency.

We need new social roles. At present there’s no protection against unfair dismissal over 65. Things like this undermine the social vision we have to have if we are going to deal with having an ageing population. We have to have a healthy ageing strategy as an economic necessity.

We need patience in public health, because it takes people so long to listen to us. Churchill said the American government will always do the right thing but only first trying every other option. Reactions to public health advice sometimes seem a bit like that. How long did it take to get the ban on smoking? We are very accustomed to patience. Ultimately the health of the people is such a powerful social value that it will in the end prevail.

shut in now

shut in now
to feel free
just want to jump
in


anon
recycled postcard, pen, glue
2009

Made in collaboration with arthur+martha guest artist Anneke Kuipers.

One in five people over 65 are alone for more than 12 hours a day

"Britain’s older people are living in isolation‚ with those over the age of 65 twice as likely as other age groups to spend over 21 hours of the day alone.

The NOP survey of 1‚000 people found that one in five people over 65 spend more than 12 hours of every day on their own. These people are more at risk of depression and ill-health caused by isolation and loneliness.

More than a quarter of people over 65 do not have a best friend‚ which is higher than any other age group. A third of people over 65 see their local supermarket as somewhere to socialise and get out of the house and one in five people eat their meals there rather than at home." http://www.ageconcern.org.uk

importance

Hallucinations, mainly of a visual nature, are considered to affect about one-quarter of patients with Parkinson's disease. They are commonly viewed as a side-effect of antiparkinsonian treatment, but other factors may be involved.' 'BRAIN a Journal of Neurology' http://brain.oxfordjournals.org/

importance

a box of chocolates
a little boy running back
down the ward
to say goodbye to grandfather
remembrance

(in here it’s)

waiting, all this waiting
captured, a refugee, loss of furniture, loss of house
you can’t make a bed a home
I don’t want to be unconscious
in their presence

(in here it’s nice)

hallucinations come with the pills
enjoy them, visitors are medicine
taking the mind to some other place
if you don’t have a dream
you’ll never have a dream come true

(in here, it’s nice a little)

uncertainty is my home
a lost person, a dispossessed person
you don’t feel the bed is yours
I’m interested in life
I’m having to change my life

(in here it’s nice, a little bit, but)

waiting to die it seems
spend the day getting the button right
getting the zip right
learning to
walk


Raymond West and Mary Mitchell
11 June 2009