PATIENCE (press release)

“There were times when I was reading this book that the hairs on the back of my neck stood on end and I felt my eyes prick with tears.”

(Fiona Roscoe, Advanced Nurse Practitioner)

A new book of experimental art and poetry by older people in hospital will help patients cope with illness and is being promoted as part of nurse training. 

PATIENCE is an account of the emotional rollercoaster of illness. The poems and artworks are by patients who are sometimes in the process of recovery, sometimes coming to terms with dying. The book trials experimental ways of working that haven’t been used in hospital arts, in a bid to get closer to the genuine voice of patients. 

Poet Philip Davenport explained: “We hope PATIENCE will help people deal with the journey through illness. The poems and artworks were made using cutup techniques, blending text and art, which allowed people to make delicate, tangential work that reflected their physical state. There’s a lot of humour and acceptance in the pieces. The idea is that PATIENCE will help people realise they’re not alone in illness, others have been there too.”

“We have put copies of the book on the wards for people to see. But the workshops were a tonic in themselves, the act of making something creative helps patients deal with illness, bringing respite. ”

“The end product is the joy you get from creating it…” (David, patient)

“Writing helps – ever since my stroke it helps me to spell – gets my brain working. Sometimes I get a bit down and I say to myself: come on you silly monkey, get writing. Do something.” (Joyce, patient)

PATIENCE was compiled from workshops and interviews with people in healthcare in the North West of England by arts organisation arthur+martha, in a Lottery-funded project. Threading between the art and poems are interviews with nurses, doctors and carers. The book becomes a cross-section of hospital life, using artworks, photographs (many are snapshots taken by patients of the view from their bed) poems, discussion. There are forewords by poet Carol Watts and psychiatrist Francis Creed; renowned American poet Robert Grenier wrote the ‘afterwards’.  

"The crossover between image and word is what makes this book unique - someone's shaky handwriting, or their face, or an object they've labelled - they are the fingerprints of real life. These little indications of frailty are very moving, " commented Artist Lois Blackburn from arthur+martha. “We encountered amazing determination, humour and kindness in hospital amongst patients and staff. People dealing with dementia, depression, diabetes, strokes... We met the experts in treating these illnesses and the sufferers, who in their own way are also experts. Their insights are important to pass on; they teach us how to live in our bodies gracefully as we age.” 

As well as being a tool for the wards, the book is being promoted as an adjunct for nurse training, giving student nurses a unique opportunity to understand and empathise with the point-of-view of older patients. The book is also available to the general public as an artful object in itself - a moment of peace in the midst of panic, a meditation on a rollercoaster. 

PATIENCE 129pp hardback, full colour ISBN 978-0-9539367-8-6 retails at £24.99 and is currently available from Amazon at: 

http://www.amazon.co.uk/

a must to read

Patience

Patience is a book which captures patients’ experiences and stories of staff on the wards in a very creative way. It shows how every patient is different and how everybody has a different view on their stay in hospital and their life in general.

The artists did an amazing job in engaging with people in a variety of ways meeting people’s interests and abilities e.g. by putting prescription messages for happiness on pharmaceutical packages, writing poems, making pictures of people’s views on their hospital stay and by designing personal postcards.

All pages in the book contain touching messages, give great insights and are often humorous too. It is an impressive piece of collaborative art describing something so common as a stay in hospital, which could also be sometimes frightening and frustrating, from a human perspective.

Patience is an excellent book to look through, to read, to talk about and to reflect upon. It is a must to read for everybody wanting to deliver personalised and dignified care.

A big thank you to all people who contributed and shared their experiences and wisdom and to Lois and Phillip for capturing these valuable messages!

Nicole Alkemade

Older People’s Joint Commissioning Manager

NHS Stockport

Strength of Steel

Saturday, we held the launch of Patience at Stepping Hill Hospital. Coinciding with the Stepping Hill Open Day, we had a great mix of staff, patients and the general public view our book. 

I took advantage of being next to the cake stall, and my whole family benefited from the fantastic chocolate roulade.  What I found most inspiring was the tireless work of the volunteers, what a fantastic bunch.

We got some more wonderful feedback to the Patience book. A retired teacher visiting the hospital, was excited by the book one particular artwork caught her attention,  Lost my Independence:

"The Spiral, the strength of steel, your mind is unwinding- like steel, gradually unwinding, from one side to another,  thats how I see it- that would express everything to me." Sylvia Piggott. 

Book Launch at Stepping Hill Hospital

We are pleased to announce that we will be launching our book PATIENCE, at Stepping Hill Hospital during their Open Day, Saturday 25th September,  between 12 pm. and 4.00 pm. During the afternoon, we will be based at E1, the Stroke Unit. You can find out more about the open day by visiting http://www.stockporthealth.nwest.nhs.uk/

schools of nursing

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

The stark honesty and desperation expressed by a stroke patient in 'Ever' provides a frightening insight into her world. I would advocate that schools of nursing examine their curriculums and ensure that students are given an opportunity to experience the art produced from this project as stopping to listen to what patients are telling us is key to knowing what needs to be done to help them.

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

ever

a stroke: it’s like freezing a piece of meat

waiting and waiting and waiting and waiting
a cancellation
put me back again
a slight stroke
couldn’t move my arm
so I lift it with the other one
don’t let it lie dead
rub the back of your hand
keep it going

and then it’s un-frozen

waiting and
try to keep moving
haul yourself
with a walking stick
to your exercises
tried, tired and knackered
they train you, so
if you fall in the house by yourself
trapped

but only in part and some remains

waiting and
trying to open the door
try to get to the phone
try to climb a step, up four inches
(one bad leg, two arms, nothing 100%)
terrifying thinking about it
don’t think, try to
get on, to stand

on ice.

Anonymous
24-31 July 2009

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

Images of Patience

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

Beautiful thought provoking images which could easily stand alone as large portraits or pieces of art. They belong on the walls of hospital waiting rooms, nursing home entrance halls, nursing and medical school refectories. Wherever somebody may pause before moving on to carry out their purpose, be this visiting an elderly relative, submitting an assignment or explaining to a patient that he cannot be discharged because he will not be safe on his own at home.
 

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

2 photos of Violet Gamble © Lois Blackburn 2009

WARD D3

Poet Steve Waling writes about visiting his mother in hospital. This piece was sent to us by Steve in reponse to PATIENCE, our collection of poetry and artworks by older people in hospital.

a bundle of sticks /// writhes on a bed
it’s hard to believe in God /// are there any crackers
mum you’re in hospital /// oh I forgot
visiting hours /// are between 6 and 8

but now you’re here /// are there any crackers
close the curtains /// is there a party next door
pull the sheet back over her /// oh I forgot
ambulance siren /// like a startled cat

it’s the delivery suite /// what’s all that banging
dissociated as to place /// acute serious infection
but now you’re here /// it’s hard to believe in
nurse wipes down plastic mattress /// when there’s such

I saw rabbits on the lawn /// I’m hungry
they should bite the bullet /// just get on with it
she tries to climb out of a sheet /// a bundle of sticks
close the curtains /// are there any crackers

the eyes don’t connect /// no but there’s chocolate
disoriented as to place /// I’ll have some of that
see God in mother’s face /// like a startled cat
is there a party next door /// oh I forgot

Steve Waling's book Travelator is published by Salt. Steve teaches creative writing, occasionally in prisons, and reads his poems in public at any given opportunity. His poems might be described as gentle experiments in intimacy, sometimes awkward and always without pretension. He writes the blog Brando's Hat.

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.

Reading PATIENCE - by Scott Thurston

The first copies of PATIENCE, our collection of art and poetry by older people in hospital, are about to be delivered to us. It's a book that's taken much labour and considerable love, so we are in a state of anticipation. Various poets, artists, medical practitioners and (most importantly) patients have very kindly made responses to the book and we will post these on the blog over the next weeks. Scott Thurston at Salford University wrote an overview piece, taking up themes and questions raised in PATIENCE. We felt that Scott's sensitive and insightful essay would be a good way into the debate...PATIENCE

‘take pills like new ideas’
(acceptance, chpt 5)

This latest offering from arthur + martha is a collection of poetry, text and artworks based on older people’s experiences of ill-health and hospitalisation. Divided into five parts, its structure is based on the five stages of the ‘cycle of grief’: denial, anger, bargaining, depression and acceptance. What is remarkable about a+m’s approach is that they use a whole host of techniques associated with innovative and experimental writing in order to frame people’s experiences. The results are simply extraordinary. In these works, the notion of writing and creativity as ‘therapeutic’ does not do justice to the seriousness and the ambition of the project, which is experimental in the truest sense. The diversity of the approach is key. In one strand of the project, creative work emerges from the charged objects of the everyday: medicine boxes getting a makeover by acquiring new labels like ‘take one glass of sunshine a day with water’ or ‘all’s well that ends well’ – the latter on medication for trapped wind relief! In another strand, it is postcards – pictures of famous buildings cut out and stuck on the reverse, creating a new space for words – in another (‘Lost and Found’), text is appended to actual objects – poignantly the label ‘Lost – your husband or your wife’ is attached to a tiny, empty chair.

Aside from these text-objects, there are many poems in the book – some co-authored and often produced using collage and/or cut-up techniques. Ron Miles’ ‘The Old Grenadiers’ is a particularly effective poem which opens:
'you’re 96 years
thy image
an old Grenadier'
(anger, chpt 2)

A stoic meditation on ageing, Miles’ narrator has ‘pain’s / red medal round my neck’ but is still able to conclude: ‘though new-fangled ill / this old dog’s prouder still.’ Elsewhere, Allan Whittaker and Frank Wigley offer a collaborative work, juxtaposing accounts of football history with a patient’s current predicament in a poem called ‘Football’ which is shaped like one on the page. Thus the story of the Busby Babes and their fate in the 1958 Munich air crash leads to some striking reflections:
'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 nurse sort the ends out I’m sat in a
chair thinking literature I cant express god’s fire in the head'
(bargaining, chpt 3)

What is most impressive here is how the innovative techniques employed lead to a genuine creative opportunity. These poems show that an approach to creativity that recognises and utilises language’s physicality and malleability, immediately makes a connection between body and art object. By bringing creative practice closer to embodied experience, and breaking habits – of thought, of feeling, of experiencing – along the way, it is clear that these authors find new ways to express complex physical states that might be hard, or impossible, to achieve by other means. Illustrative of this, a group poem entitled ‘Now My Genius is Gone’ mourns the loss of creative autonomy but simultaneously finds the means for its recovery:
now my genius is some worthless song
I use a lever a little
and it comes back.'
(bargaining, chpt 4)

The personal empowerment resulting from this approach is testified to over and over again in these pages. Another group poem, entitled ‘A Kingdom’ argues ‘a body case / can’t case your mind’ and identifies the meaning behind the central pun of the title:
'when you’re in pain
teaches you something
teaches patience'
(acceptance, chpt 5)

Raymond West, the author of two excellent poems in the book, also comes out fighting in ‘Overcome’:

'have a bout with life
live to the full
with
an incurable disease'
(acceptance, chpt 5)

There is much more to admire in this beautifully-produced book: terrific photographs of the authors – including an impressive double portrait of Violet Gamble – and a series of text-images entitled ‘our needs are very small’ which link writing with images of wards. There are also several highly informative interview-articles from the perspective of various practitioners – care assistants, nursing sisters, a diabetic nurse, medical directors – offering insightful reflections on their experiences alongside more detailed accounts of working with dementia, Alzheimer’s and Parkinson’s.

A key message emerges in this book about trust – not only the trust to be won by care practitioners and creative workers such as arthur + martha, and to which end their creative strategies are invaluable – but also the trust to be granted to those older people in care contexts. As Stephen Watkins argues, the expectation of dependency that many of us have is one to be resisted, otherwise care can too often slide into control. As Watkins puts it:
'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.'
(bargaining, chpt 3)

It is clear from the breadth and verve of the work of this book, that a trust in risk-taking has been fully embraced by everyone involved – in this way fulfilling the experimental essence of creativity.

Dr Scott Thurston

Scott Thurston lectures at the University of Salford where he runs a Masters in Innovative and Experimental Creative Writing. He co-runs The Other Room reading series in Manchester, edits The Radiator, a little magazine of poetics, and co-edits The Journal of British and Irish Innovative Poetry with Robert Sheppard. He has published three collections with Shearsman.

Masterful inactivity

Professor Francis Creed, Psychiatrist.

Interview about the PATIENCE book- by Lois Blackburn and Philip Davenport

There are two things I’d say about context for this book. You’ve likened the experience of illness to the experience of grief. There’s a well-recognised literature on adjustment to illness which parallels that on grief. Hackett in USA described how people recovering from a heart attack showed denial, anger, guilt, and then acceptance at different stages of their recovery. He was concerned with those people stuck in the early stages of denial, or guilt and anger or non-acceptance.

Much of my work is seeing people who are trying to cope with physical illness but have not reached a reasonable state of acceptance. There’s a lot of grief associated with physical illness and the loss of ability to do this or that. PATIENCE illustrates ways of coping. People joke, or relate their experience to someone else’s, sharing the difficulties of being ill, taking the pills and the straitjacket of drug regimes.

40 years ago Colin Murray Parkes did a study following 50 women who’d been widowed. People who were themselves grieving were shown this material and said that it helped them simply to read about others’ experiences. Sometimes a pure description of what other people go through is really helpful, without analysis. These things don’t really need to be put into a theoretical context to be helpful.

I’ve worked many years as a psychiatrist in a general hospital and patients who have difficulty coping with progressive illness are a major part of my work. Denial can sometimes be very difficult.. When a person has such great difficulty adjusting to illness confrontation is unlikely to be unhelpful but the right environment can facilitate adjustment.

I saw a very difficult case when I was at the beginning of my career, a woman who couldn’t face dying and who was causing enormous difficulties in the hospital ward, she was so upset, shouting at others, refusing her medication and blaming staff for her problem. But moving into a hospice helped her come to terms with the seriousness of her illness. It was socially acceptable to express the upset of facing death there; others faced the same difficulty. In this setting she became much calmer and ceased to shout, although she was still very upset.. This illustrates how the environment is important in helping someone to deal with where they are at, to accept disability or even forthcoming death.

The care assistant who starts your book is a shining example of care, which is probably more common than people think. He describes taking patients out for a walk, but I bet he means he also talks with them. To be able to talk about a problem is immeasurably important in being able to cope. A problem shared is a problem halved. Much of what I do is providing space to talk safely about the unsafe topics.

I guess some of your work does that too. For instance, the Parkinson’s disease poem does it, talking about difficult things to pin down. Touching on humour, or despair in a poem or whatever emotions are around – that’s why some of the poems are very good. I liked the pill box labelled TAKE TWO, the double-meaning is nice. Take two tablets, but also this is take two, a piece of music, a performance re-starting. Humour is a well-recognised way of dealing with illness.

Some people would be surprised and disarmed by their own emotional reactions to illness. Your artist might not understand where the anger in some of the pieces comes from.

Hospitals are focussed on physical illness, but in hospital on an acute ward people don’t tend to explore emotions. Some doctors and nurses aren’t inclined to open that Pandora’s Box, they are afraid it’ll take a lot of time and afraid that they can’t deal with the consequent emotions, someone breaking down in tears. However, if people are able to express what they feel, they tend to be much more satisfied with their care.

The art may be able to help people cope in this way, it’s a secondary addition which could have benefits. I don’t think it ‘fits’ in the usual medical routine but perhaps that’s a good thing. The primary activity in hospital is treating disease, treating the whole person is secondary. It’s because art doesn’t fit into routine hospital tasks that it potentially has enormous benefits. You’re tapping into the emotional part of being ill, as opposed to the physical. In hospital some staff don’t have the time to help people express emotional states; this book will open up other possible avenues of communication for some who are prepared to do that. It’s not art therapy, but it has therapeutic outcomes.

A project I was involved with helped people to cope with cancer. Sharing their concerns with a member of staff meant people could discuss ways of coping with them and this prevented depression. Now, the work you do as artists could help a lot because people’s emotional reactions to illness could be expressed. Why does it help? It might help because they’ve done something positive, gives them purpose in the day and satisfaction at the end of it. Producing something that someone admires. Might help because they’re working with other people to say or do something in a group, which counters isolation. It might be the way you deal with them as a person, with attributes that you can draw on. Inevitably, hospital staff are concerned with a patient’s symptoms and with their problems, but you talk to them about positives. These are all different ingredients that might be helpful.

This book helps people realise they’re not alone. What they find difficult may actually be normal. Others have difficulties with tablets, emotions, with disability. It’s the sharing, the I’m not alone.

Anger is a difficult emotion which may arise in the context of illness, the positive use of anger can help. Channel the anger. Channel the energy that goes with the anger to do or say something more positive. Don’t just say: ‘Why has this happened to me?’ Channel the anger. Let’s do X, or Y! Use your anger.

Getting old is to do with state of mind. Inevitably with older age you have limitations. When you get older attitude is important, the same as when suffering illness or grief. As life goes on your body changes, usually for the worse and you have to accept it. For us it is considered a kind of illness, but in Africa the older you are, the wiser you are seen to be. There are many good sides. The grandchildren like to play with us, to tease us, to spend time with us. Sit in a chair and tell a story. It’s attitude, it’s not related to age, state-of-mind is what we’re talking about. Grandparents have time. Where the parents can’t wait, the grandparents can.

The ability to wait, patience. The opposite of getting worked up because something’s not happening. The business of letting body and mind heal. Don’t do harm is a tenet of medicine. Masterful inactivity. What that means is it is sometimes best for the doctor to do nothing, to just wait and see. Surgeons are meant to be impatient, to get in and ‘cut’. Physicians give pills and await the consequences. It is joked that Psychiatrists are the most patient of all because their treatments work so slowly! Senior physicians do less for patients because they’ve seen it all before and are more prepared to let nature heal. Tablets have side effects, just need to wait not treat. If you wait, something might happen over which you have no control. Just sit and wait and see.

bear-baiting for the queen

the roaring of lions:
p ain
cuts my leg off
cuts the eleph ant’s trunk off
fullstop hyphen exclamation

the howling:
when you hear aaaaaaaaa
pain's hot horseshoe
spit on it just before the strike
it explodes raging

the raging sea:
look out at the
storm
there’s miles
between us

portions of eternity cry
you cry mainly
my wife going, going
(p ain de al with it your own way)
me in tears too great for the eye.

Anonymous

Body and spirit

Interview with Reverend Brenda Lowe and Reverend Philip Winn

BL: Patients have so much time in hospital, time to think what's important. They often worry about what is going to happen when they get back to their home, worry they don't have the resources: 'I want God to help, but I don't know how to pray.' What I believe is so deep-seated, it's difficult to explain and many patients have that faith, we share faith and they feel like family.

PW: We see the difference between people who have hope and those who don't. There's peace there. Witnessing death makes it more real. Most people don't see death that often, but working in hospital...we see suffering.

BL: The attitude: is this suffering a punishment? I'm not sure if that's faith. These are times when people question God. It can be very positive, an opportunity to bring healing. A lady who was ill said to me 'I'm feeling very cross with God today.' We all feel that sometimes. People get guilty about it and they don't need to. People in the past had an unhealthy fear of God wielding a big stick. That's not God.

A lot of elderly people are ready to go, particularly when they've been widowed, want to be together again. They're ready, the emptiness, the loneliness, is within them. Then there are people who are in denial that their relative is old. A women who was ninety-two, her daughter was saying, 'She's giving up.' But the woman was ninety-two! Sometimes the family find it hard to let go... I find it very moving when a couple - one of them is dying - and they're sat holding hands - that's what love is.

PW: We ask: 'Are you able to share this person's life with us?' It gives us a picture that's not just the frail person in front of us. Research says people have a better end, a more peaceful end, with faith - and yes that would be our experience. It's the hope, death has no fears. Can't say people aren't frightened of dying - most people are frightened of dying- but it's the journey people are frightened of, not death itself.

BL: It amazes me always, people in their last moment when we give them their last rites. They respond when maybe they haven't responded to anyone for weeks. I've had people say 'Amen', or open their eyes. People become peaceful after being agitated. This week I gave the last rites to a women with very sticky eyes, she opened her eyes as wide as a child with a chocolate bar.

Death can be a great release for families. We can help people through the journey of grief. Us being there for the families in all sorts of situations. Maybe the relative is just not wanting to leave the person whose just died, or is looking for someone to blame. We help families deal with the burden, it's not a joy, but we can help. We talk them through the 'if only, if only' that can torture them. I remember a woman who couldn't leave the deathbed because of the guilt. Our role is often simply to tell those who are left behind: 'What you did was generous and right.'

PW: We can only do our best. I don't think we can have regrets. We're good at talking about things between ourselves so they don't become burdens. We know we have to minister to the next person who needs us, and that person may just be another phone call away and we need to function, and give them our best.

BL: We're good at talking to each other and good with the kettle. We believe we have a power that helps us in difficult situations. We never know what we are going to find behind the curtain round a patient's bed. We don't know what we're going to face. Got to find strength, praying as you go.

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.

Palliative Care

Sister Debbie Smith interviewed

by Philip Davenport, at Bluebell Ward, The Meadows, Stockport, 2009.

Palliative is a very broad word: looking after someone when there is no longer a cure. Anything from two years to two days, a whole range. Palliation is based on care not cure – symptom control to let someone have the best quality of life. To me, it’s searching for the real person, trying to give them control of what’s happening. Their life is coming to an end. They need control if they know what’s happening and need to be given choices; if they don’t know it’s even more complex.

I chose to do this work 15 years ago. A holistic approach is the core - psychological, physical, spiritual – that’s the crux. People are not just a bag of symptoms or tests. Plus, they sit within a family and you talk about it all with an appropriate family member too.

What is a good death experience? In whose eyes, mine or the patient’s? You can make death appear comfy, distress-free, with drugs. But you can also go through this talking. It’s the patient’s experience, it’s their’s, their control. Yes there is such a thing as a good death, listen to what the patient wants. Perhaps my patient wants to go home. It’s not what I would want, but it’s good for him. His decision, his good death experience. Most people die in hospital, but they actually want to die at home and we should support that, recognise it. But the support needs to be there, the family need to be able to cope, or else it won’t be a good death because the family are left with the pain.

Giving a frame to the end of life, a plan of what to do. Providing for all sorts of needs. The end of life tools are important, planning is important. Liverpool Care Pathway is very good example. This area is improving all the time, money is going into it, people recognise it as an important part of care. We’ve all got to die.

This area is our speciality, this thin line between palliative care and long-term care, where you can still correct the correctable. We don’t think, “Oh they’ve gone palliative, we can’t treat them.” But we won’t go to the extremes of care they will in acute. Most people who come here have already gone through that system. We won’t go to the aggressive end of treatment because it’s upsetting to no good result. If someone’s got terminal cancer, say, we give comfort not cure.

It all depends on the patient. Often they don’t know they’re at the end of life, or they might not want to talk about it and you have to honour that. You reflect back, the patient takes the lead and you reflect back. They only go as far as they want, it’s very gentle. Are you the kind of person who likes all the details at once, or do you like a little, bit by bit? Most say the second. Explanation and listening are key. It’s the same with the relatives: “What do you know?” They might be anxious, frightened. They might not have been told much. Might’ve been told there’s more hope than there is. We actually have to tell the truth: “Your mum’s only got a few days.”

It’s definitely a journey, could’ve been going on for years. Many have had surgery, relapse, treatment, relapse, surgery, relapse. Then suddenly it all stops. We can only manage symptoms. Some people are very accepting, they don’t like it but they accept. Some people ask you to end it. Most talk openly to us about it, but they’re a bit more guarded with the families because they don’t want to upset them. We work closely with chaplains, volunteers, consultants – it’s a team effort. The staff can get upset too and we support each other.

We get sent ‘symptoms’ and we give them back their life for a time. We give them quality. They might have a few days when they can appreciate their family, their memories, their time. It depends on how you look on things; my cup is half full. At the end of life there’s a lot we can do. If it’s your last week of life and you sit out there with a cigarette and a beer, or you get to see your dog, you have a better life for that time.

It’s not all doom-gloom, we have a lot of fun here, a great atmosphere. There’s a man in here right now interested in perpetual motion and his wife’s brought all his stuff in, bolts and screws all over the floor. I don’t mind. People bring in takeaways. We had a bellydancer and one chap, his eyes nearly fell out of his head.

Communication keeps it all together. And it’s not what you say, but how. And it’s even more important what the patients say to you. Or what they don’t say; body language. Very often they lose eye contact if they’re scared. It’s opening a can of worms, but I always step in and talk about it.

Who copes? People who have had adversity – for instance, chaps in the war – people who have dealt with that cope. They seem to be more accepting. Sometimes people with a faith cope better. But beyond that, who can generalise? You’ve not dealt with this before, there’s no set rule. People who are well-informed and up to speed handle things better – they have control. If they can advance plan, they still feel it’s their life. People who have been kidded along or misled can’t get beyond anger and the whole thing is difficult to accept. More informed people have less damaging emotions to get over. Same with relatives, they don’t need to go through some collusion where no one talks about it, it’s more open.

There are myths about palliative care, that it must be miserable. It’s not, it’s an honour, a privilege. We have a lot of laughs, when it’s appropriate. I hope someone will be there for me like this, at the end of my life. There are a lot of myths about death itself, people think it’s scary, sinister, because we are a death-denying society. It’s denied, behind closed medical doors. People paint black pictures, but I think it’s becoming more open.

The right to die. I’m a member of Dignity – I think if you have an incurable illness, I think you should have a right to choose. Shouldn’t have to go to Switzerland or wherever. Also, that a family won’t get prosecuted. In Holland it’s physician assisted, in Switzerland people pick up the pill itself. But palliative care dying will create far less stress symptoms; someone can die with dignity if its done well, properly.

What have I learnt from all this? Can’t put it into words. What people have shown me is the fantastic dimensions to the human spirit. People never, ever cease to amaze me. It is a privilege to be there at someone’s death, and to do it properly you have got to give of yourself. It’s important to get it right. You only get one chance to do it right, or it stays with the relatives. Because the memory of those who have died lives on in us who are alive.