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/

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.

patient quotes

We're putting the finishing touches to our end of year report at the moment, here are some examples of quotes from the hospitals used in the report....

“If someone like you gives a bit of hello, it gets the day going on nicer… One thing leads to another with people, they’ve all a little tale to tell. They’re lonely. Time that’s the stumble-block. Do a bit of chit-chat in between and it brings things on a little.” Grace Smith

“People are substantially the same and culture is our local expression.” Louis Marks

“A book of hospital poetry (describing patients’ experiences)? I think the product would be of immense use to patients and doctors… to focus on something of this kind where arts and health are breaking out into new ground is fantastic.” (Dr Steve Watkins)

“Nice pictures, poems, stories from others - Yes! Useful for people who are just coming into hospital… What to expect if there’s a downfall and how to accept it before the up-fall comes.” (Doreen Jones)

“Poems and all – they help people. Sharing personal experience of people helps others.” (Marjorie Rayner)

“This is a miracle.” (Joyce Mack)

diphtheria

the ambulance bringing
ding a ling a ling

she can remember them ringing
them bells

it was one of the common ones
the cough
a sore throat easily contracted
diphtheria scarlet fever
five years old
the cloth stretching across the wall
my father raised a blade

the ambulance bringing

take swabs
of it the children terrified
isolation hospital
their faces
thought they’d be red
scarlet fever
diphtheria

ding a ling a ling

keeping them apart
lockjaw
didn’t talk
to em too scared
peered through a washroom window
one of the kids saw me said
I won’t tell
remember

them ringing the ambulance bringing
ding a ling a ling

them bells.

Dora Boulton, Frank Bryan, Olive Wilson
Cherry Tree 2009

constancy

hospital
a huge mountain between my
heart and tongue
ill-starred
not important
rubbish
brought here and left
a mountain
if I could pray
prayers would move me

***

Fellows in the Firmament!
it is up to you to get right
down to you, getting better
(***
certainly is
***)
to be helpful with those helping you
determination will make a difference
to be very patient
is a difficult art
you’re not born such
constantly
learning
you get old
as the northern star.

Anonymous
11 September 2009

Little tree

December 4^th and a Christmas poetry session that would not be complete without E E Cummings Little tree. It was nice to see the marked progress of the E1 group, Tom had gone home, Joyce was able to say certain words, Victor was much more able and we had two new participants Philip who could not hear and Joan who liked to sleep. We constructed poems of Christmas feelings past and present and looked into the little tree poem to create our own version. The group were wonderfully open and when Joyce struggled on a word Victor would step in. A tree poem was imagined and constructed with the winter leaves were withering away, but Victor took me aside after the session and asked us to paint a more positive image, I hope that comes across.

The afternoon session was spent with four remarkable women, one whom had taken part in the previous workshop. Two sisters Eileen and Elsie told me their ways of being, and Ida described the most intense relationship with her own Aunt. What struck me when speaking to these women was how much loved ones come into our minds when we are alone and still and what a reflective time of year it is. The sessions always are a journey, as you do not where they will lead and who you will meet; in the words of Ida “it’s a Peter Pan journey.”

Guest writer

It was definitely the beginning of this cold spell, when I went to do my first poetry workshops at Stepping Hill Hospital on 6th November. I was nervous, especially as I was going along to the stroke unit E1 where a long time friend of mine was a patient and would now be a participating in this morning’s workshop.  I was also confused to find that B5 was no longer, and so I rearranged my afternoon session for the old faithful A10.

The morning session on E1 was in a group with people who had recently had a stroke. Each of them had been affected differently. Joyce had lost her speech and was working on gaining it back, Tom had lost the use of his left hand and was slowly trying to adapt to using his other, Victor could no longer write and Muriel was in a similar position.

I felt so much compassion for all of them taking on board the activity of the morning, which was to write how they were feeling using William Carlos William’s poem Asphodel as loose inspiration.
I considered what a difficult task this is to do, when the entire group had been to places recently within their own bodies they would never have imagined.  I was greeted with warmth, tears, sharing, deep thoughts and exasperation.  But not once was any frustration aimed inappropriately, the heightened emotions allowed creativity to happen and vice versa.
William Carlos Williams was chosen as an established poet who suffered a series of strokes, he spoke of his weakened physical state giving him strengthened creative ones. His poem gave way for much discussion and interpretation in the morning session and carried on to A10.

The afternoon session was spent one to one with two patients, who openly admitted liked to talk.  We went from the past to the present, through people in their lives and the daily minute. There are so many levels of creativity I see when finding people to engage in these sort of sessions, from church, to dancing, to making clothes, to bird watching, we are each as unique as our own passion placement, but underlying these writings show we all have the same essential qualities.
All in all an awe inspiring day.

different strokes

Great to see more people visiting and linking to our sites, heres an interesting notice board who have done just that.
http://diffstrokes.webfactional.com/

the inner part

in last week and three weeks before

bowel trouble

(nice)

test me kidneys

mind going round

which is what and what is

ignorance last week and three before

toboggans into bowel trouble

embarrassment

that you need

to tell them inner

things

(nice)

ungrateful bowels

heart and me blood test

results

unconvinced

test me test me trudges up

mind going round to ignorance again

anonymous 8th July 2009

image © Lois Blackburn 2010.

for more examples of arthur+martha poems, please visit http://arthur-and-martha-poems.blogspot.com/

marvellous encounters of my life O little drops

This afternoon (Fri 11 Sept) I worked with people in The Meadows, which is among other things a day centre for people with a dementia diagnosis. The two staff (Ann and Anne) and myself had the luxury of working one-to-one with participants.

We'd talked about memory and the loss of memory on other occasions, with my noting the conversations, allowing threads to build into a complex weaving. Today, we began with seeds of Il Pleut (Appollinaire) and Kaddish (Ginsberg) two of the most well-known 20th Century poems - and then span them away into rain and recollection.

The poem was collaged together from people's memories of rain, memories of forgetting, and image-play of rain symbolising the liquid borders of these states. The blurring of edges, of shapes misting, thunderbursts, and the sensual beauty of rain perceived through our bodies.

The group of three participants worked quietly, concentrated. This was a very different quality of attention than that of the first two talk-shops. Today was most definitely a serious enterprise, fully meant. The subject of forgetting is talked about in this place with humour, anger, fear, insight...

Broaching it felt like an extended faux pas, the sound of a taboo breaking. To my ears, the piece that emerged had both delicacy and directness. A three-voice reading of it flicked between joy and pain. Mostly joy. Anne said afterward, dementia is often depicted on TV with doomy images and pompous classical music. But it is not necessarily a dark journey; light does come through.

As I left, I was full of my own memories of The Meadows, which is where Lois and I began our first collaborative sessions nearly ten years ago. I kept expecting to hear the clicking of those Blackburn high heels and her big bursts of laughter.

come back come back come back

I walk, or I ride a bike. For most of my journeys I’m self-propelled by my own limbs. Even when Julia and I travel by car, there’s often a long walk at the end of it, hiking up into the hills. Thomas, who is 88 and has walked his life's duration, now sits all day in a chair by his hospital bed.

I asked him: how can you come to terms with this?

He said he remembered when his wife was expecting their child, he had to walk to the hospital – a journey of several miles. The baby was a late arrival and he made the journey four times – about 40 miles by foot.

I asked him my question again.

He told me about his daughter’s first steps. And then of his own disastrous first memory of walking. His mother was scrubbing the kitchen floor. There was a bucket of boiling water. He recalled the bucket, gesturing the rising steam. He stumbled into it. Remembered the spill, his mother’s shock. Happily he survived to toddle into more mischief.

I pressed him for a more direct answer. How do you deal with not being able to walk?

He said he remembered walking at night by the river in the village where he was born. The river sounded like talking. It seemed to say: come back come back come back.

PA-TIEN - ENCE

Being back in the hospital environment forcefully reminded me of how these places can be simultaneously strange, estranged and uplifting.

The morning was spent in Ward 5 at Cherry Tree, where a group of patients made me welcome and we sat together around a dining table that also serves as elbow rest, pillow, reading stand, desk for nurses, sounding board for angry fists and, mostly, a meeting place. Ill health is of course one of the great levellers; with this comes a great mixing of strangers and neighbours. They come quietly, privately together into understandings that are among the most profound that humans share. They also annoy, scare, amuse, alienate each other.

”PA-TIEN – ENCE!”

On this day we talked about patience and how you get it. ("Patience, you learn under sufferance.")

Symbolically, the two people at the head of the table were at the poles of patience and impatience. Richard was bristling with energy and annoyance that he couldn't expel because his 83 year old post-stroke body was beginning to seriously slow with wear and tear. Angela had recently suffered a stroke and was still in the first stages of recovery, but she emanated calm. We chatted around and about the experience of being in hospital and what gets you through. How to observe the collapse of your own body and still not succumb to inner collapse. How to cope with "Waiting, waiting, waiting."

Partway through we were joined by staff member the ever-supportive Susan Hughes. She listened awhile, then told us about Want It Now, or WIN, an acronym used by early teens to describe the process of heavy-pressuring their parents into buying the latest clothing/computer game/hairstyle/generic product for them. The conversation turned to the childhoods of the patients - "We were never prepared for pleasure, we were prepared for work."

Several of the women described in detail cleaning the steps of their houses with the 'donkey stone' when they were very young. The grind of working lives, that began not with work but early childhood. And yet the happiness was there too, they insisted. So how do you make sense of that, I asked.

And in the midst of the replies, Angela raised one finger in the air, and pronounced very slowly but clearly: "PA-TIEN - ENCE!"

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.

fix my brain

fix my brain and hope that would fix everything
my brain that will fix everything else
not a plaster big enough
a plaster wouldnt cover my arm
my hand
‘please put everything right for me

Ivy Burton
8th July 2009

A stroke is a brain attach
"A stroke happens when the blood supply to the brain is cut off and brain cells become damaged and die. It has an immediate effect on body functions (like moving arms and legs) and mental processes (like thinking, remembering and understanding language). Sometimes the symptoms last a short time- called a transient ischaemic attack (TIA) or mini stroke. In other cases, the symptoms may last for a longer time."
The Stroke Association.

D.N.A

D.N.A (HAIR)
I was always
picked as an
angel


anon
2008



'Deoxyribonucleic acid (DNA) is a nucleic acid that contains the genetic instructions used in the development and functioning of all known living organisms and some viruses. The main role of DNA molecules is the long-term storage of information. DNA is often compared to a set of blueprints or a recipe, or a code, since it contains the instructions needed to construct other components of cells, such as proteins and RNA molecules. The DNA segments that carry this genetic information are called genes, but other DNA sequences have structural purposes, or are involved in regulating the use of this genetic information.' Wikipedia

learning to slow down

learning to slow
down
a hard lesson

Rennie Venus
2008

arthritis

my arthritis
I get my realistic details
at all times.


Ron Miles (Curzon)
1st July 2009

the jargon

Below is the poem we made with the group 'talking heads' at Walthew House. Walthew House http://www.walthewhouse.org.uk is an independent local charity supporting people in Stockport who are blind, visually impaired, Deaf or hard of hearing or who have dual sensory loss. We were made very welcome by the group, I learnt lots and look forward to hearing about the next session with the group (I'll be of on my maternity leave by then!)


the jargon

terminology:
I’m registered blind

the word blind is very final
people
get embarrassed by words
but I’ve always faced the world
blind
eyes of bone

some boys kicked
the stick out of my hand, said
“Now go look for it,” said
unacceptable words, not-PC
always interested me, the words
I am totally blind
a spade’s a spade
an indicator cane
a symbol
a guide cane to
measure from your foot to your breastbone

go through a grieving
lost vision
lost independence
grieving
lightsudden flewbird
go through a long time
the bitter twist fills a void
Blind Beggarman Pew always
bringing the black spot

language, jargon:
visually impaired

how small my disability
from the foot
to the top of the heart-bone
born blind:
went to schools for the blind
the sunshine homes
colours mix with words for me
anger with red traffic lights
what you can see and what I can’t is

I don’t get any older
in the shaving mirror.