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

spy my shadow in the sun

strange weather
’s something you get used to
I’m not proof to it yet
tired
of
it

strange rather
gathering myself to
gether I can’t
give advice and I’m still learning
how
it
is

whether and if
you could fix a part, which part
would it be?
what
would the sticking
plas
ter
say?


Anonymous

statements

sat on these statements for weeks awaiting
to find the right-minded person to speak
56 summers (and a young 56!)
but it's draining from me: brain attacks.

lonely, a nightmare set in hospital
(worse, not knowing whose the nightmare is)
the staff change, shift changes, I’m going blind
long-shadowed in my body's sunset

physical, mental pain, frayed sleeved
hand trapped within my own body weight
neighbour losing hearing, he’s lost speech
we’re all learning in the same boat

live through, it does get better, find
like-minded souls, sat on these statements.


Richard Lewis

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.

dementia support

Staff Nurse. Ruth Breslin

The dementia support we offer is for people of any age – here it’s given so that sufferers can stay in their own homes as long as possible, living their lives as fully as possible. At this day hospital we provide specialist assessment, nursing support and O.T activities for people with various types of dementia. We hope this will prevent the need for a hospital admission and allow relatives / carers some much needed respite.

There are many different types of dementia. Some are related to diseases such as Alzheimers or vascular conditions such as strokes. Depending on the illness, people might have short-term memory problems, disorientation, be anxious or agitated or develop problems such as disturbed patterns of sleep.

We also support people with less common illnesses such as fronto-temporal dementia which can involve very challenging symptoms such as obsessive-compulsive behaviours or marked personality changes. At all stages of the person's journey through dementia there are hurdles to overcome, for both the individual and their loved ones.

Our role is to help people understand what they are going through, and together find positive, constructive ways to look to the future. This may involve helping people to come to come to terms with their diagnosis and explore their feelings and anxieties. For example, some people may feel angry and need emotional counselling. Others may need practical support to understand their symptoms or treatment plan. Educational support is also vital. Certain dementia symptoms may require special consideration in carers; for instance, Alzheimers can cause problems with visuo-spatial awareness which affects a persons' recognition of depth, distance and what an object is. Someone with this problem might walk from a carpet onto lino and think that they should be taking a step up, when the two surfaces are actually flat beside each other. This can cause them to stumble or fall.

We also see many kinds of language difficulties. People might remember songs, or recite poetry, but be limited in other uses of words. I knew a gentleman who could recite Shakespeare in any accent you like, but his own self-expression was stunted.

Individuals can sometimes get lost in the illness and we fight that by helping them create books that tell the history of their own lives. The patient is transformed from an anonymous old lady into someone who has flown planes, who has lived an amazing life. A book like this is very valuable, especially when someone is in long-term care; it becomes a memory guide to the person and a prompt for staff. It’s an anchor for the patient and it’s a point of contact, a talking point.

You need background to understand people. Local history, personal reminiscences, things to hang a conversation on. From there you get to know them more deeply. Everyone’s needs are so different. Some people actively seek help, others are more reluctant to ask for it and we have to gradually earn their trust.

We achieve a lot once we’ve got trust. Its very rewarding to see people getting happier and growing in confidence every day.

Many people who are referred to us understand that they have a diagnosis of dementia. Because of that you can be honest and trust can then build. People start to understand who you are, they open up to you, which is vital because dementia is in the mind.....unseen, it has to be talked about before we can treat it. It is so valuable for the person to know that the scary things that are happening to them, such as hallucinations, are part of their illness and that we will work hard to find the right medication to ease them. It is a partnership.

The care philosophy we use is based on the work of the late Tom Kitwood, who pioneered the person-centred care movement. Kitwood once said that to treat people as if they were objects or consumer durables like a TV is "grotesque". But, in the current ecconomic climate, it is easy for healthcare to reduce people to numbers or statistics. Dementia care nursing has, historically, been under-valued and overlooked as a specialist area of practice. But the nature of our patients' needs and their vulnerability demands that we need more - not less- skills to work in this area. There is a lot of emotional giving in dementia care. The reality of person-centred care is that we have to go the extra mile. Our client group need people to spend quality time with them and they deserve committed, compassionate, well-trained staff who understand their needs. That’s what keeps the patients safe and physically / emotionally well. We work hard to keep the atmosphere calm and uplifting, from the music we play to the activities we undertake. We also have good relationships with the people around the client too, relatives, doctors and other health workers. Close teamwork is essential.

When people move on, we miss them terribly because we’re very much a community. We get relatives coming to visit at our Christmas Fairs, people from the past pop in to say hello. I always say: “Have a cuppa if you’re near, let us know how you’re doing.”

There are days when the job can be tiring and demanding, but it’s never to do with the patients. They keep us going on the tough days! It is the politics, red tape and paperwork that causes the most frustration.

We never forget though, that however difficult our days can be, it is the carers who have the hardest job of all. They never cease to amaze us at how they keep going- sometimes under extreme pressures and even with their own health problems. When we come off duty, we can relax and re-charge our batteries. Our carers are on duty 24/7.

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.

Parkinson’s Disease

Medical Director, Doctor Catania interviewed at Stepping Hill Hospital, Stockport, 2009

by Philip Davenport

For Parkinson’s Disease, the myth is the extreme. If you flash the word ‘Parkinson’s’ people conjure up pejorative words associated with extreme cases. This doesn’t describe the long journey of a patient. It is a progressive disease, but there are different rates of progression – almost individual. We have effective symptomatic treatment for patients.

30 years ago Parkinson’s was untreatable. Its progression remains untreatable, but the difference is that now the symptoms can be treated effectively. Combinations of treatment can be tailored. Older people frequently have other morbid conditions, so Parkinson’s is not necessarily the only contributor to illhealth.

Nowadays there’s a vast interest in Parkinson’s Disease among medics and the pharmaceutical industry, because the population is ageing and Parkinson’s is related to age. They know there’ll be a sustained demand for treatment. Very likely in the future, there will be novel therapies improving symptoms, but also influencing the rate of the disease’s progression – at the moment we can’t influence progression. There’ll be a lot of effort to diagnose it before symptoms develop – at the moment there’s a 10-year period of Parkinson’s that’s pre-clinical, invisible to us. Spotting and influencing the disease earlier will affect the rate of progression.

A large proportion of sufferers experience abnormalities with their sense of smell, which is possibly an indicator. Also constipation, depression and abnormal sleep. At the moment you can’t accurately diagnose pre- Parkinson’s.

Patients inevitably experience an element of mourning. There’s a wide spectrum of patients. Some self-diagnose. Some are relieved to be told about the nature of the illness and that there’s effective treatment available. Others are taken aback and shocked. Others never come to terms with it. There’s a high incidence of depression with Parkinson’s Disease. Sufferers will need help with this depression and it affects their perception of the illness. In some cases it’s more effective to treat the depression than the Parkinson’s.

Who copes? A personality type associated with Parkinson’s Disease would be highly intelligent and driven. These people tend to be positive. They can be amazing – they’re clearly encountering a high degree of disability but can cope and will say life is tolerable. Other patients, from an objective point of view, seem never to be happy, always want to change their treatment. People with good family support, social networks, positive, who are loved and cared for – this helps with the illness.

The quality of their emotional life – particularly how they deal with the depression – is dependent on how they adapt. Some adapt well, rather than pursuing hobbies that are impeded, they pick up other activities. Coping is affected by how people perceive their own body to be – visual things like the tremor will affect wanting to go out. Eating, for example, or limitations with walking, can produce a social narrowing. But this is highly variable.

Normally after 10 years, people are likely to develop Parkinson’s Disease dementia, which is similar to Lewy Body Disease dementia. Usually there will be visual hallucinations, or tactile or auditory hallucinations. There might be daytime somnolence and acting out dreams. It is an executive dementia, which means that people preserve their short-term memory, but have difficulty in formulating a sequence of ideas. For example, if asked to follow a sequence of alternating numbers or letter, a person with Parkinson’s Disease would not be able to do it.

If you talk to someone with Parkinson’s Disease, they might give the impression that you are not understood. They might also stare at the TV, baffled by the complexity. It is all to do with this inability to deal with sequences. For instance, if you ask them to tap out a simple rhythm with one finger they might be able to do it, but tapping out the same rhythm with two alternating fingers would defeat them. To use a metaphor, it’s a bit like trying to play a piano using rhythm but no scales, no melody.

Giving the news to somebody that they’ve got Parkinson’s is something I’ve done hundreds of times and yet each is unique. When I meet a patient who I’ve diagnosed with the disease I first of all describe what I found in the examination; I tell them that in my opinion this suggests that they have got Parkinson’s Disease. Then I ask: “Have you heard of it?” Next I tell them that this is not curable, but we have very effective symptomatic treatment. It is progressive, but difficult to predict and varies individually. We have a lot of knowledge of it so we can give the best treatment available. I’ll tell them about DVLA, then give them a pack of information to read about the disease.

Sometimes the response is “OK, what do we do now?” and so we discuss treatment. Others need to digest the information. I bring them back in when they’ve had time to reflect and possibly to get more informed.

Their journey, their voyage, as sufferers can be described as passing through mild, moderate, severe stage. It affects the deepest trends in personality. The ‘weather’ changes, depending on the stage and so does treatment. At the mild stage you are interested in having some long-term effects with treatment, maintaining complex brain activity. By the severe palliative stage, you are trying to reduce complexity because the treatment is effective only if the brain has cells to use as transmitters. At this last stage, the dopamine won’t have enough cells to work with and at the very end will only cause hallucinations, increasing distress. The journey takes 15-20 years.

Patients are humans with a particular need. They’ve presented to me a physical problem that impacts on their quality of life. They see me as a person who has experience and knowledge to help. As a doctor, my duty is to help people – I cannot shy from my responsibility. This work is intellectually and medically challenging and also very emotionally fulfilling. The rewards are in helping the carers and relatives understand the nature of the problem, making them feel that they’re not on their own. Even though the patient has an incurable, degenerative condition we can still offer high quality care.

Medical Director - James Catania

James Catania has been a Medical Director for the last six years and is a specialist in the care of older people, for which he has retained his clinical commitments. He has worked as a consultant physician for the last 15 years and has been involved in management for over 13 years