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.

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.

homemade scones

my daughter’s getting me somewhere
to live
it wasn’t easy
don’t fight allow it in
they’re looking after me all the time
is

a helpless helper
I see them everyday
feel I’m being looked after
my daughter will be down
one of the most important things
is

Angela Jenkins, Margaret Brown, Mary Murray
Cherry Tree
2009

wireless

a couple of operations

the prostrate region (nothing to look forward to)

nothing doing

nothing a lot of pain

look forward to talking to your wife

don’t watch the telly

don’t listen to the wireless

nothing I spose

dropping off to sleep

the fall of a sparrow

you do nothing you’re a nothing

absolute

your best plan is to go

(there he goes, off to the toilet

had a fall)

your outlook is nil

go to sleep don’t blame ya

married 65 years

keep your hand in pleasure

hold

real things

valuable qualities

but what can she do

she can’t look after me

is there anything? nothing?

annoys me this number of ill people

their chances are not good and mine are the same

and one of them shall not fall on the ground without

my wife catches my eye

Anonymous

Cherry Tree

2007

happiness is a cheeky so-and-so

Phil has been busy editing poems for Patience, and just sent me a batch. Here is the first one, a bit of joy....

happiness is a cheeky so-and-so

happiness waking up in the morning
happiness happiness
find happiness in grandkids gladness
they keep you young and one on the way singing

happiness crowds queues laughing
happiness happiness
in your chest happiness overalls
I’ll assist you wrap it all in healing bringing

happiness the glugging sound of
happiness happiness
would you like a cup of
happiness? – the dog just smiled at me

(are we going up the dancers?)

May, Audrey, Edna, Marion
2009

my mind is a kindom

I've been experimenting recently working with the 'Patience' poems, and creating my own text/art pieces, sort of in the tradition of a concrete poem. Its been a bit of my own therapy whilst on maternity leave. Somehow doing something creative counteracts the sleep deprivation and leaves me feeling quite invigorated and almost human again.you can find more of my illustrations at www.loisblackburn.co.uk/

my eyes they view the afternoon (part 1)

went down and that was it

going to make my Aunt a cup of tea

a cup of tea and went down to the floor

woke in hospital

*

try to get up

image shouts

*

where am I going?

different than a normal fall

try to get up , couldn’t shout or anything

don’t remember the brain scan

*

I woke through heavy sleep

in hospital my rest defeat

*

cry with aggravation

particularly in the early stages

can’t even get to your own wardrobe

have to ask for everything

shadow’s form to ask

everything against your nature

against your nature

always wanted to do things myself

accepted it more than to begin with

in terrible pain, chronic pain/relief

*

my eyes they view the afternoon

but when I sleep

*

get back to my Aunt

I care for and love

only the two of us

a normal quiet life, the living day.

*

Lynn Holt

1^st July 2009

starcrossd

what time is it?

it is she may ring by every star

she may not forever now

*

at home rather know

than feel and fell

pain it’s getting better

lovers tell

*

my daughter may ring

waitinghome and fellwaiting

*

someone came to me

saw me when

I fell

*

waiting for my daughter

what time is it?

it is she may ring by every star

she may not forever now

Anon
8 July 2009