‘It takes a village’ exhibition

“They have dementia but you get to know people really well, even the people who can’t communicate, you try your best. You know their history, their personality, their likes, their dislikes. I really started to love the people I was there to care for.

You have to learn to take grief in your stride almost. I’d never seen a dead person before. Their little room in the care home is empty and somebody else will come along and fill it. It's OK to cry. But you’re still at work. You still have responsibility for all the other residents, who still need you, relying on you.”

 

“You’re dealing with emergency situations, yet in the next room there’s someone who is dying and needs end of life care. You’re trying to get to know that person, but it isn’t always possible........ ...they may be semi-conscious. You don’t always get to people as quickly as you’d like, but the care is good. You can’t make a sad situation happy but we make things as good as we possibly can.

I have no idea how I would feel if I was told I was dying.... I don’t think people remember the technical and clinical stuff - they only remember the kindness and compassion. I’ve learned ways to cope but I don’t feel the emotion any easier now than when I was a brand new nurse.”

“As a taxi driver you never know who you’re picking up next.

She must have been in her 30s, she was very tearful, she’d been visiting her dad at the hospital, she said that he only had another couple of days maybe. She just had to go home and get a shower, she’d be coming back again.

Sometimes you get the nice feeling that you’ve helped somebody a little, just by providing an ear. Sometimes people are comforted that real life is going on, the wheels of the taxis are turning and the world goes on, and everything isn’t coming to an end.”

“I firmly believe that it is often the ‘little things’ that matter most. And I think that sometimes they get overlooked because they’re seen as ‘little’...

There was a man who died of motor neurone disease a couple of years ago. I saw him weekly, and then daily, for 18 months. He was paralysed, there was no family local to him, and he was a smoker. When I’d get to his house, I’d light a cigarette and hold it in his mouth. Then I’d give him another one before I went away.

Lighting those cigarettes was probably as important as many of the medical things I did for him.”

“I took six months off work to be with Dad when he had cancer. I remember one time, my Mum was speaking to a friend on the phone and she said ‘Tommy? Aye, he’s no bad, he’s doin’ alright.’

My Dad turned to me and said ‘No bad? No bad? I’ve got me arse in soil and two feet in the grave and she’s tellin’ people I’m ‘no bad’?!’.

He was hilarious. He was so funny. Looking after him wasn’t stressful – that was the joyous part. It was a privilege. The hard part was realising he was going to die. “

“My mother-in-law stayed in the hospice for the last four days of her life. But the hospice didn’t just care for her – it cared for us - the family. There were no visiting hours, no restrictions.... and we were allowed to play the Quran recitation on a CD within the room. I thought, ‘this is a service that my community doesn’t know is out there’, and I wanted to be a part of it.”

“I was determined not to be her nanny, I was her spouse. If I became her nanny, we no longer had a marriage. It was a question of giving her help when she needed it without being officious about it.

Ultimately, I had to bathe her. She didn't dare go into the shower cabinet. But having bathed her, I left her to dry herself. Or she'd start with the wrong button on her blouse. I'd simply unfasten them again, fasten one, and leave her to it.

It was a saving grace we were both able to laugh about things.”

“We try to do a lot of memory-making before a child dies - hand moulds, stories, activities with siblings, memory books... Things like play and music therapy are just as important as symptom management.

Some people think ‘how could you do your job? It must be very morbid, it must be very sad’.

It is a very sad job. But at the same time I feel I’ve got one of the most privileged jobs. And I think that the day that I come away from supporting a family, and I don’t shed a tear or give it a second thought - that’s the day I’d need to move on.”

“My Dad had advanced dementia. He went into hospital at Christmas because he was quite unwell. I found that really taxing. We had looked after him ourselves for so long – years, not just a few weeks - caring for him was normal for us. But our help was not always welcomed by the hospital staff. My family were looking to me for guidance... despite my extensive experience as a nurse, I stood in the middle of that hospital and thought ‘I don’t know what to do’.”

“I looked after my Mum for five years. My heart was breaking. I was struggling, and most days I really didn’t know what I was doing... Just as we thought we’d figured a way of getting through things - a routine - dementia would change everything again.

I used to sing Perry Como songs to Mum...I used to sing ‘And I love you....’ and my Mum would go ‘....so’, and her eyes would light up with so much life and joy.”

"It's a huge privilege as a stranger to be invited into somebody's home when it's such a sensitive time. The gentleman had a brain tumour and would sleep off and on during my visit, one afternoon a week.

His wife would usually take herself off out somewhere; it gave her a chance to breathe, some time for herself. Later she would come back and chat about how she felt.

At Christmas I received a card ‘to a very special friend’. I found that truly humbling. His wife said 'that's how I feel'."

“The mother of a girl at school died of a heart attack quite young. I was one of several school staff who went to the funeral. I didn’t know what to say. The girl just chucked her arms round me and gave me a hug.

I am amazed at how young people deal with these shattering experiences. They see school as a normal place to be - it's the staff they know, it's the kids that they see every day. They nearly all say ‘I just want to get on with things’. If they need to talk about something then they know I am there. That's our role, to be that rock.”

“I work mainly night times, in people’s homes. A lot of elderly people look after a husband or wife at home. They really get quite exhausted and night time can be scary.

There was one old woman I remember living alone, in a very rural coastal cottage. She wanted to die in that cottage. She said ‘if it means I'm alone some of the time then so be it, that's my wish.’ And she got her wish, to die in that little cottage that'd been full of love all her life.

It’s not a sad job. It does get life into perspective. I probably don't dwell on little things very much.”

“Making someone look as good as they can is the last really nice thing you can do for them. I know that sounds strange because they are dead, but that’s part of what we do to look after them and their family. When the family say ‘he looks really peaceful’ or ‘he looks like he’s sleeping’, that’s good. Not everyone has a peaceful death, but once they come to us the struggle has gone.”

“It’s not as simple as ‘you can save this life therefore you must.’

Usually we can do something but everything has a risk, a downside, a real price to pay for the person – pain, distress, or brain damage which leaves you living in a state you never wanted to be in.

It may be that a treatment is probably not going to work, but there is a small chance it might work.

If it seems likely the person will die even with life support treatment, what we may be doing is just deferring death by 5 days, 1 week, 2 weeks.

So we speak to relatives to try and figure out ‘what would this person want us to do?’”

“I’m a total home bird myself – I love peace and quiet. I feel I can’t truly recuperate until I have all my home comforts - things like having your own soft pillows, your own duvets, eating home cooked food... I think that’s the only chance you get to really relax.

When I first met Margaret she had been in hospital for months... she looked so lost. But the difference after just a few days of being at home...! Even though she’s on the way to the end of life, she’s thriving in terms of her energy, happiness and health. I think that’s because she’s at home where she can truly relax.”

Reflections

If you knew death was close, would it change your priorities for the time you had left?

When does ‘care’ become ‘palliative care’?

Is there a difference between caring ‘about’ someone, and caring ‘for’ someone?

Is caring a burden? Is caring a privilege? Can it be both?

The exhibition you have just viewed paints part of a picture of what is sometimes called ‘palliative care’.

Palliative care encompasses not just care of an individual, but also the support of their family and those important to them, throughout illness, dying, death and bereavement.

Palliative care can be given in any place - a hospital ward, a care home, a hospice, at home, at school or arguably even in a taxi. Palliative care can become relevant for someone regardless of their age, and can be equally important for someone whether they have dementia, frailty, cancer, organ failure, a neurological condition, or have become frail with old age.

Many of us think of ‘palliative care’ as being provided by doctors, nurses, and other professionals, but care from sons, daughters, spouse, neighbours, and others are an equally important part of the story. Everyone in the village can play a role.

Palliative care is not synonymous with death – it is about life, about the care of someone who is alive, someone who still has hours, days, months, or years remaining in their life, and about supporting them to live well until they die.

We invite you to share with us any reactions, reflections and thoughts prompted by these photographs.

 

Portraits by Colin Gray.

Writing by Rebecca Patterson and Mark Hazelwood.

Produced by the Scottish Partnership for Palliative Care as part of its ongoing Good Life, Good Death, Good Grief work to promote more openness about death, dying and bereavement in Scotland.

Quotes based on interviews by Mark Hazelwood, Rebecca Patterson and Robert Peacock. Thank you to all who shared their stories for the creation of this exhibition.

All photographs copyright Colin Gray.

For more information, please contact the Scottish Partnership for Palliative Care.