The students knew little about muscular dystrophy and what went on at the children’s hospice and the young people from the hospice had had little contact with Joseph Leckie College. It’s been a great learning process for everyone involved.

I wrote it in case she could not hear me, in the faint hope that she might read what I had to say through those ambiguously half open eyes. I wanted to tell her that she could go now, that another little soul is on its way in, that she may pass him at the threshold so look out for him – for he is a boy – and there can be a spiritual handover between the two of you, grandmother to grandson, as you leave and he arrives. I’m attracted to this karmic conceit. It happened when my father died and my second child arrived, a quarter of a century ago and now, who knows, another magical rebirth may be on its way. I show her the scrap of paper again and for a moment I convince myself that she has understood, until a protracted groan makes me think maybe not.

This is the dying room on the women’s ward of Winchester Hospital, close to the nursing station, set discretely aside from the main ward. I am pleasantly surprised by the sensitivity of those who are caring for her. I work in a hospice where we are used to hearing horror stories about dying in hospitals butthe term palliative care is understood by everyone to mean the kind of care offered to those for whom no cure is possible – medication to alleviate physical pain, and other therapies that will ease the spiritual and emotional journey. This is in perceived contrast to the experience of those who find themselves dying in a hospital, where the ethos of cure can create an institutional denial of death, which comes to be felt as a kind of failure. Add to this the sense of being merely an NHS number, rather than a person, in an understaffed bureaucratic system that’s geared towards trumpeting good health and recovery, and you can see what an alienating and stressful business dying in a hospital, rather than a hospice, can be. But it’s not like this here, which suggests that a change may be occurring in the way NHS hospitals treat the dying. There’s a soft respect towards my mother from the nurses I meet, although perhaps this would change if she were conscious and suffering tangibly.

She has lain here, in what I suppose to be a coma, for two weeks now. The room is slightly scruffier than when she first came in, reflecting the sheer time it can take to die, the slight but not disrespectful easing of care that’s happened because she’s taking so long to go. The water in the glass vase of green Honesty that I picked from her garden now needs replenishing. Her notes, attached to clipboard at the foot of the bed, now have dog-eared corners. But the nurses still look in at regular intervals, to turn her gently or clean her. The drip is checked and oxygen flow adjusted.

So there she lies with those partially open eyes, perhaps still seeking to convey something to her beloved son, to express a sentiment that the blood drenched language centres of her brain can no longer construe in words and syntax.
Summer 2002

Her birthday was on Monday 1st July so we expected she would wait for that. Her birthday came and went and on Tuesday the nurses asked me whether there was anything else she would have been waiting for, a birth or anniversary. I couldn’t think of anything. They said it was her will alone that was keeping her alive. After midnight that night I began to realise she was going to go that night and got up and sat by her bed. Her breath was very laboured and she had been in no pain throughout the six week period prior and so she was not on many drugs of any kind, so small changes were very noticeable. The nurses said she was showing none of the imminent signs of death but would let me know when they thought I should call my brothers. I sat with my hand on the crown of her head.

At 3.30am the nurse came in and said I should call anyone who would like to be present… I called my brothers, Paul, Brendan and Dermot, and her friend, Jim. Dermot and Jim came immediately. Both Paul and Brendan said they did not feel the need to be present. We sat in the room. I tried to tune in to what was happening for her, what she was thinking. I had the image of water flowing like a river for quite a long time and then what seemed to be a barren landscape. I realised that it was the sea. She loved the sea and was having that in her thoughts. I was not able to talk but the nurse said she could hear me if I spoke to her; and said to call her if we needed anything.

I started to talk to her. I reminded her of the image of the granny house and said it was going to be time soon to go to the granny house and that what we hadn’t realised was that the house was by the sea! We sat and looked at the sea together …. I wasn’t sure if I was her or with her but we sat and looked at the ocean. I described it to her, the width, the depth, the distance, the peace and calm on this beautiful warm sunny day. Walking by the sea was one of the things we did together. We must have sat there for fifteen minutes, in silence.

And then we turned to look at the granny house. Her room was in the house and it had a balcony overlooking the sea and on the balcony were flowers and plants, which she also loved, and as I talked of the room her breath changed and became natural. No longer the laboured gulps of intaking breath of the past hours but now breathing out and intaking breath in the natural rhythm of living. I told her that when she was ready she could go to the house and I reminded her that I would not be coming with her and that I would stay here till she had gone in to the house and if ever she needed to check on us all she could leave her room as the angel she had told me about.

We began to head up the path and I reminded her it would be her decision when to go and that everything was ready in the room and granny was waiting for her. She gave a small cry like a chid or a bird, hawk-like. I told her she was on her way and that this was it and that it was beautiful and wonderful in exactly the way she wanted it to be and she took in a breath and let it out and then a second more lightly an don the third intake of breath she breathed out and went. I felt a swoosh of energy running from her head down to her feet and I knew she was gone. We sat quietly knowing it was over. I rang the nurse who came in and confirmed that she was dead. I felt a convulsing of tears and emotions through my body separating me from the seaside and as it passed through me a great peace and restfulness came.

And Ireland being Ireland, we then removed the body to the front room in my brother’s house, where it was waked for the next three days with tea and ham sandwiches and plenty of drink to tell stories, laugh, get angry and cry with the children, relatives, friends and anyone who wanted to dress up in their funeral and wedding suit and doff their cap and say “sorry for your trouble” and come and sit with the body.

She died July 3 2002. We later discovered that this was the anniversary of her own mother’s death.

July 2002

Mum was always in bed in the hospital. I missed her so much. i still miss her, just as much. Her name was Maria Nicolaou. She was so gentle and loving. She took such care with everything she did, so it was just right – my most treasured possessions are two aprons she made for me for school cookery classes, so beautifully made, with lace edging. When Mum died, everyone in the house was crying. My relatives came over from Cyprus. nobody told me what was happening, but i guessed Mum had died . Dad just sat and looked at the floor, unable to move for the whole night. i didnt want to believe it , so i just read my books and thought i was being silly. Then everyone went to Cyprus . Dad bought me a puppy , and left me with my sisters husbands family , who were lovely to me. But i knew Mum was dead , and nobody talked about it . I was 10 yrs old now. Dad came back , and when we got home asked me to go into my room with him . I knew what he was going to tell me. I didnt want to go up the stairs. I remember that walk up the stairs to this day. He said Mum was dead. It took me a very long time to accept i would not see her again. Its a terrible loss.

I am haunted by how she must have suffered , physically and emotionally -now that I am a mother , how she must have felt to leave us all behind. i am lucky to be alive . i want to live a life that she would be happy for me to live, so that she has a legacy. Mum worked for our family business, washing up at the back of the Wimpy bar – always helping everyone . i dress up every day and write complex documents and have ideas that people sometimes listen to. I work hard to help people . I hope Mum can see me , I didnt get a chance to say goodbye.

Before she died she looked at Dad and told him she loved him, we all cried. We all thought that Dad would join her within a year, he had chronic lung disease and couldn’t walk that far even though he had pushed himself to the limit to look after Mum. He spent Christmas in hospital and wanted to end his life but with the help of antidepressants and lots of love, he pulled through until May when he was readmitted to hospital. I visited him over the weekend before he died and he was as bright as ever, telling jokes and taking the micky out of us all, above all, he was still the boss.

He died the following Tuesday of a Pulmonary embolus, he was 85. I was gutted as I didn’t expect it just yet, I knew it would be fairly soon but your never really prepared are you. I was 170 miles away when he died. My cousin was with him who he thought of as a daughter, that was a comfort but I cant help feeling a twinge of jealousy as it wasn’t me that was sitting with him. I miss them both so much, my two brothers miss them both so much, our wives are brilliant with their love and support as well as our children who are mostly adults themselves. I still go to pick up the phone to call Dad to see how he is but within seconds I realise that he is no longer there.

Movement has been really powerful in allowing new guests to find out about each other in a way that values what they bring to the present moment rather than focusing on their losses. It enables people to open up and find out about each other through their own creativity and the vitality of their imaginations.

Jeannie writes: ” the sessions have gone really well with lots of laughter, some poignant moments, some sad moments, all carried in a very warm positive atmosphere….

The stories have been great and all been told through movement and dancing. In one session we went to Jamaica, flew in plane with Princess Anne, and had a virtual snow-boarding experience.”

A film will be made of the final session and shown as part of Dance Screens in Birmingham October 2009

Today (29^th June) Birmingham’s Electric Cinema plays host to the first screening in Britain of a ground-breaking film about the lives of a group of people contending with a terminal illness.

Entitled Night and Day, the film tracks the highs, lows, hopes and fears of six patients and their families from the Birmingham area as they come to terms with the impending impact of death.

Through the experiences of individuals living on a day to day basis with the challenges thrown up by a range of life-threatening conditions, the film explores how illness affects relationships when spouses become front line carers.

Patients, families and friends talk candidly about the impact on them from both a practical and psychological perspective, as well as the support they need from palliative care teams in the community.

Produced by the arts-based organisation Rosetta Life, Night and Day forms part of the

wider Let’s Talk about Living campaign to stimulate open public discussion of the needs of those approaching the end of life and to help improve the range and quality of services available to them.

Chris Rawlence, director of media at Rosetta Life, commented: “Birmingham and neighbouring parts of the West Midlands are leading the way in enabling people to talk about subjects that have traditionally been taboo in the British psyche. This new film will inject compassion and understanding into the debate about the best ways of helping the individuals and families affected.”

Veteran black actor Earl Cameron CBE, who lives in the West Midlands and has starred in dramas as diverse as Casualty, Dalziel and Pascoe, Queen and Thunderball, will draw on his personal and professional experiences as he invites the audience to identify key lessons they can all apply in the future.

Said Earl: “It is highly appropriate that this wholly unique film is being shown for the first time in Britain’s oldest working cinema that opened its doors one hundred years ago on 27^th December 1909.”

The film, and the campaign to which it is linked, have been funded by grants from Birmingham East and North Primary Care Trust (BEN PCT).

Melanie Young, senior commissioner at BEN PCT, commented: “All those who have worked on Night and Day are to be congratulated for their innovative approach to this difficult subject. In particular, the patients and families involved should be applauded for their courage in telling their stories in this film. They are true stars who will provide inspiration to countless others who find themselves in the same position in years to come.”

END

Notes to editors:

1. The patients and family members featured in Night and Day are:

• John and Margaret Trueman
• Elias and Doreen Pharaoh
• Zoey, Garry and Zac Hill
• Joy and Sav Minogna
• Sally Coulter
• Eve Crocker

2. Interviews could be arranged with patients, families and members of the production team involved in the film either before the premiere at the Birmingham Electric Cinema next Monday or during the event itself. Please contact Paul Castle on 0121-765 4222.

3. If you wish to send a representative to cover the premiere, please contact Paul Castle in advance on 0121-765 4222. The screening of the film will start at 6.30 pm at Birmingham Electric Cinema, 47-49 Station Street, Birmingham B5 4DY.

4. Earl Cameron CBE will lead the post-screening discussion that is scheduled to take place from 7.30 pm at the Radisson Hotel, 12 Holloway Circus, Queensway, Birmingham B1 1BT. If you would like to interview Earl before or at the event, please contact Paul Castle in advance on 0121-765 4222.

5. Night and Day, which runs for 45 minutes, will be available on DVD. If you would like a copy and permission to use some or all of film, or stills from the film, please contact Paul Castle on 0121-765 4222.

6. Night and Day has been produced as part of the Let’s Talk about Living campaign taking place throughout the summer and into October 2009. Other elements of the campaign include a new play set to tour venues in and around Birmingham; musical, poetry and photographic workshops; a children’s concert at the CBSO centre; the launch of a specially choreographed dance programme; and publication of a digital book. Full details of all these activities will be published nearer the time.

7. Further details about the Let’s Talk about Living campaign may be viewed at www.rosettalive.org

For further information please contact:

Lucinda Jarrett, Artistic Director, Rosetta Life

Tel: 07968 428 494

Paul Castle, Let’s Talk about Living Campaign

Tel: 0121-765 4222

A NEW film about the lives of people having to cope with a terminal illness will receive its premiere at Birmingham’s Electric Cinema on Station Street at 6.30pm on Monday…

Night And Day documents the highs and lows of six patients and their families from the Birmingham area as they come to terms with impending death.

The film explores how illness affects relationships when spouses become the primary carer.

Patients, families and friends talk candidly about the impact on them from both a practical and psychological perspective, as well as the support they need from palliative care teams in the community.

Night and Day has been produced by the arts-based organisation Rosetta Life as part of a wider Let’s Talk about Living campaign.

Chris Rawlence, director of media at Rosetta Life, says: “Birmingham and neighbouring parts of the West Midlands are leading the way in enabling people to talk about subjects that have traditionally been taboo in the British psyche.

“This new film will inject compassion and understanding into the debate about the best ways of helping the individuals and families affected.”

The film and associated campaign has been funded by grants from Birmingham East and North Primary Care Trust (BEN PCT).

Melanie Young, senior commissioner at BEN PCT, said: “All those who have worked on Night and Day are to be congratulated for their innovative approach to this difficult subject.

“The patients and families involved should be applauded for their courage in telling their stories in this film.

“They are true stars who will provide inspiration to countless others who find themselves in the same position in years to come.”

The patients and family members featured in Night and Day are: John and Margaret Trueman; Elias and Doreen Pharaoh; Zoey, Garry and Zac Hill; Joy and Sav Minogna, Sally Coulter and Eve Crocker.

Other parts of the Let’s Talk About Living campaing include a new play set to tour venues in and around Birmingham; musical, poetry and photographic workshops; a children’s concert at the CBSO centre; the launch of a specially choreographed dance programme; and publication of a digital book.