Working in association with Carers UK and a variety of other statutory and voluntary organisations, Turning Point Theatre toured the play CARERS nationally and internationally.
Carers told the story of four families, each struggling to come to terms with and understand the role of a carer. Using specially written music and songs and humour, Carers connected in a unique way with audiences, giving them emotional permission to discuss their fears and worries in discussions after the performance. The host organisations were asked to bring together a panel of people who could respond to the questions put to them.
These discussions were lively and showed how effective this way of using theatre could be, leading to proactive outcomes and a sense that those who knew and those who needed to know where coming together in a positive way.
Lyn studied with director and humanist Augusto Boal, creator of forum theatre. She wrote forum theatre plays and worked as a forum theatre practitioner for a number of clients in the field of health and social care.
A Carer’s Notes.
EYE SITE – Looking back…
Five years ago, the man I have been married to for almost fifty years suffered a stroke. This catastrophe – for that is what it was – followed a major operation to graft new veins to his heart. It’s called a bypass, which makes you think of a congested road – a good description of blocked arteries. Two veins were log-jammed and without the op, the future would have been bleak.
He survived the operation, though the UK hospital was in a dire state, with limited staff and resources due to the dreadful treatment of our precious NHS by this Tory government. The operation had been cancelled several times. Finally, he was given another date. We waited all day at the hospital, only to be called into a side room in the late afternoon by one of the consultants and told that the op was not happening as the operating theatres were closing for two weeks of maintenance. I was appalled and, along with another patient’s husband whose operation had also been cancelled for the third time, we asked the doctor for an explanation. He looked acutely embarrassed and told us to go to the Press.
My youngest daughter had come home from Australia to be with her dad. As a journalist and marketing executive, she was horrified by what we’d been asked to do. We made the decision to go and talk to the CEO first. We demanded a meeting and were sent to the hospital’s top floor, where we waited outside the office. During all this, my poor husband, looking stressed and pale, accompanied us but said very little. My daughter’s calm reassurance made us both feel so much better when we were eventually ushered into the CEO’s room.
At first, the response was defensive, but when we related the consultant’s instruction to ‘go to the Press’ the mood changed and apologies were given, with a subtle inference that the problems at the hospital were almost, at that current time, insurmountable. As for closing the operating theatres, no one seemed to know anything about this, so it was clear that communications between departments were not good. With more apologies, we were told to go home and wait for the next phone call. Our home was a two-hour drive from the hospital. We reached the front door as the phone rang. Could we go straight back as the operation would happen tomorrow? We sat together in the kitchen to consider this new offer. My husband, exhausted but determined, said he wanted to go back. ‘Let’s get it over with,’ he said, bravely.
The operation was carried out the next afternoon. My daughter and I booked into a hotel and spent the day wandering around the city, trying not to notice our fear. That evening, we went back to the hospital. He was in ICU, but to add to our distress, the ICU (Intensive Care Unit) seemed to be staffed by just two over-worked young nurses and a very pregnant senior nurse. When we were allowed to see him, the sight of my always healthy, handsome husband was a shock. The nurse looking after him seemed as baffled as we were by all the machines he was connected to. She was clearly doing her best but was unable to remove a piece of kit from his throat so he could start breathing by himself, as one of his lungs had collapsed after the op. Looking slightly panicked, she called for help and we were dispatched to a waiting room while the offending kit was removed. After an agonising wait, we were allowed to go back to him. He was breathing by himself and it felt like a miracle.
My husband was home and recovering from the bypass operation. He was frail and pale but happy to be with me and our daughter. After a week, his mood lifted and he began to look a lot better. On Sunday afternoon, ten days after the op, I sat down next to him on the sofa in our sitting room. His focus was on the TV screen, but after a moment or two, I noticed he was suddenly very still. I called out his name. He didn’t respond. I knelt on the floor in front of him and as I did so, I saw the corner of his mouth begin to tip downwards on one side. His eyes glazed over and I instinctively knew at once what was happening. I called out to my daughter. She had first aid training and sprung into action.
She heaved her dad onto his side, shouting orders at me as she spoke to the ambulance call handler on her mobile phone. The first responder arrived on a motorbike within fifteen minutes. By this time, my husband couldn’t move or speak. The paramedic put a cannula into his wrist and explained gently to him what was happening. It was clear my husband heard nothing.
An ambulance arrived and he was taken to the hospital, with me holding his limp right hand and sitting beside him as the vehicle, old and well-used, clattered along with the lights flashing. The Accident and Emergency unit at our nearest hospital was packed with sick people and chaotic. We were left in a corridor, my husband on a trolley, still unable to move or speak but pulling at the blanket that covered him with his left hand. He was wet with urine and his eyes told me he was terrified.
Finally, after half an hour, I walked to the nurse’s station and demanded he be seen by a doctor. Something about the tone of my voice must have resonated because he was immediately taken into a cubicle, where another nurse tried to do an ECG, but the machine wasn’t working. She apologised and ran off to find help. Finally, a young doctor appeared and examined my husband. He looked worried and told me he was going to get the Registrar. Another older man appeared and took over. Suddenly, we were on our way to the MRI unit for a brain scan.
What the scan showed was that a blood clot had travelled up his carotid artery on the left side of his neck to his brain, where it had destroyed some brain cells; hence his inability to speak or move his right side. They told me that the blood clot was probably connected to the bypass operation. After the MRI, he was taken to the stroke ward, cleaned up and put to bed. He was now able to recognise us and knew where he was. We stayed with him until three in the morning.
The next day, I rang the ward. The nurses were getting him up and he was walking. It was the start of a long road of rehabilitation. He was moved to the rehab unit where he stayed for a month until he was able to walk unaided and his speech began to return, though he had Aphasia and has lost some executive functioning. It is vitally important that people who have experienced a stroke are seen as soon as possible after the event has occurred, to help prevent irrevocable damage to the brain. The brain cannot regenerate itself, but new neural pathways can be made if a stroke sufferer is treated promptly.
He is not the man I married. He is someone else. He is brave and determined and unwilling to accept that his stroke and the genetic defect of his heart that was discovered following tests will diminish his life force. He now had a pacemaker to help his heart and every day is a step along the recovery marathon. Some days are harder than others. Some mornings his silence tells me he is grieving for the loss of the person he once was. But he is walking and talking and following a further assessment of another recent brain scan, we have been able to see that the rest of his brain is in good shape. We also saw the black hole that showed us where the blood clot had created damage.
Our NHS did their best but I wake up in the night and wonder how much responsibility this government should take for what happened to my husband and the thousands of others left waiting in ambulances and corridors, unable to be seen immediately. If there had been more trained staff on duty, if the consultant hadn’t been so stressed about the situation at the hospital that he’d had to tell me to go to the Press, if enough pre-op checks had been done, including a doppler x-ray on my husband’s carotid arteries, if the ICU had not been so under-staffed, would he not have had the stroke? Who can say?
The fact that this government has systematically worn down our health care system for years with inadequate funding and a complete disregard for ordinary people like us, is criminal. Now, we are dealing with an untruthful, intransigent Prime Minister and a Pandemic. Will the NHS be surreptitiously changed into a private health system, where only those who can afford care will get care, and those who can’t, will suffer and have no redress?
Our lives have changed. I am now something called a Registered Carer for my husband, which is ironic as in my past career as a theatre director and a playwright, I wrote and produced a successful play called Carers which toured the UK. My time is dictated by my husband’s needs, so my work as a writer is intermittent. But I would not have it any other way. I love my husband and his fortitude and resilience, his courage and persistence to get better day by day is a wonder to watch.
I have nothing but praise for the doctors and nurses and other staff who, under enormous pressure, try to keep our NHS running to the best of their ability. The government has promised extra money but when you investigate this much-made-of offer, you see that it is not what it seems. When, oh when, will we have a government who understands what people need, who does not manipulate the electorate, who is honest and open, who spend real money on healthcare, education, social care, the elderly, housing, benefits et al? Not pretend money, not made-up figures on the side of buses, not bluster and smoke and mirrors. When will we have a government who understands that they are in paid jobs to look after the people and the country, not see things purely from their own point of view which unfortunately appears to be all about Tory idealism and cant?