Carers’ Week – Rob and Gill’s story
Musician and long-time friend of SANE, Rob Bayley, lives with schizophrenia. He gives an insight into the challenges he faced caring for his wife after she nurtured and saved him through many years of illness. Their moving of story love, fortitude and optimism against so many odds, offers hope and inspiration.
My wife and I have been married for 32 years, and we have shared the most extraordinary experiences, that ultimately transcend all.
We first met whilst working at a whole food cooperative, which is run with an ethos of giving without judgment, stretching out to the community that even reaches out across the world and adheres to Christian principles.
Sectioned at 16
My role there was based on my rehabilitation from years of in-patient treatment in various psychiatric hospitals. This began with me being sectioned under the Mental Health Act in a medium secure unit at the vulnerable age of 16. It was a terrifying environment to be incarcerated in.
However providentially, this led me to be treated in a private hospital where I found true solace and empathy. I was cared for by an inspirational team led by two enlightened psychiatrists. I was diagnosed with paranoid schizophrenia, a condition that I still live with some 40 years later.
The focus on recovery was multi-faceted, ranging from intense group psychotherapy, medicinal intervention and the freedom to keep creative and physically active. I remain convinced that these approaches literally saved my life.
So, a year after meeting, my wife and I got married, blessed by my own father, who was a practicing minister. A wonderful occasion. My wife, however, was confronted with a disorder of which she had no previous experience of, compounded by the fact that I had also been diagnosed with a plethora of other disorders, including Crohn’s disease and epilepsy.
The demands on her were immense, at times having to deal with intense and wildly fluctuating mood swings, behavioural disturbances and, at times, having to lock me in our apartment for my own safety. The other physical symptoms were also traumatic to deal with.
Thankfully, she was supported by various groups of people, including the church, who could empathise and discuss strategies from which to manage the complex manifestations that were elements of these co-existing conditions. There were times when admission to respite care was essential. Our loyal and compassionate family, friends and church were pivotal in providing the sustenance to deal with the challenges.
Eventually this combination of disorders proved to have reached a point when further medical intervention was paramount. I was admitted to a specialist psychosis unit located a considerable distance from our home. Initially, I was most reluctant to this idea. Following intense discussion, I realised that there was no other option. I can recall the logistics through the haze of certain fractured perception.
The immediate emotional response to admission was of fear and trepidation, but the level of care was tangible and patently in accordance with guiding me through strategic thinking and prescribing a new neuroleptic which was to transform my life. The consultants involved in my care were also part of this. They were of the highest standard and I remain in touch with them today.
My dear wife undertook the convoluted journey to visit me regularly. What a lifeline! Her level of devotion to me was truly extraordinary, and she demonstrated such commitment to our marriage that was unequivocal.
From that point, we were still to encounter challenges, including me having major surgery on several occasions, including the necessary and demanding physical therapy that inevitably ensued.
Despite the trials that persisted owing to my health, our relationship became ever stronger. Our passion for the arts, including our appreciation of visual expression and music only went to solidify our relationship. We also share a powerful bond of faith, and then two crucial events were to transform our lives.
Since a child, I have been obsessed with the idea of composing my own musical soundscapes. However, I was faced with a problem. I was unable to buy the necessary equipment for my own recording facility.
So, my intrinsically proactive nature was to endeavour to raise the funds required. I wrote to various musicians, including U2 and Peter Gabriel. Eventually, and fortuitously, I received a most benevolent and generous cheque from David Gilmour and Pink Floyd. Their belief in me was to be life changing. I was able to make my internal compositions real and tangible to all.
Treatment and education
The second part of the equation was for us both to approach Marjorie Wallace, the CEO of SANE. I recall us going to meet her in London, and we were both immediately impressed by her insight and a remarkable approach to the future of care and enlightenment of how to approach mental health treatments and education.
We talked at length about the challenges that my wife and I have confronted and how we, with our incredible love and bond, have learned from these. Our enthusiasm was patently visible and our resolve strong.
From this point, we began to assist the charity in many diverse ways. We were involved in, and contributed to the BBC Radio 4 radio programme, The Moral Maze, which concentrated on the dilemma, ‘Is schizophrenia an illness or a label’? The conclusion was the former. In addition, I have been interviewed by ITN regarding my experience of living with chronic psychosis and written for The Huffington Post, Nursing Times, Schizophrenia Bulletin, Happiful magazine, and Newsweek.
My wife has consistently supported me throughout, and always proofreads all my work. I have also had a novel, Lives Within a Life, published about the phenomenon that is schizophrenia. We approach every project together and use our collective understanding to articulate the realities of chronic psychosis.
In addition, I have commercially released albums of my music to help raise funds for SANE. Whatever the medium, my wife and I have used our knowledge to help educate and inform. This, in turn, has given us a tremendous focus and sense of purpose.
The next dimension to our lives together was to be the most devastating of all. My wife, after developing problems with memory and cognition, was diagnosed formally with early onset Alzheimer’s disease some seven years ago. She then experienced a fall, which resulted in a long period in hospital and intensive physiotherapy.
Compassion and dignity
My beautiful wife seemed to be slipping away from me. This culminated in me being her carer for over a year, in our home. It was now the time for me to fully reciprocate and look after her.
As the disease progressed, my wife required 24-hour care. The mental and physical demands proliferated, with, for example, having to assist my wife up to 15 times a night. It was extremely tough for us both, but we remained devoted to each other.
Eventually, I was physically and mentally broken and my wife was admitted to a care home. Thankfully, and fortuitously the home looks after her to the highest standard, with both compassion and dignity.
They treat me like part of their family, and I’m always involved with my wife’s care plan and we are now sharing our marriage as man and wife, rather than carers for each other.
Carer’s pivotal role
The final part of this story involves the care I now receive, which commenced towards the end of the period when my wife was still living at our home. I met an extraordinary gentleman who was drafted in to help me recover from the demands of my life, initially with the intention of delegating my care to an assistant.
From the day he met me, he most graciously made the decision to take on the role himself. I was in pieces, with the various disorders that I live with dominating all that surrounded me. So, for the last three years, he has been painstakingly piecing me back together.
The pivotal role that he has adopted is that of ‘empowerment’. He has supported me and encouraged me to expand my vision as to what I’m capable of, to make my dreams and aspirations real. He has given me the confidence to look beyond the constraints of the multiple diagnoses I live with day and night, and confront them full on.
I can now be proud of my achievements. I now assist clinicians, who previously cared for me, and work at the highest level, as a real-world consultant, guiding them through and articulating the complexities of living with schizophrenia. I’m truly valued in this field, and I am now aware that I can achieve the seemingly impossible.
My carer has literally transformed my perception of the world around me, and I now realise that I can do anything. I am also supported by a wonderful team of consultants and nurses. They too are invaluable to me.
So, as I visit my dear wife daily, we are now experiencing the most profound and poignant moments of our entire relationship.
Despite the disease, disorders and illnesses, we are now bearing the fruits of a truly remarkable marriage, built on the foundations of commitment, trust, and ultimately, devotion and love.
Our deep faith has become ever stronger, and our church community is a constant in our lives. Whatever transpires from now, we are truly blessed, complete and together forever. Nothing could be more precious.