In chapter 14 Jane describes the growing impact of Dan’s illness on her life. To access previous chapters, visit Jane Read’s Author Page.

Chapter 14.                           

JANE

 

“We do not have to visit a madhouse to find disordered minds.

        Our planet is the mental institution of the universe.”

Johann Wolfgang von Goethe

 

 

We cope in a determined fashion at first, but after a few weeks, the impact of our crisis begins to take its toll. Graham is frequently close to tears. I am struggling to function, repeatedly walking around in a daze with a permanent headache, forgetting what day it is, missing appointments, then feeling guilty when I’ve let people down. I can’t seem to manage any ‘normal’ life at all.  I try to rest for part of the morning if it is possible, knowing that I will need to gather my strength for the afternoon visits to Dan. The daily bouts of weeping have washed away my characteristic optimism, exhausting me in the way a bereavement does. We do our best to describe this situation to our employers, having little or no idea how long our crisis will last, nor how long we will be caring for Dan in the future. The school where I’ve worked for ten years in various roles and where both Dan and Em were both pupils, is very supportive. When I try to return, a colleague asks me,

‘So, what are you doing back here in school, while all this shit is still going on at home?

It dawns on me that I can probably ask for more weeks of compassionate leave while Dan is still in hospital. I need as much flexibility as possible right now. My counselling work for Relate is put on hold for now and the receptionist promises to cancel my client sessions.

We are grateful that Graham’s current job is much less intense than his previous position. He can continue to work from home and although he claims to be doing ‘barely half a job’, Graham is such a thorough and conscientious worker, his ‘half a job’ will be worth quite a bit more than some people’s total output. Working under great pressure with difficult time constraints and inflexible deadlines, is something he grew accustomed to during his years of directorship in the corporate world. It’s a relief that the relentless demands on his time and the long-haul travel involved, had come to an end before our current crisis but we are also grateful for the financial security they provided. Many people find that unexpectedly becoming a carer of a close family member, has the effect of throwing them into financial crisis, on top of all the other stresses.

Rob runs his own music production business and although always busy, he is still his own boss, so there can be some flexibility around the hours he works. Tom is completing medical placements so he can’t easily take time off, but he keeps in close touch, phoning us every day and often visiting at weekends. His wife, Cath, is due to give birth to our first grandson in January so we are reluctant to involve her too much.

Dan has been prescribed olanzapine, a common first choice of anti-psychotic for patients experiencing mania. His belief in his special identity prevents him from seeing the necessity of any treatment. He isn’t fully aware of the potential side effects of these drugs quite yet, their sedative nature and the appetite increase they will cause, leading to weight gain. I am sure he’d be even more reluctant to take them if he knew. I begin to wonder if this illness and subsequent treatments, will severely limit his prospects as an actor. I have not been able to let go of this dream for him quite yet. Graham is more realistic, but says there is little point in speculating about anything at this stage. We need to remain focussed, to concentrate on one day at a time, as every day brings new challenges.

“I’ll show you what the doctors did this morning mum!” Dan lay flat on his back on the hospital bed, his face beaming ecstatically, his eyes wide, his arms outstretched.

“They put something onto my wrists and ankles and my side. Here, here and here!” He said touching each part in turn. “What does that remind you of?”

He is animated and excited again. I am guessing that he is describing an electro-cardiogram (ECG), but I imagine that in his mind, he is thinking about the crucifixion wounds of Jesus. My heart aches to see his misguided joy as he extracts exciting meanings from everything that takes place. For me it is just further evidence of how unwell my son really is. I know I must listen to him whatever he is saying, but I also think I should keep my responses grounded and try to keep Dan in touch with the real world.

‘I expect they were testing your pulse rate Dan, making sure that you are physically fit and healthy.’

He told me that he had gone into a trance-like state and felt completely relaxed whilst they carried out the tests.

“I was sure they would find no pulse at all however hard they searched. Then they would be forced to realise who they are dealing with.”

On the Thursday of that first week, we are introduced to Leo, Dan’s key worker, a young, earnest looking care co-ordinator, with wide blue eyes and brown unruly hair. He is part of the Trust’s Early Intervention team, assigned to visit and get to know Dan, accompanying him on his journey towards recovery. We have thousands of urgent questions, many of which can only be addressed by a psychiatrist. Even then, there seem to be no definite answers. From the start, we find that our own instincts about what is best for Dan and our own research into wider sources of information, are the things we rely on the most.

We are also visited by a ‘Family support worker’ in these early weeks, a sentimental woman with a very silly voice who arrived on a pink bicycle, adorned with plastic flowers. She is inept and uninspiring and keeps repeating to us ad nauseam that we are doing a ‘really-good-job’ with unnecessary emphases on each word, but with little idea of how we are actually coping. Maybe she uses this meaningless phrase with all her clients. I realise I am lacking tolerance right now, but she always seems to be on sick leave or on holiday when we most need advice. I catch sight of her one day, in town when I take a short-cut through a department store. She is choosing expensive perfume with a smile on her face. I can’t help thinking,

‘It’s alright for you, living your life, taking time off and spending your salaries on expensive perfume, while we are left struggling on our own.’

The information leaflets given to us by the hospital and the clinics, are all too basic and often quite patronising in tone. We want to arm ourselves with as much knowledge as we can about this baffling illness. We need to be properly informed and educated about all of this.

Always organised and ever thorough when collecting information, Graham assembles several large ring-binders of articles, medical documents, hospital letters and important contacts, over the course of the next three years. He spends hours putting them all in order. Watching him do this provides me with a sense of security, a confidence that he is still in control. I like to think that at least some of the answers we need, can be found in those files somewhere. I also start buying biographies, memoirs and medical textbooks about psychosis. Other people recommend further reading to us. My own personal diaries and records are kept up to date, minutely detailed accounts of what has taken place each day. We find that they provide us with a useful resource for tracing any progress made, as well as keeping an accurate record of dates when Dan’s meds have been raised or lowered, or when we have noticed changes in him.

But despite our careful research, there are times when we feel completely alone with our problems, such as during the Christmas period after Dan’s discharge, when we need to check his dose of anti-psychotic medication, suspecting that it is too high, too numbing and too sedating, but we find it impossible to get hold of anyone to ask advice.

It is a sad task to have to visit the vast, red-bricked Victorian structure of York’s Bootham Park hospital every day, a place which not very long ago was referred to as the ‘lunatic asylum’. We enter its doors anxiously, dreading what we might find. But there are small compensations. The visitors’ lounge with its big bay windows and old, black leather settees, is often free, and is somewhere we can be with Dan uninterrupted. He is free to ‘preach’ to us in private, or he might lie down and rest quietly for a while. During his moments of fatigue, he lies curled up, eyes closed, his head on my lap, allowing me to stroke his brow and massage his scalp as he drifts in and out of sleep for a few minutes.

We are sorry to see how few of the other men have visitors. They appear neglected by their families and rejected by society. We never miss a day and often come twice, prepared from the outset to make whatever sacrifices necessary, to put our own lives on hold until our son’s recovery is achieved, however long that might take.