A carer’s perspective on the recovery journey | Submitted thoughts and stories

Home

Stories

Submitted thoughts and stories

A carer’s perspective on the recovery journey

Author: Valerie Gould
Published: 23 August 2005

Valerie Gould discusses the impact of her son’s illness on both her life as a carer and his own, documenting their journey together from crisis to recovery. She also shares her thoughts on the current treatment and care available for those suffering mental health issues, and the power of mental heath practitioners and society’s expectations on both carer and those affected by mental illness.

On 11 February 05 I attended a day’s seminar, which included a presentation by Simon Bradstreet of Scottish Recovery Network. I was deeply impressed by this presentation and truly delighted to know that the concept – even the word recovery– should become part of the mental health world. It was suggested to me that I could write about my experience as a ‘carer’, and that perhaps my son would also consider sharing his experiences as a ‘sufferer’. On discussion with my son and husband, we agreed that in large part the experience of carer and sufferer are woven in together; I am sure that all in good time Tim will be pleased to share his own story.

Tim’s illness began just over seven years ago, accelerating into crisis very quickly, at which point he was sectioned into hospital and given a working diagnosis of schizophrenia. The impact of reaching that point in a few weeks by way of terrible worry; signing committal papers; psychiatric nurses trying and failing to take Tim forcibly from home; the Police eventually succeeding; the true terror and grief for the “loss” of our son, and the dread of what the future would hold, were utterly devastating.

Included in this are, of course, our other children - in 1998 aged 23, 21 and 19. They had not only to cope with their fright and sorrow for their brother, but also the horror of their parents’ grief and fear. My husband and I realised quickly that we would have to steady ourselves and keep as calm and focussed as possible to properly support our other children through the trauma, whilst also encouraging and aiding them to go on with their lives. We were careful to always ‘be there’ for them as much as we always had been, and kept as light as possible when telling them of Tim’s progress or otherwise. In spite of our efforts, the impact on our children, and our extended family, was immense, but they pressed on, and in practical terms did not falter.

We realised very quickly that everything about mental illness is stacked up against the sufferer – what greater nightmare can there be than to suffer a disease which destroys your life and your person. A disease which evokes little sympathy, with no enfolding care; which evokes rather - alienation, fear and eventually a puzzling regime of treatment with an underlying hint of hostility and blame.

We could see quickly too, that it is not just the sufferer who needs a recovery path – it is also everyone else who falls within the illness’s orbit.

Early on, one becomes acutely aware, particularly through bystanders’ eyes, that mental illness is a messy business which will spill out of any attempt to box it up neatly. People in general cannot come to terms on any level with the open ended-ness, the chaos, and the duration. And all the while, there is the unspoken judgement that the sufferer could just make more effort to behave better and get on with their life, and that the carers should simply be more firm in the handling. This fact is very much part of the carer’s and the sufferer’s story.

We had no knowledge of mental illness and were stunned to witness the excruciating, consuming pain of the passage from full blown psychosis to a grim and horrifying reality.   But, even at this stage, we are absolutely certain that ensuring and enabling Tim as central and vital to his own recovery was of immeasurable importance. We are well aware that we have intimate experience of only one sufferer, but Tim’s recovery is proof of this fact (unless we are super exceptional people, or simply lucky). From the start we held firmly in every possible way to enabling and empowering Tim to understand what was happening to him, and to work at every stage with whatever degree of strength, insight, energy and will he was able to muster. Also, in view of his exhausted state, we focussed on care appropriate to physical illness. I am certain this attitude at this point was a merciful relief to him, especially in view of the miserable worry that was awakening in him at his behaviour when psychotic. So to have gentle careful treatment with no hint of judgement or blame (even implicit) allowed him respite to begin to recover.

In the early days of the passage out of psychosis I could see how tempting it was for him to return to his psychotic world which, at that stage, seemed preferable to reality. This, like many other features of his journey, seemed perfectly logical to me and not to be discouraged.   The to and fro and gritty negotiation with himself I could see (and has proved to be) a necessary step in his recovery.

We would be the very first to recognise and acknowledge the especial difficulties facing all mental health professionals and, of course, sufferers. However, we feel there is a danger of all of us being held in thrall to the inherent characteristics of the mental illnesses; from the comparatively limited medical certainties which often leaves doctors with the relative discomfort of an empirical approach, the multiplicity of variants, even within the same diagnosis group - to the unpredictability of the course and outcome of any single sufferer. It is unsurprising, given the large number of people the medical profession deal with, that they have developed a culture of treatment that seeks to give an overlay of structure in what can be an otherwise chaotic world. Unsurprising, also, that the structure is open ended with a reluctance to commit to prognosis, let alone promises of eventual recovery, even in any degree. In our view that reluctance, understandable though it is, permeates the ethos of the mental health world, and fosters a focus upon an expectation of lives that will be lived/managed within the confines of illness. We are very hopeful that there will be a sea change in this regard, which will promote an approach which allows for the potential of recovery.

Five years ago, and two years into Tim’s illness, we knew -Tim, my husband and I - that we would have to find our own way through the impact upon Tim of all that beset him. Tim had concluded that the main focus of the mental health world was upon what might be termed ‘normal life’, which he felt was merely a construct not necessarily representing any real recovery from illness and passage into wholeness. Tim wanted to work his way towards what he termed ‘normal mind’, which he felt would be the strongest foundation upon which to build his life. So – he was committed to taking 10 mg of Olanzapine daily, declined any add on meds, kept his quarterly check-up appointment with the Psychiatrist, and began what has been a very slow but steady journey.

Obviously, the previous two years, containing as they had acute phases of illness; dealings with the medical profession, searching out different views of other therapies, voluntary agencies and carers, reading literature of all sorts, etc, etc, had taught us a great deal. But, in truth, in view of our belief and instinct of what was right for Tim, the main tenet throughout has been that at the end of the day and when all was said and done – we were on our own. We are well aware that if Tim had gone through the system without our support, he would have been housed, perhaps found some sort of occupation, and maybe given therapy and other support. But it is our firm conviction that, for Tim, this would not have fostered the passage into recovery that he has made. Not least because his adolescent years had been subsumed by illness, and the transition into adulthood, which would have to be made whilst grappling with the impact of a difficult illness, was of paramount importance. In our opinion that transition, especially in troubling circumstances, is best achieved, paradoxically, in an environment which does not have the implicit demands of full independent adulthood - even the institutionalised adulthood offered by the ‘system’.

Over the last seven years we have learned patience. There are no quick fixes to recovery. The only quick thing is the catapulting out of the floridly psychotic state by medication which, as I have already described, is an appalling and excruciating experience - in Tim’s opinion, worse than any aspect of psychosis. Everything else is learned and pieced together fragment by fragment, with the person – part original, part new – slowly emerging.

As we have gone along I have spent many, many hours listening – often enough long into the night. I know the fact of me being available to Tim at any time has been of immeasurable benefit. I am sure, in a world of timetabled sessions, this would be counted a luxury. But actually, to be able to talk over any and everything, when you want or need to, with an attentive, careful listener who requires no background explanations, and who is able and willing to work hard at being of use in a manner matching the efforts and abilities of the ‘teller’, I count as a basic necessity.

In the early days I could only be a sympathetic and encouraging ‘ear’ as Tim battled with the misery of his situation – his despair, depression, anxiety and anger. From being slender, he became very overweight and almost a compulsive eater; he was unfit; he was a smoker; he was still beset and preoccupied with all he had experienced in psychosis. He was in every sense cut adrift.

Believing in Tim’s premise of needing to gain ‘normal mind’ rather than ‘normal life’, I did not on the face of it address any of these issues directly. I held to Tim’s instinct that time and understanding, by him of his illness, would ‘make the difference’. Tim told us that he would have to relearn himself, to re-educate himself, to gain understanding of what ‘normality’ is. There was a gradual realisation for Tim that ‘normality’ or ‘normal people’ are subject to a wide range of mind and mood states; of neuroses, fears, inadequacies, adaptation, abridgement, highs and lows, self delusion, self aggrandisement, courage, duplicity, cowardice etc, and yet most live and can enjoy ‘normal’ lives. To Tim, who had been preoccupied with the troubled internalised view of himself and the world since adolescence, this revelation was extraordinary. He had imagined normality to be a flat land with a linear progress of untroubled contentment, containment and certainty – a land he could never imagine being able to reach! This revelation released him from the tether of his sense of isolation. It gave him hope, and a blessed relief that the complex jumble that makes up a person is ‘OK’; it is normal, the trick is to keep your hand on the rudder of your own ‘ship of fools’.

He began to look around himself with new eyes, and became deeply interested in understanding all he could of the human mind, psyche and behaviour. Since our initial foray into ‘mind’ literature I had read very little, and realised - who better a teacher could I have than Tim, with myself as the eager pupil of his painstaking and fascinating exploration. He really has, as the saying goes, mined his own experiences for meaning and understanding, for growth and release. He has found information and inspiration from a myriad of people and sources. Of course, when one is open and intent upon learning, one finds lessons and teachers in many guises. This exploration over the past years has formed the backbone and impetus of Tim’s recovery. The saying ‘knowledge is power’ is true, and in Tim we have watched the filtering of knowledge into wisdom, insight and a deep understanding of himself – not least in the context of the experience of schizophrenia. He worked in light of his belief that he could never change his past, but he could change his perception and reactions to it.

Not only have Tim’s studies been invaluable for educational purposes, they have also helped him regain power of concentration, rebuilt confidence and pride. They have given him purpose, focus and enjoyment. This study continues to this day. He has found Carl Jung to have most resonance for him, and he has read widely of Jung’s work. He is also engaged at present on a counselling course, thus extending his acquired knowledge into practical application. It is amazing the distance he has travelled in seven years to be able to sit with other adults helping to unravel the knots! I should add, of course, that Tim would be the first to emphasise that he still has his demons to battle, and sometimes has the sneaking suspicion that there might end up being more to this ‘normal’ business than meets the eye; and on a weary day he can worry and fret away with the best of us! And, of course, one must never forget the responsibility of health – on very weary days there is always the temptation to hide behind, even a tiny bit, the protective shield of illness where little is expected of the sufferer.

Which brings me to an issue about which I feel very strongly - the business of expectation. Our experience of the mental health world is that expectation falls quickly into the hole of ‘we mustn’t set him up to fail’. This, like so much else, is a blanket; one size fits all, attitude which has the potential to keep everyone ‘safely’ in a world of lowest common denominator. We have worked with everything Tim is, in character, personality, potential, ability and inclination at every stage. But then, of course, we know Tim – a point we made often to staff, always in the hope that a professional, at any level, would seek to know him too. The fact that Tim’s natural character is to be determined, perfectionist, hard working, courageous, imaginative and intellectually curious has been a real help to him and to us - particularly when he understood that some of these characteristics had been working against him in the past, and that his job was to make everything he had within him work for him.

There have been many times when we have wished that the agencies, whose stated aim is to help people in Tim’s situation, were, to put it simply, more useful! There are a surprising number of agencies which can, apparently, be accessed, but in practice, and recognising the issue of useful occupation or employment – given the situation of an intelligent young man who does not want to go down the ‘mental health road’ of supported placements and the like - there is really nothing! The one thing that helps is being allowed to come off benefits to try a job, and then being allowed back on benefits quickly if it does not work out. He has done this a number of times – all the jobs he has found himself, and his experiences in them all have been enormously helpful in his journey. Tim is now very good at dealing with the local offices of various agencies, and knows how to ensure parts of the system, at least, work for him as they should! Often enough we have wished for an employer that recognised his talent and ability, and would not be afraid of his medical history or the fact that he is educated only to Higher level. But we know something will turn up eventually – a bookshop, or people organising interesting conferences or something. Meanwhile he is enrolled to study for two more Highers with a view, perhaps, to higher education.

We have had no fear of ‘failure’ in any area at any time for two main reasons: firstly, we believe in Tim’s ability to filter out of all happenings whatever lesson there is for him to learn, and secondly, we are confident, willing and able to help him in any way we can. So – in the past five years, Tim has tried a number of jobs, he has lived independently, he has travelled abroad and in the UK, he has learned to drive and has his own car, he has taken up a wide variety of study. He has been deeply involved in music – learning a new instrument. He enjoys hill walking, badminton - gaining a good fitness level. He has sought out for himself allergy testing – adjusting his diet accordingly, including giving up smoking and caffeine. He has an interesting and varied social life. He is now slender, having realised that the side effects of his medication had diminished but the habit of overeating had remained - a typical example of how he observes himself. All of this is underpinned by the ongoing efforts to gain mastery through understanding of his illness and himself, in his totality, which I have described above. Naturally, there have been occasions where things haven’t ‘worked out’ – but that’s fine, and we have never sought to wrap Tim up in cotton wool; we and he are not afraid of him being troubled or hurt or even in danger. He learns from all his experiences, good and bad. He has probably gained a great deal more confidence and belief in himself through coping with the bad bits, whilst learning about himself and the world through that coping.

So, today, as we look at Tim, we know he is all that he was meant to be – that the promise in the child is here in the man. We have no fear for him because we know that he can deal with whatever life throws at him – even if that should be a relapse of his illness. He has at his command all the tools and strategies he has forged from his difficult journey, and the knowledge and mastery of himself.

If you’d like to share your thoughts or experiences of recovery then contact us on This e-mail address is being protected from spambots. You need JavaScript enabled to view it or 0141 240 7790 to discuss.

Click here to go back to previous page

Story disclaimer

The stories presented here are for information only. They are meant to inspire hope and show that recovery can and does happen. The stories highlight various examples of recovery and we do not advocate any of these experiences as the ‘right’ way to recover. Recovery is an individual and unique process, each person must decide for himself or herself what will work for them. Please carefully consider any decisions you make about your own recovery and consult with someone you trust if you feel unsure.

See our Submit Your Thoughts pages for details on how to submit a story to us or you can contact us.