The real face of a carer

Listen to the true voices

David McKendrick makes a heartfelt plea for social workers to listen to the experts - the carers themselves - when assessing caring situations

“What? The true face of carers? This is the theme of Carers Week? Listen, don’t ask. You don’t want to know. If you did have a clue what a carer’s true face is, it would frighten the pants off you!”

This is a quote from Hugh Marriott, a carer and author of The selfish pig’s guide to caring, about Carers Week which ran from 13 to 19 June. If you want to know if this is the truth then ask Crawford Fallon. I did and it is. For the last 10 years Crawford has been the sole carer for his wife Elizabeth, who was brain injured after being involved in a hit and run accident.

Elizabeth’s injury came after a night out. The couple were walking home when she was hit by a car. In an instant their lives changed. There was no warning,.they were not consulted and the repercussions of that night have changed their lives completely.

Before the crash, Crawford and Elizabeth were happily married and living in their home town of Shotts in North Lanarkshire. Elizabeth was a nurse specialising in working with infectious diseases and Crawford was developing a career in the mining industry.

Crawford had to give up his job and become a full time carer for Elizabeth. Elizabeth’s injury makes her unpredictable, she can become aggressive and can shout and swear. On occasion she has been violent and has hit Crawford. Elizabeth has hurt herself and talked of suicide. Initially, there were many offers of help from family and friends but these have all stopped. People are embarrassed by Elizabeth’s behaviour and don’t like being seen out with her.

Like many carers, Crawford attends to Elizabeth’s every needs. Over the years Crawford has kept an intimate diary detailing what he has done. He has developed a whole new range of skills, he is an expert and there is quite literally nothing that Crawford does not know about caring for Elizabeth.

Before Elizabeth’s accident Crawford had never cared for anyone, least of all someone with a brain injury, so he has had to learn. This has often been by trial and error. Crawford has made mistakes and each mistake has been costly, resulting in either his or Elizabeth’s distress - or both.

Crawford’s learning has been unsupported with little help. There have been no university tutors, practice educators, senior carers or colleagues to learn from. There has been no safe learning environment and no boundaries. Elizabeth’s personality can change seemingly without warning. But Crawford has become expert at reading the signs - he has to be.

Recently Crawford was visited by a social worker who was completing an assessment. Like all social workers he had a deadline, he had a caseload, he had to complete all the relevant paperwork and had to fill in all the computer screens. Crawford went out to make him a cup of coffee and on his return the social worker was asking Elizabeth how she would feel about someone coming in to help care for her.

Elizabeth became angry. This can happen and when it does Elizabeth can shout and swear or even become aggressive. Crawford knows this, he is the expert. If you read his diaries or ask him to share his expertise he will tell you. Crawford used all of his patience to explain to the social worker that working with Elizabeth requires skill and tact. Elizabeth does not understand the concept of a deadline, or of a report or the need to have your case notes updated.

Crawford has been here before with doctors who have offered diagnosis after diagnosis. He has been there with occupational therapists, dieticians, psychologists and psychiatrists. Amidst all of this Crawford is still engaged in a complex legal battle over the original injury. Losing this could put his home at risk as he and Elizabeth exist on state benefit. Crawford has to care and fight, and balancing both of these is becoming an ever more challenging task.

Crawford needs to be organised - for him this is the key - and his diaries help. He has by now experienced most of the challenges involved in caring for Elizabeth. There is not much he has not dealt with. He has dealt with tantrums, violence, tears, depression, anger and frustration, and understands all of these.

He understands all to well his own burden. Fighting on all fronts is draining and he too is feeling the pressure. Caring for Elizabeth saps his energy and creativity. Like many carers he feels he is the only one who can care for Elizabeth.

He finds it easy to share his knowledge and expertise but hard to give up his role. He worries that someone else won’t care for Elizabeth properly. He worries that the progress they have made will reduce if someone else comes in. He worries that if someone else comes in he will lose his identity.

Crawford likes to keep fit. He finds solace in the solitary pursuit of running. He uses this time to refresh himself, to de-stress, to reflect on what has worked and what he might do differently. Crawford needs re-assurance. He needs patience and understanding and he needs to be involved. Crawford needs to be recognised as the expert.

Crawford and Elizabeth need social workers to understand that their relationship is intimate, that amidst all the frustration and anger there is a bond that has been challenged and strengthened by adversity. Crawford and Elizabeth need each other and they need social workers to understand this.

For Crawford, the important thing is that each professional has an understanding not only of their role but of how all of them work together and understand each other. Co-ordination is the key. If professionals took the time to read up on Elizabeth before they visited her they would understand that change frightens Elizabeth and that when she is frightened the fight or flight instinct takes over. Trying to put together a package of support that will have an impact won’t happen under these circumstances.

Crawford needs social workers to talk to him. He knows the Elizabeth’s behaviour can put people off. He also knows that this can be avoided. New ideas or changes need to move at Elizabeth’s pace, she needs to be consulted and her views sought. Crawford needs to be there to help Elizabeth to understand what is being suggested. After all of these years Elizabeth trusts Crawford implicitly. He knows and she knows he knows.

In Crawford and Elizabeth’s world the professional pressure for social workers matters little. They are sympathetic. They know that social workers work in a busy and demanding environment, that they are often blamed and they get bad a press. All of this is relevant but not important. For Crawford and Elizabeth, these challenges are professional not personal.

Crawford and Elizabeth’s challenges are personal. Their lives are dominated by Elizabeth’s needs and Crawford’s desire to meet them as best as he can. Crawford does so because he loves Elizabeth, their bond is deeply personal and goes beyond any challenge that life has thrown at them.

Crawford has accrued knowledge and expertise. This has been developed in the most pressured and challenging environment and Crawford has retained all of this knowledge. He is desperate to share it. There are no issues of confidentiality - it is theirs and if it helps it is yours.

Yet in helping Elizabeth gain more independence there is a risk for Crawford. If Elizabeth gets the support she needs he needs to re-define himself and there is a risk here. Such a transition will prove difficult. While Crawford and Elizabeth want this, they know that getting it will mean another change. They know this but they still want it.

Crawford has aspirations and wants to go back to university. He sees a future but he needs to know that the present is safe. In order for this to happen, social workers need to listen to Crawford and to learn from him.

Social workers need to ask him about Elizabeth. They need to ask him about him. They need to ask them about them. Social workers need to talk to others such as psychiatrists and dieticians. For Crawford, social workers need to value the uniqueness of his experiences and of his relationship with Elizabeth.

Carers do not feel connected to many of the organisational pressures that are around for social workers. They want a service that meets their needs. The financial pressures of local authorities are not immediate to them. Why should they be? The pressures they are experiencing are just as great. They are personal pressures, everyday challenges to which there is no end in sight. Crawford and Elizabeth need social workers who can listen to and learn from them.

David McKendrick is a Lecturer in Social Work at Glasgow Caledonian University

From Miami to Kilmarnock

On two seperate programmes on BBC this week a sad but all to familiar story was heard from two young men.
In Miami Louis Theorux visited Miami's mega jail. Toward the end of the documentary he interviewed a young man who had just been convicted and sentenced. The young man expressed his relief at his future being settled. Initially Theroux thought that he was relieved to have the matter finished and know that he had some kind of release date. Theroux seemed surprised when the young man advised that his releif was at being safe. Safe from what was going on in his life on the outside, safe from his community.
Monday night it was the turn of a similar young man from Kilmarnock expressing his view that prison was the most positive option available to him. He too expressed that in prison he was safe, cared for and fed. In short he was in an environment he could manage. For many people prison is a frightening option yet for both these young men it offered something desirable.
As someone who has spent most of his working life with young people this is a situation I am all too familiar with. The "outside" is full of pitfalls; drugs, alcohol, struggles with family, struggles with housing, struggles with access to work and training all feature largely for many young people.
What also features largely is a genuine fear of the daily challenges that their freedom has, challenges they often feel unequipped to deal with.
For many young people they are ill equipped for these challenges as they were never given a realistic road map of adult life from those who had the responsibility to do so, parents, carers other family members were unable (and in some cases unwilling) to commit to the development of the skills required to manage their world. Often there were compelling reasons for this, parental drug or alcohol problems, issues with their own physical and mental health and their own restricted access to many of the formal institutuions that develop our capacity to manage diverse and challenging environments. If the primary carers expereienced these difficulties it seemed unlikely that their children would be able to learn the skills that they needed to achieve some form of ability of their own.
Of course societal factors play a key role, the structural inequalites of access cannot be overstated both of the young men featured on the documentries came form equivalent social and economic circumstances. In my own expereience there are not too many rich priveleged young people in places like Cortnon vale, Polmont or Barlinnie.
Interestingly there are exceptions for some young people from these family and economic circumstances. Some manage to avoid prison often through education sometimes through a mixture of determination and luck. What struck me the most was young people who had expereienced such poverty of opportunity were often able to articulate their position very effectively. The term "resilience" is often used to describe this and for me it seems that we as a society should consider ways that we can reward this capacity. I often had discussion with young people where the best I could offer was to say "stick in, keep going, there is always hope", many did and it to their credit much more than anyone else's that they did. For doing so brought no tangible reward. Perhaps we should consider how we develop some recognition structure for those who do stick in, for me they often seemed the most disadvanteaged.
A failure to consider this and any other "new" options certainly wont prevent the stories from Miami and Kilmarnock. For me prison also offers the security and safety to young people that is not availble to them outside. Outside the risk of addictions of other forms of excessive behaviours allow escape for the confusing and unsafe world that young people are exposed to.