STORIES OF CARING FOR SOMEONE WITH A SEVERE BRAIN INJURY: THE PRACTICE OF CARE REVEALED (Part 1)

To quote from this work please reference as follows:

Butler, M. (2007) “Care ethics and brain injury”, Doctoral thesis, Otago University. http://www.severe-brain-injury.com/stories-of-caring.htm

Introduction

The material in this section relates to the practice of the carer. In this introduction there is a brief note about the perspective used in the stories, followed by a note about the skills analysis that was applied to the material. The rationale for dividing the findings section is then outlined. There are several subsections within each section and each section is concluded with a brief summary.

A note about perspective

When writing the ethnography I was faced constantly with the dilemma of trying to describe the outcomes of care, while also making note of how these outcomes were facilitated. Focusing too much on either side threatened to topple the whole edifice. The story of the person with brain injury is easily told as a story of adversity faced and overcome. The carer’s story, on the other hand, cannot be told as a heroic or tragic tale in the same way; it has no conventional denouement. Instead it is a tale of patience and negotiation, meditating on and finding possibilities for another. The story of the person with brain injury could stand-alone and still be understood without any reference to a carer. The carer’s story, however, does not actually make any sense without the context of the person they are caring for.

It is only by combining the stories of the person with brain injury and the carer that it is possible to tell whether their efforts were satisfactory in the end. Therefore I tell two parallel stories. Most of the quotes from the fieldwork notes are about the story of the person with brain injury, usually as told by the carer. The commentary highlights an analysis of the skills that the carer was using. The real conundrum of describing care is that when it succeeds it is as invisible to the outsider as it is to the person being cared for. The task of this analysis was therefore to clarify the virtues underpinning the practice of the carer where they were evident in each story.

Skills analysis

A virtue is more than just a conceptual understanding of situations and moral action, but necessarily includes the component of responding in that situation. Reference to virtues is a useful ways of talking about the practice of care, but in order to really understand the virtues it is necessary to understand in some depth the actions of people on the ground. The goal of the carer was to address the alienation of the person with brain injury. They did this by re-connecting the person with the world using a particular set of skills and taking into account a range of factors described below. In telling the stories this level of analysis is not made overt, but it is implicit in the way that the activities and the support from the carers are described in the findings. I found that it usually only became necessary to draw attention to this kind of analysis when there was some suggestion that its components were not being attended to.

Ergonomics: an understanding of ergonomics consisted of matching the person with brain injury with the activity and the environment. There was a list of things that needed to be taken into account when fitting the person with an activity: for instance, likes and dislikes, aptitude, age, gender, race, and cognitive capacity of the person with brain injury. It was also necessary to take into account the location and extent of the injury; the age at the time of the injury, and the amount of time that had passed since the injury; whether the injury was one of a series and any secondary issues that had arisen. In relation to the task it was necessary to consider the task demands and the skill level of the person; the possibility of breaking the task into manageable blocks; possible alternatives to the task; the pacing of the task overall; and the possible outcomes from the task. In relation to the environment it was necessary to think about the options for environmental change; the interaction of reinforcers in the setting and a consideration of variables such as the degree of stimulation; the availability of the activity in this environment and the appropriate fit of the activity within the environment. An example of effective understanding of ergonomics could be seen when the carer ensured that there was flexibility in the timing of activities.

Ambience: the achievement of authenticity involved knowing the kind of ambience created by a particular activity. Authenticity describes an ambience that captures the quintessence of an activity. For example, when Dean bought a new house Mike believed that it was his own, because he was so involved in the whole process. In this scenario the fact that his grandmother disagreed with the move only enhanced the ambience of the project and made Mike feel even more that this was about making a place in the world. The project lacked authenticity in the sense that Mike’s belief about ownership was not strictly true, but it carried enough of the ambience of ownership to satisfy him in the ways that were most important to him. Different levels of authenticity were evident also in the various supported employment arrangements that are described in this chapter. For example, George was able to experience a great deal of the ambience of being a worker on a building site, although the work strictly lacked authenticity since he was not being paid.

Affordances: The concept of affordances is adapted from the work of Gibson (1979) and it shifts the focus from the individual to the relationship between the individual and the environment. Affordances are the possibilities, good or bad, that arise from a particular activity. Each kind of activity has its own set of affordances, including a distinct way of relating to others through the medium of that activity. A good understanding of affordances is critical because there can be clues buried within any activity that give some indication of what to do next. A good example would be the way that George bought a house, became a landlord and eventually got into real estate.

Practical considerations: an understanding of practical considerations is shown by the way that the carer takes into account all the things that impact on the possibility of an activity being carried out. They include financial, physical, human resource availability/constraints. An example of this would be the way that Joanna moved the whole care package to Auckland when George went for a trip. Another example was the way that Lillian and Bill ensured that Arlette got a house of her own by giving her all the backpay for their attendant care.

Rationale for the structure of this chapter

The practice of the carer is ultimately about helping the adult with brain injury to find a place in the world, so they are no longer alienated. The carer does this by helping the adult with brain injury to develop and sustain a life expressive of the human condition. The human condition is described here as having three parts, which re-words Arendt in order to make the different parts relevant to the material in this research.

The first part of the human condition is subsistence activity. This includes everything that is necessary to run a household. It therefore touches on the cooking and cleaning side of things, as well as the humdrum parts of parenting and relationships. It includes the ways that money comes into a household in order to hold it all together. In many ways it is about the ways in which the carer ensures the safety of the adult with brain injury. I therefore call this section ‘subsistence’ to reflect the way that it was about dealing with the everyday matter of keeping body and soul together.

The second part of the human condition is productive activity, in the sense of making things. It was often done outside of the home and in most cases the principal carer could not do this work alongside the person with brain injury. Having paid care hours available was therefore critical for engaging in this side of life. The care hours in this case were used to employ other people who could facilitate the work being done, and the work of facilitation was generally done outside the immediate family situation.

The third part of the human condition is about making a place in the world. A degree of separation between the carer and the person with brain injury was necessary to achieve this in every case. The carer continued to put in much the same amount of care, but they learned to re-negotiate it and do it from a distance. This was an indicator of the highest development of the carer’s skills.

Subsistence activity

Subsistence covers those elements of work that are involved in keeping body and soul together. It includes all those repetitive activities that are necessary to keep life going, where things are produced and then consumed. Subsistence for the person with brain injury revolved around four basic areas: running the household, parenting, the household economy and paid work. The work of the carer in enabling them to engage in these different activities is described in this section.

Running the household

All the main carers in this study contributed to running the household for the person with brain injury in various ways, but this was particularly the case with the young men. For instance, Joanna still cooked for George every day and he got Jack to fix his cars for him; Mike would occasionally make a meal, but generally it was done for him; John had everything done for him. On the other hand Hakui did all the cooking in her house and a substantial amount of the housework. This was the same with Arlette, although she got more help from her parents with cues to help her do the cooking. Overall, the nature of help given with this area of life was different in each case, but it included a strong gender bias.

George was often present during our interviews when these happened to take place around lunchtime. During the study year he seemed to come to the family home most days for food. This was very important during the transition stage as he moved into a situation where he was living away from home. It helped Joanna to stay finely tuned to all the things that could possibly happen around him, even though they were not living together. He made no attempt to hide anything from her, so she knew what needed to be done and how little he could be depended upon to do these things. There was a constant tension between helping him to learn through consequences, and ensuring that he did not get himself into too much trouble. The nature of the brain injury meant, as she noted here, that he was both slow to learn from his mistakes and also reluctant to acknowledge that he needed help:

Just before Christmas he did not pay his bills, he told me they had arrived and I said to run down and get them. But because of that concrete thinking he was off, he wouldn’t do it and then I had to sort it all out for him afterwards. He said that he had learned a lesson afterwards and he would let Ben help him, but he does not learn and he is already saying that he is fine doing it by himself (FN 185).

Car maintenance is related to the general running of a household, especially since George generally drove old cars that needed a lot of work done to them. Jack was skilled in working with cars and George called on him a lot for help. Quite often this involved fixing up jobs that George had “botched” through his propensity to take a hammer to things that caused him a problem (FN 17). Sometimes it seemed that George was simply being lazy and he wanted his dad to do the work because he couldn’t be bothered. This was not done in any way that could enhance the relationship between father and son. In this incident I was talking with Joanna. She looked at the mini-drama unfolding in the room and said as an aside, “men and their dads are a thing!”:

George says, ‘will you give us a hand with the brakes dad?’ There is no response. I think that Jack is waiting for a ‘please’, and it’s likely that he had other plans for the afternoon. Jack goes off and gets himself changed. Jean says to George, who is playing a game on the computer, ‘you’d better go George and move the car or he is going to get mad and not do it.’ George gets up and goes out. I see the pair of them at it when I am leaving, but after a brief chat with Joanna at the car, I notice that Jack is working alone. George has simply cleared off and left Jack to do the whole job (FN 55).

Mike lived in a group home and he had even less responsibility than George for managing a household. Most of his unemployment benefit went towards the household expenses (I 591) and he did some cooking, but it struck me that this was a fairly rare occurrence. Sheila was in the house more often than any other carer and she ruled them all with an iron hand. Cooking was part of her role, for safety reasons, she said, “they all cook, but not when I am on. I have been food poisoned too many times, and I do not let them cook for me. I cook for them when I am on” (FN 556). Unlike George, Mike was expected to do some of the housework alongside the other young men living in the house, but they were organized into the task, rather than taking responsibility for it. Sheila told them what to do, and ensured that they did it in a reasonable time scale:

I go to the house and it is a tip and I say to them ‘Well guys, we are going to clean this all up and then I am going to take you to Oamaru in the afternoon’. And I get in alongside them and I am cleaning with them. I am not standing over them and telling them what to do. They all have their jobs and I make them do those. But then we are finished and we go off and have a treat together (FN 556).

Sheila’s approach was much more self-consciously rehabilitative than that of any of the other carers. She had attended numerous training courses and she had proved her worth over the years as someone who could manage difficult behaviour. However, she sometimes ended up in trouble with professionals who felt that she over-stepped the mark, and she in her turn was very critical of the same professionals, who always seemed to make a special exception of Mike, saying “it’s all right, it’s only Mike” (FN 564). She drew on her own background as a mother who had to bring her own children up in difficult circumstances:

I treat them the same as my own family and I get pulled up about that a lot, they are not my family and I say I know that, but why should I treat them any different to my own family, like if I want something done I will ask them if they would do it and they say no and I say well go and do it anyway (I 596).

Subsistence for John was at a much more basic level than for the other people with brain injury. He was able to walk and feed himself, but almost everything else had to be done for him. He required constant attention, and Marie was closely attuned to the nuances of his behaviour. She was able to interpret when agitation might mean that he needed a cigarette, or he should not have had the last cigarette; it might mean that he had his meals too close together, or possibly too far apart; he might be dehydrated, or there might be too many people in the room; she monitored him when he ate, alert always to the danger of choking. She was attentive to his physical health and assiduously applied lotions to every possible rash or sore part. She dressed and undressed him, heated the house and ventilated it, in tune with his body clock that was skewed by the brain injury; Marie hated sending him away for even one night, because nobody else seemed to be able to look after him properly. She had fine-tuned her system around ensuring that his food, drink and temperature needs were met. He could not give the feedback himself and when his needs were not met he became excruciatingly difficult to handle for some time after. Marie still celebrated what he could do and ensured that he got plenty of opportunity to do it. There were nuances of self-control and autonomy that he could achieve when the care was operating at an optimal level:

Yes, dad, if he is well rested, he can make his own needs known a lot easier. To me, that’s what it is all about, so that he can make his own decisions and choices and also help the carer know what he needs and what he doesn’t need. It is just so important that he has that rest period and that time out. The objective is to give him a little bit more independence, to have some self-esteem and confidence. He has got the ability to communicate, but unless he is rested you don’t see it. If he is well rested, he can make his needs known. Then he can make reasonable decisions about whether he does or doesn’t want to eat. Even having him up at the bench there and having his drink. He can control what he is doing: he is not getting too much, he is not getting too little. He can control things. You just have to have an environment that will meet his needs so that he can do that. I just wish everybody could see this with him. Thank you for being excited about that (I 502).

Arlette got home help and she had her parents next door to prompt her to do particular things and to give her help whenever she asked for it. As a housewife she was responsible for budgeting, paying bills, shopping, cleaning, washing, gardening and putting a meal in front of her husband. Successful management of these tasks belied the severity of her brain injury and indicated the extensiveness of the support she was given. For instance, she could not go shopping without her father to bring her there. His patient waiting allowed her to have the experience of really exploring the activity in ways that were meaningful to her:

I took her shopping this morning. It took two hours to do one hundred dollars of shopping. She refused to get a frozen chicken because it came from Auckland. It’s probably my fault because I go crook at things coming from all over the place and not being local, e.g. something by Watties coming from China. But anyway she said that she wasn’t getting this chicken, so I argued that it was packed by Tegels and she gets other Tegel stuff and that is okay. But she couldn’t see the label and so she was arguing about it for ten minutes. On Friday she goes to put the savings into the bank, so she goes to the supermarket. She might want one thing at the shop. Well, that will take her an hour. Meantime I will be sitting in the car because she often does not want me to go with her. She will spend time straightening out the trollies and the baskets. And I say to her, ‘Arlette they have someone employed to do that’ … but she won’t listen and she has to do it (FN 640).

Arlette was able to cook and it was a connection with her past, but her memory loss and reading difficulties made it a task that she needed help with. Her mum wrote the recipes in a comprehensible format and she also cued her when to do the cooking. The method was not foolproof, leading to stories like this one told by her father:

The other day she was making some biscuits that called for cornflakes. She got to the bit in the recipe that said ‘cornfl…’ That was okay. She thought it said cornflour and so she put a cup and a half of that in it. Heck said, ‘you must have managed to get those cornflakes ground very tiny, I can’t taste any of them’. And she says, ‘what cornflakes?’. Even the dogs wouldn’t eat them. But we all were able to laugh at it (FN 633).

They continued to encourage her to have as much freedom as her short-term memory loss would allow. In the past they had tried repeatedly to put boundaries around her demands, but she simply forgot what they said and then she would become angry and ‘naughty’, which was Bill’s euphemism for behaviour that could otherwise be seen as bloody-minded (or typically brain-injured).

Sometimes she is naughty. The other day for instance I answered the phone and she asked for Lillian. I said, ‘is there something that I can do for you?’ but she insisted it was Lillian she wanted. Lillian was down at the far corner of the garden and I had to go and get her. As it turned out, Arlette wanted her to hang out her washing. This made me cross, because I could just as easily have hung out the washing. It makes it almost impossible to ever get started on anything (FN 648).

In spite of all her disabilities Arlette managed to run a tight house. In fact, sometimes the issue was that she ran the house in such a tight fashion that it became difficult for Heck, her new husband, to live in it. This rigidity is common following brain injury. Heck tells the story about trying to help in the house and having his efforts criticized: “I thought that I was doing her a favor one day taking clothes off the line and folding them, but she was cross with me. You wouldn’t think there could be such an issue about folding towels. I still do sometimes fold the towels though” (FN 631). There was the kind of look passed between husband and wife then that told me it was still an issue for Arlette. Heck was learning to gently assert himself, but generally he did not have much interest in the housework.

Hakui, on the other hand, did not cope well with the general housework. She had several hours of home help a week, but it was never enough to make much of a difference. The agency did not take responsibility for training or supervising the home helps, so Hakui found herself in the position of having to do this. This added yet another layer of complexity into her “one megabyte” brain, as she called it. They were a household of busy creative people, so in ergonomic terms she needed someone who was more of a housekeeper than a home help. It was less a matter of cleaning the floor, than one of finding places to put things. Funding did not permit this and it meant that Hakui struggled to keep herself and her family organized.

Before her latest series of brain injuries Hakui had been very handy in terms of house maintenance. At that time she had thirty hours of care per week and the pay rate had allowed the employment of an intelligent and motivated carer. This man had been a formidable carer, helping Hakui to set up accounting systems and allowing her to complete projects such as putting up banisters and building a playhouse for her children. With the change in pay rates and the reduced number of hours all house maintenance tasks fell to Harry. At the beginning of the study year Harry spent his whole summer holidays painting the house. He had to hire scaffolding, which was expensive on their very limited budget and then it rained a lot that summer, which meant that they had to hire the scaffolding for even longer. Harry was already exhausted and this was the final straw. Hakui could not help him because she was not able to climb the scaffolding on account of her epilepsy. There were days when he was reduced to tears of exhaustion and at times he became angry with Hakui, because she seemed to be “swanning around while he was busting his gizzard” (FN 306).

There was one thing that Hakui continued to be able to do. She always managed to make good meals, including a son with severe lactose and gluten intolerance. She was able to cook without prompting or assistance and she got a lot of good feedback about it: “Harry would say ‘how was your weekend’ and I said ‘well I didn’t do much did I? I slept a lot of it’. And he said ‘come on, you cooked some really nice food’”(I 357).

Her interest and facility with cooking led to the one big project that she got involved with during the year. Marama wanted to go with the school choir to Japan, but the family could not afford to send her. Hakui decided to put in a bid to cater for a group of peace activists over a weekend. It was a national event, but it was hosted locally because Harry was trying to foster new leadership in the peace group that they were withdrawing from.

Hakui was very thorough in her preparations. She was able to draw on the knowledge of an experienced Maori friend and together they drew up a menu and shopping list. Unfortunately, this was the only practical help that she got. She tried to persuade various people to help but they withdrew their offers, as the time got closer. This may have been a symptom of her difficulty in maintaining good relationships. She ended up in the kitchen with only her thirteen-year-old daughter to help her.

I was able to come and help early one day, and was frankly amazed at how well they were coping. One meal would hardly be on the table before preparations for the next were underway. Hakui was calm and in control. She was even able to delegate tasks to Marama and I, while she went off to have her afternoon nap. I left after the evening meal was prepared, with a sense that the weekend had been a resounding success from the catering point of view.

It was also satisfactory as a fundraiser and Marama eventually went to Japan with the school choir. From my perspective it seemed like a crazy thing to attempt and I fully expected Harry to try to stop her. An interesting reflection on their relationship and the kind of care that he gave was that Harry simply left Hakui to get on with this kind of work. He never got involved with ‘women’s work’ and in this case he neither helped her nor hindered her. As it turned out, this was a good judgment call and Hakui was justifiably proud of herself, although she spent a week recovering.

Safety

There are always safety issues around adults with severe brain injury. Safety was not simply one thing that the carers did, but a constant attitude of vigilance combined with an awareness of the effects of the brain injury. For instance, when Hakui jumped out of the car at the traffic lights one day Harry was forced to imagine her wandering around town alone and possibly having epileptic seizures. On this particular day it was arranged that Harry would lead an outing for the peace group. I happened to be on the trip and noticed that the children were a bit subdued, but there was nothing in Harry’s demeanor to indicate that he was under stress. He had two very upset children and a wife who was possibly wandering around the town in an unsafe condition, but he still carried on and did a good job of leading the group. This is the story as Hakui told it:

Harry asked me to make sure that I had the gear packed when he got back from sailing. I spent the whole morning doing this. He got back, fairly tight for time and found that the tools weren’t packed because they were too heavy for me to carry from the basement. He went to get them, grumbling, then got the family into the car. At this point I did not want to make a fuss, but I was exhausted and wanted to pull out. I knew I should have got the gear ready the night before, but I was too tired then as well. I didn’t want an argument, but I didn’t think I could cope with being in a group when I was feeling so tired. We got to the traffic lights and just as Harry was beginning to move off, I jumped out of the car. The children started to cry (FN 326).

That was a difficult day, possibly the nadir of their experiences during the year of the research and the consequences reverberated for some time. A couple of months later I was in the house when Hakui was preparing for another trip. She retrieved the thermos and then found Harry’s wallet tucked into the top. He had put it there for safety during the island trip and had not been able to find it subsequently. Part of the aftermath of that stressful day therefore involved canceling all his plastic cards and getting new ones.

Sometimes the safety issues were about the possible consequences to others of the behaviour of the adult with brain injury. For instance, an area of disagreement between Hakui and Harry was the way that she often kept her son home from school for days at a time. These were idyllic days for Hakui, but in Harry’s opinion it was not the best way of tackling Kawana’s reluctance to go to school. He had particularly difficulty when Hakui took Kawana to town and then Hakui had a seizure:

I think of the day that you took him out in to town rather than taking him to school when he was in one of these moods and instead he went with you in to town and you had a number of seizures during that day and for a little kid to be in town with an adult that was having seizures and taking that sort of responsibility is a huge one for a child as well. So those are elements that have been impacting on Kawana’s happiness as well. And I’m not saying that’s something that you are a big baddie about for doing it, but I am just saying that is something that we need to reflect on in terms of how the whole situation is impacting on the children (I 374).

Hakui was generally a calm person but she did not always have good impulse control. In those times Harry would have to intervene, even as he was flying out the door to work. I walked into the house one day, to find the aftermath of an explosion. Hakui told me the story, but she was full of remorse, tormented with the thought that she wasn’t a good mother:

Kawana did not want to go to school today. He hates school and I often keep him at home. He would not put on his socks today. I lost my temper with him, I completely lost it, it was awful … and I threw a discus at him. Harry intervened, but he couldn’t get the socks on him either. Then he noticed that his toenails were like talons. He cut them, but he wasn’t happy about that either (FN 327).

In the past Jack and George had to think of safety issues around their other children when George was out of control. Since getting funding one of the main successes that they had was in being able to keep him safe (FN 253). However, Jack was fatalistic about the fact that safety was not something that they could permanently ensure and that George could eventually move himself beyond their assistance:

Your kids can do one stupid thing, after you have brought them up right. You can train them as much as you like, but they do that one thing on impulse, and that thing can determine the rest of their life. Because they have to take the consequences themselves, you can only protect them for so long and then they have to take the consequences (FN 43).

Around the time of this research it was the issue of the driving license that particularly exercised them. The problem was that, while George successfully got his license, his abilities were not constant. His difficulties with aggression, restlessness, reading and executive function remained constant. What changed was his ability to cope (FN 183). Sometimes they would pay for him to take public transport, if they could persuade him to this. At other times they were so concerned about his safety on the road that they seriously considered putting him into a situation where his license might be removed.

Jack went down to the police to report that he wasn’t safe. As it turned out there was no one on duty that day, but we had got to that point that we were so concerned about him driving that we were prepared to do that. He is all right a lot of the time, but he is not okay when he is manic. And those times he just has to stop driving. But it is hard, because he has got a little bit of freedom and that is tantalising him to want some more (FN 47).

Joanna worked at not hampering George’s freedom, but she could not allow him to get himself into a situation where other people might be endangered. He might have been capable of many of the jobs that he put in front of her, but he would not have been consistently capable. She was all too aware of the accidents that could follow. In the next excerpt she was talking about how assessors need to take more than a snapshot. George could do something five times and would then fail to do it the sixth time. This could be very upsetting for him and it meant that he could not be left unsupervised on the building site. She said, “George was on the roof the other day. He had not made sure the plank was stabilized and he fell off. Then he ‘lost it’ with the plank, hitting the wall with it” (FN 2).

Joanna had to resist her tendencies to worry over George and occasionally it was possible to witness the struggle that this cost her. One day when I visited she told me a story she had heard on the news about a young fellow getting killed in a nail gun accident on a building site. Then she remembered an incident with George, which made her realize his brush with the same issue turned out for George was something else that she had to be grateful for:

I thought there but for the grace of god because I remember Ben talking about George having the nail gun and wanting to shoot it to see how far it would go and Ben having to explain to him the safety issues and stuff like this and I am just – what I don’t know didn’t hurt me I think Mary. But those are the things, I just think, but I can’t let that come up too far otherwise it will overwhelm me so I sort of push it down (I 289).

At one stage during the year George was very disturbed for a while when he stopped taking his medication. Joanna at the time was distracted with grief over the death of her brother.

It was all mixed up with my brother’s death. The highs and lows would be explained by that alone. But there was a lot of aggro too. And his work went down to four hours a week and often less than that. It was the restlessness that really should have given him away, because he just could not be still, and he had one idea after another batting away at them (FN 36).

George’s behaviour became very erratic and he scarcely went to work. It was such a time, when Joanna was less tuned to his needs, which highlighted how constant her input to him normally was. She did not ignore him during this time, but the management became dysfunctional simply because it was not totally proactive. The family still had to deal with him, in the middle of their own anguish.

The concerns that Sheila expressed about Mike moving to a house with less supervision were all essentially about safety issues. There were many examples that she gave where Mike’s mouth would get him into trouble. In this story she told about how his behaviour could be interpreted as harassment and of serious concern to his neighbours.

I have to stop him from being out in the front garden when school is out, because he starts talking to the young girls as they go past. That’s okay, but he wants to keep them then and he lays hold of them. Then they get panicky. And there was one woman who talked to him for a while, but then Mike followed her home. I had to stop him from doing that (FN 566).

Safety issues were about the little things every bit as much as about the big things. Marie had to protect John in a multitude of small ways, from putting on a peaked cap so that if he started to wander he would feel the cap hitting something, to ensuring that his temperature was maintained at the right level. One illustration of her attention to detail was the fact that she gave him rolled cigarettes, because these tended to go out more often and reduced the risk of him burning himself (FN 440).

Arlette’s capacity to attract men and eventually get married brought its own risks. Her vulnerability was highlighted in what should have been an independent relationship with her new husband, Heck. However, even though Heck had a job, he was constantly in debt and Bill ended up doing a lot of budgeting work with him, in order to ensure Arlette’s financial security:

I had to straighten Heck out financially. His family wanted nothing more to do with him because he had made such a mess of things. He owed things all over. His family wiped them from their will because of it, but recently they have reinstated him because he seems to be more under control, but that is only because I have taken him under my wing. Arlette bailed him out and I have sweated blood trying to get systems up and running for him. He gets all carried away with Internet banking now. I have taken his credit card from him. Arlette carries the eftpos card, and he gets an allowance every week. Arlette says to him, ‘if you get on the cart again with finances, you’re out’. She means it, he doesn’t think that she does, but she does (FN 640).

The household economy

The person receiving Earnings Related Compensation (ERC) has no means of increasing their income and they also have lost the important connection with how their income comes to them. It is an important safety net to have a stable income, but it also creates a dynamic in the adult’s life that then needs to be tackled by the carer. George and Arlette were on the lowest level of ERC, about the same level as the unemployment benefit. It was hard for George to accept that his compensation would never be raised beyond this very basic level. He was hugely distressed once he fully realized he was caught in a poverty trap and Joanna had to give him a lot of support at that time.

Arlette received slightly more ERC, because she was working as a kitchen hand while she was studying. Her accident happened on a Saturday night and she was about to start the following Monday as a chef in the same kitchen. ACC wanted to treat her as a student and the family had to fight hard to get her recognized even as a kitchen hand. They felt that ACC should have paid her at the chef’s rate, but they never won the point. Sixteen years later they still felt aggrieved that Arlette’s immense potential was not recognized in the compensation that she was paid. It was not helped by the fact that the rate stayed the same over the years, with a one or two percent adjustment.

John had reached retirement age so he received a pension. Actually, his wife Elizabeth received it on his behalf and made no contribution to John’s upkeep. This put Marie into the position of having to support her father from her own pocket and she knew all about the hidden costs of disability:

The expense goes beyond paying for the care, there are also a multitude of other things that any human would have to have and which John needs more of. This includes laundry, since his bed has to be changed almost daily; his clothes may have to be changed more than once; he cannot control his body temperature and so the whole house needs to be heated, because we cannot confine him to one room … we use a ‘time out’ room, and his bedroom, which means that heat has to be blasted out at all times; we need the water heater on constantly because once he has a bath and his laundry is done there is no water for anyone else in the house; as someone who lives in a house he also creates mess and housework. When I am caring for my dad I cannot do the housework, all I can do is look after him. He also needs good food to eat (FN 491).

Elizabeth tended to become anxious whenever the subject of the pension was raised and Marie was reluctant to press her mother. However, during the course of the study year Marie was in such financial difficulties that her ability to sustain John’s care began to be threatened. She tried to achieve some clarity with her mother about John’s pension (this was six years after Marie had taken John home to live with her). It was a subject that she re-visited time after time with me, but never seemed to get any further forward:

I had this education in me, plugged in to me that if somebody is doing it hard that I am supposed to give everything and so it was automatic for me to make it right for everybody else. In the meantime I am going down, and down and down and out financially (I 533) … What you don’t understand, what no one understands, is that I did all this for my mother and my father. I have been looking after both of them, and it’s killing me (FN 470). I feel that although my Mum has lost Dad, which is tragic for her, that I have given her so much support financially and emotionally that for her not to get off on her own life and be happy now. I feel that the woman never will be and I find that quite hurtful in a way. I approached my mother about paying some money for Dad’s keep. The response was not good, how was she going to live, how was she going to do this. So I have had to have this battle, emotional battle inside myself of having to stop feeling compassionate and sorry for my mother and thinking because I can’t continue to give to her. So I had to stop making things right, I have had to think she’s fine (I 537)… It is difficult to ask when mum says that she cannot afford to stay in her place without John’s pension, anyway, she is tightfisted from habit, it is hard to get her to understand from my point of view. I just had to be firm; I didn’t want all that stuff raked up about my past (I 455).

Elizabeth had developed a mental block when it came to thinking about financial issues in relation to John. It was not something that a family member could easily approach her about and eventually Marie decided to invite a social worker to come and mediate between them (FN 447). Elizabeth clearly did not want this and she immediately agreed to pay board for John of fifty dollars per week, out of his pension of two hundred dollars. Marie was happy to have any kind of financial acknowledgement from her mother. She initially felt guilty about asking for it but, as the weeks passed and there was no money forthcoming, the guilt turned to anger. Elizabeth had any number of excuses, (e.g. the carers had forgotten to remind her to write a cheque), and the situation continued to rumble on beyond the end of the study year. Elizabeth maintained Power of Attorney over John’s affairs and she was not prepared to move any aspect of his guardianship over to Marie.

During the ethnographic research it often seemed that Bill was both the referee and the accountant as Arlette and Heck tried to reach a financial balance in their marital relationship. Heck found it difficult to stick with financial systems, whereas Arlette tended to be very rigid with money. It was easy to imagine a situation where Arlette and Heck could get into financial trouble if Heck had been allowed to take the lead.

Paid work

Paid work was important to people with brain injury in this study, partly because it re-connected them with their subsistence needs and helped them to begin to feel that they were taking responsibility. As could be seen in the above section there was little prospect of any of them bettering themselves financially through the system they were in. The main focus of ‘paid work’, as it is described in this section, was to get more money to live on. Obviously there are other very important reasons to engage in work, besides money, and these are discussed elsewhere. Earning money was a major issue for George and Mike largely because it was associated with having the capacity to be an adult in the world. Therefore it also touched on their capacity to separate from their families or carers. This section consequently also has connections to the final section about separating.

The fact that all the people with brain injury in this study were dependent on ACC, Work and Income New Zealand, or on their partner meant that they could not expect any material change over the coming years. The policy surrounding these benefits meant that they were effectively caught within a poverty trap since any money that they earned would immediately and directly be taken off their benefit. George was always looking for ways to make money, but he did not necessarily have good insight into his capacities. There was a kind of sidelong glance between Joanna and Jack that I grew to be familiar with. It often meant that they could see a battle ahead, but the time had not come yet to engage in it. There was a tension between the way that they gave George the freedom to explore what might be possible, and their continued responsibility for his safety. George was looking for jobs in the paper and I observed that familiar sidelong glance between Joanna and Jack when he said, “the only thing that is wrong with me is that I cannot earn as much as I might. There’s nothing wrong with me, I can shag as well as ever, I can run as well as ever, the only thing that is wrong with me, that is affected, is my earning potential” (FN 65).

From Joanna’s point of view things really became difficult when George was successful in canvassing for paid work. He regularly flirted with ideas and projects that could potentially get him into trouble. For instance, early in the year he negotiated a building project that was completely beyond his capacity to deliver. Joanna worked very hard to dissuade him from it and in the end she had to forbid him because she knew that he was so unsafe. Afterwards Steven, the handyman, had to take a lot of flack. It was ‘fucking Joanna this and fucking Joanna that’. It did not matter to Joanna that he was so angry with her, it was just a relief that she had managed to deflect him from the job.

He has been away all summer, gone round the South Island twice. In that time he has managed to land himself a couple of jobs. He got one organized in Cromwell but after a bit of negotiating with the guys he found that they wanted too many hours from him, no matter what he said. The other job in Hamilton is much bigger, doing a whole building. I had a few very ropey days with him when he was at home. Eventually I remembered that he had said just before Christmas that he always does what we say. So the next time he phoned up I said, ‘look George, your dad and I really do not want you to do this job, we really, really don’t want you to do it. And if you go ahead and the shit hits the fan we are not going to back you up on it’ (FN 58).

Later in the study year he took on a more realistic project that he was capable of doing. However, it was a public kind of job in a small town and he was paid “under the table”. Joanna faced the dilemma of wanting to support him, but also needing to ensure that he was not going to get into trouble with the law that he could ill afford. In the end she opted for a middle ground, supporting him for this job, but trying to ensure that he did not take on anything like it again.

It’s been one heck of a month. George was in a pub down town where he goes to drink and he asked the boss, Lindsay, if he could have a job behind the bar just so that he could get some experience for going away to Auckland. The guy was really nice. He said to show him his CV and then he put him off gently. But he got him to build a stage. I’ll show you the photos when you come around. I was really proud of him. But it took everything he had and a bit more this last month to get it done. He let everything else go, like this job at the building site. It took him longer than he thought it would, and by the end of two weeks he was wondering if he was going to get it finished. He had two guys with IHC helping him with the lifting stuff. I was at the foodstuffs place and he phoned me and said to come along and have a look. There was a bit at the back that was a bit higher, but he was funny - he said that is for the drummer. I was careful not to go on at him too much. I said ‘George you have done a good job, and look at this when you have kids you can bring them to see the job that you have done. You can bring Ruby (his girlfriend) to show her what you have done’. You could see his chest go out. But I was a bit worried, it was a cash job and it was very visible, not sensible at all (FN 88).

Hakui was the only person in the study who had engaged in regular paid employment since her brain injury, but it was not a successful attempt. The year before the research began she had worked as a teacher aide in her son’s school for a short time. There was a hideous misunderstanding when a student accused her of indecent assault and Hakui left without even trying to give her side of the story. After that, she simply gave up and she made no attempt to get employment during the study year. Harry’s role, as usual, was to pick up the pieces after the event. He had nothing to say about the job, except that it was “unfortunate”, but he had to live with her depression afterwards. In a household with growing children and one average income Hakui’s earning capacity was not a theoretical issue, but something that had bearing on their whole quality of life.

Ironically, the capacity to earn money was in direct relation with the number of hours of care the person with brain injury was receiving. This was possibly because a larger number of care hours gave the carer the flexibility to be able to support an exploration of work possibilities. George found a way of earning money without having to work in regular employment, which he could not get or keep; George had far more care hours than Hakui (twenty hours) who occasionally got work, but was not able to hold onto it; Mike (one hundred and sixty eight hours) had been able to make and sell small pieces of furniture to friends at below cost until the Second Chance Centre stopped supporting him in the endeavor; He had far more care hours than Arlette (twenty-eight hours) who had never worked since her accident. This leads to the conjecture that relative level of support depends more on the carer’s capacity to advocate than it does on the relative need for support of the adult with brain injury.

There may also have been gender issues here in that there seemed to be an expectation that young men needed to be supported in productive activities outside the home and this was a factor in why they were given so many more care hours. Yet an entrepreneurial streak is not gendered. For example, Hakui had the skills and the drive to develop some form of a business, if she was given support. Harry recognized her multiple talents, but was not in a position to give her more concrete support. In the following excerpt he made the important point that being able to do something does not mean that the person with brain injury has the capacity to gain employment in that area:

Hakui might be able to stay at home and do her crafts and sell them at a market, but they (ACC) never seem to think that way. Maybe they could set her up in a workshop. Even that course that she did in graphic design, she could set up with that. But they just watch and say, ‘can she do the course; yes she can do the course. That means that she is able to work’. But it doesn’t mean that. She could maybe do it if she got a little more help. Even if she could do a bit of desktop publishing, at least that would be giving her experience. She mightn’t be making a lot of money, but it would be a start. She does find the people difficult, there are so many people in work situations (FN 313).

George, on the other hand, had forty hours of his sixty-hour care package allocated in the direction of finding productive employment outside the home. This gave him freedom to develop the insight that would eventually enable him to earn his living. He learned that he could not work in paid employment, because he was completely incapable of sustaining regular hours. He knew that he was capable of doing small building projects, but it was less stressful if he was doing these for himself, with help, than if he was doing them for someone else. Therefore the house that he bought was an important initiative for him to explore. He began to realize that it was possible to earn a rental income and that he did not necessarily have to work.

These insights did not come together in a coherent way until his trip to Auckland where he read Robert Kiyosaki’s book about buying and selling property, “Rich Dad, poor Dad”. The trip itself was part of the freedom that the package of care gave to him. Suddenly he realized that investing in real estate was the way forward for him. It brought together all his strengths and his reading made it feel plausible. The task for his parents was to help him to be realistic as he started looking at residential properties in the local area. Joanna was glad that this was an idea that looked feasible, unlike many of his earlier ones. It was good to be in the situation of encouraging him, instead of always holding him back.

I brought him to see the accountant so that he could start getting more involved in that side of things. He will never be completely independent. But I suggest to him that what he will need in the end is to pay someone to do the admin side of things, maybe when he has six houses. I am amazed that he read these books. They are simple and fairly repetitive, but still he has retained some things from them. Now I have read three of them and I can use the arguments in them to try and hold him back (FN 98).

Nothing however was ever simple with George and the first problem was trying to dissuade him from grandiose schemes. He was a monomaniac about any idea that he got hold of, and Joanna had to work through these with him. When he had a good idea and her role was to try to help him not to overstretch himself immediately. She used what she had learned from the books he was reading and, as always, she listened to him:

He told us all the ideas he had, but then said that we were being negative when we tried to put the breaks on him. The thing he wanted to do was to build a set of six apartments immediately. It has been hard. It’s a bit hard because he uses all these bullyboy tactics (FN 98). I wonder if I have created a monster in encouraging George with the real estate, though the estate agents seem to enjoy him. I have to stop him from talking about it all the time, and I also have to discourage him from criticizing others. Some people are quite happy just to have a job and get the pay for it, I tell him (FN 49).

He bought two houses in quick succession. Unfortunately, towards the end of the study year he bought a third property impulsively. It was expensive and the consequences of over-extending on it were potentially serious. When I talked with Joanna it was clear that she had reservations about the property before he bought it, but she could not see how to stop him. Jack moreover felt that Joanna was implicated in the decision and it was a good example of the kinds of tensions that arise around adult decisions made by someone with a brain injury. Jack said, “I believe that he has stretched too far this time. He paid too much, and it is a house at the top end of the market … this is one that Joanna caved in to” (FN 50).

George tried unsuccessfully to get tenants into this expensive property over a period of a few months. Eventually his parents came up with the solution, which was to buy it as part of a trust for all of their children. They would then live in it and eventually it would belong to the family. They happened to be in the market for a property, but they would not normally have looked at this property since it was too expensive. In the end they were very pleased that they bought it.

After getting this help, George began to look as though he had a substantial asset base. He planned to double it within a couple of years, and his ambition was to be a millionaire by the age of thirty. This was big thinking from someone who had a severe brain injury at the age of five. As he said himself, he “couldn’t have done it without his mum” (FN 135). He had successfully brought together work that he enjoyed and was capable of doing, while earning a good income that went into a trust fund.

Mike had been attending a Second Chance Centre for years, making things for the house that he dreamed of having. Sheila assured me that the centre was well paid to have Mike, since ACC paid four thousand dollars a month for the placement (I 589). Whatever the truth of this, it had become a place that was very difficult for Mike to exit. Other trainees would come and go while Mike always remained. The last straw came for him when his housemate with a brain injury got a job and left the centre. After this, to placate him, the managers of the centre allowed him to sell some of the things that he made (FN 571). While it lasted, it gave him a great deal of pleasure and Dean said, “he gets no greater pleasure that being able to earn a bob or two, like if I say to him that he can gather up those bricks by the side of the house and he can sell them. The fact that he can get some money for nothing … well not money for nothing … earning it himself” (FN612).

Unfortunately, there were significant parts of the arrangement that had not been well conceived, for instance the cost of the projects. I realized this might be an issue when I visited Mike at his house and he offered to make me a swing seat that I admired for $100, which was about one third of what I would have expected to pay. He brought up the subject every time we met, but I began to realize that his days of making and selling swing seats were over. The centre had no intention of sustaining a business in the sense that Mike wanted. I talked to one of the managers of the centre about Mike’s business and she said, “But what do you do? The stuff he made was all sold at below cost. You needed to do your research. I benefited though didn’t I? I got a coat rack for fifty dollars” (FN 571). She called out to him then, “What did you sell the swings for Mike?”. He couldn’t remember. The whole demeanour of the manager was patronising, indicating that the idea of his little business belonged to the past. It was something that they had done as a favour for Mike and they had run out of steam for the idea. Mike however continued to see the training centre as a personal cottage industry. My impression was that this was his way of keeping his sanity.

Later in the year I talked with Dean about the issue, since he was the person who felt the most responsible for making a coherent whole out of Mike’s life. The training centre seemed to be more interested in placating Mike than in really pursuing his best interests. He stayed there because it gave him something to do four days of the week. There was nothing else immediately available, since he had long since exhausted every other possible option in the town. This was not a situation that was fulfilling his goals and Dean felt that they were not being honest because they failed to tell him that they had no intention of allowing him to make any more goods to sell, “he wants to earn an income. But that is not what the Second Chance Centre is aiming at. It’s terrible that they are not up front about that; I have suspected that this is what is going on” (FN 612).

The Second Chance Centre had a conflict of interest. Mike brought in a lot of money through ACC, but the place could not actually offer him what he wanted and this should have been clear to them. Dean was Mike’s strongest advocate, alongside his grandmother. He was aware that things were not satisfactory and he talked about setting up some alternative arrangement. The new place had a double garage where Mike and a few of the other guys with brain injury could possibly chip away at projects, “I am still really into this co- operative idea…. There might come a time in the future when they are able to earn enough to support themselves and that would be just amazing” (FN 612).

Summary of Subsistence

All the carers in this study had some degree of involvement in running a household for the person with brain injury. However, the kind of involvement and the implications of it were different in every case. A common factor was that providing this level of care ensured the carer stayed in touch with the needs of the adult with brain injury. It therefore had important implications when the carer and adult with brain injury began to negotiate some degree of separation and this is dealt with in the final section. In the cases of Mike and Hakui, principal carers were not involved in the minutiae of their lives to the same extent as the other cases. This tended to make both Mike and Hakui vulnerable to the paid carers who were involved with them. The paid carer Sheila completely dominated Mike, while Hakui despaired of ever getting paid carers to do what she wanted of them.

The degree of involvement of the carer in running the household was a gendered issue. Female carers accepted this work as part of their role, whereas the men in this study did not engage with it to the same extent. Male carers however also engaged in gendered tasks such as house maintenance, which they had to do on top of the caring role without the kind of help that they might have expected from the person with brain injury. Reflecting this division of labour, the women with brain injury in these cases had significantly more responsibility for housework and cooking than the men in the study, even on an ‘injury-proportional’ basis. In some ways this gave them more immediate access to a social role than the men with brain injury, but it could also be problematic. The men with brain injury tended to be freed up to take on work outside the home.

One of the fundamental qualities of subsistence work is that it ensures the safety of the person. There were far more examples than I could give in the findings of concerns expressed by carers both for the safety of the adult with brain injury and for the safety of those who came into contact with them. It is often a lack of consciousness about safety that can make being around adults with brain injury feel dangerous in some way. The examples given here covered situations both large and small and they also covered scenarios that were both hypothetical and real. All of them required the consideration and attention to detail of the carer.

Money was a significant issue in most of the households, partly because ERC was set at such a low rate. The adults with brain injury in this study had not been in high-earning jobs before their injury, because of their youth or gender. This meant that, no matter what their potential had been prior to the brain injury, all of the adults with brain injury in this research were caught in a poverty trap. There was an element of irony in this, given the vast amounts of money that were being expended on their care.

Sometimes the drive to get more money put the adult with brain injury into compromising situations of different kinds: canvassing for work that they were not capable of doing; doing work as part of the black economy; losing a job under a cloud of misunderstanding. In all of this the principal carer was working alongside them, trying to keep them safe, without taking their freedom. This meant dissuading them from dangerous situations, walking alongside them when it could not be helped, and picking up the pieces when it all fell apart. It is all too easy to imagine that in a situation without a focused carer this urge to get themselves out of poverty could get the adult with severe brain injury into serious trouble.

Entrepreneurial initiatives were the most promising avenues explored and these ranged from a successful engagement in real estate, to a supported attempt at setting up a craft business, or simply talking about the wish to set up a small business. Carers had to take almost complete responsibility for these early attempts and sometimes this could have serious financial implications for them. The capacity of carers to provide this kind of support directly reflected the degree of success that the person with brain injury had in their venture.

On to part 2