STORIES OF CARING FOR SOMEONE WITH A SEVERE BRAIN INJURY: THE PRACTICE OF CARE REVEALED (Part 2)
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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-part-2.htm
Productive work is about making of things that have a degree of permanence. It is not necessarily associated with paid work in these findings, although there could be some overlap at times. Making things that will endure can have a profound significance in the lives of people who have a short-term memory loss. Its importance is reflected in the fact that every person with brain injury in the study took part in productive work, with the exception of John who could not. The common thread was that support was always necessary, but with support it was possible for the adult with brain injury to do good work by any standards. Care hours that can be used flexibly for this kind of support are invaluable, since with flexibility it is possible to make a good ergonomic fit between the activity and the person.
George was able to use forty hours out of a sixty-hour care package to focus on productive activity; Mike was given four full days a week at the Second Chance Centre to make things. Arlette, on the other hand, was grateful to get on a one day stone-sculpting course, organized by the support group, at the beginning of the year. She eventually managed to find art and carpentry classes, but they were all ones based within general disability services and not in any way individualized for her needs. Hakui was someone who valued her creativity highly, but the hours to support this had been cut dramatically in the year preceding the study.
Productive activity is seen here as being particularly useful in that it can provide cues to help the person find their way forward. It tends to be one of the properties of this form of work that it provides simple and coherent connections with the world. For instance, George would not have found his way into real estate if he had not built up his handyman skills; Mike would never have thought about starting business if he had not made so many small pieces of furniture; Hakui would not have such a strong sense of identity as a Maori if she were not also an artist.
Engagement in productive activity can also showcase the way that brain injury interrupts cognitive capacities, without interfering with technical skills. In other words, the people with brain injury in this study could do some things as well as anyone else, and other things better. George was increasingly handy as a carpenter; Hakui was an accomplished artist and craftswoman; I was not able to work closely enough with Arlette or Mike when they were engaging in this kind of activity to know how much they were capable of.
Arlette came off antidepressants abruptly half way through the study year and fell into a depression, accompanied by ‘cold turkey’ type agitation. One good thing that came out of this period was that it uncovered the need for creative activities outside the home. Normally she spent a lot of time going to the gym and the swimming pool, because staying fit was an important element in ongoing rehabilitation for her mangled foot. Without anti depressants she became too tired to keep pushing herself physically. Lillian and Bill tried to find something else for her to do, but they were at a loss. They scrambled around following rumors of courses that she might be able to join. For instance, they heard about a stone-carving course that was to be run at the local polytechnic for people with brain injury. They had no idea what it involved but they worked frantically to make contact so that she could get on it. They finally managed to get Arlette on the course; in fact her name was the last one to be accepted. As it turned out, the course was only for one day, instead of going on for months as they had hoped.
Lillian and Bill were skilled in the day-to-day care of Arlette, but this was a good illustration of how helpless they felt in relation to accessing resources beyond their immediate circle. They still often talked about a filing job that her neuropsychologist had suggested that he might create, years before, and they clearly felt helpless when nothing eventuated (FN 638). I felt compelled to say something to the occupational therapist involved, advising her about the various programmes that are available. We talked about the need for some kind of supported employment, but this therapist said that it would be impossible to set up (FN 335). Finally, through this occupational therapist, Bill and Lillian heard about an art group that was being run specifically for people with brain injury (FN 647). Arlette got into it and she enjoyed doing it. The following year the occupational therapist added a woodwork class, run by a disability centre, where Arlette was with people with intellectual disability. She did not seem to object to this either, but there was no sign of an individualized response being developed around her needs.
Hakui was also in a situation where there were no individual solutions being created for her but, unlike Arlette, she refused to be slotted into what was available. For example, she found the art class that Arlette went to totally unacceptable to her, both as a Maori and as an artist:
I went to the art class this week and I was furious at what happens. The artist is leading the class; it is clearly very well resourced. And what she wanted me to do was to paint strips of paper, which she would then get laminated, and then she will weave it into a ‘kit’. This makes me angry on so many levels that I can hardly speak about it. For one thing as a weaver, I want to be involved in the weaving. But it is clear that the artist already has the whole project mapped out, and I with my other class mates are to provide some of the labour for it. I am not going to be guided through my own creativity. I thought that the artist is supposed to be there for the people on the ground, her own work should take second place (FN 328).
Productive work for Hakui meant doing paintings that had real meaning for her, or making things for her family. Most of her projects had been completed during a time when she had additional funding, prior to it being cut when she did the computer course. At different times she had built a play hut for the children, built raised beds for the vegetable garden, and put up banisters along the steps outside the house. Hakui had trained as a weaver and the house was full of examples of her work. She was no longer able to work at her loom, which was housed in her basement, because she did not have the cognitive capacity to set the threads: “it is a terribly mathematical thing and also it is a focusing and concentration on stuff. I just don’t have it, it is just not there” (I 385).
She did very little of this sort of productive work during the study year, because she needed to have the right person alongside her to provide cues and support. With each injury she seemed to need more help to engage in the productive side of her life. Before the latest series of injuries it was possible for Hakui to do her artwork with just some prompting from Harry. I was reminded of this when I met Hakui and Harry and their children at a fun day for people with brain injury and their families. After the day was finished I walked with them through a reserve and we came to an interpretation board, which had two paintings of the area on it. Harry told me that Hakui had done both of these, though he added that it had taken a lot of encouragement from him. It wasn’t exactly easy, but those were the days when Harry was still able to facilitate Hakui into doing her art (FN 331).
The more recent brain injuries had put an end to this. She was no longer able to be encouraged into doing projects; she needed someone to work alongside her. The study year was marked by almost total inertia regarding productive activity of the sort that she enjoyed. For instance, a half finished painting she had started for women’s suffrage week took up space in the cluttered kitchen. Now it was leaning up against the whiteboard that usually had her shopping list. There was a deep sadness about this. Describing what it meant to her she said, “it is all about that big hole that there is where my spiritual life used to be. It is like that I am addressing that empty space … and it is so hard” (FN 345).
George was also someone who could not manage without an individualized approach. The last time anyone attempted to fit George into available resources was when he spent time in the rehabilitation unit. His family knew that he needed to have things tailored to fit his situation. Fortunately, he had a funding package that allowed him to have support as he explored activities that might begin to engage him. Jack and Joanna gave him as much freedom as they could, trusting that he would find a way forward with their help. The freedom that they were able to give him through having a flexible care package was not the same as independence; rather it was a supported freedom. They talked about the kind of freedom that they gave him, saying, “he doesn’t know where he is going. It is hard for him to get a vision. It is hard enough for anyone to know where he is going, but George needs a lot of freedom to begin to figure out where he is going” (FN 86).
He could try things out, but he would always have someone there to help him. The freedom was also about catering for his unpredictability and they were fortunate to be able to find someone whom they could employ in this situation. One third (twenty hours) of George’s care package was paid to a handyman, Steven, specifically to allow him to have the freedom to explore what he could do. They did some good work together, but George could not have managed to do such complex projects without help from Steven. The arrangement would not work if the hours had to be regular. George could phone Steven up at any time to ‘chew things over’ or to ask for his help on a project. The hours involved could vary dramatically from week to week, so Joanna paid him a regular twenty hours out of the care package and they reviewed it regularly. This kind of arrangement was only possible with a flexible care package.
Jack also worked alongside him on many of these projects, which gave a much greater degree of continuity. One such project was the conversion of a shed into a sleep-out at the house that he was renting out to tenants. This gave him a place to store his stuff and allowed him to come and go, while renting out the house. Joanna showed me the photos of the development of the sleep-out at the beginning of the study year:
They have been building the sleep-out for the last year. There is no kitchen or bathroom / toilet. This is partly because he never cooks, but comes to me for all his meals still. It was all his vision; only a shell before and he could see the possibility, which I never could. But he starts things. There are some parts of the floor missing which he said that he would do, but he never gets round to it. And he would move in and it would never be done. So I am insisting that it is finished before he moves in (FN 17).
Jack was very aware of the way in which George tackled jobs with initial enthusiasm and then gradually faded away. He knew this intimately because of how often he had to pick up the pieces. He gave me this version of the story about the processes involved in getting the work done on the sleep-out.
George is like the crocheted loops at the edge of something. He does one loop and then moves on to the next, and the last one will never be revisited. He was hyperactive as a child, and even now he has this drive to go forward. It is like he is so afraid of missing out because of the head injury that he keeps pushing forward … We work together on a project in the house. At the beginning George will be involved, then as we go higher he has less and less involvement. He is afraid of heights, but he is also getting tired. So that by the end George is sitting down and myself or Steven are still working (FN 198).
The sleep-out allowed George to store his goods and it meant that he could then rent out the whole house to tenants. The exercise of being a landlord was full to the brim with possible experiences, both good and bad. He learned how to deal with small domestic incidents and also got a good insight into the realities of getting a rental income. One of his most important coping devices was to check out every single thing with Joanna, often asking for her opinion about the same thing many times. Joanna and Jack recognized when things were getting too difficult for him and then they avoided saying anything that might inflame the situation:
George learns best by experience, so we let him experience the good and the bad. If he does something then he has got to experience the bad and it is a bit like the flatting situation. I mean that’s been a great learning curve, that managing people coming in and out has really been a good learning curve for him. I cringe at some of the problems and that but I keep my mouth shut. Like Jack and I will talk about things, but I don’t say half of what I think to George, god forbid (I 296).
Another third of George’s care hours (twenty hours) was used to help him to engage in a supported employment arrangement. A builder was given the equivalent of about twenty hours care, two hundred dollars, so that he would have George working alongside him in the workplace. George however did not receive any payment, so it was only supported employment in the broadest sense of the word. The idea was that the job would give George a structure to his day and a sense of identity. It made Joanna’s job much easier if there was one thing that she could hold his focus on.
One reason why the work needed to be supported was that his attendance was so erratic. He was not able to put in a regular day and he often missed work for days at a time. In addition to this there were times of the year when he hardly made it to work, especially during the winter. This annual cyclical response in people who have brain injury was something that Joanna recognized well. She described how unsettled he had been since Christmas and said, “it is hard to pick up the threads after the break. He has got this drive, and he doesn’t know what to do. The other night he said, ‘mum I’ve got this episodic thing again’” (FN 199). Another reason that the work needed to be supported was that George’s actual performance was also erratic. He was intelligent and capable of doing individual tasks most of the time, but suddenly he would lose this capacity. Awareness of George’s fragility in this way added an extra dimension to Joanna’s vigilance.
The supported work arrangement was good in many ways. It gave George structure and a sense of identity, which he needed desperately and for a time he was satisfied. However, it had the drawbacks of a situation that was not fully authentic. It was not long before he became dissatisfied, when he realized that having a job on a building site placed him in a false position. His brain injury was already invisible and having something that looked like a “real job” compounded the problem. It was nice for him to have the prestige of having work, but it meant that people expected more of him than he could deliver. It also was a factor in the way he went on to look for work that was beyond his capacity.
Joanna felt very helpless when George said things like, “I feel as though I am leading a false life sometimes. If I say what I am doing it sounds as though I am better than what I am. I say that I am working on the buildings, but I don’t say that I am doing it as a volunteer and that I can knock off any time that I like. I feel like a fraud” (FN 34). Joanna was placed in the difficult position of trying to sustain it in spite of his complaints. It might not have been perfect, but it was still the only structure that he had in his life. She was concerned about the much more negative kinds of things that he might get up to if he did not have this.
Mike also had problems with a less-than-authentic work situation. He had a good package of care and a large portion of it went towards supporting him to attend a workshop four days a week. There he produced small pieces of furniture with one-to-one assistance from a tutor. When I called in to see Dorothy there were examples of his work all over the living room: the coffee table and the carving of two little old people sitting on a bench, the trolley and the dolls house that he made for his nieces and nephews. Mike worked hard to keep his dignity and he said that the things he made were for the house he was going to get some day (FN 567).
There was a more patronizing tone to how Sheila and the tutor at the centre saw Mike’s efforts. Sheila felt that much of what Mike did was not age appropriate and informed me that the dolls house, among other gifts, was not age appropriate for his nieces and nephews. She also told me that he did not really do this work himself, since he got such a lot of assistance and only did part of each job (I 589). His personal tutor, who talked about all the things Mike had made that had never been sold, struck the same tone. He told me that a whole room in Dorothy’s house was devoted to the (useless) furniture Mike had made.
Summary of productive activity
Productive activity was rich in possibilities and it showcased the ongoing capabilities of a person with multiple cognitive deficits. However, it was not possible for any of the adults with brain injury in this study to take part in productive activity without support. This support was usually obtained through the principal carer, who also managed the overall direction of the support. Principal carers rarely gave this kind of support in a practical way, usually because they did not have the skills required. There were exceptions, like Jack who was able to work alongside George both on the car and on building projects. One of the most important elements in getting the right kind of support was to have flexibility in the care package. Carers supervised what was happening and generally made the decisions about the overall direction to take and whether something was relatively safe or not. Where this kind of supervision was not forthcoming, as in Mike’s case, there was a degree of ambivalence about the products.
Gender differences were evident in relation to the funding available for productive activity. Arlette and Hakui did not have any degree of flexibility with their funding and this impacted on their capacity to engage in productive activity. The carers recognized the need for this kind of activity, but they were helpless to proceed without the funding. It highlighted the extent to which families cannot do this part of the care by themselves and Arlette was desperate enough to accept whatever services were available, even when they were inappropriate. For Hakui, this was completely unacceptable at many levels since there was no ergonomic fit from the point of view of aptitude or ethnic identification. She was left without any help, in spite of the overwhelming need that she expressed to be engaged in this kind of activity.
George’s family members had control of his care package and were able to use it flexibly, which is simply another way of saying that they ensured a good ergonomic fit. They chose to use two thirds of the care hours in providing productive activity for him in two different forms. They employed a handyman who was able to explore the possibilities of activities with him and find out what they might lead to, both good and bad. Where it worked well one thing continued to lead to another, such as the way that the sleep out was associated with managing his first rental property. Sometimes it did not work well, and the family had to work hard to pull him back from engaging in projects that might be unsafe for him or others. They also put him into a supported employment situation. What this lacked in authenticity, it made up for in terms of providing structure and identity. It was not completely satisfactory, but it helped them to get through the annual and weekly cycles associated with his brain injury and it kept him out of trouble.
Mike also had a care package that was large enough to allow some of it to be channeled into helping him engage in productive activity. The production of small artifacts led to him to making gifts for his family, developing things for his new home (whenever he got it) and eventually it led him to think of starting up a small business selling. However, there was a conflict of interest between all of these aims and those of being an educational establishment. There was no evidence of effective supervision of the whole process.
A place in the world
In this section I introduce the third and final element of the human condition that the carer helped the adult with brain injury to engage in. There are three subsections: the first is about physical separation, which is achieved through a process of mutual negotiation with the wider family; the second is about having a family and the third is about involvement with the wider community.
It is not surprising that adults with brain injury want to have a place of their own. Much of the practice of carers was about facilitating this. Hakui’s was the only case where there was not some kind of change of location, for either the carer or the person with brain injury, during the study year. However, separation was not about achieving independence; it was about shifting the perspective on support so that it could be given from a distance.
The change in terms of distance was sometimes minute, such as the building of an extension onto Marie’s house to allow John to have a place of his own, within her home. In the cases of Arlette and Mike, either the carer or the person with brain injury shifted locality within the town. In George’s case, the distance was stretched as far as Auckland for the period of an extended holiday. The length of time between receiving the injury and beginning to separate was always a substantial period: George (fourteen years); Mike (sixteen years); Arlette (seven years) and John (fifteen years).
It would have been unthinkable for George to separate from his family before he was ready. A good care package was a significant element in ensuring that separation, when it took place, was effective. Carers identified it as counter-productive to attempt this kind of separation before the carer and the person with brain injury were fully ready. For example, an ACC case manager tried to get Joanna to consider allowing George to take a bus alone for a forty-mile trip to his therapy when he was only thirteen (L 158). The inappropriateness of the suggestion was highlighted by the fact that, ten years later, George still needed support when using public transport. Another example with George was when he got older and watched his peers begin to leave home and set up in flats. He wanted to do the same, so his parents got him into a boarding situation with some people that they knew. Over the three weeks that he was there he failed to either wash or feed himself (FN 183). The attempt was a failure, except from the point of view of persuading George that he did need some help.
Joanna thought long and hard about every issue related to George, especially about whether she could hand the job of coordination over to someone else. Eventually she decided against, saying “George is too stubborn, he would never take direction from someone outside the family. Whereas with me, I can move him on and hold him back at the same time” (FN 4). His parents needed to know that he was safe before they could begin to let him go, but they struggled with knowing when this time should be:
George says that all this head injury is in my head. It’s just me; I won’t let it go. And there are people who say to me, ‘just let him go’ ... they don’t see what would happen if I did just let him go. But I do ask myself, should I just let him go and get on with it? George thinks that I won’t let it go, it happened eighteen years ago, and this is just him (FN 251).
The impetus for separating was arrived at by a process of negotiation within the family. For example, with George, the process began four years before the study. At that time his parents had reached the end of their tether, they had done everything that they could and they were not able to go any further. They managed to get him into the local assessment centre and then refused to take him back until they had taken breath for long enough to arrive at a solution. George went from the assessment unit to a transitional living unit, which was anything but a smooth process since professionals found George very hard to handle. In George’s words they did not know what to do with an “old brain injury” like him (FN 62). Joanna also felt that the service left a lot to be desired, but the great blessing that came out of it was that George was assessed as needing twelve hours care a day. Beyond that, the professionals were not able to come up with any solution for what to do with him.
Eventually Joanna came up with the idea of getting George a flat of his own, which was only made possible because of the care hours he had been given and a small amount of backdated attendant care money that ACC had given them years before. The family knew that they could manage him with nine hours a day, so they gave the other three hours back to ACC. Joanna and Jack continued to coordinate his care when he moved into the flat, and he saw them every day.
This worked well and in time George wanted to know whether he could manage at an even further distance to his family. The year before this research he went on an extended holiday to Auckland, and he wanted to do it again. Joanna was much less anxious when he announced that he was going away for a second trip. She knew how to set things up so that he would be looked after. For instance, he boarded with friends of the family and Joanna was able to divert the whole care package to them for the duration. She had learned that an essential element of caring for George involved giving him his freedom. She said:
There is no point in wrapping him up and not letting him make mistakes, so I think now about what he can learn from them. Like the Auckland trip. I lie awake and think of all the things that could go wrong and then I tell myself to stop that (FN 101).
George was very content in Auckland and he talked frequently about wanting to stay longer, partly as a way of testing the ground to see if he could have his freedom. He talked to Joanna every night on the phone. What Joanna learned was that she could let go of George, once she knew that he was safe. We had extended conversations about this, and re-visited it time and again. She moved from a situation where she was very nervous initially, to one where she had greater confidence in their capacity to care for him at distance. This gave Joanna greater choices in her own life also:
We don’t have to be there for the children the same now and so we have got more choices in that respect and we don’t have to be right on George’s doorstep. We know that we can manage him, because of his trips to Auckland, from a distance. What I am saying is with George we can start stepping back a bit because we know some of his limitations and what some of the input is that we need and how to work things from a distance (I 295).
Mike was different to George in that he was never given anything like the same freedom. It had always been difficult to find suitable placements for him and he had moved from hospital into a mental health setting, before Dean encountered him and set up the group home around his needs. He had a big package of care, but it lacked flexibility because it involved so many people and so much money. Sheila was the carer who had spent most time with Mike and in the past her role in controlling his difficult behaviour had been valued. However, by the time of the study Mike had a reached a point where he wanted more freedom and he pinned his angst about this on the relationship with Sheila:
It is just that there are too many carers there, and there is one personal carer, Sheila, right, she drove me up the wall, she is telling me to do this and do that, and do anything she could think of. She is bossy with me and that’s bad for my head injury, because with my head injury, I have got to take it easy and do things when I want to feel like doing it (I 618).
Mike’s goals were to get away from Sheila and into a place of his own, and these two goals were very wound up together. His strategy during the year of the study was to carefully focus on the relationships that mattered and to get “everyone wound around his little finger” (FN 567). These were the tactics of someone who felt essentially powerless, but in the end his plan succeeded. This was possibly less a result of successful tactics than a convergence between his interests and those of Dean. Later on, it turned out that Mike’s house was actually another group home. He was not living with non-disabled people, just with a different set of people with brain injury. His own money had not gone into the house and Dean tried repeatedly to make this clear to him, even showing him statements of his account. At some level he persisted in believing that it was his house. In any case he seemed happy with the compromise and particularly content with the degree of separation that he had achieved from Sheila.
Arlette did actually own her own home, due to the generosity of her parents. She had been living with them for five years after the injury when they received a sum of over one hundred thousand dollars in back pay from ACC. They handed her the money without a qualm as Bill told the story, which tells something about how little they expected from ACC as well as about their love for Arlette:
We cared for Arlette for five years with almost no outside help. We didn’t really expect any help. Then one day ACC people came with a letter saying that we had been awarded this money. We couldn’t take it in at first. We thought that they were saying that we owed this money to ACC. But no, we were awarded a lump sum of about one hundred and thirty thousand dollars as back pay. We passed it straight on to Arlette. Friends said that we should have kept it to set ourselves up, but we never even considered it (FN 634).
Arlette had always loved the house next door and, by the kind of happy coincidence that seemed to attend Arlette, she was able to buy it with the money her parents gave her. Living in the house next door meant that they were able to give each other some space. Having her own space had meant that she was able to get married and manage her own home. This freedom was very precious to her, but Arlette was still with her parents for up to eight hours a day because she popped in constantly. The arrangement had the advantage of allowing them to stay in tune with her needs, but eventually it became claustrophobic for all of them.
Out of the three of them at the beginning of the study year it was possibly only Lillian who had faced up to the fact that the current situation was no longer tenable. She did not talk about these things to me, but in hindsight it was clear that she was quietly working away on Bill. His health was a real concern for her. Lillian was much more firm than he was and knew that Bill needed some protection if he was going to survive rapidly deteriorating health. Bill said to me that the only thing that he and Lillian tended to fight about was Arlette. I could see from the set in Lillian’s mouth that she was determined to protect him from Arlette’s demands (FN 643). She was overstretched by having to care for both Arlette and Bill. She was the one carer who described the symptoms of severe burnout and said that there were times when she could hardly make herself do things for Arlette (FN 647).
Taking advice from friends and feeling that they had come to the end of the line, Bill and Lillian went away for the first holiday that they had in years. On their return, Bill told me how they talked all the way down the west coast about their need to have some space of their own. Bill experienced a terrible sense of conflict between his love and loyalty to Arlette, and the demands of his failing health.
“If we move away”, said Bill, “I am afraid that Arlette will be terribly lonely. That time we went to Kaka Point she phoned us up then and said how lonely it was for her. She can be a bit naughty the way that she constantly uses us, but she does not do it deliberately”. “No”, said Lillian, “she is just used to having us here. She won’t have such a good quality of life if we go. We will work our hours and then we will go” (FN 641).
Bill was stricken with the thought that Arlette might experience their move as a form of abandonment. They were both afraid that she would be lonely and that her quality of life would slip away without them there. They knew that she would be safe, but they saw endless frustrations ahead of her if they could not be available to her constantly. They had been looking for a way to broach the subject with Arlette, but could not bring themselves to raise it (FN 644).
In the end it was Arlette who gave them permission to leave when she said, “You guys are going to have to think about yourselves sometime, you should get a smaller house, you can’t manage this one any more. You should get a little house, then go and spend the money on yourselves, and not try to be leaving a whole lot to the two of us” (FN 639). In this way she told them that she too wanted her freedom. Bill was incredibly grateful that the suggestion had come from her. He no longer felt as though he was abandoning her, and it allowed Arlette to believe that it was her suggestion that they were acting on. It put a positive slant on the whole move (FN 644), which happened the following year.
In another parent / child relationship, but reversed this time, Marie and her father had also lived on top of each other for years, because of the brain injury. This required a very careful organization of the spaces that they lived in. Marie took him out for walks and drives, because this calmed his wandering spirit. Sometimes however she could not allow him to walk, because there were times when it would increase his agitation. Entrances had to be monitored, because sometimes he might suddenly climb out a window for no discernable reason. If he needed time out she put him into the spare bedroom and he could walk his way around the bed, backward and forward, till he calmed. She knew just the right touch that would suggest to him that it was time to sit down, or to stand up.
Much as Marie hated leaving her father she realized that she could not sustain the twenty-four hour a day level of commitment to him, if she could not also find a way of having a break. She could never get a break in her own home, because they all shared the same living space and she was still responsible for supervising the paid carers. There was no satisfactory way that she could leave him with even her mother, because his needs were so complex. I met with her one day when John had just come back from a weekend with his wife and she told me:
John has been really upset. They were trying to give him a normal diet, too much food and drink in a short space of time and now he just can’t take it. This morning I gave him half his medication to see if that might calm him (FN 461).
The idea of separation between John and Marie began as a dialogue with ACC about respite care. Marie responded very poorly to the suggestion, made by John’s case manager, that she could get respite by sending her father to a facility that he named. She had put in a great deal of effort into trying to explain the complexity of John’s needs and she took this suggestion as continued evidence of a lack of understanding:
What I find humiliating was his story about the seventy year old who puts her husband in for respite care. I feel as though he is comparing me to a seventy year old, as if I am not able to cope with what is happening. I feel that it is patronizing, that he cannot see the extent of the job that I do. They could not care for John adequately and if I left him there he would get very distressed (FN 475). Does he really think that it is like looking after a little old man that is seventy-three who is in a wheel chair or on a walking stick? Absolutely not! (I 518).
Marie began to realize that the only way to sustain the level of care for John and give her respite was to have a separate living area for him in her house. She had originally asked ACC for a bathroom adaptation and had been waiting two years for this at the time the study began. The longer that she waited for work on the bathroom to be done, the more she came to understand the relationship between John’s needs and her own:
John needs a place where he can wander safely and where I can get a break from him. There are times when he is aggressive, or when he has sensory overload, and in those times he needs to be by himself for a bit. At the moment you have to go through his bedroom to get to the toilet. The carer sleeps in a bedroom right beside mine, so there is no privacy. The carer has to leave her bedroom door open so that she can hear the alarm mat if it goes off in John’s room, indicating that he is wandering (FN 464).
By the time ACC came around to doing the bathroom, she was ready to ask them to put in a whole new living area for John. ACC did a series of assessments in the year following the study and finally agreed to also extend the living area for John.
Making a new family
The connection between natality and making a place in the world is most evident in the drive to find a partner and start a new family. It is about making a completely new place in the world, but it also highlights the fragility of this place for the adult with brain injury. It brings up real issues about the capacity to care and who will care for the children.
Dorothy already had this experience with her daughter and she did not want to repeat it with her grandson. When Mike started to move into a new house, Dorothy had real difficulty with the fact that there was a woman there (with mental health problems) who immediately hitched up with him. She was very clear that she did not want Mike to get together with someone who was as vulnerable as himself: “I don’t want Mike living with someone with a psychiatric illness” (FN 613). She had supported her daughter through her marriage with an alcoholic and Mike and his brother were the children of that marriage. This experience and the fact that she was now too old to help, made her aware of how very finite, in every sense, the resources were around him.
Lillian and Bill were able to be supportive of Arlette’s choice of partner, though it is unlikely that the feisty Arlette would have countenanced anything else. However, they were aware that Arlette’s new husband, Heck, had his own problems and they were clear that he was lucky to have found Arlette: “Heck got lucky when he married into our family. He comes from a really dysfunctional family himself and they are worth nothing” (FN 634). I was aware that this was not the perspective of others and when I was helping to make a film about Arlette the director mentioned that he thought that Heck was the real hero of the piece (FN 636).
Lillian told me of a couple of situations where Arlette found it very difficult to handle young children. These difficulties were a partial justification for the decision taken early after Arlette’s brain injury to have a hysterectomy. For instance, her husband Heck had a son by a previous relationship and Arlette invited Heck’s ex-partner to come for the weekend to help her because she was finding it difficult. The partner found the situation so comfortable that she wanted to come every weekend. Arlette was able to enforce her wishes about this and put her foot down. In a previous relationship Arlette also found it difficult to handle the young son and in this case she found it necessary to break it off:
There was one guy Chris, he was really lovely and he had two children. In a way we used to treat his children like our grandchildren. We used to take them away to give Chris and Arlette some time together. The girl was okay, but the boy was just horrible to Arlette. He used to try to trip her up. In the end she couldn’t handle him and she broke it off. Chris was really sad (FN 644).
Hakui was the only adult in the study who had a brain injury and also had children. She was able to do it only because Harry was so active in the parenting role. There were ways in which Hakui’s injury impacted on her children that caused her much heartache. For instance, she had developed an intense sensitivity to noise, so she was constantly telling the children and Harry to be quiet. She would have liked to attend Kawana’s guitar classes, but could not do it because it was too painful for her to be in the room with all those guitars (FN 433). She was rarely able to attend events that the children were involved in, because of her difficulty with noise, fatigue and dealing with more than one person at a time. This was especially the case if these events happened in the evening. Harry told a story about one concert that Marama persuaded Hakui to come to, through sheer determination:
It was Marama’s concert, and she was in various aspects of it. It came to the evening and Hakui was karking it. She couldn’t go, and Marama was really upset, saying that she never went to anything of hers. Finally Marama put her mum to bed with some aspirins and gave her some rest. Then we brought her out, but she was beside herself with headaches for much of it. Marama was wonderful, and a friend later said that they were so good that it brought you out in goose bumps (FN 340).
The kind of support that is necessary to enable an adult with severe brain injury to be a parent did not seem to be recognized by ACC. There were a couple of instances, one just before the research year and one just after, which highlight this. The first was that when Hakui enrolled in a computer graphics course ACC cut her hours by a third, saying that if she could do the course it proved she did not need so much care. The reasoning hardly made sense since Hakui was doing a course that challenged her immensely, and it also meant that she was no longer able to function at any level as a housewife or mother. The whole family came under tremendous stress that year and at the end of it Hakui was no more employable than she was at the beginning (FN 420).
The second instance happened at the end of the fieldwork year. Hakui was assessed and her hours were cut yet again, because the assessor said that the children were getting older and could do more themselves. This seemed somewhat ironic, given that so few of the care hours seemed to be devoted to helping Hakui fulfill her parenting role. Harry struck me as being busy to the point of collapse at times, but the assessor did not include Harry in the process and seemed to ignore the way that the well-being of this family was bound together.
Participation in the wider community
None of the people with brain injury in the study were regularly involved with the support group during the study year, but it was an important factor in the background of all of their lives. All the families were members, with the exception of Hakui who let her membership lapse for the year of the study, because of financial difficulties and also because she felt it did not cater for her needs.
During the study year the committee of the support group was in a transition stage where people with brain injury were running it increasingly. George allowed his name to be put forward, with strong encouragement from Joanna who hoped that it might help him to accept more about his own brain injury (FN 67). During the fieldwork year while he was on the committee he was very active in successfully canvassing for a man with brain injury to run for president (FN 72). He was also characteristically impatient with talk and wanted to see some action about projects that had been stalemated previously.
Two years prior to the study the support group had sponsored both George and Arlette to go on an Outward Bound course. Both Arlette and George were very well known in the support group, both for their own sake and because their parents had served on the committee for many years. For Arlette especially it was one of the most significant things that she did since her brain injury. As Bill said “it was necessary to show people that Arlette could do these things” (FN 632).
There was also an annual camp, which was attended at different times by all the people with brain injury in the study, with the exception of John. There was an activity group, which was rarely attended by any of the adults with brain injury in this study, though Arlette and Hakui used to go to the occasional women’s lunch. If I had not been involved in the support group over the years I would have missed the ongoing significance of the group. However, it was a community that continued over the years to provide a place where people with brain injury could share a sense of identity with others who were similar.
The connection with the peace community was a much stronger one for Hakui and Harry than that with the brain injury community. They had the sense that they were doing work that was politically important and this was a crucial aspect of their whole ethos as a couple. Both of them were ardent peace activists and they were active in the field at many levels. It may not have been paid employment, but it was work that had been very important to both of them and they were both well known for their idealism. I got a sense of this when I was invited to Harry’s 40th birthday and found myself surrounded by a cross section of the community involved in peace.
It was in the context of this deeply committed involvement that Hakui began to refuse to be part of running a peace club for children (the MMM). Harry was understandably upset because they had always been a team in this work. It was not just the decision of a moment, but she seemed to be dismissing their life’s work and passion. It was symptomatic of Hakui’s withdrawal from the social and political sphere and for Harry it seemed that letting go of their shared dreams was tantamount to abandoning the relationship. Her belief that her voice could not and would not be heard was profoundly depressing to hear coming from a person who had been so politically engaged. Harry tried to describe what it was like for him:
Well I think it is an extremely important thing and it is something that traditionally has been an area where we have both had a real interest and at one stage in our relationship the direction that we were heading was for peace education and so to let go of a real interest and involvement in something like that is sort of like saying well, where have we come from or come to in terms of our whole relationship and dreams for the future and that sort of thing. It is a big one. It comes down to that motivational relationship, motivational drive (I 370).
They had persisted in their leadership of MMM in spite of the many difficulties that they had been through, because it was an important connection to the dream that they had both shared and it was a way of bringing up their children to share their values. During the field work year Hakui made it very clear that she wanted to withdraw from involvement with the group. The brain injury meant that she had very limited energy and she wanted the freedom to become more involved in her other interests. Harry tried to keep Hakui going with her involvement with MMM. She used to do the newsletter, very creatively, with lots of cartoons and jokes in it, but it had become a chore for her. A recurrent theme during my visits during the fieldwork year was Harry checking to see whether Hakui had done the newsletter. Every day he would come home and ask if it had been done. She was sick of it; it was simply too much hassle. For her the change had happened the previous year, before the study started:
Last year was such a disaster and it depressed the hell out of me and just knocked us all for six. By the time I got on top of the depression, part of that was deciding, ‘no, I am not going to do that sort of thing’. So MMM stuff that I have traditionally done a lot of the running around to get newsletters out for barely happened this year (I 373).
Hakui got to a point where she simply refused to go on MMM trips. Sometimes her frantic attempts to avoid them in the face of Harry’s enthusiasm led to ludicrous and dangerous situations: for example, the time she threw herself out of the car at traffic lights. In an interview with both of them Harry talked about how hard he tried, and how much he wanted to keep her connected to this joint project that was also potentially a good point of social contact for her.
This is one of the things though, I mean that inability to lighten up a little bit because we come to the trip and you get so panicked by it and if we get you along, you have a good time, but it is sort of like you get all these apprehensions so it is sort of like you are putting in the work but you are not getting the enjoyment out of it … It means that you are getting the drudgery but you are not getting the enjoyment. I want to help with that as much as I can but in a lot of ways I can’t because you are focusing in on doing that drudgery without me being able to help. If I do something I do it wrong (I 372).
Harry felt the loss of the MMM group keenly and he wanted to keep it going, but at the end of the year he listened to Hakui and stepped down from the leadership position. He was sad because it was work that he believed in and it seemed likely to fold without them. He was also wary of doing so because the decision seemed to be threatening the core of their relationship. However, in standing alongside Hakui in this he was also corroborating her judgment that their children were growing past the stage of being involved with the MMM and they needed to find new things to do together as a family. Shortly after giving up leadership both Harry and Hakui were invited onto a council for running an ecological community and this was a commitment that the whole family felt happy about being involved with. It seemed as though they had found a way of moving on constructively.
Another important part of Hakui’s identity was her connection to her iwi, her larger Maori family. Unfortunately, with each brain injury she had progressively withdrawn from Maori affairs, so that at the beginning of the study she no longer had a very visible connection: “I should be one of those who is singing the karakia” (FN 390). Someone in the community approached her to be a mentor for young Maori, which was an honour, but she was full of self-doubt and turned it down. Harry was saddened by the fact that her name was no longer even mentioned in despatches (FN 391). Harry was not Maori, but he had become very involved with bicultural issues through his work with peace issues.
When Hakui expressed an interest in reviving their ties with the Maori language he responded with alacrity. At the beginning of the study year she asked an occupational therapist for some help with this, but the response was a terse “there isn’t anything like that available” (FN 390). The family eventually did find a good ‘te reo’ (Maori language) class that they could all go along to. Harry strongly encouraged this interest and during an interview Hakui had this to say:
He bends over double to fill in the Maori side for my kids and me. And no one acknowledges the work that he does there. Because sometimes he doesn’t give his pakeha side enough space. He is a pakeha, Scottish and Irish, and Australian … He carries many layers, in the hope that our kids … he says that in his old age they will give it back to him. They are learning and they will give it back to him in his old age (I 416).
Unfortunately there was no clear pathway for someone like Hakui to get back into Maori life. She felt quite rejected at times by people who had little idea about her brain injury. Harry could not protect her when things happened within the women’s part of the community. It did not matter what he said to reassure her, she suffered for months on account of incidents like the following where a woman got angry with her for not being more involved in the life of the marae:
Oh yes, that is the problem, the expectation is there, I mean in a car, the last time I was out at the marae when I look back and this woman who was older than me when I started trying to talk she was asking questions about something and she looked so angry at me and again it was because she didn’t understand head injury and I couldn’t even begin to explain. She was saying if you want stuff like that for your kids then you need to be doing it, if you want the language stuff you need to be doing it, if you want that stuff you need to be doing it and it was like trying to say, before head injury I was on committees and I was on committees and I was on committees, I was involved in so much stuff, I was working, I was studying, I was feeding a child, I was running in circles all my adult life, all my life actually, I was on committees for things and doing stuff. And now I am not because I am a fat lot of use (I 388).
After this she made a much more conscious effort to explain her brain injury to other women on the marae. Unfortunately admitting vulnerability is not always the best way of getting support and she felt that these women used the information against her:
I went to the marae yesterday and the women in the meeting were telling me to be quiet. They said that they knew what I was trying to say. But they didn’t know at all. They would not give me the chance to say what I had to say. This is just the normal power thing going on. Nothing to do with marae protocol or anything. But the thing is that these are ones who do know about my head injury and use this as the reason to look away from me (FN 351).
Fortunately the te reo class began to give Hakui a real sense of connection back into the world that was important to her. This was especially evident when the teacher came to visit the whole family and talked to them about the ways that they were trying to become involved in marae life. This woman was able to soften Hakui’s sense of rejection in a way that Harry had not been able to do. After this Hakui was able to put her experience into perspective:
A couple of times I have been shot down by older women … yes, they can be very scary. They love you with their hearts, but they are scary … what they are trying to say is ‘find your heart and you will come through it’. They test you because they believe that you can be tested, they don’t do it to the people who can’t be tested. Which gave me heart. I haven’t gone to the hui because I am scared of being shot down. I have learned so many times that you go and you work in the kitchen and you get there, I have learned that so many times (FN 413).
Alongside the language classes there was other evidence of Hakui’s increased involvement with her Maori side during the study year. Harry took the time to bring her to the tangi of a famous weaver, and later the whole family went to the opening of a marae on the west coast. Her involvement in the Maori community gradually grew stronger and with it Hakui’s vision for a life. She said, “my dream has probably gone more towards I can see being a spokesperson in some way for health, art, Maori, quite a different world. I don’t know” (I 373).
Summary of making a place in the world
Most of the people with brain injury achieved some degree of physical separation from their principal carer during the year of the study. The change was achieved through a process of mutual negotiation, which recognized the readiness of both parties to move on. The carer had to be convinced that safety measures were in place and in this way there is a strong connection between this section and the subsistence section. What happened during the fieldwork year was representative of a series of moves toward separation that had been happening over time. Change would continue to happen and the freedom that this implied was an essential pre-requisite for having a voice in the world. It was also a reflection of the extent to which the voice of adults with brain injury was being heard, at least within their immediate community.
Including the issue of starting a family in this section is a way of highlighting the close connection between care and Action. The capacity to care for another person marks like nothing else the fact that one has a place in the world. The fragility of the adult with brain injury in this respect is in stark contrast to the strength of carers in taking their place as carers. Being able to care in this way can be seen as both privileged and a necessity.
The reluctance of ACC to support Hakui’s parenting activities underpins the understanding of both Lillian and Dorothy that they would be held responsible if either Mike or Arlette had a child. They had to measure their own reserves of strength against the natural drive of any young man or woman.
Involvement in the wider community was not evident in every case and it was clearly stymied in others. However, it was possible for the adult with brain injury to be involved in this way. This was demonstrated by George’s involvement in the brain injury support group and in Hakui’s involvement in Maori affairs. Some of the complications that can attend such involvement were evident also in the dynamics around the peace group for both Hakui and Harry.
This is a long chapter, but it forms the core of the research. In it I demonstrate the ways in which carers ensure not only the safety of the adult with brain injury, but also their capacity to engage in productive work and to find a place in the world. Under each of the sections and subsections there are examples of the ways that carers help to connect the adult with brain injury into the ordinary human condition. It is only through a careful analysis of the skills and deficits of the adult with brain injury, put together with a common sense understanding of their world, that the carer succeeds in finding the precise level at which they can be engaged in an activity.
There are plenty of examples where carers are prepared to do things for the adult with brain injury, thus freeing up energy to do work that is likely to give the adult with brain injury a greater degree of satisfaction. This is particularly evident in the subsistence section, which is further divided into running the household, safety and the household economy. The carer is never simply concerned with doing things for the adult with brain injury, but rather they try to find ways of meaningfully connecting them with the activities that they are capable of doing. Getting the sense of connection with the subsistence right is a difficult balancing act. It is critical for the adult with brain injury to be really connected with this side of life, yet it can also be a burden beyond what they are able to deal with if they do not have sufficient assistance.
The kind of assistance given with productive work was of another order. There was much less evidence of intimacy, yet it would still be impossible for the adult with brain injury to achieve any real independence without a finely tuned understanding of their needs. This became particularly evident where productive work was not engaged in, in spite of the high degree of motivation expressed by the adult with brain injury. Productive activity was an area that most significantly required adequate resources for the carers to make any real progress. These resources were both in the form of funding for paid carers, together with flexibility in how this funding was used.
Finally, it is when the adult with brain injury begins to find their own place in the world that there is the strongest sense of a satisfactory denouement to all the caring that has gone into them. It is in this section that the difference between caring for an adult and a child can be seen, since separation is one of the defining characteristics of the adult in our society. There is a strong case made that separation is a process that goes hand in hand with a continued sense of connection with all of their subsistence needs on the part of the carer. In this way the carer attempts to ensure the safety of the adult with brain injury for as long as they can, while recognizing that adult status brings with it responsibilities. The dilemmas created by this balancing of safety and adult responsibilities can be clearly seen when the subject of children arises. It can also be seen when the whole family engages in the community in new ways because of the lead taken by the adult with brain injury.