How do families manage acquired brain injuries?
Airdate: 
Tuesday, March 14, 2017 - 20:30
Channel: 
SBS

Over  700,000 Australians have a brain injury.

Some of these injuries occur after birth - strokes, falls, accidents, assaults and more – and are known as acquired brain injuries (ABIs). The majority of people with these injuries acquired them before turning 25, and in many cases the primary responsibility of care has fallen up on their nearest and dearest.

What does it mean for a marriage, a family unit, or a friendship after a loved one sustains an ABI? When such an injury can dramatically alter personalities, personal relationships and physical and intellectual abilities?

To everyone else these injuries can go largely unnoticed, but to family and friends, it can be like losing a familiar, beloved person in their life.

Katie and Shane Cummins’s daughter, Isabelle, seems like an ordinary six year-old but her behaviour has changed since an operation to remove a cyst pressing against her brain. Isabelle can be unpredictable, aggressive and tires quickly.

Similarly, Leola Foon’s nature has changed significantly since she suffered an aneurysm a few years ago – though perhaps for the better, as her now-husband Mervyn and parents will attest.

The emotional, physical and financial cost of looking after a loved with an ABI by high.  Some estimate the costs of looking after someone with an ABI for their lifetime can be up to $5 million.

In 2015, Lisa Bryant’s 24 year-old daughter Rikki had a seizure and contracted encephalitis, a swelling of the brain, that caused irreparable damage. The independent woman who was studying for her Masters now requires full time care, and younger brother Zeke finds it hard to spend time with her missing the person she once was. The family is also struggling financially, with Lisa unable to work the way she used to.

This week, Insight hears the emotional stories of Australian families dealing with life after an acquired brain injury. 

 

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Transcript

VIDEO PLAYED.

ISABELLE:  I had a brain injury when I banged my head and then I needed to go to the hospital but at the hospital it was so much fun because all these people came to see me. Sometimes I get my needles, I feels like a bit nervous when they put it in, because it likes stings, so yeah. Yeah, needles are the worst, I don’t really like them.

KATIE:   Isabelle is very good at swallowing tablets.

ISABELLE: Mum gets my tablet box down and she like gets the tablets I need into a medicine cup and then it’s like finished.

KATIE:    There you go.

ISABELLE: When mum asks me to do that, I do it for her. I don’t get angry at her anyway. I just don’t really do what I’m told but when it’s done I do what I’m told and then I things and then we become friends again.

KATIE:  Have you got a bit of fruit in your hair? What’s that? Toothpaste.

ISABELLE: She’s so beautiful and I really love her being with me and I really love her dropping me off at school.

KATIE:  Alright, it’s time to hop in the car to go to school, let’s go. Let’s go kids.

HOURS LATER.

ISABELLE:  I didn’t feel well today, at school.

KATIE:   What happened when you didn’t feel very well.

ISABELLE:  Like, I felt like I was about to vomit.

KATIE:    You look very tired.

ISABELLE:  Yeah.

KATIE:  Do you feel sad?

ISABELLE:  No.

KATIE:    That’s good.

ISABELLE:  Yeah.

KATIE:    Do you feel happy?

 

 

JENNY BROCKIE:   Katie, that's your six year old daughter Isabelle, she looks absolutely gorgeous.  Is that what a typical day looks like in your house? 

KATIE:  Well, I must say there's normally a lot more yelling. But pretty much that's how it rolls at our house. 

JENNY BROCKIE:  Tell us what Isabelle's dealing with? 

KATIE:  So she had an arachnoid cyst.

JENNY BROCKIE:  This was a cyst on the brain? 

KATIE:  A cyst on the brain, so it was quite large, it was 10 centimetres.

JENNY BROCKIE:   How did she actually get the acquired brain injury from the cyst and from the process that went on after that? 

KATIE:  It was the pressure that it put onto her brain and after they operated, the release of the pressure triggered that acquired brain injury and then post that she developed meningitis as well. 

JENNY BROCKIE:   What have the long term effects of that been? 

KATIE:  She has no control over her temper or what she says and how she feels. So sometimes she might love so greatly and then other times she can hate so greatly. 

JENNY BROCKIE:   So what does she do when she has those mood swings?  Give me some examples of the kinds of things she does and says? 

KATIE:  After she came out of hospital I thought we'd go to the park, so we walked to the park and it's about, oh, two hundred metres from our house and that really wore her out. So she fatigued getting there and while we were there she wanted to go up the slides, I had to lift her up because she couldn't climb at the time and then there was this beautiful little girl sitting up the top of the slide and she wanted to go down and the girl wasn't and she said to the little girl:  "Just go down the fucking slide." And I was like mortified.

And another example is if she doesn't like what you say, she can, she can swear, like I just can't believe what comes out of her mouth sometimes. She side to me:  "Mum, your nothing but a stupid little baby dickhead." And I'm like where do you hear that? At that point I can't, it's hard to discipline her because she's already in that anger state so I have to let her cool down, calm down, and then we talk about her language but she can't even remember that she did it. 

JENNY BROCKIE:   And how often do those sort of things happen? 

KATIE:  Initially it was consistent, like constant. 

SHANE:  Every day. 

JENNY BROCKIE:   Still every day Shane? 

SHANE:  Not now. 

KATIE:  So over the past through years we've been to neuro psychs and we've done lots of, yeah, therapy for her to regulate her emotions and try to get her to recognise it. 

SHANE:  Behaviour management stuff as well. 

KATIE:  Yeah. 

SHANE: We've put lots, as you do with your kids, you put a lot of effort into them and just, and she's improved herself.

JENNY BROCKIE:   How do you find, how do you find other people react to her behaviour? 

SHANE:  Well from the outside she looks fine, she just looks like a normal six year old kid. So if she's doing her lolly in the street, lots of people walk past and look, they judge her without knowing the full story and I struggle with that as a father. I really do, I've really struggled with that. I mean, yeah, I struggle with that, I do. 

JENNY BROCKIE:   How do you struggle with that? 

SHANE:  Oh, just, it's been very, very hard on Isabelle, Katie's done a tremendous job to work at it the way she's worked at it with Isabelle. The other kids have suffered.  It's all about Isabelle whereas Grace and Finn and Lexie sometimes take a back seat, but it's not Isabelle's choice to be like she is.

JENNY BROCKIE:   How do you two cope with it do you think? 

KATIE:  I, at the start I was in denial. I thought well, I was pregnant at the time, I thought right, Isabelle's going to be right by the time I have the baby. I just had no idea.

JENNY BROCKIE:   And what about you Shane, how have you adjusted to it? 

SHANE:  Well again, I suppose I was in denial that I just thought oh, well, give it six months, twelve months, two years, she'll be back to the way she was. But we had a meltdown, if you want to call it, in a pretty public place which really affected me because it was eight or ten, it was eight months after the operation and I just went home that day and I cried my eyes out. She's never going to the way she was and I just - that day I realised I'd lost my little girl but I now have, I lost a little girl that we had, we've still got a beautiful daughter…

JENNY BROCKIE:   Well she looked pretty gorgeous in that.  

SHANE:  You've seen her, you’ve seen her at her best. 

JENNY BROCKIE:   We've seen her at her best, I know, I know, well I was really interested in the contrast, you know, to what we saw the day that we came to visit you. 

KATIE:  She put a front on, she put on a beautiful front because I dropped her at school and as I opened the door a little boy walked past and said hi Grace, and she goes "I'm Isabelle", so angry and then he said:  "Oh, you look the same" and she said:  "No we don't." And he said:  "I'm sorry,” and she goes:  "No you're not."  He was being so nice. 

JENNY BROCKIE:   And she gets tired very easily, yeah? 

KATIE:  Quite tired in the morning, so, and she runs on about 200 percent, whereas we might burn 20 percent of our energy doing the same thing, so she needs a lot of rest. 

JENNY BROCKIE:   So is there room for improvement still? 

KATIE:  Always.  We push the boundaries, so we don't let her get away with anything and we take her to therapy, we give her every opportunity that we possibly can to help her to make sure that she will be her potential.  She hasn't got an intellectual disability, she's got a brain injury, and that's what people don't realise. 

JENNY BROCKIE:   Yeah, and this is why we're talking about it tonight.

KATIE:  Yeah. 

SHANE:  That's the hard bit, you can't see it so you just - I struggled with that a long time.

JENNY BROCKIE:   Leola, you worry about whether people believe that you have an acquired brain injury. Why do you worry about that? 

LEOLA: I guess, I mean my brain injury happened six years ago and I probably look quite normal, I have a job and you know, I go to work and - but I think, and it's funny what you guys were just saying, I really resonate with what this six year old is going through. The irrational zero to 100…

JENNY BROCKIE:   Yes, agreement from your husband. 

LEOLA: Yeah, and he is testament to that and I think, I guess at an older age I can hide it much better. I might say things that are completely irrational sometimes and it's really hard to, or for me to justify why certain things come out of my mouth sometimes, or I get very angry, very quickly about very small things. 

MERVYN:  Yep. 

JENNY BROCKIE:   Would you like to elaborate on that at all? 

MERVYN:  It's the littlest things that will set her off and they'd be really basic stuff, like maybe the remote's not where it supposed to be or I didn't cut her sandwich correctly or the TV's too loud and it'd be the end of the world. 

JENNY BROCKIE:   When you say the end of the word, what would happen? 

MERVYN:  It would be, um, a very emotional response to something that's very trivial and that person's treating it like, you know, they've lost someone they love almost and you've just sort of got to deal with it and move through. 

JENNY BROCKIE:   Leola, you had a brain aneurysm in 2010.

LEOLA: Yes. 

JENNY BROCKIE:   Mervyn, you'd been Leola's partner for three years at this point when this happened?

LEOLA: Three or four years. 

MERVYN:  Yeah, three or four years. 

JENNY BROCKIE:   Three or four years, she had to have multiple surgeries on the brain and she was in ICU for three weeks.  What was that like for you? 

MERVYN:  It was tough.  Yeah, it was very tough. It was very surreal. The tough part was the beginning because they don't know what it was and how to fix it and that was extremely difficult to deal with. 

JENNY BROCKIE:   And Leola, how aware were you what was going on during this time? 

LEOLA: No idea. I was in and out of consciousness, yeah. 

JENNY BROCKIE:   So this was all, you know, coming on to you to have to think about? 

MERVYN:  Yeah, and the family as well. They were really supportive, everyone rallied around us and gave us lots of support.

JENNY BROCKIE:   Well they told you there was a one in five chance that she'd die? 

MERVYN:  Yeah.  When they had told us that she had to have the actual brain surgery, her father had to sign a waiver and the doctor told us the chances of her not making it, also the other complications that could happen. So she could survive but then she might be paralysed, she could suffer a stroke, she may not even be the same person, she could totally lose her memory. So she'd just, yeah!

JENNY BROCKIE:   What do you say to her before she went into surgery? 

MERVYN:  They got her ready for the operation and they were about to wheel her out and I said:  "You've got to come back to me because I want to spend the rest of my life with you", and then she looked up at me, kind of opened her eyes in this state of heavy medication and said:  "But you don't have a ring." And that was saying goodbye to your partner and, as I mentioned, not knowing A, if she's going to live; B, what sort of person she's going to come back with, probably one of the hardest things I've had to do. And she said that and it made me laugh. I was crying, I remember, but it still made me laugh and it really gave me some sort of sense of hope. 

JENNY BROCKIE:   And what was like for your hearing him say that, do you remember that? 

LEOLA: No, I don't.  I know the story though and I think it's quite funny, I think I'm quite the comedian. 

MERVYN:  I'm glad you think it's funny. I'm glad you think it's funny. 

JENNY BROCKIE:   And you got married just recently? 

MERVYN:  We did. 

LEOLA:  Yes. 

JENNY BROCKIE:   Congratulations. 

MERVYN:  Yes, I made good on that promise, I got ring. 

JENNY BROCKIE:   Leola, once you were out of surgery what was it like for you physically? 

LEOLA: Oh my gosh, it, it was harder than before the surgery, recovery is excruciating.  After the surgery obviously they cut my skull open and everything and that pain in itself is, is so hard to deal with. I couldn't move for three entire weeks, I remember I told Merv to leave me at one stage because I knew that it was going to be really hard. I would cry every day, I couldn't walk, I had to learn how to walk again, I had to learn how to talk again and even still, you know, six years on now I'm still recovering.  They say that you don't really recover from a brain injury.  

JENNY BROCKIE:   And you have hearing problems? 

LEOLA: Yeah, I'm completely deaf in my right ear. I will be permanently deaf forever, so it's been okay for the last six years.  It's very frustrating, there's still days where I break down about it. 

JENNY BROCKIE:   But again, hidden, you know, to look at you and nobody would…

KATIE: Isabelle's blind as well, she's blind, Isabelle's blind in one eye and you wouldn't know, and again, the messages get in but they don't get back to the brain. 

LEOLA:  Yeah. 

KATIE:  So it's very much hidden. 

SHANE:  So much so a hidden injury, I asked Leola did she have a child with a hidden injury and I sat next to her. I was just, and I should know, like you would think me of all people. 

JENNY BROCKIE:   Of anyone…

SHANE:  Should be able to say but you just can't.  It's just not, it really, like I felt very embarrassed when I asked you that.

JENNY BROCKIE:   Leola, how would you describe your personality before the injury? 

LEOLA:  Well, my dad's in the audience, he used to call me an ice queen.  So before the injury I was quite, I guess I can say it now, arrogant, stubborn.  I would only speak to my parents when I needed them for something. 

JENNY BROCKIE:   Is that right? 

LAWRENCE:   Yep. 

JENNY BROCKIE:   Yep, yep, big nod. 

LAWRENCE:   Very much. 

LEOLA: I was often rude to many people, you know, the whole attitude problem. 

JENNY BROCKIE:   Mervyn, you fell in love with this woman? 

MERVYN:  I know right.  Were you like that?  Maybe not to me. Maybe I was the lucky one, yeah. 

JENNY BROCKIE:   And now, how you would describe your personality after the injury? 

LEOLA: I have, I think I've done a full turn around.  So I appreciate life far more than I ever did. You know, my parents, my family were there every second the whole way through so I'm forever in their debt. 

JENNY BROCKIE:   Grahame, you study brain injuries and we're talking about acquired brain injuries tonight. What does that include? 

GRAHAME:  So an acquired brain injury is an injury to the brain that occurs after birth.

JENNY BROCKIE:   What kind of injuries can it include? 

GRAHAME:  Yeah, so there are traumatic brain injuries which occur as a result of car accidents, falls are very common, assaults or a cowards punch can leave people with a brain injury, gunshot wounds, drug overdose, all of these different mechanisms can result in an acquired brain injury. 

JENNY BROCKIE:   And how common are they in the community? 

GRAHAME:  So they're very common, there's about two and a half thousand moderate to severe injuries that happen every year. 

JENNY BROCKIE:   And can you predict what kind of recovery is possible after an injury to the brain? 

GRAHAME:  Yeah, that's very difficult and I think part of it is because the brain is such a complex organism and so it depends what parts of the brain are damaged, it depends on the type of damage that occurs, how much recovery the brain can make.  Then it also relates to the sort of person to which the brain occurred to, the sorts of resources that people might have in terms of families, other supports.

JENNY BROCKIE:   You can't kind of look at somebody and say you're likely to follow this trajectory? 

GRAHAME:  No, there is a plateau that occurs at a physiological level in terms of the brain healing itself. It's more complex with children because there's still a whole developmental process that's taking place. But then there's the adjustment, the learning, people experiencing their lives working out what's changed and, as Leola was saying, this can take years.

JENNY BROCKIE:   Perminder, you're a neuro-psychiatrist, what's most effective from your perspective in helping people with brain injuries, acquired brain injuries? 

PERMINDER:  Many brain injury units focus a lot on physical rehabilitation but there is the other aspect of rehabilitation which relates to cognitive function and emotional function of the individual. Often that is not catered to as well and we see that here, for example, in Leola's case I'm not sure whether there was much attention given to cognitive rehabilitation in her case or to look at her emotional side really. 

JENNY BROCKIE:   Was there, was there much attention given to that?

LEOLA:  No. 

MERVYN:  No, that's a really good point, there was none, it was all focused on the physical. 

LEOLA:  We did some cognitive testing but not around emotional response. I went and seeked help myself. 

PERMINDER:  I think both are lucky, both Isabelle and Leola were lucky that they had a very stable environment, they had families that were supportive, consistent in their responses to somewhat erratic behaviour.

JENNY BROCKIE:   Lisa, you're daughter Ricky had a seizure in October 2015 when she was 23.

LISA:  Yeah.

JENNY BROCKIE:   And after that she had encephalitis? 

LISA:  Yeah, she was diagnosed very quickly with encephalitis which is a swelling of the brain but there was also what's called a hypoxic brain injury where there wasn't enough oxygen going to the brain at one stage. 

JENNY BROCKIE:   What was her life like before this happened? 

LISA:  She was, as I said she'd left home when she was 17, she'd gotten her undergraduate degree in communications, she'd travelled around the world for eight months by herself and she'd come back and was doing her masters. She worked for a series of not for profit organisations while she was studying.  She was very independent and she was very smart and very loving. 

JENNY BROCKIE:   And how is she now, how has it affected her? 

LISA:  She has a severe brain injury. She can't, she can't do anything for herself. She's, that's not true, she…

ZEKE:  She's learning to do things for herself. 

LISA: She's learning to do things for herself. 

ZEKE:  But she requires 24/7 care. 

LISA:  Yeah, she can't be left by herself at any stage.  She's incontinent. She has motor planning issues so for example, lying in her bed she can't work out how to get out of the bed so she's trapped there. 

JENNY BROCKIE:   What about her mood? 

LISA:  Because of the side of the brain that her injury occurs, occurred in which is the right front side, she's permanently happy. So she's okay. 

JENNY BROCKIE:   And would it have been before? 

LISA:  Oh no, no. 

JENNY BROCKIE:   You didn't want her to join us tonight? 

LISA:  No. 

JENNY BROCKIE:   Yeah? 

LISA:   I don't want to expose her to understanding that she has a severe disability at this stage on the chance that maybe she'll get better. 

JENNY BROCKIE:   How is her speech? 

LISA:  She doesn't have access to all of her words so she has what's called aphasia where she has perfect receptive speech, so I could talk to her about anything and she would understand the words but she can't find words that she would have normally had. This is someone who has read more books than most of us would read in a lifetime, she's been a voracious reader all of her life, her vocabulary is extreme and now it's quite small. 

JENNY BROCKIE:   Zeke, you're the younger brother, you're Ricky's younger brother, what's it like for you? 

ZEKE:  Really difficult. I guess my sister was probably the closest person to me in my life and as my big sister, she cared for me, and I guess now in some ways it's the other way around. Yeah, so it's been hard, it's been really difficult. It's changed my life completely. 

JENNY BROCKIE:   You used to spend a lot of time together? 

ZEKE:  Yeah, yeah, so now I try and avoid going home as much as possible. I've thrown myself into work and it's not because I don't love her, it's because I find it really difficult to be around her because she’s not the same person I had in my life before.  

JENNY BROCKIE:   What was it like for you seeing her in ICU? I mean we've got a photo of her when she was in hospital, what was that like for you? 

ZEKE:  Horrible.  I was scared to touch her. I was scared to be in the same room. 

JENNY BROCKIE:   There's a "no bone" sign on that photo. 

ZEKE:  Yeah, I kind of found that quite funny at the time. That was the thing that occurred to me is that everything became a lot funnier because it was the only way that we could cope. 

JENNY BROCKIE:   And that was because they had to remove part of her…

ZEKE:  Yeah, so they removed the front portion of her brain into…

LISA:  Her skull. 

ZEKE:  Her skull, sorry, not brain. 

LISA:  It's called a craniotomy, they removed both, it was…

JENNY BROCKIE:   To relieve pressure. 

ZEKE:  Yeah. 

LISA:  To enable the brain to expand because otherwise the brain would have pressed down on her brain stem and killed her. 

JENNY BROCKIE:   Zeke, you were talking about what it was like seeing her in hospital. 

ZEKE:  Yeah, so already I guess I was trying to avoid her. You know, I was too scared to confront it. I think for at least me I was completely unprepared for the fact that there wouldn't necessarily be my sister left. You know, she might be breathing…

LISA:  I think we'd talked about it. 

ZEKE:  We'd definitely talked about it, but I never really expected it to happen.

JENNY BROCKIE:   And what's communication like with her now? 

ZEKE:  Very limited.  Our conversations go "hi, how are you", "I'm good, how about you", "yeah I'm okay", "what did you do today?"  "Oh, nothing much" and I can know exactly how that conversation goes. 

LISA:  But Ricky looks up at you as if, when Zeke walks into the room her face lights up. He's still, you know, so important to her and I think part of it is that you don't, like I have much different conversations with her but you can't do that and I understand why you can't do it, but she is capable of having much, you know? 

ZEKE:  Yeah. 

JENNY BROCKIE:  This is relatively recent, isn't it, really. 

ZEKE:  Twelve months ago. 

LISA:  Yeah. 

JENNY BROCKIE:   Twelve months ago, yeah.  Massive change for your entire family. What's it been like for you Lisa? 

LISA:  I, um, I've got my own business, I work for myself, I used to work, you know, like 60, 70, 80 hours a week, now I'm lucky if I get five hours a week work in. I care for her 24/7. I hardly ever see Zeke. 

JENNY BROCKIE:   Is that because you avoid going…

ZEKE:  I definitely avoid it. It's definitely something that occurs to me that I find it so difficult to be around Ricky that I'm also not there for Lisa and I really, really want to be but it's, it's very difficult. 

LISA:  But you are there when I, you know, if Ricky has a seizure and we have to go hospital, Zeke's the first person I ring and he's the first person that's there.  So you know, it's not like he's abandoning his duty but a lot of the…

JENNY BROCKIE:  But I think it's really interesting that, you know, you're speaking so frankly about this and how it is changing the family dynamic beyond just Ricky, but into your relationship with one other. 

ZEKE:  I think we have to be honest about it because otherwise we're going to being become resentful of each other, the family's going to split apart.

JENNY BROCKIE:  And you've moved out of the family home? 

ZEKE:  There's been periods where I've been living at home on and off but it's probably once a week, once a fortnight that I stay the night. 

LISA:  One of the other things…

JENNY BROCKIE:   And Lisa, you've talked about, I asked you how you're coping and you talked about the family but how are you coping? 

LISA:  I'm not. You know, like I am in a whole heap of ways, you know, you care for the child that you have, you know, as a mother that's what you do, but as well as, like you know, I've lost my daughter.  It's, brain injury is often called a continuous grief because it's not like she died and I grieved and people understood what that was about, we have a structure for grieving when someone dies, we don't have a structure for a survival but a survival of a totally different person than it was that you had before.

We're now struggling financially because I can't do the work that I used to do. But there is some positives as well, like Ricky's friends, Ricky had many, many friends because she was so loving and caring, I now feel like I've got a family of about ten different 24 year olds, you know, children.  It's brought my sisters and I who I need to rely on a lot closer. 

JENNY BROCKIE:   Leola, how has your injury affected other aspects of your life, like your social life? 

LEOLA:  I don't socialise as much anymore. 

JENNY BROCKIE:   Friends? 

LEOLA:   My closest friends were there through the whole, you know they were supportive, they came and visited at the hospital, they were with my family when everything went down and they understand, but my wider social circle I've kind of distanced from completely.

JENNY BROCKIE:   What about your mental health? 

LEOLA:  It was far worse towards sort of in the first three years. 

JENNY BROCKIE:   In what way? 

LEOLA:   You know, we talk about depression as well, there's a darkness and it still happens now six years on. I do know I'm dealing with it better, I'm on medication and all that kind of stuff but there's a darkness that I can't explain the kind of depression it was. Maybe Merv with explain what kind of effects it had but there was…

JENNY BROCKIE:  How bad did that get? 

LEOLA: Very bad, I've held knives to my wrist, I've wanted to jump in front of trains and that has happened recently. I used to say to him sometimes you know, if it wasn't for you I would be dead 100 percent, if not from the brain injury from something else. 

JENNY BROCKIE:   And you had issues with alcohol as well? 

LEOLA:  Yes. 

JENNY BROCKIE:  For a while? 

LEOLA:  So after the brain injury my doctor said I could never get drunk again which I said oh okay.  So I didn't drink for a while, what, a month, no, a year, six months? 

MERVYN:  About six months. 

LEOLA: About six months I didn't drink and then I started drinking again and I guess you just go into this downward spiral. I would just drink and drink and drink and drink until I blacked out and he threatened to leave me and I still don't think that was what made me stop. I think it's a personal decision. You, only you can make you stop.

JENNY BROCKIE:   How did you cope with all of that? 

MERVYN:  Yeah, it was difficult. It was very difficult. But again, to bring it back to the reason behind it, it was because of the injury and I just had to keep on reminding myself and have that understanding that she is a different person now physically, mentally, emotionally. You know, especially she talks about the first couple of months, her brain was physically rewiring itself, so she was healing and also trying to find out and remember and yeah, find who you were and get back to it. 

JENNY BROCKIE:   And just getting back to this question of you together, did you consider leaving? 

MERVYN:  Yeah, I did. 

JENNY BROCKIE:   Seriously? 

MERVYN:  Yeah, yeah, yeah, in the darkest times I did. It was, and…

JENNY BROCKIE:   What stopped you? 

MERVYN:  Well love I guess, I do love her. Sometimes I don't but, no, something that my parents always taught me as a kid is that regardless of how bad the situation is that you're in, you've always got a choice.  It's a choice of attitude. Even if you don't have a choice of what direction you can take, you have a choice of how you react to something and I wasn't going to give up on her because of that. You know, she wasn't that person before and she deserves more than that. 

LEOLA:  Life is so much more fun now. 

MERVYN:  Yeah, I guess. But, yeah, that was, yeah, I did consider it because I'm human, you know, no one's perfect, but I never obviously did because you know, I wanted to be with her. 

JENNY BROCKIE:   Samantha, you work with the families of people with acquired brain injuries. Relationships can change enormously in these situations. What advice do you give people when relationships become strained, as a lot of them do? 

SAMANTHA:  I have to say Merv, I think that you're an exception to the rule for the many people that I work with. A lot don't stay because it is an extremely difficult situation to be in. The advice often is about supporting the individual to understand the brain injury and what that means for the person. The other advice that I give family members and particularly partners is that it's important to have your own life. You need to have a separation from that situation. You can't be there in it 24/7 however much you love the person. 

LISA:  That's a luxury to be able to get away that a lot of us don't have. 

SAMANTHA:  I 100 percent hear you and that's a question I get asked constantly. I guess it's like the old scenario, we say when you're on an aeroplane and the oxygen mask comes down, what's the first thing they tell you to do?  Put it on yourself first before you put it on the child. If you don't look after yourself and you end up with a mental health issue where you're not able to actually function, you're not going to be able to support the person who supports you. 

LISA: I hear that from therapists all the time but you know what? This is my son, my son also needs my attention because he's suffered from this as well, yeah. 

SAMANTHA:  I guess that's what I'm saying in terms of needing your own life that actually paying attention to Zeke and having your relationship there and maintaining that relationship is just as important as you said as being able to provide your daughter Ricky with support. 

JENNY BROCKIE:   Okay. Sally, you'd been married to your husband for about eighteen years when he suffered a traumatic brain injury. How did that affect him? 

SALLY:  So he was always, um, a very gentle, beautiful man and he still is very gentle as well but yeah, he's just totally changed his personality. Very childlike, doesn't have any worries in the world. So the emotion doesn't waiver much at all, it's very flat lined. 

JENNY BROCKIE:   How did it affect your marriage? 

SALLY:  Um, like Lisa was saying, you just totally do everything for this one person and we did have the princess syndrome happening in our house, I'd never paid a bill in my life, I'd never put gas in my car and things changed very quickly. I had to learn where our bank loan was and how to pay bills and yeah, to really move our family five hours back to where our family, my family was. Everything changed. 

JENNY BROCKIE:   Big changes? 

SALLY:  Very big changes. 

JENNY BROCKIE:   You stayed with him for five years? 

SALLY:  Yes. 

JENNY BROCKIE:   Before you decided to separate. Why did you eventually decide to separate, do you think? 

SALLY:  It was affecting me emotionally because my needs obviously weren't being met but they were never really going to be met and I just pretended that everything was okay and everything wasn't okay inside. So the anxiety rose considerably and it was just quite difficult in the family situation. I was manipulating the atmosphere all the time to keep things calm. 

JENNY BROCKIE:   Because he'd become more aggressive? 

SALLY:  Yeah, yeah. 

JENNY BROCKIE:   What was it like making that decision to leave? 

SALLY:  The most agonising decision I've ever made and it still goes through my mind for hours most days, very, very difficult. 

JENNY BROCKIE:   And how do you feel about your decision now? 

SALLY:  My faith is the only thing that gets me through, but it's my faith that told me I had to stay as well I thought at the time because that's what you do when you've got really strong belief, you stay together. So in one sense that's what held me there for such a long time but it's what gives me strength today. 

JENNY BROCKIE:   And how have other people reacted? 

SALLY:  Um, I have had nothing but support. People have said to me you did such an amazing job for such a long time. You had to look after yourself, I struggle with that comment, people say that to me all the time and I still struggle with looking after myself when growing up I just believed you put others first. So our world says look after yourself, that still doesn't always sit well in my mind. 

JENNY BROCKIE:   Samantha, how often do relationships break up after an acquired brain injury? 

SAMANTHA:  Probably more times than not.

JENNY BROCKIE:   Tish, you've been living with a brain injury for more than twenty years now following a car accident in Sri Lanka, what sort of things do you struggle with now? 

TISH:  I really have worked very hard to get my life back on track because I didn't want to accept that, they were going to put me to a nursing home, I want to get back on track actually. I've written a screenplay about a soldier in Afghanistan with PTSD and I've got two masters degrees. 

JENNY BROCKIE:   Since the injury? 

TISH:  Yeah, yeah, actually it started off me remembering shopping lists and working on my memory and so now that's what I've done.

JENNY BROCKIE:   Nanda, you're Tish's mum, how has this impacted your life? 

NANDA:  It actually ruined my whole life. My life stopped on the day that it happened.

JENNY BROCKIE:   And Tish, what is it like for you now, what are the things that you find hardest now? 

TISH:  Hardest is I'm completely, can't use my left side. Like I have problems, I'm left handed and so I can't write which is a real pain because I did my degree in international law and I couldn't write any notes, that was difficult, and just a lot of the things, my balance, no balance at all. 

NANDA:  But I thought she's well enough, I mean she did two masters degrees after she came back from this situation and one was in international law and she hasn't got a job. 

TISH:  I'm making films. 

NANDA:  That's on…

TISH:  You doesn’t see me getting out and getting on a train in the morning. 

NANDA:  No, but she started on…

JENNY BROCKIE:   This is an argument lots of people have anyway about, you know…

TISH:  Not this brain injury…

JENNY BROCKIE:   No, that's right. So you're making films and you feel you're working but mum doesn't?

TISH:   Yeah.

JENNY BROCKIE:   Okay, Perminder, we just heard about someone getting too masters degrees after a brain injury and I wanted to ask you about neuro plasticity which we hear a lot about the brain's capacity to develop and to adapt. Does that play into recovery and to what extent, you know, can people develop skills afterwards or…

PERMINDER:  Absolutely. I think, see medicine traditionally had a concept that brain does not recover... now that actually has been turned on its head to some extent, that we know that the brain does have regenerative capacity. So what the brain does is in terms of a particular lesion occurring or an injury occurring in a particular part of the brain, the circuits or the neuronal networks that are involved in that region try to recover, even though the brain cells may not recover, and then also the other networks in the brain may try to do the same function as this previous network which has now been damaged.

JENNY BROCKIE:   So does that mean that the idea of how long you can keep improving is infinite, you know, or does it mean…

PERMINDER:  There are limits of course and we know that we see, for example, Tish has been working very hard at her cognition, for example.  She has gained a lot of her abilities, regained a lot of her abilities but probably it doesn't come back to a previous level. So there is a lot of scope for improvement but perhaps not an infinite.

 

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GEOFF:  Well I just play the harp because that's about the only thing that keeps me sane. I practice all day. My teacher encourages me with beer. He tells me he's going to bring a beer in for each single note that I get. I'm still waiting on that.

I had to learn how to feed myself again. How to talk pretty much. I'd like to see my mates come and visit me but my mates have all disappeared off the face of the earth.

MARK:  Another week and getting closer to getting you out of here. Get you a place to live in.

GEOFF:  Dad comes and visits at least once a week. I think it might have been a bit of a shock to the system initially. I guess it really is when your only son almost kicks a bucket before you. Me and dad have always had a fluctuating relationship. We would fight occasionally because my lifestyle was a little bit off the rails. He didn't really agree with that. I used to go out to a lot of nightclubs and as the young people say get on it, partake in the drug culture of Melbourne. I think we're closer these days. You sort of realise your immortality when something like this happens. I just want to make sure he knows that I love him. These days it's doing my rehab and working as much as I can on that.

 

 

JENNY BROCKIE:   Mark, that's you with your son Geoff who is 37, he had a brain aneurysm last year. What was your relationship with him like before the injury? 

MARK:  It had been quite challenged for quite some time.  As Geoff said, he was living in the hippy gypsy drug culture. We had lots of arguments about that, that culture, and it had driven a fair bit of distance between us. 

JENNY BROCKIE:   And has the injury changed your view of him? 

MARK:  It's, it's been fascinating in a number of ways. Geoff went cold turkey on marijuana, alcohol, cigarettes and everything else in one fell swoop and he, he's benefited from that and that's, that's opened the door to a different sort of a conversation with him and the thing that's fascinating is that he can recognise all of that. Even though his cognitive senses have been shot to pieces, he can recognise and talk about that phase of his life. 

JENNY BROCKIE:   What happened with his injury? 

MARK:  So Geoff was at a bush doof, so right up in the forest north of Melbourne. 

JENNY BROCKIE:   Can you tell people what a bush doof is who don't know? 

MARK:  A bush doof is these amazing enormous concerts that the hippy crowd put on in the bush, attracts all sorts of people and this is really fascinating. It was pack up day, Geoff and his mates were packed up, he was sitting in the front of the van and an aneurysm in his brain just exploded. It was classified as a grade 4 haemorrhage, 20 percent survival rate.

How lucky can you be? About 50 yards away there was a nurse with five years neurosurgery experience that just happened to be watching. As she sprinted across she tapped the guy on the shoulder and said I need your help; he was a doctor with two years experience in emergency. So they kept him alive until the ambulance arrived.  Seven hours of neurosurgery later, thirteen days in a coma, 23 days in ICU, three months in a high dependency ward. It's fourteen months now since he moved into the rehab space. 

JENNY BROCKIE:   Grahame, is there a connection between substance abuse and brain injuries, acquired brain injuries? 

GRAHAME:  Excessive alcohol use can cause brain damage itself. People who are intoxicated are at high risk of being involved in assaults or having falls so they might sustain a traumatic brain injury, but then longer term a proportion of people will either return to a life of substance use, or start abusing substances even though they didn't have a pre-injury history of that.

JENNY BROCKIE:   Mark, Geoff is still recovering in that hospital unit where he's been for over a year. So what will happen next, what's the plan? 

MARK:  He is at the point where the hospital believes that he should move back into community. The first challenge that we have is to prevent him from being sent to a nursing home. We're pretty confident that we can do that, NDIS looks to offer us some wonderful opportunities to really sink his care plan into the reality that this sort of a brain injury does keep on improving, if you work on it, for potentially a lifetime. We had a visit recently from an old friend of mine who had a very similar brain injury 25 years ago, Pete was told that he'd never walk again.  Pete came to visit us to tell us that he's just got back his CAMS racing licence, so he not only walked but he learnt to drive a car, learnt to drive a manual car and was then allowed back on a race track.

JENNY BROCKIE:   Tish, how do you see your future now? 

TISH:  Married and living happily ever after. 

JENNY BROCKIE:   So you've moved, you've moved away from mum? 

TISH:  Yeah.  I'm doing a lot of public speaking with Rotary and so I'm working on my self-development and getting my pathway back on track, it was severely off track but now it's back on track. 

JENNY BROCKIE:   And Nanda, your future, how do you see it? 

NANDA:  No future for me. Now 22 years ago it happened and our life is non-existent now.

JENNY BROCKIE:   Sally, you're in regular contact with your husband now even though you've separated. How do you see the future? 

SALLY:  I still would love to have a close relationship with him and I think that that's something that he would like and I'd really like to see the relationship with his kids continue to develop as, you know, he really puts in a really big effort there. 

JENNY BROCKIE:   What about your life? 

SALLY:  I just said to a friend the other day I will be happy, I will have peace, so I will be fine. 

JENNY BROCKIE:   Leola, you're back at work full time in a management role in marketing, how are you going? 

LEOLA: Really well. In the last six years I have almost tripled my salary and now I head up a marketing and a sales team at an international company. And I go back to it all the time, if I didn't have the aneurysm, I don't think I would have gotten as far as I have. I hear everyone else's stories and people look at me and you would never assume that I've gone through what I have and what's breaking or dying inside of me.

Before the injury I was very complacent, very, you know, I had an attitude, didn't care about anything and now I care passionately about things that I never thought I would care about before. And now I monitor it and this, this man here is, is the reason that I can still do this because he, I don't know how I found him or how he was brought to me but he understands me better than anyone else in this world. You know, like I said before, you can't see my injury but there's something very broken inside. 

JENNY BROCKIE:   And Mervyn, how do you manage your wellbeing and balancing your wellbeing with what Leola needs? 

MERVYN:  It's perspective.   So everything obviously happened to her and she's gone through a lot but then when it gets negative to me I just remember that okay, it is bad and I'm receiving some of that negativity but I didn't go through what she went through. 

LEOLA: I didn't go what you went through.  

MERVYN:  I guess there's that natural synergy that we have and empathy. 

JENNY BROCKIE:   Well there is it right there. 

MERVYN:  Yeah, that's what I'm saying, yeah. 

LEOLA:  If it was the other way around, and I've told him this a million times, if he was in the death bed I would not have been able to do what he did, no way. 

MERVYN:  You don't know till you're there. 

JENNY BROCKIE:   Zeke, the future and what about Ricky's future care? 

ZEKE:  So something that I'm always aware of is the fact that Ricky and I are both quite young and so as she gets older, Lisa's also going to get older and so at the end of it it's probably going to be me taking care of Ricky.  Ricky's likely to always need care, that's where it's at, in my mind at least, and so Lisa isn't going to be around all my life, all of Ricky's life, so I need to be conscious of the fact that at some point Ricky's going to be something, she's going to have to be person that I need to look after. 

JENNY BROCKIE:   Lisa, how do you see the future? 

LISA:  My future's going to be great, Ricky's is going to be great because Ricky has come so far in the year since it happened. She had to learn how to walk, she had to learn how to talk, she had to learn how to feed herself. She's managed all of that.  Zeke's not going to have to look after her because I'm going to bring her back to you. We're going to do it.

LEOLA: And you will, you totally will, I was there. 

ZEKE:  Yeah, it does give me who lot of hope hearing all of these situations and knowing that twenty years on, you know, you can have two masters degrees. 

LISA:  Going to be fine.  You might even be able to give mum the grandchild one. 

ZEKE:  Okay, realistic expectations.  

JENNY BROCKIE:   You're ramping it up in here. Yeah. 

ZEKE:  It gives me hope that…

LISA:  I honestly, like I don't talk about this to anyone, I don't tell anyone about the dreams that I have inside but I'm not going to give up on my daughter, she's going to get better. 

JENNY BROCKIE:   And Katie what about Isabelle, she's six and have you and Shane discussed her future? 

KATIE:  I think she's going to have a marvellous future. I don't even, I'm not even considering anything else. She is bright, she's gorgeous, everyone who meets her is touched by her and I just think that her future is so bright.

JENNY BROCKIE:   Shane, what do you think, what sort of thoughts do you have? 

SHANE:  Sorry, I'm a bit emotional but I suppose I concentrate on the here and the now, but if you look at, like Izzie's so young, she's got so much going for her and she'll have as good an upbringing as we can possibly give her and she'll have the world at her feet. I really reckon that. 

JENNY BROCKIE:   Thank you all so much for joining us tonight, it's been really interesting to talk to you and for sharing so much of your lives and your stories, thank you. And that is all we have time for here but let's keep talking on Twitter and on Facebook. Thanks very much everybody.