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Episode 9

The impact on family and friends after a brain injury

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In previous episodes, we've talked about how having a brain injury can impact the injured person, but it's also important to acknowledge the wider impact of brain injury, and particularly the effect on family and friends - the people around the injured person. 

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Ashwini 00:00:23 - 00:01:27

So in previous episodes, we've talked about how having a brain injury can impact on the injured person. But I think it's also important to acknowledge the wider impact of brain injury, and particularly the effect on family and friends - the people around the injured person.

It's like coming to terms with loss or bereavement; there is a grieving process for the person that was before their injury and coming to terms with the trauma of watching that person whilst they're in hospital in the immediate aftermath after their injury. 

Thinking about you, Brooke, from the moment of that 999 call to the emergency services, it was all about you, it was all about your recovery - making sure that you were in the right place, getting the right treatment and so on, but I'd like you to talk to us about how your family and friends were impacted and what they've told you about their experience.

Brooke 00:01:27 - 00:02:28

From the start everybody was really accommodating to me, like I always would sit in the front seat of the car and then everybody would like make way for me, if you know what I mean. The first time that I had it brought to my attention, I was out with my mates and we always used to do that thing, you know, when you go into the to the car you'd shout shotgun first to get in the front and everybody did that and I was thinking, 'but I get in the front seat!', and then I was like, 'No, you don't, that's just how my family have been treating me!'

So yeah, it can be another fake environment like I was talking about in the hospital. It's not like the real world - I came first for everything, I always got the comfiest seat, I always got the best. In a way that kind of went to my head and it made me a little bit selfish. Just like having to adjust to the fake environment of the hospital, you do have to adjust to that - being like privileged, if that makes sense.

Ashwini 00:02:28 - 00:03:13

Yeah, I suppose it's also there's a lack of insight there in that your reality has changed - you're in this fake environment, but you don't necessarily realise that that's what's going on, and the thing that would help you to realise that, to process the changes around you, would be your brain, but that's been compromised - that's been injured, so you've not necessarily realised that people are making more accommodations for you. I suppose as time goes on and your recovery progresses, some of those accommodations might pull away a little bit and things will start getting back to normal, and that can probably be a bit of an adjustment as well.

Brooke 00:03:13 - 00:04:10

I suppose my family, I mean my accident was so bad at one point my dad had come back from work and he asked the consultant what my chances were and they said I had a 30% chance. So I mean, when people say they nearly died, I very, very nearly did die. I think they were kind of so thankful to still have me, but that kind of showed in how they treated me – I was treated a bit like a prince almost. 

I used to get fatigued and they'd say 'Oh, you're getting tired, Brooke, you're doing this, Brooke, are you alright, Brooke.' And you kind of get used to that – but it's not something you want to do, you don't want people fussing over you, but I guess you can kind of miss it when it goes so you do have to readjust to that. It's like you were in a fake environment in hospital and then when you come out it's still a bit of a fake environment, and it takes a while before you get back into the real world. Probably in some sense, I'm still not there.

Ashwini 00:04:10 - 00:04:27

Have you ever spoken to your family about how they coped whilst you were in hospital. I know you've spoken a bit about the impact on your mum, for example, that she basically moved in with your sister and she lost a lot of weight.

Brooke 00:04:28 - 00:04:29

Lost a lot of weight, yeah.

Ashwini 00:04:29 - 00:04:42

Yeah, but in terms of the actual grieving process for the person that you were before, I mean, are you even yourself aware of how you might have changed?

Brooke 00:04:42 - 00:05:01

I don't think I have! Well obviously I've changed, everybody changes, but I don't know if I've changed that much. I suppose I had some like you know, speaking inappropriately and things like that, I've showed some symptoms of brain injury, but I speak to a lot of people that I've known from a long time ago and they said they don't really think I've changed at all.

Ashwini 00:05:01 - 00:05:03

OK.

Brooke 00:05:03 - 00:05:58

But I suppose with me, I guess it's subtle. It takes somebody to maybe stay with me for a little while to notice that I have changed. Like I would be, especially with the tiredness thing, particularly now, I'm fine with it, I can present to somebody as if I've not had a brain injury at all. But somebody with a keen eye, somebody who knows what they're looking for, would spot the symptoms. For example, I need to go for a rest and if I do something mentally challenging then I will be exhausted. 

When you go into your recovery, it will be much more noticeable if you've not seen somebody for, say, six months because you see day to day and so do your family, so you don't really notice the little changes that you're making. But if somebody hasn't seen you for six months, a year, then they would always notice a massive distance.

Ashwini 00:05:58 - 00:06:01

You've got a sister…

Brooke 00:06:01 - 00:06:03

I've got two sisters, yeah.

Ashwini 00:06:03 - 00:06:04

Two sister – are you all quite close?

Brooke 00:06:04 - 00:06:36

I think it brought the whole family much closer, which was a good thing and I suppose that's how they got through it - everybody was together, weren't they. It's a bit weird really because I was like the focal point of this massive event, but I don't really have that much memory of it. When I was having the most stressful times in my life in hospital, I was on morphine and drugs and stuff so I can't really remember that much of it neither.

Ashwini 00:06:36 - 00:06:55

I mean you, you just said that it's brought you all closer together as a family, which is obviously a positive, but for example, has your relationship with your sisters changed since your injury, do you think? Or have they told you that the way that they treat you now is different to how they treated you before?

Brooke 00:06:55 - 00:07:37

I don't know - I get a sense sometimes that I do, like I'm nearly 40, I get treated like a child! But I suppose everybody says that when they're with their parents don't they, or a lot of people say that. I does annoy me when I feel like I'm being treated like a child yeah, but I suppose you do go back to being like a little kid again because your mum goes back to caring for you again and you have grow up and prove yourself again, almost. That's probably why a lot of public speaking, a lot of things I do, some of the incentive behind that – to prove that I'm an adult – I'm brave and I do things!

Ashwini 00:07:37 - 00:08:06

Well I can see that!

Picking up on what you said there about your mum caring for you, and of course, I know lots of mums have that and lots of people will say that you know, when they go home or whatever that they do kind of revert to that, but have your parents talked to you about perhaps, you know, being more concerned for you since your injury, even now, just more worried about you and your health.

Brooke 00:08:06 - 00:08:10

Uh, probably yeah, probably a bit more protective, yeah.

Ashwini 00:08:10 - 00:08:31

What about your friendships? I mean, this injury happened to you at quite a formative point in your life – you were at university when you're making new friends all the time, figuring out who you are in the world. Did you find that the injury and having that time out, did that impact on the friendships that you'd made?

Brooke 00:08:31 - 00:09:40

A lot of people lose a lot of friends through brain injury because for whatever you had the basis of that friendship, like say, I don't know, say you used to go to the gym with them or you used to go play football or whatever it was, you know, and you can't do that anymore, so there's no basis for the friendship. 

I suppose I thought I had loads of friends, but then again I was at university and it was, you know I worked in a bar and a lot of your mates are like going out and getting drunk mates, aren't they. And then obviously when you can't do that anymore, you do kind of move on. 

All of my mates in Scarborough, actually, we're like a weird bunch, or a unique bunch rather than weird! There's more than ten of us anyway, that we're still friends from school, and we've all sort of stayed together. A lot of people think that's quite unique. Everybody has moved on and they've got their own lives and they're all doing different things, but we all tend to meet up occasionally.

Ashwini 00:09:40 - 00:09:49

And do you think any of your friendships there have been impacted, either positively or otherwise, since your injury?

Brooke 00:09:49 - 00:12:10

I've made a lot more friends - you make friends because of, you know, your circumstances. I've made friends through BASIC, but the only person I would say that's like a friend that I've made in Manchester is a lad called Ben Chevlin, who has actually got brain injury as well. He had an accident, he fell off a scooter in Croatia I think, when he was 21 and he's like similar age to me. I like Ben because he's like, I mean I've done stuff, I've pushed myself out my comfort zone and I've done like public speaking and stuff and he does it with stand up comedy as well – he's like a comedian sort of thing and his routine is based on having a brain injury and stuff like that - some of the jokes I don't think I can broadcast and speak about them on the podcast! But I like Ben because he's not just one of those people who just gives into his injury and doesn't really do anything – he's always trying to do stuff, he's always like you know, like going around the world travelling, he's always up and down to London and stuff like that.

I wanted to move, my focus was always to move back to Manchester. I've done that, but obviously you tend to look through rose tinted glasses, you tend to look back at when your life was kind of really good, but you were at university and that's when everybody else was at university and that's the thing that you had in common with other people. But when I moved back, it's not like it was because everybody has moved on, got professional jobs, half of them have got families. It's not been easy for me, but I'm so glad I did it. I think anything that makes you push yourself out of your comfort zone. I've joined like running clubs, I've joined fitness clubs and stuff like that and I've been like speed dating on my own – I think I've spoken about that before! I think a good way to heal your brain, if you want to put it that way is, from my experience anyway, is to put yourself of your comfort zone and make your brain work.

Ashwini 00:12:10 - 00:12:49

I want to just bring it back to your mum and dad for a moment - we talked about, and I think it was in one of the early episodes, we talked about the accident and how your parents found out and your dad was working away at the time and about him not wanting to, you know, find out that you had passed whilst he was on his way back from where he was and obviously we've talked about your mum and the impact on her and you know the impact on her health. Have your parents ever sought any counselling or support for what they had to go through?

Brooke 00:12:49 - 00:13:12

My mum used to see Russell Sheldrick, my psychologist that I go to see. She had a few sessions with him. I think she had like one counselling session, but that was really traumatic for her - she just cried the whole time so she didn't carry that on. My dad, no. I think people just deal with it in their own way, don't they?

Ashwini 00:13:12 - 00:13:17

Yeah, so the other sessions she had with your psychologist, was that around brain injury education?

Brooke 00:13:17 - 00:13:33

No, it was for herself, just how she was. We used to go together because I would have an appointment with Russell first and we used to come from Scarborough and we did it once a month.

Ashwini 00:13:33 - 00:13:52

Yeah. So, your mum had some counselling, but not much and your dad didn't have any. Were your family offered any brain injury education in terms of what to expect after a brain injury and how things might have changed with you?

Brooke 00:13:52 - 00:14:26

Not really – I mean obviously I can't speak for them, but it was in 2007 and the education and the public knowledge of brain injuries, it's come on so much since then. I mean, I didn't have a clue what it was. I had never heard of. I wouldn't say it's like, commonplace now, but it's a lot more, especially with the hidden disabilities thing. There's those things – have you seen those things in Sainsbury's that you can get – those lanyard things? Just little things like that. 

Ashwini 00:14:26 - 00:14:29

There's more awareness now.

Brooke 00:14:29 - 00:14:39

Yeah, better awareness, that's it yeah. The absolute curse of a brain injury is that you just look like, I hate to say 'normal', but you do – you don't look like there's any problem with you at all.

Ashwini 00:14:39 - 00:15:48

Yeah, definitely, it's very much once you scratch under the surface that you can see where the issues lie. And you're right, I mean, your accident was in 2007, there will have been a lot more research done into the impact on brain injury, and certainly there are lots of organisations that can offer support and guidance around that like Headway or the Brain Injury Group, UKABIF, BASIC, but there are so many things out there that that can really provide that education. 

And I know certainly from work that we do, that I'm seeing it more and more that there is a trend towards offering brain injury education for spouses, for example, where the husband or wife has suffered a brain injury because they're the people that are living with the injured person 24/7. And having to help them and support them through their injury, but also coping with the aftermath of the injury and the change to the person that they live with.

Brooke 00:15:48 - 00:16:24

It must be awful because obviously there's this horrible shock of whatever happened; whether it was an accident or whatever, and then you've got the absolute relief that they're OK and that they're not going to die, but then you’ve got like a stranger coming back, coming home because it's like a different person and you must just think it's only going to be a temporary thing but it's not and it's a permanent change. And you hear of so many relationships break up over it.

Ashwini 00:16:24 - 00:16:33

Yeah, yeah, there's a very high incidence of relationship breakdown post brain injury because the injured person is no longer the person…

Brooke 00:16:33 - 00:16:36

The person they fell in love with, married, whatever.

Ashwini 00:16:36 - 00:17:16

Yeah, and it is, it's that grieving process again isn't it. It's about coming to terms with that loss and doing what you can and some relationships can survive it, some can't. But I suppose the more support you can give, the better the chances of survival of that relationship. I suppose it's also understanding that yes, you might be supporting someone with a brain injury and they obviously are going through a really difficult time and a really challenging time but it's OK if you are supporting someone with a brain injury, it's OK if you seek help and advice for yourself - there's nothing wrong with that, there's no shame in it.

Brooke 00:17:16 - 00:17:28

That's the thing, the family just get like, kind of ignored. I mean, it's just all about that person and it's just, not a jealousy thing, that's probably the wrong thing to say but…

Ashwini 00:17:28 - 00:17:44

It's all about the person, and yeah, you're right, the needs of the supporter - the friend or family member, the spouse, the partner - those needs are ignored, but at the end of the day, we're all human and we all have our own needs.

Brooke 00:17:44 - 00:17:50

Because they can very easily get overlooked, the people who are supporting them.

Ashwini 00:17:50 - 00:18:20

Yeah, absolutely.

So, yes, it's important to get support, it's OK to seek counselling - whether that's couples counselling, whether that's individual counselling. Brain injury education is really vital and that can often be provided by a neuropsychologist, just in terms of understanding about brain injury and how to support and also what support might be available.

Brooke 00:18:20 - 00:18:33

You're probably best off asking for a neuropsychologist actually, because like standard couples counselling the same rules aren't going to necessarily apply because they've got brain injury, haven't they – they need to address the differences there.

Ashwini 00:18:33 - 00:19:09

Yeah, yeah, absolutely. Another separate point that I wanted to touch on was just in relation to the importance of understanding and empathy. And I think we've probably touched on this before actually in previous episodes about when you talk about how your brain injury impacts on you and other people might say 'Oh yeah, you know, I also have memory problems' or 'I also get tired' and it's more than that -  it's about taking the time to understand how an injury might present afterwards.

Brooke 00:19:09 - 00:19:21

It does, it takes a lot of time – you need to invest time in trying to understand it. But at the same time, you can't expect everybody to put that time in to understand you, because people have got their own lives haven't they?

Ashwini 00:19:21 - 00:19:42

Yeah, but I suppose those who have a vested interest, again, brain injury education and just a little bit more time invested can really go a long way in terms of strengthening those relationships.

Brooke 00:19:42 - 00:19:52

Yeah, you'll find that your good friends really do shine through - the people who want to put the effort in will put the effort in.

Ashwini 00:19:52 - 00:20:20

Yeah, exactly. I think it's important to mention that with this episode we have got some footnotes with links to various support groups and resources for some of the support we mentioned within the podcast, so do check those out as they can provide a wealth of information in helping listeners with the support that they might need.

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