Episode 39 - Caring beyond a brain tumour

In this episode we talk to Elizabeth and Julia the hosts of the podcast 'On a good day'  about their experiences of caring for their partners who both live with the impacts of brain injury.  Elizabeth's husband Paull had a stroke when he was just 38 and Julia's husband Hector had a subarachnoid brain haemorrhage when he was also 38. Whilst not caused by brain tumours, the affects of their brain injuries and the day to day challenges are very similar to those experienced within the brain tumour community. 

Julia and Elizabeth started their podcast as a way of opening up conversations about the impacts of brain injury and how this affects them as a family and in their relationships.

You can find out more about Elizabeth and Julia on their soclal media
 
Instagram - @onagood.day

Twitter - @onagood_day

Facebook community - On A Good Day group

On a Good Day is available to listen to now on Apple and Spotify 

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Transcript

Sarah: 0:38

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival. Welcome to Let's Talk about brain tumours. In this episode, we're going to be joined by Elizabeth and Julia, the host of the podcast on a good day, which they started to talk about their experiences of brain injuries. So welcome to the podcast.

Julia: 1:08

Thank you.

Elizabeth: 1:09

Thank you so much for having us. It's absolute delight to be here.

Sarah: 1:12

You're absolutely welcome. Elizabeth can I start with you and tell us a little bit about who you are and how you come to be in this situation?

Elizabeth: 1:22

Sure. So I'm Elizabeth Callaghan. I'm a mom of two girls, a journalist, blogger, I've got a health and wellness business, I have lots of hats. And I'm also the co host of on a good day, which is a new podcast, which I co host alongside Julia, we connected after both of our husbands had a brain injury, we were connected by a mutual friend, we really got so much out of the conversations that we were having. And we just thought, gosh, we need to kind of get these out to a wider audience. Because we know that so many other people will benefit from this. So you know, I guess the podcast was born out of wanting others to feel more connected less alone, and to get some more information answers that we wanted to know. So we wanted to, you know, get that from the guests that we have on and ask those questions and you know, get that out to a wider audience. And so, so how did brain injury come into my life? So it was five years ago, my husband had a stroke. So he was 38, at the time, had been a very confident, vivacious, you know, go getter, and had a series of medical issues. He did, you know, quite a few life threatening conditions, you know, he's had cancer, he's had, you know, heart surgery. And this was another incident, he got back to an infection, went to his heart, and then had to have heart surgery, and then somewhere along the way, had a stroke. So we found that out sort of a week later, it just is completely life changing. You know you kind of don't realise it at the time. But everything has changed as a result of that brain injury, and it's adapting to that new way of living and connecting and being a family, I suppose.

Sarah: 3:17

Absolutely. That's very young 38 to be that you associate strokes with much, much older people, don't you?

Elizabeth: 3:24

You do. But you know, I guess within the work that we've done, we come across so many people, so many younger people that are having strokes and brain injuries, isn't it Julio because Hector was fairly young as well.

Unknown: 3:37

Yes, he was only 38 too and he had a subarachnoid brain haemorrhage 13, just over 13 years ago, I also have two children. They're 23 and 18. But at the time, Hector had his subarachnoid we were living in Nigeria, and the children had just turned five and 10. So we were, you know, kind of life changed in lots of ways then, because they had to change school. My son had just started school. And we ended up back living in with my mom's house where we still are, and in the village that I grew up in. So we moved overnight from Nigeria, Hector was flown to Addenbrooke's Hospital in Cambridge. And yeah, that's, that's where we are today.

Andy: 4:26

Did he have any sort of warnings that might happen? Any idea? Or did they just sort of come out of the blue?

Julia: 4:33

Yes, out of the blue, he collapsed. And I realised that it was pretty catastrophic, then he had been having headaches. But yes, apart from that, it was pretty out of the blue.

Sarah: 4:45

That's the thing your life changes can just the blink of an eye doesn't it just that you're going along in life, and then suddenly just something happens and like you said, it changes your life in ways you don't even imagine that your life is going to be changed?

Julia: 5:00

Absolutely. And I think that's been the case for both of

Elizabeth: 5:03

Yeah, completely. And you don't realise it at the us, hasn't it? time. It's just Yeah. Over time, things change really lots of different ways. Which I'm sure we're gonna get into that. Yeah. It affects every part of your life, I would say brain injury, whatever. And it's a very wide spectrum, isn't it of of illnesses, but the communication changes, how you connect with each other, and the things that they can do the responsibilities that you're taking on as a carer, or a partner of a brain injury survivor. And for them, you know, it's such a different life and their kind of emotions and getting their head around it, and you're getting your head around it, it just impacts so many people. And I think, you know, when we were thinking up on a good day podcast, we just thought, Look, it's not just that individual, it's the whole community of people that's affected by it. And actually, if we can help strengthen those links, strengthen those people around that brain injury person, then you are empowering them more so and supporting them as a collective.

Sarah: 6:19

Yeah, cuz Andy, you've talked about that in the past, haven't you how your brain tumour has affected your your filters gone, and it's sometimes you'll just blurt things out, we'll say things that are inappropriate, and that your children have have to explain to people or say things to people to prepare them for sometimes that you'll say things.

Andy: 6:37

Yeah, sure. Well, because my I was lucky, I guess, that I can still sort of function as I did before pretty much. And I listened to your, your previous some of your previous podcasts, your husbands were affected quite more significantly, in that sense. But for myself, it was some of the things that affect me, which may affect your husbands was about the fatigue, tinnitus, things like that, the lack of being able to sleep, and then all things that are invisible, which, which makes it harder when people ask you how you are. And I'm sure we'll talk about this later, when when you speak there, how are you? I say I'm fine. And that covers a multitude of sins, because I haven't got the time to to explain to people what's, what's going on, or you explain to people what's actually going on. And especially one of the challenges that I've got is my brain mouth filter has been impacted, I'll tend to blurt out things as I think them, which can be a bit embarrassing, dare I say, so my family know that. So they cut me some slack, if that makes sense. And they quite like it sometimes. Because I will say things that are a little bit rude. But if we're out with others, I have to make a real effort almost not to speak until I'm absolutely sure what I'm going to say. So it makes casual conversation very difficult with other people, because I'm always aware that if they don't know me, and it hasn't been explained to them, they might either take offence or wonder why I'm saying random words occasionally, just because I can't speak them quickly enough.

Elizabeth: 8:05

Is that something that you've honed over time them that you've managed to kind of restrict yourself? Or just be like, okay, don't talk yet or are you formulating a sentence in your head before you speak it rather than just blurting it out.

Andy: 8:19

I try to but the challenge I've got is I'm guessing at the same for your husband or your partners is that the brains still kind of working but the the interface is slow. I'll think something and I'll try and say it but before my, the rest of my sort of mind caught up and speaking normally I'll blurt it out. So what I tend to do, if I'm out in a group of people, for example, at a restaurant, I'll sit at the end of the table. So all the noises coming in one way and I can channel who I'm talking to much more than easily just focus on them. And then yes, there is an element of saying, I almost sometimes have said that I'm sorry. Right? And then give them the answer. And initially, people think you're being a bit dim or a bit slow, if I'm allowed to say that because normally, I'll be like that, but these when you're with other people, you have to just I mean, you do part of the coping mechanism to warn them to say, look, I may occasionally say something that's a bit inappropriate. Apologies in advance if I do, but if I really have to think about every word, I'm going to say we're not going to have a very good conversation. So I don't know whether that's is that been your your guys at all as well

Elizabeth: 9:30

my husband loves to chat. And as soon as he walks in the front door, it'll be blurting stuff out and I'm like, okay, okay, bring that back. And because I know him, I can kind of figure out what he's saying. Because a lot of the time it's not totally making sense and I can kind of piece together and it's especially if he's kind of tired or whatever, but it is kind of that you know, just bluh blurting out words just like constantly as well and then he can't stop talking a lot of the time. So actually, he could probably get some tips from your Andy on, you know, being able to kind of rein it back a bit and sometimes I'm like, okay, stop Paul think about what you're gonna say, and sometimes I feel a bit harsh doing this, but I kind of really want him to be more aware of that and actually, yeah, learn different ways of doing it because it's fine because it's me and I can kind of piece together what he's saying that if you're saying that with someone else, or he wants to get back into, you know, business, if you're kind of, you know, you need to piece it together in your head before it comes out. So yeah, sometimes I'll be like, okay, stop, think about what you're saying is that you know, and then tell me.

Julia: 10:44

I think there's a couple of things, Andy, that you've said that I wanted to pick up on, actually, for my husband, Hector, it's a bit of the opposite problem, because actually, he used to be much more eloquent. And now he has aphasia. So that's really affected. his communication, his speech so

Andy: 11:03

Was that brought on by the stroke,

Julia: 11:05

yes, yeah.

Andy: 11:06

Yeah okay.

Julia: 11:07

So I think he knows exactly what he wants to say in his head. But actually, he struggles to get his words out and say things in the way he ways he wants to. So when you were talking about being out with the noise, I think background noise is really hard. You know, when there's a lot of people and a lot of incoming sound and messages and the need to process all of that, I think that can be make it much more difficult to communicate can't it? So that was

Andy: 11:35

Thank is common. Yes,

Julia: 11:37

yeah. But the other thing that I think you said a new talked about, which really resonated for me, is this feeling of a safe space, that actually at home, with your family, with your children, you can talk, you can laugh at the inappropriate things, you might say, because that safe space is protected, you feel safe, your family feels safe, that you all have that understanding. But actually, when you leave that space, things change a bit. And I think that's a very shared experience, certainly for our family that that means that it's a very precious place. And that people that come into the home then become part of that. And it's important that those people who do come into are very dear to us. And, and precious to us in that space. Because it's it's an understanding, and they, they can build their understanding as well of, of our shared experience of brain injury in that safe space.

Andy: 12:36

I think for me, what was important was understanding that exactly that there's a safe space at home. And acknowledging that, and we're I don't know about your guys, but I know for me, it took a couple of years before I accepted that I was different from before my brain injury. Initially, I thought I'm gonna get back to be how I was that I realised wasn't going to be possible. And then it's about trying to put in coping mechanisms to lessen the impact, if that makes sense of where I was different. And one of those was exactly that we talked about as a family, my family are just fantastic, by the way, because they are so understanding, but we had to talk about and it took probably about a couple of years from me being ill and being operated on before we we actually sat down said Hang on, let's just acknowledge we kind of tacitly understood that but to actually acknowledge it, not quite to the point of putting house rules up but almost feeling that it's acceptable in that environment. For me anyway, that I can just relax, I don't have to stress about saying some something that's wrong. So I don't know, if you guys had the same kind of discussions with, with your partners about, partly about accepting that they're different than they were before, but also how you can try and, and mitigate that difference and make their lives and your lives a bit more comfortable, if that's the right word

Elizabeth: 14:03

I think we're starting to have some of those conversations. I think my husband is only just kind of getting into that acceptance part. I don't not sure if he's 100% there. I'm definitely I think I'm slightly further on now with accepting the situation. But I think for him, he's, you know, sometimes he does, but sometimes he doesn't.

Sarah: 14:27

It's a grieving process, isn't it because there's a whole life that you have planned out, that's now not going to be lived and the life that you are going to live both of you, him as an individually, but also as a couple and a family, there's a whole life that isn't gonna happen now. And the different life is gonna happen. And there's a grief and loss in that isn't there of letting go of what you thought and accepting now what is

Elizabeth: 14:57

yeah, that massive, massive grieving process, which which continues, you know, continues on and it's finding ways of, yeah, accepting that and being like, okay, that never happened. It's not gonna happen. We'll recreate what life are we going to recreate? How are we going to work with this? And there's definitely work that we are doing, you know, or starting to do on that. I think five years on you know, it really really is a process. You know, for Paul, I think the whole work thing, you know, changing that has been something that he has struggled with. He wants to do something in some capacity, something purposeful within his family business, but it's kind of finding out what and how he can fit into that. So it's constantly evolving really

Julia: 15:51

Yeah. And I think coming back to the point about communication as well, I think, yes, we have had those conversations, and they've changed over time, my children, as I said, In the beginning, were five and 10, when Hector had his brain haemorrhage, and now they're 18 and 23. But I think that the foundation that we had for that communication, of having really difficult conversations that you don't want to have with your young children, and you know, them going into the environment of hospital, or, or not, on some occasions and talking about some of the realities of what was going on. And then also over time, and then understanding that, you know, Dad was struggling with this or was a bit different than other dads and what that might mean and reasons for that. For the I think what that did was give a foundation for those deeper kinds of conversations, as we've all aged over the last 13 years. And what I hope that's done, what I think it's done is enabled us to have sometimes difficult conversations, even now, you know, and about other things as well. And I think that's actually been one of the gifts of our situation that it's enabled us to understand how important that communication is, and maybe be a little bit better than we might have been with those difficult conversations

Andy: 17:24

Completely agree with that and It's it's but it takes time to come to terms with that and I mean Elizabeth, you saying is it's five years now, I think Paul's a lot younger than I was, I guess. So. I kind of got to this. I was 52, when I was rushed to hospital, wondering what the heck was going on in my life. So I didn't have a career to worry about because I was already on the downward slope. Whereas with your partner, it's a lot harder because he's probably still thinking and and that was my first reaction, weirdly, was apart from have I got a passport because I need a passport to go to the hospital with no idea where that came from was, how am I going to pay for my family. And it's those things, but in time you get there. So maybe you're you're at the more difficult challenging stage of life, I guess because because Paul would expect I'm imagining to be the main breadwinner, and that's going to be a challenge for him. But it's just having that ability to talk about it. And this is where this might help others who are listening to this just there are many families who have partners with brain injuries. It's understanding that you're not alone and having these really difficult conversations is the norm and is to be encouraged. And it's quite easy to shy away from that and just muddle through and you muddle through and you muddle through. And five years later, you're sort of muddling through and you think Hang on, let's just have a conversation that that would make, like we sat down, when I finally got my head around the fact that I was different. And we talked about like, what, what are we gonna do not just with the life that I've got left and things like holidays? Can I still go on holiday? Can we go on holiday? How do we communicate as a family? How do we give myself that safe space? And it's it's really, life has improved for me a lot since having those sorts of conversations. But it's not an overnight process. And it's it's it's going to be a challenge, I guess, but it's one that hopefully people listening to this realise they're not they're not alone in that situation.

Sarah: 19:20

As a carer for somebody in that situation, how does that affect your relationships? Because you have a certain dynamic in relationships, and then suddenly you very much take on a very different role.

Julia: 19:33

Yes, hesitation there from both of us. Absolutely. I mean, it's such a loaded question, isn't it? Because it's such a big question. I certainly think that being a carer alongside being a wife is challenging at times where there is a change in roles and responsibilities. And that's not always welcomed by me having those additional roles or Hector, not having them. I think also trying to manage our relationships so that we are both supportive of each other, within what we can do and maintaining to me, something that's very important is the respect that goes with the love as well so that we can make sure that we are respectful of each other's capabilities, roles and responsibilities. And then in some of the day to day things, I mean, I'm I have to do a lot of form filling and communicating and things, you know, that kind of life admin that I don't like doing. Does anyone like doing it? I don't know,

Sarah: 20:46

I was going to say, Does anyone like doing it? But then when somebody's got any kind of illness or anything, it suddenly quadruples. And you're certainly left with lots and lots more than normal.

Julia: 20:58

Absolutely. And, you know,

Andy: 21:00

were you given any support that Elizabeth in terms of sort of migrating from the relationship you had to where you're, you're effectively being a carer as well? Were you given any help or guidance or support? Or have you kind of had to work it all out yourself?

Julia: 21:14

No. And I actually looked for some family counselling at the time, because I felt at that, when we were still really in a crisis situation, or when Hector first came out of hospital, which I think was still part of that he was in hospital for five months. But having two young children, his care needs our relationship. I was really struggling then. But I was unable to find any services that could help us specifically, it wasn't just that I wanted counselling, it was specifically looking at all of those dynamics. And no, I couldn't find anyone that I thought we could talk to as a family to help us navigate some of that I got involved in the carers realm, I use some carers support services, and kind of got involved in in some carer representation in Cambridgeshire, which was great and very helpful for me at the time. And we know that it can take a long time for people to allow themselves to receive that support. Because often, people don't want to identify as being a carer or don't do that for some time. I think for me, once I did that enabled me to access that support, which I hadn't done before. But also I then withdrew from that because I, as I got back to work, and as our situation changed, I felt that I wasn't was no longer really being the voice of carers, many of whom were carer that were caring for either children or partners, were there situation was wasn't going to change, or maybe it was going to get worse. So I stepped away from that. But I did find that very supportive at the time. And obviously still, I still identify as a carer, because I think that there are lots of parts of my role that I wouldn't be doing, if I wasn't in that caring role.

Elizabeth: 23:14

Yeah, I think there aren't like Julie was saying, you are taking on a lot, a lot more responsibility, it is all those things like you say that you don't necessarily want to do on top of everything else that life throws at you and your work and looking after a house. And I've got two children, young children, so they are now 10, and six, and at the time, they were almost two, and six so really young. So I had my hands full, certainly at the beginning, looking after them and still do gosh it just gets busier and busier the amount of activities and the thing like so my husband can't drive. So I'm like always the designated driver, which is fine. But sometimes you're like, you know, you're driving to a kids party, you're driving back, you're taking them to whatever activities they've got drama or whatever, and picking them up from school. And so yeah, I do feel like a glorified taxi drive

Sarah: 24:16

And that's the thing that when you didn't know this was a lot. gonna happen. You plan to do this as a couple as a partnership, you didn't think you'd effectively be doing all of those things on your own, that it would be a shared responsibility, presumably.

Elizabeth: 24:30

And Paul used to do a lot a lot before his stroke, he took on a lot of that responsibility actually, with the children. He would look after a you know, a lot of the financial staff, he kind of, you know, he he really liked having that control and actually kind of doing that. And now he doesn't, it really, really frustrates him actually, in terms you know, for some of those things, particularly kind of some of the admin admin things and financial things with the kids, he is really reconnecting with them. And I'm kind of empowering him while you know, just leaving him to out on a lot of occasions. I am back freelancing in my journalism work. So that's allowing him to take them to school, pick them up from school, giving him ownership over that making their dinners and all that sort of thing. And, you know, I'm not there. It's not Mommy, Mommy, what really annoyed him I suppose for a while. Oh, so mommy, mommy mommy all the time. What about Daddy, but he didn't have there was that disconnect, that you have to talk to them, you have to do stuff with them, you can't just sit there and like expect the relationship to evolve. So it's, it's kind of forced him to have those connections to chat with them to spend time with them to read their books and together and all that sort of thing, you know, make their dinner and then that's kind of, you know, one other thing and I'm not I'm not there, I'm not there to see anything, I kind of just get home and the houses in whatever state it's in The kids are fed, sometimes they're in their pyjamas, you know, he's done a good job. He's, you know, he's trying he's, it's allowing him and giving him the space, to feel purposeful and to take ownership. And it's really helpful, it is really helpful.

Julia: 26:21

I think one thing with that question, as well, Sarah, that I'm mindful of is that, actually, there's lots of single parents who are doing all of these things on their own anyway. And, you know, I often think about that change role. And, you know, when I have additional duties and think about, you know, single parents who are doing it all on their own. I guess, one of the things, though, that I think we we then navigate when we ask people in our relationships is, when are we helping and when are we being obstructive, and trying to facilitate often that, that helping out and that kind of equality in a partnership. And so I think that's where some of the additional responsibilities lie as well is that is that kind of navigating that space, where we want to still be able to facilitate our partners to do as much as they can, but that also takes work. Yeah,

Elizabeth: 27:27

It really does and, and dealing with their emotions, as well. And you know, sometimes there is that conflict, that's going to come up in any kind of relationships anyway. But when you have, you know, somebody who can't do what he used to do, really wants to be able to, and get, you know, angry, annoyed, frustrated, it's and can be sometimes negative about it, you know, about life in general, you know, it's managing all those emotions, as well.

Sarah: 27:56

Both your husbands were very young, when they had their brain injuries, you know, Andy touched on it, but when you're that age, our careers are so much part of our identity, you know, what we do? Like Andy said, he was getting to the end of that where it was becoming less so for your husband, that change, that shift of who am I, if I'm not this, who am I, if I'm not, that is kind of another layer that comes on to it, because they've now got to reestablish their identity, recreate an identity within that.

Julia: 28:25

Yes. And also, I think, being confident enough in that new identity, now to role model, I mean, you know, my, my husband, for my son, and I think is a, an amazing role model. But it's not through the career that he might have had. But actually, it's through the fact that he gets up every day and engages and does all the things that he is able to do and pushes himself to do that. And we all see that. So, you know, that's the successes of life get measured on different things,

Elizabeth: 29:01

and how far they've come. And, you know, it's very much, who is to say that success is measured by you know, achievements, career, whatever, that's just a perspective, isn't it? And like, I kind of look at Paul and I think, Gosh, how inspiring for them to see somebody that, you know, was almost died, was couldn't walk, talk, speak, you know, talk and speak the same. walk, talk, and, you know, have conversations that are coherent. And here he is, you know, living breathing and, you know, every day is going out and trying to be more and keep improving himself. He wants to progress and keep doing, you know, doing stuff. I mean, talking about some of the facilities that will help or support that we've had I at the beginning, I didn't really unlike Julia have all looked for kind of that support necessarily. I think it was a few years down the line. I thought actually I'm quite open now to maybe talking to somebody and actually a local charity, which is amazing. It's called in ins integrated neurological services. They have been incredible in providing Paul with some great courses he's like did a creative writing one he's doing like, mindfulness course not I think you know, it kind of goes out the window. Sometimes he's like, we just did some meditation. I'm like, okay,could you do a bit more like, feel the effects of it more. So that's been great. And but also they provided someone for me to talk to as well. And that was really great. Yeah. So just to talk through things and what I, you know, my experiences in a really safe space, somebody that I obviously didn't know. And they have carers weeks that they put on as well, like, once a month, they bring the carers all together so that I've been really, really grateful that that service has been available for us. And I know a lot of places don't have that. But I'm really, really grateful that that's, that's there for us to tap into.

Sarah: 31:17

And I think that's really important, because it's terrible for the person that's got the brain injury, but the person that's caring for them, often, there's a huge gap in between what is offered, what support is out there or even thought of, it doesn't even come up in conversations like How are you coping?

Julia: 31:33

Yes. And I think that's for with on a good day. And with our podcast, it's an acknowledgement that actually, if we are all better informed, if we are all coping better than the outcomes for our loved ones who've been affected by brain injury also going to be better.

Elizabeth: 31:50

It's just understanding it's understanding their situation, is them understanding our situation better. I think through some of our episodes, it's made Paul maybe realise a little bit about, you know,

Sarah: 32:02

I was just about to ask, do they listen to your podcast?

Julia: 32:05

They did come on one as well didn't?

Elizabeth: 32:07

Yeah, yeah, they did one with us. And yes, they, I mean, got no option, he's gonna go listen to it. But no, he's actually getting loads out of that. Out of listening. Yeah, it's been really beneficial.

Andy: 32:20

I had that as well with the charity podcasts, because I've done a couple talking about sort of challenges with living with a brain injury, and my kids, they're all in their 20s Now, but they've each said, Wow, dad, I didn't realise what you were having to protect with on a daily basis. And also, to my wife, saying hey mum I'm amazed you're having to deal with dad who's doing that on a daily basis. And I think that really helps, because through the podcast, you can just explain more about the challenges of either being a carer or having, or being someone with a brain injury, and it is different. I mean, I was just going to quickly go back to the bit about part of accepting that you're different is also for both the carer and the person with the brain injury is accepting that success is now measured in a different way. So success up to when your your partners have their injuries was probably measured in a certain way, now is measured in a different way. I do occasion have that with my kids, they don't communicate too much with me. But that's kids, when they sort of say, Hey, Dad, I didn't realise that just going out and functioning for you is actually quite a big deal. They just assume because I was loud. and leary beforehand that I would be now and I had one specific where I went to Thorpe Park last October for Fright Night, and actually went on a couple of the rides. Now, whether that was wise or not, I don't know. But I was with my kids and it was fantastic because I was with them and I felt like a dad again, like I used to, but they were sort of saying, understanding what I was having to deal with. They said, Are you sure that you want to go on that? And when I came off, and they both gave me a massive I'm goint to get emotional, a massive big hug and said, wow we we realise how hard that was for you. So having those new measures or different measures of success post the injury is is vital, I think, for both the carers and the person involved so that you can rather than saying, Oh, you used to be able to do that, why can't you do it anymore? You say, Wow, you've done that well done. And also the carers as well because, like you said, you're having to do a lot more than you probably signed up for for a better phrase for better or worse, I know but so it's it's recognising for you guys that so if you can, get your husband maybe to slow down when he's talking when you come home, that's actually a sign of success, that you're having a positive impact on him. And it's trying to measure those little increments of success, I think is important for you and the carers and the people being cared for.

Julia: 34:51

And I think communicating them as well, like, you know, looping back to communication actually saying to each other. Thank you. That was brilliant. That was great. That wasn't so great. You know, that was really hard for me. I think those Yeah, following up those times with that communication, which of course a great big hug to Dad is says a million words as well, doesn't it? So yeah, I think that's really powerful.

Elizabeth: 35:18

Small steps

Julia: 35:19

One thing I did want to just say that I think I do find difficult in this new experience is having the sole responsibility, not the sole responsibility but decision making, carrying more responsibility in making decisions, but also in trying to make that equitable in terms of our decision making. But then also managing risk, I feel in terms of some of the decision making, that I'm called upon to make. So I was interested in you saying Andy went to to Thorpe Park because I'm really nervous about that my husband's had some pretty major seizures. And, you know, I just don't know whether that's a good thing to do or not, because I drive, we haven't been to Thorpe Park on a ride, but maybe didn't do you know, I mean, just in terms of that responsibility of, I don't want to stop Hector doing things but also, I am actively making decisions around managing risk, or what we do to try and able him to do as much as possible, but also to manage the risk. And I sometimes find that a lot of responsibility. And I don't know the answers to some things,

Elizabeth: 36:32

Would he wants to go to the Thorpe Park?

Julia: 36:34

I'm sure he'd love it.

Elizabeth: 36:35

I don't think Paul would, i wouldn't want to go with him it would be so stressful, especially with two with two young children.

Julia: 36:44

Yeah,

Elizabeth: 36:44

maybe when they're grown up, you'd be alright but my goodness, the thought,

Julia: 36:49

but it's managed right, isn't it?

Elizabeth: 36:51

Yeah,

Andy: 36:51

You're absolutely right Julia and it's that's how much do you manage their risk for them? and almost wrap them in cotton wool?

Julia: 36:57

Yes.

Andy: 36:58

How much do you let them be I mean I'm probably a bit more. I don't know, at the stage of life where I, I've always wanted to occasionally do daft things. And my family know that and my wife knows that just once or twice, just do something daft that reminds myself that I'm alive. And I can be a bit irresponsible. So if your husband's like that, then occasionally he likes to just do something a bit silly, then I'd encourage it, let let him go. He will probably get so much pleasure out of doing something that you probably thought he couldn't do beforehand, that I'd guess it would outweigh the risks. And if something does go wrong, then you will know not to do it again.

Julia: 37:37

We have talked about Positive Risk taking on what in one of our podcast episodes.

Andy: 37:42

Yeah.

Julia: 37:42

And we are doing more of that. And one friend said she is going to take Hector to Thorpe Park, I don't think I'm gonna go that's my solution they can go together and I'll stay at home

Elizabeth: 37:56

And hope the phone doesn't ring

Sarah: 37:58

Ring yeah just turn the phones off and just be like, I'm in denial.

Julia: 38:01

Yeah. oh gosh

Sarah: 38:04

What advice would you give somebody who they've just suddenly find themselves in a position where their partner has got a brain injury, and they're wondering, oh, my god, how am I going to deal with this, that first moment of crisis when it happens?

Elizabeth: 38:18

Stay calm, stay calm. Like, it's not the worst. It's not, you don't know what the future holds really take it one day at a time really, you know, you can't you can overthink these things, overthink things that haven't happened, I think believe in them staying positive where possible, because I mean, if you're in the situation where you're in hospital, surrounded by a lot of medical staff, they can be really negative. And they can tell you stuff, you know, they will never be able to do this or I know, I know, they kind of have to give you the worst case scenario. But you just know that that is medical speak. And they don't know that person. They're looking statistically or in their experience, but they don't know your husband. And I, you know, when Paul was he was in a coma for sort of six weeks, at least six weeks. At some points, they were being incredibly kind of negative about his chances of survival. I turned around and I just and I said look, you don't know my husband, he is going to make it he is you know, he's a fighter, and he will keep fighting. So don't don't allow them to kind of dampen your dreams or your your husband's like stand up Stand up for your husband's I think or your partners or whoever it is those loved ones. And just take your time, you know, allow yourself to go through those emotions and it will sometimes things catch up with you later on. It didn't hit me for probably three years afterwards about kind of the enormity of the situation because sometimes you just keep going keep going you are in denial and you know, be patient it's not it's okay to not be perfect to do things wrong and to get angry at them sometimes or have that conflict but like you say it is keeping that communication and being kind to yourself as well because you're taking on so much responsibility, but look for support. I think friends family, don't be afraid to ask for help.

Julia: 40:27

Yeah, So I think my key points, and I think there are different things at the point of crisis from further down the line. But certainly I think taking one day at a time was the best advice I was ever given, because it's too frightening to look too far ahead. So taking one day at a time, asking for help, I was not used to asking for help, I didn't really know how to do it, I resisted it for a little bit, but not for very long, because it became quite quickly apparent that I needed help. So I think not not struggling with any guilt around that and asking for help, when you need it, and trying to keep some time for yourself to just take a breath, take a step back to keep rested. So that you are there and that's very difficult. I was told a hospital, you're not going to help by being here, 24 hours a day, go back and get some rest. And of course, you don't want to but I think that that was very good advice, or trying to do that keep

Elizabeth: 41:29

keep you healthy. Because, you know, I was very aware that I was having to keep the whole family together. So in some ways, I kind of threw myself into making sure that I was as fit and as healthy as I could to get through those really tough times when it does take it out of you.

Julia: 41:48

Yeah. And I think just another couple of sort of longer term ones are find points of connection. Where are the points that when it seems that actually you've lost things that you used to do together? Where are the things that you can do together? And also focusing on the things that your loved one, or the person you're caring for can do and not necessarily what they can't do? And I think that provides a foundation.

Elizabeth: 42:15

Very good advice. Yeah, I'm constantly saying to Paul stop telling me what you can't see what can you do? So yeah, it's really drilling that in and empowering them to realise themselves,

Julia: 42:26

As a carer, to focus on that, I think to

Sarah: 42:29

It's been amazing talking to you both before wrap up, you've got your podcasts,you've mentioned it a few times, do you want to just give us a little bit of an overview about your podcast, what it is and where people can find it,

Elizabeth: 42:41

of course, so people can listen to the podcast, we're on a good day. So on wherever you would usually get your podcasts from. You can follow us on Instagram @onagood.day on Twitter @onagood_day And I'm sure you'll put all this in the show notes as well. You know, this is for it's for anybody really affected by brain injury, obviously, our perspective is from somebody who has a partner who has a brain injury, but really we're really delving into all those kinds of questions that we would like to get answered that our partners are probably curious about as well. Helping people to get more informed because the more informed you are about the situation about other people's, you know, stories and how they're feeling. And then the more you can empathise and help that person to you know, empower them to be the best that they can be and for you too, as well. Because, you know, looking after somebody with a brain injury, as we have discussed, it does change your life. It changes the responsibilities, you're living a slightly different life, but that's okay. It's you're creating your new stories, things happen in life, don't they? And it's building that resilience and you know, staying positive, being the light in the storm, giving it time and feeling all those emotions as well.

Julia: 44:06

Yes and I think it's great that you the brain tumour charity have also got a podcast because I think it is a platform that people are increasingly using and people can pick and, and choose what is the most helpful to them. And so thank you very much for having us on today as well.

Elizabeth: 44:23

Really, really grateful for you inviting us on. So thank you so much. And for all the great work that you guys are doing your charity is just amazing. And you know, helping so many others and for for those people with brain tumours, brain injuries and their families as well. It's incredible.

Sarah: 44:38

If anyone is this then all the details for Elizabeth and Julia will be in the show notes and a link to on a good day as well. So if you just go down to the show notes, it'll be in there for you. We hope you've enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@thebraintumourcharity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness