Episode 3 - Life as a carer

Co-host Sara Challice explains what it's like when you're told that a loved one has a brain tumour and how her husband's diagnosis changed her life forever as she took on the role of his carer throughout his illness. 

Sara talks with honesty about the reality of caring, the toll it takes on carers and the things she found helpful.

If you or a loved one have been affected by a brain tumour diagnosis our support team are here to help you at the contact details below.
 
We also have dedicated private Facebook Groups for Carers and people affected by a loved one's diagnosis. You can join our main Carers Group here https://www.facebook.com/groups/470978559740874 or if you are aged 16 to 30 you can join our Young Adult Carers Facebook Group here https://www.facebook.com/groups/thebraintumourcharityyoungadultcarerssupportgroup

You can find more information about support for carers on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/

Sarah Challice's website www.whocares4carers.com and book https://bit.ly/whocaresbook

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 and brain tumour charity about what we're doing to have the harm and double survival Hello, and welcome to the podcast. I'm Sarah and in this episode, I'm going to be joined by Sarah chalice. Sarah is going to be my co host on episodes where we'll be talking to carers and loved ones of people diagnosed with a brain tumour. Sara herself became her husband Neil's carer after he received a brain tumour diagnosis. So I'm going to stop talking and I'm going to introduce you to Sarah so she can tell you in her own words by her story of caring for her husband, Neil. So, welcome to the podcast. Sara.

Sara: 1:22

Thank you very much. Thanks for inviting me, Sara, as well to share my story. I've got some tips and things that helped me whilst I was caring for my husband for many years who had a brain tumour. So yes, I'm going to take you back. It's about nearly 20 years ago now. How old am I anyway? So going back, I grew up in Peterborough and I 20 years ago, I came to live and work in London and imagine the scene I am on the 26th floor of the NatWest tower of huge views overlooking the city. This is where my life was going to start. I'm a part of the design team for large corporate. And I've only been there three days and I'm sat there in the office just tapping away looking through the brand guidelines while I look up and there he is, Neil. He's six foot four, size and stature of rugby player cheeky smile, and he's the print supplier to our design team. And he's brought us all in wine for Christmas. You're right there Sarah got a little something you might like to my own heart. Every now and again. It takes us all out. A little design team of four girls out for lunch and I always enjoyed his company Neil was lovely. But ooze confidence, even captain of Hampstead rugby club. Anyway, a little while later, he asked me out when we start dating, having a great time. And we only been a number of few weeks when he told me that he thought that I was the one. I thought Clearly I've not been in London long. But I do remember the time that we were driving over Tower Bridge together. I love Tower Bridge is very special to me. And as we did, I just gazed across Sydney and said, You know what, I could spend the rest of my life with you where that came from. Never look back at me. And I could spend the rest of my life with you. And when we got off of the Tower Bridge, we're on this journey together. But during this time nearly been having kind of pins and needles down his side and it's been going on for a while and we've been going to the doctor who said I'll get some cranial relaxants of all things. And then there was one evening I came home from work and he always on the sofa and he just couldn't get up he was slurring his speech. I ended up calling an ambulance and got him in within a few hours I think all sorts of blood tests etc. They put him on a saline drip and he was up chatting happy and they just gave him a couple of headache tablets to send him home you know I found it a little bit strange really couple of headache tablet bizarre. So anyway, late in that night, we came home and went to bed next morning I went off to work bleary eyed because it'd be a long night, but by the time I come home when they'll try to answered the front door at that time because it was so early in our relationship only six weeks that I didn't even have a front door key when he tried to answer the door. He he was greying ocean and he needs to collapse almost onto the sofa. I went, I'm gonna call him ambience. And so that was it got nearly into a&e. And I said to them, I'm not bringing him home. It's not tonight, I said you need to see what's going on with him. So he was on the observatory ward that evening. And I went home. And the following morning, I got a call from the hospital and they said Please can you come in? We've done a brain scan. And it's like brain scan MRI. Okay, so I turned up and on a ward of six men, there was nearly all set up smiling. He looked pretty good. And I'd only been there five minutes gave him a big hug when the doctor came, pulled the curtain round his bed. And so he had me respond. And he said, I'm sorry to say but we found something on the brain scan. It looks like it's either a brain tumour or brain cancer and myself from Neil was so shocked because he'd been so fit and well up to that point and even been to the doctors in 14 years. And when I hugged him, you know, we both had tears and I said, You know what, Neil? I'm here for you. You know, just get better. So anyway, he had said, Yeah, took a six hour operation to remove most of that debulking except glioblastoma, and then he had chemotherapy and radiotherapy. And I do remember when Keep it home. It's actually where I'm sat now at this desk. He was then googling course, brain tumours as you do. And you called out to me I was in the front room, Sara 18 months if I'm lucky, and I just thought, Oh, hold on Neil. And I just put my arms around him. I said, You know what? That statistic right now is of the people. And right here now it is not you.

Sarah: 5:50

Was there ever a point when you just thought, I need to get out of this? This is too much six weeks in and you're hearing this did you? Did you

Sara: 5:57

think I'll be honest with you? I've known him for like 18 months. And then he started in trying to ask me even asking me out for about six months, but I I just get no now I'm too busy having a good time. No, it's kind of weird. When I think back I just said no, it's all it's all good. Don't worry, just get better just get better. So by by six months had gone, you know, the, from being diagnosed and having the treatment he was given the all clear. And great, we can just get back on with life again. And so Neil was in remission for a year. And by the following Christmas he proposed to me, and we look forward to getting married, didn't really think about doing it quite quickly. You know, I never, I'm never in much rush. But only a few weeks after nearly proposed. He was having those funny side effects, again, called it brought his scam forward. Unfortunately, his hunch was sadly right. And they couldn't operate this time the tumour was back. And he did say to me here in the house, he said, you know, you don't have to marry me. As long as the one I said stuff, the cancer, Neil, we will make the most of what we have. Yeah, so I was in love with this man. And we were in we were kind of in it together. I was sharing it with him, you know, taking him to hospital being there for him. So what we did was we brought the wedding forward. And we saw it as a great celebration with all our friends and family, which was was a terrific day. But Neil have five more years of chemotherapy, and it was the team was on the mind. And already taken that he was taking. And he kind of seem to get quite you know, first he was sick, but he kind of his body seemed to adjust it kind of got used to that chemo. And I'd be there with him every week at Charing Cross Hospital. And we met some really great friends we'd all hang out together, call them the BT friends actually kind of brain. And you know, still good friends today, some of those and as it carried on, Neil was then having forced, at one time he had fought quite sizable tumours in his head. It's amazing, lasted for as long as he did actually said where they were, you know, it's one at the base of the brain he was then having formed because of where it was. And then when we were starting to use a wheelchair, I gave up my job to look after him full time, and I wanted to spend quality time with him. I didn't know how long they will hurt.

Sarah: 8:22

By a big decision, though, because you'd come to London to start this career. And this was the start of your life. And then suddenly, you're giving up your career, the whole reason that you've moved,

Sara: 8:33

there was a combination. I'm gonna be honest with you, Sarah, I got a bit of fed up with the corporate world, I will say this. So it was a combination for me. I wanted to work for myself. I wanted to carry on doing graphic design, but be a freelance designer, which is what I did from here in the house. But then I could keep my eye on the last one. He had long days of just spending time alone. And I thought that was quite sad as well, not knowing maybe how long he had. I know wanting to spend quality time with him really,

Sarah: 9:01

like five years into this sort of like sort of device seven,

Sara: 9:05

seven years in. Yeah, something like that. Yeah. So six, seven years in, I would say kind of knowing him and stuff. So yeah, being at home and then organising the paid carers as well, because Neil was big heavy guy. So like 1617 Stone, it's like twice my size as well. So he was having forms are surely picking up off the floor too dangerous for me as well. And then a few years after that, because he was slowly deteriorating because of weather tombs, and scar tissue was a few years after that. He then ended up with having a stroke. And he ended up in hospital for a couple of months. And he was really bad by then. He couldn't speak. He had a feeding tube. And they just kept saying is a do not resuscitate. You know, he wasn't a vegetable, but he was quite out of it. So there's not much communication, but you could do some stuff to pick chocolate brownie. So that was so so anyway, I said, send him home. I want him at home. I don't want any I don't want him dying in here. That's how I saw it. But I'm going to be honest with you once I got him home and he was in a hospital bed in our living room. He clearly visibly got better. He was better and he actually lasted another four years. Well, at that time, if you'd have asked me how long do you think a couple of weeks. But you know, I will say this whilst we were here facing all of the So I remember giving a talk at their houses of parliament helping with the brain tumour charity and a neurosurgeon got up and he said he was often asked what was the best criteria for surviving a brain tumour, but I stood there and his arms big team was on my mind, whatever. But his answer surprised us all. He said the best criteria for surviving a brain tumour was marital status. Really quite surprising. And I absolutely love that. And I don't think you have to actually really be married. But I think if you fall in seriously ill and you've got somebody fighting your corner, showing you love and support being a pillar of strength. That is a huge boost. But not only that, if you've fallen ill you still have a reason to live of another and love is so key when it comes to caring, as frustrating as caring can be I know,

Sarah: 11:17

what do you think? Because obviously at that point, then Neil's very much dependent on you. It sounds like he physically was very dependent on you as well emotionally. Because like you said, he's this big six foot four guy and now you're having to do all of his personal care, I'm assuming Yes, it

Sara: 11:37

was 24/7 nursing care. We paid carers coming in helping me I called it the Charlie's crying the boys still, you've got to have a bit of a tongue in joke on a bit with all of these sort of things. But yeah, it was me and the PE carers coming in helping me to get him up and I'd have a baby monitor on at night because he'd have choking fits due to where one of his tumours was, I think. So. I darting down says always have one year out just in case. So that's why carriers don't really get great sleep because you always you're on call, wherever you are, whatever you're doing, just in case, I know. It was just tough when it's for years. And I you know, it was a tragedy for both of us because Neil was kind of slowly losing his life. But in the process, I felt like I was losing mine. And I kind of describe it like this. Although Neil was the one with the brain tumour as a carer, I was waking up to brain cancer every day, 18 years, which is, you know, people, you know, come close friends and family don't really understand what it is that you are going through

Sarah: 12:38

the long time, isn't it? Because it sounds like he was in pretty much treatment, the entire time of that, that even though he had that period of remission, he was pretty much in some sort of treatment throughout all of your relationship.

Sara: 12:53

Yes, it wasn't till then he'd had the stroke. He was kind of palliative care. So there was not much more they could do. But I do want to share this story. There was a few things we did I got gay got me along Klymit promain, an anecdotal trial through the brain tumour charity, and it's been shown to help to reduce brain tumours so so do check that out as a first and I had me along, Neil and I was giving that to him all the way through actually, I think that helped. But also I do want to share this story. And when Neil was had had the stroke, I mean, he was always slumped in a wheelchair when it got him and I take him out. And I thought, well, that's kind of it, you know, he could get one time because he couldn't when he had his head in bed, it just be looking in one direction even though the TV was over there. It's like Neil TVs here, you know, trying to get him to look and and then a friend of mine told me about a Homoeopath of all things down the road. Dr. Ian is in St. Margaret's. And she said, you know, he was a trained proper GP, but then he ended up with some kind of growth and he on his head and the Western medicine wasn't fixing it. So he ended up putting an advert in the back of a medical journal. He said please help and people saying all these alternative therapies, also, homoeopathic pain, and I thought, Oh, great. Okay, so I took wheeled nearly into his office, and we were in there like two hours and he wanted to art he wanted to know everything. You know, it wasn't just Oh, it's a brain tumour it's like well, what's led up to that point, which is it's like the full story of the person you know, it's not just the illness and then he'd prescribed Neil it was called Site assign b c y to said y m e died away you can spell it but yeah, well I'm just gonna run through my head because it was some day you can take it all it is a food supplement is condensed lands brain of all things. Yeah, I had to kind of water it down and put this milky fluid through is tube delicious. We were gonna go back because it was quite pricey to see Doc trainers, but within like five weeks, nothing had really changed with Niall. And I thought, well, I'll just cancel it. But I'd say five and a half weeks in and that was the only thing that had changed. It was like something had healed in his brain. So there was one morning I came downstairs and usually I go in his living room where his bedroom was and say morning chicken. Of course I wouldn't hear anything. He just be laying there with his eyes blinking and looking around. But that morning, he swivelled his whole head and this hadn't happened for months. And he spilled his whole head and don't call me chicken. She was joking. It was like He was back from the dead. I was I needed fell over. I said, Oh my god, Neil, you look amazing. Do you? Do you feel alert because you'd have anyone? Yes. And he was talking and that must have be the only thing and of course it's just a food supplement. So it's something I did want to share. Because no stone unturned Don't give up hope, just keep keep looking, see what other people are utilising and and another thing that I would like to say is, you know, Neil, he could breathe in a packet of chocolate hobnobs. I mean, he was a shock of the biscuits. He was my little biscuit munching but you know, when it came to a close, you want a bit of what you fancy and it's one of the last pleasures in it sitting and eating something naughty, but they never talked about sugar, you know, it creates more inflammation in the body. And we know about that about refined sugar. But you know, Neil's oncologist, specialists, they never talked about nutrition and I think is something that's really important. I used to juice for Neil, I used to call it the Purple Headed nasty, sorry, that's what I call it because it always had beetroot juice in it because it has micronutrients in it for the brain. So Pragnya would be times I'll bring up half a pint of this blinking broccoli in it rocky juice, and then Apple some stuff that sweetened it. And you'd look at laying in bed you go, Oh, God look it with a purple restart, when I think back, but I think all these things add up to helping to make him as well as possible. What was

Sarah: 17:00

it like for you as a carer because you said you talked about giving up your job, but presumably there was a lot more of your life? Did you see your friends and look at them and think how different your life was,

Sara: 17:14

I have some really good friends. And still you really get to know who your friends are is all I can say, Sarah, you know, when you're caring because not everybody has that empathy and that compassion that you need. Some of my friends were were not so good. So your support network is key. And for me and I connect my heart goes out to all those out there who are caring at the moment caring for your loved ones with help with a brain tumour because, you know, the pandemic as well. Caring can be quite isolating at the best of times, but even with particular day centres, for example, not being able to see families much shielding vulnerable loved one, it's really hard, it's hard at the best of times. And when me my world became a much smaller place. And friends that you'd see on Facebook, you know how they were getting on. But yeah, it for me, it was quite monotonous. It was response mode, constantly being there for him as carers do and also, you feel like you're grieving because I felt I was grieving grieving for the loss of I couldn't have a chat with Neil like I normally did, you know, go out and you know, do what we wanted to do that was over, just constantly tending to him and grieving for what was going to be eventually happening, really. And it could be, you know, the amount of times I've got getting him to hospital, something else happened. And I think oh, this is it. And then it wasn't it and I think my God, he's messing with my mind. Because because it really was. I've been through snot bubbles in a&e, and, you know, Neil has gone off and they've scanned in again, and they're like, you're right. Well, yes, just the same or, you know, the usual you know, just got, you've got ups and downs, and then they'll know he's okay, you know, send him home.

Sarah: 18:47

How do you manage that because that emotional roller coaster. You go from the monotony of caring for somebody every day, it's like walking through treacle. And then you have these moments of crisis where you're emotionally all over the place. And then presumably, then you end up back in that monotony again, and you're just waiting for the next kind of crisis

Sara: 19:09

you do. And you know that it's something's gonna happen probably something's gonna turn up. And so you're in that response mode that fight or flight mode and that's what I was on. That's why so many of us end up falling ill from caring because you're constantly you know, in that stress mode and worrying mode and for me, when you are in that in that kind of mode for years for me, you know, it depletes your immune system. That's why it's so important to have self care self love taking time for yourself, because then you feel guilty when you do you know, dare I go out and have a jolly when you're stuck back here with the paid carer and what most of us do, which is what happened for me is I was pressing my emotions. I wasn't thinking about me at all, and I couldn't deal with whatever I was going on. I was too busy focusing on Neil, but that stress just depleted me and I ended up with a horrendous chest infection. I fell ill a number of times over those years, but I had this chest infection that didn't leave me for months, and then I ended up of all things I had MRSA infection in both ears.

Sarah: 20:10

Oh my god, yes, I'm

Sara: 20:12

amazed. I'm still alive as well. And I'd have to put pink gloop on me in the shower every every morning to try and kill off this MRSA and of course, I've been hugging me and obviously struggling with some years at some stage and caught whatever it is. So they're nearly and I were both going back and forth from hospital I, I was struggling to cope. But at the time I thought I was coping. But any Yeah, and if you and this is the thing, we all put on a brave face guilty of it, and I did as well. So if you saw me on Facebook, well, I always had a drink in my hand smiling, you know, he wants to know what the hell's going on back here. And that's, that's how it was, I and I did love a drink. And that was my distraction. And a lot of us as carers, we do things to distract ourselves, whatever it might be food, like a drink. And you know, I'd have a glass or a bottle of an evening of Prosecco. And if I get out of an evening, I really would drink my body weight. And first. I've got Polish jeans. Yeah, I can drink.

Sarah: 21:13

I was gonna say, How did you cope with a hangover the next day and then having to go back to full on Kermode?

Sara: 21:18

I don't know. Yeah, I did. But I didn't happen that often. To be honest. It was a being able to get out. But it was that kind of release. And we do need that religious, you know, to just get out, do whatever it is you need to do so that you you know, you can feel better dance, whatever, don't feel guilty about it. It's your life too.

Sarah: 21:37

And here's the deal. Isn't it though that people do you feel that massacre or how you know, I shouldn't be going out or and that worry of? Because you almost get to that point, don't you where no one can care for them as well as you can, you know, you

Sara: 21:50

know, you have an advanced level of caring, nobody's going to know I mean, when he wasn't able to speak anymore. I knew exactly what he wanted and how he liked it. You know, I'd been trained up, you know what I mean? So, leaving him in respite. So for example, in that local hospice was I felt terrible. I felt guilty. And I did turn respite down and many carers do turn it down. But when I fell ill and I was desperately asking Julian had noticed that no hospice is it please, you know, can you can? She said, No, it's booked up for another three, four months. She said it's too late when you've fallen ill carers need regular breaks. And that's when I learned my lesson. So

Sarah: 22:28

and that's the thing isn't it is like a lot of people are offered it, they don't take it, then they then they reach burnout. They've completely like depleted themselves. And then they're desperate for it. And then they're asking for like I said, by then it's it's too late. You can't get somebody in at that moment. You're in that point where you've got a plan those rest bites, then even if you're feeling like I think I'm aware, I don't think I need it. Take that opportunity when it comes even if you don't think at that point where you need a break. You probably do.

Sara: 22:59

You do and look, I mean, when I think back I thought I was coping and when I have fallen ill you know people Stewart who was a local neuro charity, he said, Oh, you look dreadful. Then I said, thanks. Why don't you tell me? I didn't really know you back then. But I thought at the time I was coping and that is why I do say to carers in my book and of course, you know, check in with yourself regularly. And for me what after I've fallen ill I ended up nearly ended up in a nursing home for a few weeks, I went off on a silent retreat of all things and managed to shut up and I getting into the outside space was great quote, helps to get deal with the inside space or getting away from the situation at home, whatever's going on. It gives you time to reflect and have peace and go Oh, yeah. Now I realised I felt anger, frustration from certain family who were busy judging me. Because I've got smile on my face on Facebook. Of course, you'll remember that and that's probably what it was. You know, she's going out having a laugh while he's stuck in a hospital bed. That's not how it was at all. But that's what people see and

Sarah: 24:04

feel angry. It kneeled? No.

Sara: 24:08

When Neil became incontinent, not everybody was incontinent, of course with a brain tumour, but he became incontinent like overnight and I was I would describe myself as a little bit of a shouty why I didn't sign up for that, you know, you know, you know, such big man decides to go to the toilet and his trousers on, I just really, let's not go there. Anyway, I'd be sharply and poor old Neil and he listened to my trade. And at the beginning, just gonna be honest, but then I would always apologise afterwards, I said, I am so sorry, Neil. I'm just exasperated of what's happening. It's not you. It's actually the situation and I would give him a hug. And I would say, sorry, I mean, look, we don't know how we're going to behave. You get slapped in the face with it.

Sarah: 24:59

How did he react? Because obviously there's a point where he like you said he was non you know, non verbal, but were there points where he became angry, frustrated by the situation

Sara: 25:10

and depressed Of course, I fully understand I think any of us would be you're not going to not be depressed and you're going through that for a long time. Neil didn't speak wasn't able to speak and then one day as I was feeding him chocolate mousse in his bed set up in the living room. He kept you blurted out three words where they love I love you know, He said, I hate you. And I was really shocked. And then his eyes went really wide because he couldn't say anything else. But I said, Neil, if you've got any idea what I do for you, because I, you know, hug him to him, I love him every day. He couldn't say anything else to you. Now suddenly, he's got an Angry Wife, as well as a I got really upset when I went upstairs to bed that night, I cried in bed. And then I then I realised, you know, so I said, You know what, Neil doesn't love himself, and he's in a very dark place, what makes you think he's gonna go, Oh, hey, love you, too, you know, he's in a very dark place. And he might have even been trying to push me away, because he could see at times how I was and how I was feeling. And I don't think he hated me at all. And when I came downstairs, the next day, I said to him, hey, look, you know, I love you. And I always will. And from that point, I recognised that it was unconditional love. Very powerful, actually. It's through these horribly tough challenges that we actually learn. Otherwise, you don't learn anything. Do we like to still be working in the city drinking gallons of red wine. Things you wouldn't know you wouldn't know these things. And I, it was unconditional love for Neil, right up until the end, and whence Neil came home from that nursing home, it took me it took me some months to actually recover. I've been mentally and physically unwell for quite a long time, actually, I recognised and with that, I made sure that I was okay, I recognise carefully ill, but care for myself. And it could be get out or get out and not feel guilty. I needed to make sure I was okay.

Sarah: 27:09

in caring for a long time. At that point, I didn't reach that decision that had been used that you'd kind of been in it really live in it. Before he finally had that kind of like almost epiphany of I need to look after myself.

Sara: 27:23

It was you know what I wasn't even last on the list. I wasn't even on the list. That's how I would describe I guess for most of us who are caring, you're too busy in crisis mode, dealing with everything. And then you you're in that response mode. So anybody else needing anything wanting anything, you're putting the oxygen mask on them as well? Who else needs rescuing? And I noticed that with a lot of carers that I speak to, they're all trying to rescue everybody else. No, stop. You can't rescue everybody. I know we've got some people, you've cared for all sorts of people throughout the family. You know, that's not your journey. You don't need to rescue everybody. Also be there for you. Because this is your life as well. You know, you need to find enjoyment. And actually in filling yourself up, as I found that I needed to do, I then have more to give Neal weirdly, in being sick, say self care, it's not selfish, but doing the things that I needed, having that regular breaks, even in the day, you know, 10 minutes or half an hour there, making sure I was okay. I was then able to make better decisions. But all of us concerned, yeah, instead of that knee jerk reaction, or, you know, bumping yourself because you're tired and, you know, snapping at somebody, you don't feel good. You know, you've got to look after yourself. I have no choice.

Sarah: 28:41

So then, obviously, at some point, you had to face the fact that now wasn't gonna get better. But like you sort of said, you know, there was that thing where he had lots of times where you thought he's not going to make it, he's not going to make it. But there was a point where you obviously came to the point where he really isn't going to make it.

Sara: 28:59

Yes, it was the day was near leftist rugby and we actually went to Twickenham Stadium of all places, and it was England and against Ireland, just pull the World Cup. It was lovely. I had my mum and dad here. They never came to the rugby but we had weirdly had to spare tickets and said you need to come. So we'll be done up for the World Cup. Anyway, so we'll kneel down along with a load of friends around us. We all went up there together not knowing it was Neil's last time he had a sip of Bollinger you know if you're gonna drink the last thing, yeah, the last champagne surely. And when I got him home to hoist him into bed, he literally threw up and wet himself actually. And he was having a stroke. And I didn't know I just didn't realise that's what was happening. And later into the evening, he didn't seem right. He was kind of seemed asleep. I want to try to clean out his mouth. He bit my finger. And I knew that something wasn't right. So I called an ambulance. And Mum said Oh, shall I? Shall I come out? You know, it'll be ours will be home in no time. You know, actually do but my mum still came with me. And when they scanned him at the hospital late that night, it's like one two in the morning. They said I'm afraid he's having a stroke. He's dying. And I actually said, well, now because it's the IP it was just very been happening so often. And honestly, if we snuck bubbles in have tears that I, you know, and it'd been a late night and I'd had a few drinks. So I was like, what now? And they said it could be a few days and went really? Okay. And I thought, Well, that's it. I'm not leaving his sight. But actually Neil passed away. An hour and a half later. Oh, wow. Yeah, it was that quick. And I'm glad it was actually and I have my arms around him. And I actually said, thank you when he passed, because I said thank you for him being in my life. But I was thankful that he wasn't going to be suffering anymore because we both compassion means to suffer with. And we've both been suffering for an extremely long time. And life isn't about you know, life is about making the most and you can't live from a hospital bed like that as he was for so long.

Sarah: 31:17

What was that like to suddenly go home and never it was after all of that, I mean, that's a massive part of your life. Every single day, this is what you're doing. This is your entire life. And then all of a sudden, it's gone.

Sara: 31:32

Yes, it was my it was because of what I devoted my life to it. In the end I was a trustee for a neuro charity down the road in Twickenham it here ins you know, I was I everything was to do with caring and looking after Neil. And in a split second, I describe it that I could sit down. In that first week when I got home. I said I could sit down. And it meant I was not responsible for somebody else's life. That's how I felt. And I just sat down for a week. And it was beautiful sunshine four days later, it's Neil's birthday. Me and mom had a glass of champagne to celebrate it. And I tell you what I also did, I knew because of the research and how important this is for us all. I did pull it up, put out there to make sure that they donate. We donated Neil's brain because I knew it was so it's limited time before they can Yeah, take the brand, isn't it? It's not something nice, you know,

Sarah: 32:31

something that was you discussed with Neil or was it something that you just made that decision that the thought it was

Sara: 32:38

it was combo I think now would have said yes, at the time. I remember going to Holborn to Lincoln's infield, and one of the doctors there. He showed us a whole load of things he says so rare that people do donate the brains and nearly been quite special where he'd had tumours come and go glioblastomas. And he'd done amazingly well. And I thought, you know, if there's anything in there, it just seems crazy just to allow it to just integrate really, and he was gone. You know, he's not in that body anymore. That's not working for him. So I think Neil would have wanted that anyway. And I remember Neil being impressed with the research and the chromosomes they were looking at, and, and more needs to be done. It wasn't the easiest. I'll be honest with you, Sarah, you know, on his birthday, that's when they took his brain. Yeah, it's weird how things happen. But, you know, at the end of the day, he was the rest of them was going to the credit audience and got to remember Neil was not in that body anymore, not working for him. He's been released from his body. And actually, I will say this, the whole end of life thing, you know, and that last summer of Neil's life, he he wasn't good. He was quite grim, and, you know, not in a good place. And so I read to him, I need more Johnny's book, dying to be me. But she had this huge nd near death experience. And she was in Stage cancer. And while she was in a coma, she had an out of body experience. So this is the chapter, I just read this one chapter to him. But when she came out of her body, she felt all this unconditional love. And her dad was there who passed on her best friend who passed and they said, it's not your time yet. And she said, Well aren't going back to live like that. And understandably, but she realised it was fear that it made her so very ill. So she agreed to come back. And she woke up and she, it was pretty much gone in about three weeks. She had tumours the size of lemons. And those stories is, it's all documentary or documentary. So it's an eternal journey. And I've met her and I've been to a number of her talk. She's absolutely amazing. And I read this chapter to Neil and I said at the end of it, I said, So you see, now, you don't really die, you actually get released from your body, you are spirit, you'll feel all this unconditional love. And you'll wonder why you hadn't gone years ago. I said, Did you enjoy that? And the sun went up that quick. Five days later, he was gone. Wow. It gave me I think he was holding on. And I think it gave me permission to go which is very powerful actually. So we will have to go at some stage all of us you're not here forever and in knowing that and I've done a lot more meditation and things like that in going deeper on all of this on a spiritual side of things is it's fasten I think there's a lot more to life than us just being kind of meatsuit striking. We are, there's a lot more to us and yeah, I've learned a lot, you know about life and, and everything. But I do want to say this area as well. I know a number of carriers who are now long term sick do and they believe from the stress and the burden of caring for all those years. These were particularly people like caring for somebody with Parkinson's. So one lady I knew she, she'd been carrying for years, and only three days after his funeral, she was diagnosed with cancer. And another friend actually, she was diagnosed only eight weeks after her husband, who had a brain tumour, she was then in a wheelchair, and their son was caring for her. And it's like a ripple effect of illness. So I cannot stress enough how important it is to look after you. And your project to you is I would describe it as well, you know, you're feeling low, you're feeling drained, which I'm sure you probably aren't with the pandemic and everything as well. It's been another layer of stress project, you just, you know, through the days that when you get up, what could you do? You know, I know they're rolling around, do the yoga on the kids and the dog looking on. I do bit of energy, or, you know, to simulate tai chi or Chi Gong, you can do it in 10 minutes, you know,

Sarah: 36:44

did you do that sort of stuff while he was ill? Or is this something you've done now, since it's sort of looked back because you've been doing more of this, I should have really been

Sara: 36:54

sometimes I should have done more of it. I think I knew it already. So a lot of it during the yoga and then of course you get out of it. And then you put it was for a lot of us who were carrying you got you, you have a lot of stress in the shoulders, you're holding burden, and our back was snap or whatever. So you just do something simple, but it's all tight. So notice that notice if your backs feeling tight, do some simple you know relaxation exercises, yoga, Qigong, really get yourself body moving, nice and calm. You know, don't do something with it either trying to do Ashtanga Yoga, whatever, those are just simple, you know, and breathing, taking long, deep breath all the way down into the body and feel right into your gut and then mismatching like dirty air coming out and breathing in peace and calm and long, deep breaths. We do shallow breathing, all of us taking those long, deep breaths and really feeling into the body because I really did suppress a lot of emotions. We all do it and then putting on this brave face. So think look at breathing techniques, just simple things you can do throughout the day, or just go right, this half an hour from three till four, whatever. I know, I can have timeout don't think I'm going to start hoovering up. Yeah, whatever you're doing, go right. What can I do now for me and really make the most of it. It might be just having a chocolate biscuit and a cup of tea ringing a good friend. You know, a lot of us have been feeling quite isolated and distanced all of us putting the feelers out and and speaking to friends and family, good friends, those who pick you up and all those who are complaining as well. You don't need that either. So I talk called toilet taps and drains. So focus on the taps in your life, and your local care centre as well and charities in your local area. Still doing great work behind closed doors like Richmond carers centre here was doing mindfulness course online. There's all sorts of things going on to put feelers that took me years to find what was available in my local area, you'd be surprised and there's more and more stuff happening for carers, because it's finally getting recognised. It's taking a slow process, you know, we need more to be done. But still, with the carrier's UK website, it's something like up to 70% of us fall, mentally or physically ill from the stress of caring, it's time for change for all of us, be there for your loved ones, but be there for yourself now.

Sarah: 39:25

Absolutely. That's such good advice. So I think we're kind of nearing the end. It's been really, really lovely. having you on been great talking to you. I hope you've all found this really useful and really helpful.

Sara: 39:37

Thank you.

Sarah: 39:39

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