Episode 11 - Caring for a parent - a young persons perspective

In this episode we talk to Kaj Mistry who was just 22 when her dad was diagnosed with a brain tumour.  Kaj had moved away from the family home and was just starting her life in a new city when she found out about her dads diagnosis. Kaj decided to move back home to help look after him.  Kaj shares her experience of what it was like to  walk away from her new life to take on a caring role for her dad and how this experience has changed her. 

If you are a young person aged between 16 - 30 and would like to connect with other young people who have been affected by a loved one's diagnosis you can join our Young Adult Carers Facebook Group here https://www.facebook.com/groups/thebraintumourcharityyoungadultcarerssupportgroup

If you are over 30 you can join our main Carers Facebook Group here https://www.facebook.com/groups/470978559740874

You can contact our Young Adults Team by emailing YAS@thebraintumourcharity.org
or call out support line on 0808 800 0004

You can find more information about our Young Adults Service here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/young-adult-service/

You can find more information about caring for someone with a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/caring-somebody/

Transcript

Sarah: 0:10

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 brain tumour charity about what we're doing to halve the harm and double survival. Hi, everyone, welcome to the podcast with me today I've got my co host, Sarah Chalice. And I've also joined by Kaj Mistry who's going to be talking to us today about her experiences of being a carer for her dad. Welcome to the podcast, guys.

Sara: 0:41

Hello

Kaj: 0:42

Thank you so much, it's such a pleasure to be here.

Sarah: 0:45

Thanks for coming Kaj and thanks for sharing your story. You are the first young person we've had come and talking about your experiences of what it's like to be a carer from a young person's perspective. Do you want to tell us a little bit about your story how you became a carer.

Kaj: 1:01

Yeah, sure. So last July, my dad unfortunately passed away from a grade 4 glioblastoma, it was very, very aggressive. and the doctors were just so negative about his prognosis from the off, and from his diagnosis to his eventual death. It was 18 months, and it just feels so rapid, but also the longest painstaking sort of time in our lives as well. I think the thing is, with this sort of diagnosis is that you have to watch that person's decline mentally, physically, we lost him in every aspect of his being and I think a lot of it is sort of like, I can't find the words

Sarah: 1:44

This is a thing, isn't it? There are no words when you experience something like this that can fully ever really describe what it's like,

Kaj: 1:51

yeah, 100%. And I think it's really strange, like being my age and having those roles reversed because I always look to my dad to sort of be the one to show me the way and show me the path.

Sara: 2:04

How old are you just to let everybody know how you know how young you are basically?

Kaj: 2:08

Yeah, so I'm currently 24 and when my dad got diagnosed with the cancer, I was 22 and yeah, very, very young. I was living in Manchester at the time, my full time job. It's so crazy the way it started and the way, we all found out, I remember being at work one day, and my sister called me and she was like, dad's dad's had a seizure or something in the middle of the night um it was like, half, two in the morning and you know, Mom was next to him in the bed and can't imagine how frightening it must have been for her. And I think the process of finding sort of like what he had was just so long, because it started with a sort of like, the something in his head, there's something in his brain, we don't know what it is, we need to do the surgery and find out and that process was just so difficult, because we're just waiting for the unexpected and then yeah, we found out it was it was quite an aggressive form of cancer. We're all just so baffled, like surley not dad's like, the most active member of our household, like it felt really, really hard to accept and I think we all went into this sort of fears of being in denial and we were just trying to be so positive for him and uplift him and just be like, it's fine dad. But it was the first time I'd seen my dad actually look quite vulnerable, in that sense as well. I think it was the fear of the unknown, and where that journey would take us as a family. Never in a million years would I think that I would have become a carer for my dad and I think there were certain things at my young age that I feel like, obviously not in a selfish way but it was really strange having to leave the city, I worked in my friends, my social life, because my world became dad and it's the same with me and my sisters. There's actually a 10 year age gap between me and the eldest, and she had a little boy at the time as well and he was really, really close to my dad. I think he was getting really confused like, why why was Grandpa looking so different? Why wasn't he playing with me anymore? And it was really, really difficult having to sort of field those questions because we didn't really know ourselves Dad. Dad's decline was very, very fast. It was absolutely shocking how fast it was. I remember he got diagnosed in February and then in October, this was a week before my 23rd birthday. He just had the biggest seizure and it was so frightening to watch. I just remember thinking like this isn't right like I genuinely thought it was the end like I've never seen anything like it and then we decided to take dad to the Marie Curie Hospice in Bradford. I think for all of us, it was so new and none of us really knew what we were doing and we genuinely thought that he would be so much better off in the hands of professionals, where he had eyes on him all the time, they knew how to use the equipment, because dad had a hoist at the time. So like, just for context, he couldn't move sort of like the left hand side of his body, he was leaning a lot and then slowly, but surely, he just lost complete control. So even when he smiled, it was like, lopsided just, it was. so it just didn't look like dad, he was on a ridiculous amount of medication as well, which made him really hungry and that that made him gain a lot of weight too, you know, it was like me, my mom, my two sisters. So I remember he'd have his sort of beds in the hospice or at home, and the two of us on either side, and it actually take two people to sort of turn him on his side we'd would give him like bed baths would change his nappy would feed him. We do everything that we could for him and yeah, dad, dad was bedridden from November till July the following year, so he hadn't seen even the light of day, because he just couldn't get out of bed and it was really, really difficult to get him outside. And yeah, like, I think it just sort of escalated so fast from the second he got diagnosed to his, eventual death and I think there's a lot of like, there was a lot of dignity lost on his end, which was a really hard thing for us, not only him, but others as well to see, I think having his three girls do everything for him, was really difficult and I could see it in his eyes, even though he wouldn't actually express it and that and I know that, you know, mom really like tried her best to, like, make sure he was as comfortable as could be. It was dad's wish to die at home so we didn't keep him in the hospice. In the end, we'd brought him home and he actually outlived his prognosis by about six months too and I do think him being at home was such a positive played such a positive role in that sort of short extension of his life.

Sara: 7:25

So you know, I think about my husband, and I found he go downhill rapidly in the hospice to give me a to give me a break. But when I got him home, he actually improved through through having love and you know, the home comforts, you have an advanced level of caring, you know, your dad, don't you, you know, even if he can't speak, and he can't express himself, you know, what he wants and needs and what he likes to keep, you know, keeping buoyed up and keeping them at home and if you can do is beneficial in a number of ways. I think you have a bit more control at times as well, don't you?

Kaj: 8:02

Definitely. And he was such a private person before he got sick so I can even imagine, you know, someone random coming to sort of touch me in that sense, because I can't do it myself you'd rather have someone you know, and love, do it for you. You know, Dad has done everything for us growing up. So this was like the least that we could do for him but it was just so heartbreaking to have to do it for him, if you know what I mean. It's just something that we all collectively feel never should have happened. He should still be here living quite a full life and it just feels totally unfair. The thing is like a really, really, like missed my dad before he passed away and I think that's something that not a lot of people kind of understood. So yeah, I think it's just sort of one of those things that that people don't really have much awareness about as well.

Sarah: 9:01

And did anyone talk to you about that when when your dad got diagnosed because it's like you said although it was very quick that 18 months you were slowly losing your dad bit by bit by bit by bit. You've had your dad disappearing in front of you effectively parts, you know, his personality, everything. Did anyone ever talk to you at the time about because you're grieving? You know, all of the each part of those things that that that brain tumour takes away from him you're grieving, even though he's still you know, he's still there you're missing who your dad was.

Kaj: 9:38

Yeah. 100%. And until you actually said that phrase, I actually felt validated in what I was feeling. I feel like it's really easy for others to sort of minimise my loss solely down to the fact that dad was still alive, but it was really painful mourning someone that's still alive. I think there's no shadow of a doubt that I had lost dad where before he died and I wasn't looking at bubbly, loving dad that cared about every aspect of my life anymore. I was just staring at the shell of Dad's physically, mentally, everything about him, it changed. It is really, really painful and, you know, towards the end of his life, we even had to pretend to be like, nurses because he didn't recognise us and there's this whole thing of like, okay, but your dad is still here, like, it's fine but it's like, it's 100% not because it's like, more, it's kind of like rubbing salt into the wound, that it's like someone's almost given my dad a personality transplant, and we're having to do everything for him. There was just no quality of life for him and I just do feel that he didn't really stand much of a chance from the off, I could just see from the minute he got diagnosed, that his symptoms just worsened like, and there was nothing that was really helping him and they just put him on so many drugs, so much morphine so much chemo and I do look back on it now and I think, for what, though, because I just I don't know, like, I know, it was meant to help him in the end, but it didn't and it didn't extended his life, I'm sure maybe for a short amount of time, but I do feel like the love that we had was probably stronger than any of that stuff. So yeah,

Sara: 11:32

I think love is the key, isn't it? And I'm sure people listening to this, you know, it is about love your if you've got people if you've got a family, their family unit, I mean, you've got all your girls wanting you there, you know, giving you love every day, that is a huge boost it keeps him going more than any drug, I would say.

Kaj: 11:51

Yeah, absolutely. And now he's gone.and it just doesn't feel right but if I'm being honest, it didn't feel right when he was still here and really sick. You know, there's, there's a lot of things in life that I feel like, I still got to look forward to like, I'm very conscious of the fact that I'm only 24 years old and I have this like whole future ahead of me but the fact of the matter is, is that my dad is never going to get to walk me and my sisters down the aisle. He's never gonna watch me have any children and he's just a memory for future generations to come which is why I always try to do him justice when I describe him to like people that have never met him and you know, people always say, well, like he's still there and I'm like, well, he 100% Isn't not in the sense that I don't want him in anyway, I do think people kind of tiptoe around the subject of death and grief, I do find that it's the fear of saying like the wrong thing, or trying not to like upset the person that's grieving. For me, I found that the simplest words actually comforted me a lot. and I would much prefer someone saying, you know, what, what's happening is really rubbish but I'm here for you and I'm really, really sorry, because that means that the person has sort of truly acknowledged how dire the situation is, instead of the whole, everything happens for a reason malarkey, which I've heard just quite enough, off

Sarah: 13:21

You talked briefly about the fact that you ended up having to do personal care for your dad?

Kaj: 13:26

Yeah,

Sarah: 13:26

I can't imagine what that must be like, for that role to be reversed and for you to have to do things that you probably never ever imagined not having to do things for your dad that that no child ever thinks they're going to be doing for their for their parent.

Kaj: 13:45

Yeah, 100% You know, even describing what the weather was like outside for him, it was just heartbreaking you know, that, that sort of life that he had, you know, going from someone that loved the outdoors, loved being active. You couldn't get dad to sit down for like a second he was just always about it's insane, to just having him bed bound and he wasn't ever particularly looking at anything his eyes just kind of like flit about, there was no like light in his eyes. You know, we'd sit down, we'd explain what was going on in the news because he loved keeping up with the news. We'd explained what the weather was like how the sun fell on our skin and yeah, I think on an emotional level as well, just trying to sort of explain what he's missing out of life but it's hard because it was just so much that every he was just missing so much and he just slept a lot too. It was it was really difficult as well for all of us. I know that had a period of kind of because of Coronavirus, working from home and being able to care for my dad at the same time and I remember doing sort of like that say a meeting or a team catch up in the morning and then at 11 o'clock, I'd come down and bathe my dad and then I'd go back upstairs and work and that was my norm you know, it was like our dad shower time

Sarah: 15:13

Did poeple at work know you were doing that? Did they know that that was what your life looked like at that point,

Kaj: 15:20

it's really hard to explain the gravity of a situation to people that haven't been through it because when I say to somebody that I'm working with that, I'm just caring for my dad, they think that it's kind of easy, because I'm

Sarah: 15:37

You're just gonna get them a cup of tea

Kaj: 15:41

yeah, literally like that, or, but it was literally so hands on having to get some apron on gloves, scrubbing, run back upstairs, and try and get on with my day in some form. It's really hard and I feel like there's not much awareness around people being young carers, because I do feel like you have to juggle more aspects of your life. For me, you know, I was only just sort of like, getting into the stride of my career and you know, Dad was really, really sick at the time and there's obviously no comparison whatsoever, because dad would always come first but if I found it really, really hard to juggle that um

Sarah: 16:25

Do you feel people minimised it because your mum was there and they assumed your mum was his primary carer and they perhaps didn't think that you were doing as much as you were?

Kaj: 16:37

Yeah, I do think that and you know, it's one of those things where it's like, it wasn't just me and dad in the house. It was like oh but you have your mom to do everything too but I think we forgot that dad was bed bound, and my mom is tiny, and she couldn't move in on her own.

Sara: 16:55

And do you know about vocalising, isn't it you know when it when I'm hearing your story Kaj it's letting people know what you actually do and anybody listening to this who's caring for their loved one we got on I'm just caring for him that sounds really broad. and it could be a cup of tea. but actually, no, it could be like you have like I have that hoisting you know, you're getting gloves on, you're cleaning them, you're changing their nappy, you're wiping the drool, you've it's something stuck out of their throat, it you know you're having to do, you're mixing the medicines, it's very hands on and you're basically a nurse in essence, if you don't tell people that we don't vocalise people, that's like, even your closest of friends or, you know, colleagues at work, they just don't know,

Sarah: 17:38

Do you think there's a little part that doesn't want to tell people because you're almost trying to preserve the dignity of the person you're caring for, like, you don't want to tell somebody, my dad's in adult diapers, and I've got going change him or I'm just late for the meeting, because I was changing my dad's nappy you know, and there's a part of you that doesn't want to say that, because you know, your dad would have hated that people knowing that so it makes you minimise what you're doing.

Kaj: 18:02

Yeah and also, in the moment, I just had this whole, let me just crack on with it and, you know, once I had showered him, I always had the urge to kind of, like, sit with him for a little while, like, hold his hand and, and just chat to him but it's just time wouldn't allow me to do so at that stage of my life was probably the hardest. Obviously, it was a blessing in the sense that the pandemic made us have to stay under the same roof and you know, I had the chance to spend the best quality time with with dad before he did pass away. But in the same vein, I was juggling so many different aspects of my life under one roof, not really seeing my mates at all, and not really having any kind of like social interaction other than sort of like caring with dad and then working and yeah, it does really sort of like build up in that sense as well things just got really bad. fast

Sara: 19:02

What did you do at that time? Did you manage to get snippets of time to look after yourself Kaj ? What were you doing to relieve the stress for you? Did you notice at times how you felt and thought, ikay, I need to go have a walk or do something to get out of here to just have some break?

Kaj: 19:18

Definitely and I think a really important point with that is, you know, when when all your family are under that same roof caring for a particular person, it's really easy to get on top of each other and to sort of scrap and, and pick arguments because the thing is with the situation was that it was so unfortunate, but the bottom line is there was no one to blame and, and that is so difficult because there's nothing there's nothing you can really direct your anger towards. So I think doing sort of cathartic activities, like I took up painting at the time, and I made sure I got out at least once a day, just to walk, the fresh air didn't so much good. It meant that I was able to let off steam that I'd otherwise let out on my sisters or my mum and yeah, I think we all try to take a leaf out of that book and make sure that we're all trying to get out as much as possible to. But with that comes the guilt of leaving dad in the house, I remember I'd only go for a walk around the block and feel so bad about leaving him in bed. and all I wanted do is just sort of show him where I was going and take him with me. So I'd rushed back home as well so it's not even like I could enjoy the time that I had outside the house, too. So yeah, it's difficult in that situation but you've got to find those little moments of peace for your own sanity because yeah, just being under that same roof for a really long time can't do anyone any good.

Sarah: 20:55

You talked about how it affected your life at the time being a carer and you know moving back home. How's it been since since your dad, your dad has sadly died? How How has life changed? How are you finding, picking up the pieces of your life now?

Kaj: 21:14

Yeah, it's kind of like, if I had to pull it into like an analogy, like a massive tornadoes just torn through our house but it's taken my dad, and we're just left to sort of pick up the pieces and we're trying to sort of rebuild our lives and it's just not the same and you know, it's been over a year now but in the, in the great aspect of time, it's absolutely nothing at all and it you know, dad dying was the end of probably the most active relationship I've had, you know, in my life, he was like my absolute world, I didn't go a day without speaking to him. So I think we're all just trying to kind of grow from what happened, I know that I've kind of turned to the brain tumour charity to kind of release a lot of emotion and trying to help others and, and trying to kind of live, like, have dad live through me if that makes sense like, I know that he's not here but he's still half of me and I know that he'd love the fact that I'm doing something lovely for charity, in his memory but yeah, like life has changed and it's crazy because it's permanently altered and every time I go home, I'm very reminded of that fact, when I see where his bed used to be and I see you know, a little scratches and marks on the walls from where we bang these bed and yeah, just just walking into the room and seeing the sofa we set out every Friday night, and I'd get out a little bit of brandy, and just just constant constant reminders. But I'm lucky enough to be able to have Manchester as my place to kind of take away from from all the negative feelings that are within the house. But I know it must be like, more difficult from a mum who is still living in the house and you know, she's reminded of that every day, someone in the same bed that they shared and, and having to walk through what was essentially a home hospice, is it's just really sad but I think as time goes on, I do believe that, you know, the grief doesn't get smaller, but you grow around the grief. So,

Sarah: 23:40

Do you think you're still in a caring role, though? Do you think that it's just changed that you've now got to care for your sisters, and your mum in you know, in a sense, because you're all grieving or at different stages of that, and that you've all got to look out for each other because you've all been through a real trauma

Kaj: 23:58

Absolutely

Sarah: 23:58

and what you've gone through during that 18 months of your dad from when he got his diagnosis, that's a trauma that you've all got to somehow navigate and come through in your own different ways. Do you find that now, you've moved away back to Manchester, but there's still a part of you that is really worried about how the rest of your family are doing?

Kaj: 24:18

Oh, absolutely and, you know, I know when before dad passed away, he just said look after each other, don't fight, you know, just be there and we all have a shared responsibility to be there for each other now, because, you know, we're we're a family of five now we're four and it's made as sort of a tighter unit than ever before, not just because of Dad's wishes, but we're all we have now. So definitely, even though we're all leading different paths in life, it makes me want to kind of like, be there a little bit more and like look out for my family, too and you know it I'm very conscious of the fact that as my dad is a prime example of this, that tomorrow just really isn't promised, you know, he was living such a seemingly fine and healthy life, only to be diagnosed with a malignant brain tumour the next day, and it's just, it's just insane. So yeah, absolutely but with that, I think our grief is so it's so individual to but in the same vein, like we've all lost dad in different ways. So I know my sister's kind of turned to dad for different things. My mom lost her life partner for 36 years but not only that, you know, my four year old nephew lost his only living granddad, who he was so close to, and he doesn't fully grasp the concept of death, too. So we've all just got to kind of bound together and just be there for each other more than ever.

Sarah: 25:57

And is it difficult when you go home because I know when we talked previously, you said about, you know, your dad's notebooks are all there and that his clothes, he's got a wardrobe of clothes, that one half is your dad pre diagnosis, and then there's like, these extra extra extra large, close. like, it's like the two, two different worlds. Is that difficult?

Kaj: 26:17

Oh so difficult yeah and just the thing is with Dad was that, basically, when he left the house to sort of like get checked out at the hospital, he never sort of came back in the same way as he left. So his leaning got a lot worse and then he eventually got bed bound so the hospital didn't sort of let him come home straight away and then when he did come home, he was just confined to the bottom floor of the house. So he never got to visit his bedroom or touch his belongings again, never got to sort of like where his clothes and yeah, it's honestly like having like two halves of a person in that sort of same room when I see his extra, extra large clothes but then I see his sort of petite shirts as well. He always used to wear like trousers and tuck his shirt in his troucers, quite high like a really dad outfit but in the same way, it's like someone's just sort of like left their life on on just sort of pause for a second and the thing was sort of packed away, I think, yeah, it is really, really difficult because you see all the hopes and aspirations that he was wanting to sort of come back to and he had a lot of desire, and a lot of wishes out of life. He wasn't done travelling, he was only a year into retirement. He didn't get to enjoy his hard earned money. It is really, really difficult having to revisit that same environment.

Sarah: 27:58

And it just shows the speed, doesn't it? Like you said, you know, he left the house one day, as if he was just going to carry on his life, like he would just go into hospital to get checked out. By the time he returned home he was bed bound and living downstairs. He wasn't able to even go upstairs to resume any part of the life that he'd walked out the house

Kaj: 28:19

No, that day.

Sara: 28:20

No, I would say that as well with Neil, you know, I always found that kind of weird that he'd never be up the stairs again. I'm in a little 1870s cottage and the stairs are pretty steep anyway, and it was it was always a bit near the you know, knuckle of me trying to get him up there anyway, as he started to lose his balance and were one of the tumours was. and that whole point of him not not being able to he'll never be up those stairs, again to just to go into the main bedroom and stuff, just things that we take for granted and then, you know, down in the living room, and it is it is strange, and it is like those two lines. You're right, you're absolutely right. It's yeah, and the bigger clothes because Neil was on steroids as well. and it just naturally you do just put on weight and they're hungry. so, you know, Neil was in these triple XL and he's kind of like, call him his eating trousers, but you know, the jogging bottoms, but they're just comfortable, you know, just nice, comfortable things that are easy to get on them and off them again, you know, it's rarity that I put nearly in a shirt or in trousers, it was hard work actually to try and do that when you're rolling somebody from side to side and then having to hoist them.

Kaj: 29:26

Oh, absolutely, yeah. 100% we, it was actually one of Dad's final wishes as well just to go upstairs for the last time. So we had him hoisted, taken upstairs in a wheelchair and I'm not completely sure if he registered every single thing that was happening, but he had a smile on his face and we took him from room to room and there was just that little spark that was there. I could see it and yeah, he visited his bedroom. He looked out of the window just small things that people really do take for granted meant so much to him in that moment,

Sara: 30:06

Wonderful Kaj. I really absolutely love that because I loft conversion done in kind of the last year of Neil's life, and I really wanted to get Neil up those stairs and see what had happened in you know, the house and how amazing it looks in comparison but Neil was he was like, I don't know, he was like, 1 stone, I think, he was sliding down the walls by the time we tried to get him up. We've got a couple of rugby boys round, you know so I think that's really special that you did that.

Kaj: 30:34

Yeah, massively. I think it's just so like, any time he asked for anything, food, drink or any wishes, we just wanted to do our best to just fulfil it for him because it was just the least we could do. In that moment. My role for Dad was obviously an ice cream feeder so ice cream.

Sara: 30:58

Oh great Job,

Kaj: 30:59

but because he really struggled swallowing towards the end of his life. Ice cream was like his best friend was the only thing you could enjoy and I can imagine it felt quite nice trickling down his throat. I remember him because he had difficulty swallowing he'd leave for dinner, but he'd still managed to muster the words ice cream and look at me.

Sarah: 31:21

Can you eat ice cream now witout thinking of your dad?

Kaj: 31:25

It's really strange that we don't so he used to have ice

Sara: 31:25

I love that cream and a little bit of muffin and we don't buy those particular muffins anymore. We don't eat ginger cake and custard because it reminds us of dad. Awww

Kaj: 31:43

it's small things like that, which we bought religiously for those last few months of his life and we had so much of it in the home when he died. that that felt like his pudding like us eating it like we would never have it

Sara: 31:56

How you're describing it you're describing Neil because he was my biscuit munching machine and he loved his cake and ice cream and even a message from Facebook came into my onto my phone today in Gran Canaria, and my dad called him the cake Crusader. because he just it was a plate of cakes, and it was ice cream and it was custard as well. It was like a full on medley, honestly, so is that, you know, it's kind of like really comfort eating really something that they enjoy is one of the last pleasures, let's be honest, is food.

Kaj: 32:30

Absolutely. I think, you know, food is something that couldn't have been taken away. It was one of the last pleasures of his life and so we gave it to him. It's not like he could have gone out and, you know, seemed somewhat interesting or had a had a meaningful conversation the food aspect was purely just for him and his enjoyment and that's what made us want to kind of feed him more like he's happy

Sarah: 32:57

Anything you hear when you're when you're in that situation. It's you just think it's it's the only thing I've got left the only thing in my arsenal now to to ease their suffering in any way, because it's the one thing that gives them pleasure.

Kaj: 33:10

Yeah, 100% and even though dad also, he was bed bound for like a good six, seven months, the nurses were so shocked that he had no bed sores, and he was laid in bed for that amount of time and we were like, well, it's because of our impeccable care.

Sara: 33:28

Quality of care, yeah that's very good.

Kaj: 33:33

Just, we just wanted to ensure that he didn't lose obviously, he lost dignity, in the sense that he was in an adult nappy. but cleanliness was obviously really important to him as well and you know, health was really important to him as well and seeing him eat that amount of sugar and cake it was really bizarre because I've never seen him crave that so much and in fact, he used to shout at me for eating so many sweets saying all my teeth are gonna fall out and then he's on his third ice cream of the day

Sarah: 34:09

How has this changed you because it's an experience that most young people would never go through.

Kaj: 34:15

I feel like I've got a greater perspective on life and what what it really means to me, I don't care for materialistic things as much as I used to, because I found that my dad and my family are actually such a main source of joy in my life and when dad passed away a really, you know, massive part of that joy faded away within me as well. So I feel like I've come to appreciate the sort of like non tangible things in life a lot more I have become a lot more selfless and aware. and you know if someone's going through a bit more of a trickier time. I'm a lot more I'm able to kind of relate to it a little bit more because I hadn't it sounds so silly but I feel like I hadn't fully suffered up until that point of until that point of losing dad and just didn't know, I have have a greater realisation of what life is all about and it's all about just like love and being around people and being loved in return

Sara: 35:24

So you have greater compassion than kaj in that's the you know, in the in compassion means to suffer with and we certainly do that when we've got somebody we love immensely going through that o you've got greater compassion for those around you, you have a better understanding of life now you've been through what you've been through.

Kaj: 35:43

Yeah, it's really sad, because there's not actually many positives that come out of a situation like this and a lot of people always say to me, like, you're so strong, but it's like, have no choice. I can't just crumble and stop my life and lay in bed as much as I wanted to. You just got to keep moving and kind of have that dad voice in your head of just keep going, like, keep going and I guess one of the blessing, one of the blessings of having someone that's terminally ill too is that no words are kind of left unspoken, you say what you want to say within that moment, because you know that they might not be there, the next day. So we were all very vocal about the fact that, you know, we wanted to make dad proud, you know, whilst he could still register thing, we told them, we're going to make proud dad, you're still going to be with us and just kind of comforted him in that sense. Whereas if it's quite a fast and tragic death, you know, you hold on to all of that so we were really lucky to be able to speak to him but then it's sort of like we said it, and then it was like, all that waiting for him to die and he had all of that he held on to all of that in his heart, which I think is like really lovely, but sad at

Sara: 37:03

I was going to say that's courageous. I think for anybody the same time to listening to this, it's very difficult you know, even I'd be honest with you, my dad, you know, you didn't say the words I love, you know, men in general are not very open and a lot of us aren't to say to even our nearest and dearest in families, you know, to speak from the heart to our loved ones is it does take courage, and it can feel very awkward, but it's easy to do that is profound, and it's liberating, I would have thought for you to, to said what you really felt to your dad.

Kaj: 37:33

Yeah, yeah, I think it's really important to say things to people whilst your still alive and well cos I didn't want and it's the same with dad, it was important for him to get whatever he had on his chest out whilst he was still able to speak as well and I think all of us kind of felt a load lighter after doing that, too because, you know, even though he's, he's now passed away he's he's kind of registered that and he's understood that it's okay to let go and if he wants to kind of like pass on and you could tell he was fighting so hard, was the last few days of his life and I do remember, I just remember saying to him, it's alright dad, you know, just relax like, it's okay we're all here with you nothing to be you know frightened about and I think we knew it was coming with dad. We did sort of like night shifts. so we'd move him into the living room and one of us would sleep on the sofa and just watch him. That person would do the shift from sort of like 8pm when dad slept 7pm or 8pm when dad slept and then stay up till 6am the next day

Sara: 38:47

Wow.

Kaj: 38:48

And then another person would come downstairs and take over dad and then give him his breakfast and his morning wash him brush his teeth for him and then that person would go to bed and wake up a little bit earlier but we'd have a sort of like regime and routine.

Sarah: 39:02

Wow

Sara: 39:03

That's amazing. Kaj

Sarah: 39:04

Yeah,

Sara: 39:04

I've not heard that before actually

Sarah: 39:06

Yeah

Sara: 39:07

and how long did that continue this kind of routine of taking over each of you like a relay race almost of

Kaj: 39:14

Yeah oh, it was months months like months of it and I just remember like, staying awake and I'd watch like a film on my phone or something to try and stay awake but out the corner of my eye watching dad to if he's breathing stopped for like even a second I used to jump up and like shine the torch

Sara: 39:36

He wasn't aloud to go was he? What's going on? What's in his face. happening (laugh)

Kaj: 39:46

And also with dad, like when you're sleeping at night, you kind of like turn to the side and then you turn to the other side you know, you need sort of like wear your back out dad couldn't turn on his own so every few hours we would turn him on his side to sleep, we'd give his back a little rub just so it

Sarah: 40:01

oh wow wasn't sore and then we turn on the other side, give him water if he needed to, there was just so much to think about just just sort of like make sure he got like the highest quality of care. We knew that we basically did have a night nurse come as well and we tried that out for a little while. But my dad was really uncomfortable with the prospect of someone he didn't know in his house and looking at him sleep. Yeah

Kaj: 40:30

So we were like, we'll do it it's fine and he had such a peaceful night's sleep with us around, understandably but yeah, it was it was so draining, because the care doesn't end from when they sleep, you have to keep your eye on him.

Sarah: 40:46

Obviously, you were young person got lots of friends and stuff how did you explain to them what was going on? And what would you say to people who have got friends that are going through this, that they could do to help make it easier? Because you're going through this for 18 months that's a long time in a young person's life, it's a long time in anyone's life but it's a long time, your life's on hold. How do people respond mow, when you say, oh, you know, my dad died? That's a bit of a double question.

Kaj: 41:14

Well, just to touch on your first point, I was really lucky to have such a great set of mates whilst this were happening, and they checked in. But what I was with them was very honest and very plain about what was happening and if anyone else is going through this, my advice would be don't sugarcoat it to make other people feel comfortable about the situation. Because what you're going through is genuine trauma, and you're watching someone in your family die and the least that your mates could do, if they are mates is just listen and acknowledge how hard that is for you and yeah, and I think me being really honest about my home situation helped them sort of care a little bit more for me, and they wanted to do anything they could to kind of help, which was lovely. I think in terms of people being helpful. In their words, I find it really frustrating when people have a positive outlook on a really negative situation. I am all for positivity, but not in a terminal illness situation. I think when people honestly acknowledge how hard things are, it made it easier for me because I felt like I could open up to them a lot more. And I think if people even said things like, how can I help rather than do you want help, like just phrasing your questions just that little bit differently so you don't feel like you're being a burden to others, you gotta just sort of like be a bit careful about how you speak to someone going through something like this because if you want to be there, then you've got to be there in its entirety and you've got to know that the person is going to be going through such a long haul, you know, trauma, and it's not going to end when that person died, it is going to continue that that that person is going to hold on to that for a really long time. So yeah, I guess just be upfront, be consistent, and keep asking what you can do to help rather than asking if they need help, because I can guarantee that they'll just say no, like, because it's so much easier to do things yourself rather than accept it from other people. But it's a sad reality but you've got to learn how to accept help. I think that's something that we as a family, really, really sort of like struggled with, not only because of Coronavirus but because we felt so protective of a dad as well.

Sarah: 43:54

There will be young people that are caring for a parent, what advice would you give somebody who who is in that moment now and trying to figure out their way through it.

Kaj: 44:05

I'm not going to give you the conventional advice of be strong and power through because the situation is rubbish and it's okay to acknowledge that it's rubbish. Just make sure you're not going through it alone turn to sort of allies, friends. Make sure you're speaking about how you're feeling. because you're not caring for that person you are offering a piece of yourself too. and it's really important that you don't lose too much of yourself whilst caring for your parent as well. Just just keep talking be honest, you will start to rebuild your life slowly but surely, just know that in this particular moment, it's not going to be the reality forever. It's just a small fragment of your life currently, but it will become a memory that you will eventually be a lot stronger from,

Sarah: 45:00

That's a really good point as well about being careful not to give up too much of yourself and that this is a fragment point of your life because I think when you're in it, it might seem like this is never gonna end, I'm never going to pick up my career again, my life is never going to get back to anything like it should be or what a normal 20 somethings life should look like.

Kaj: 45:23

Yeah, massively and there's just no rush with it. I know, when I was going through it, I had major, I got really sort of jealous of people going out and being able to sort of flout about wherever they wanted, and go shopping, or go out for a drink. It was such a simple thing that they were doing, but I just, it's all I craved. I craved so much normalcy, if that person is within that moment, and that you know, the caring for their parents, just know that you want to kind of tell yourself, you did everything you could within that that moment and not have any regrets and just be there like, I can turn around and say to myself that I have absolutely no regrets. I've been with dad every step of the way. From his diagnosis to his death I was there, what I've watched him take his final breath, just makes you have a whole future ahead of you just make sure you're there and you're immersed in that final couple of days or months.

Sarah: 46:30

Were you scared being there, you know as your dad took his last breath because for a young person, I'm imagining that you haven't seen much serious illness or death, and to suddenly be holding someone's hand as they're taking their last breath.

Kaj: 46:45

So the day dad died, a nurse came to do the check and she said, I think today is the day. So we had sort of amped ourselves up all day, preparing for his death and his breathing was so ragged, so slow, that it could have happened at any point. So we brought him in his bed into the living room, we all sat around, it hit midnight, he was still breathing slow, but still breathing and I remember mom turned to me and she was like, just shut your eyes for a little while. If he really slows, I'll call your promise and then it got to around like half one and she called me she was like, Kaj, it's time, you know, his passing away. When he passed away, he looked so relieved his face looked so relaxed and that made me feel not relaxed, but it made me feel like, okay, he's let go now finally, the suffering is over. It was such a strange mix of feelings, because obviously I was horrified because that was a corpse now, you know, dad left his body at that point. In the same way, he passed away. My mom told me this but before he passed away, he opened his eyes for the last time and then he gently shut them them and then he exhaled for the last time and he hadn't opened his eyes in the in the final few days of his life but that was the last time he opened his eyes, just before he took his final exhale. So I think he knew that he was ready to let go. To be honest, it would be selfish for me to want him here in that state as well because it's purely like, it's not like he could do anything with his life. I just want to cuddle him. I just want to have him here just to cuddle and have quality of life, too. But yeah, I was horrified as well, in that same sense Sarah too, I think, as lifeless as he was, there was still life within his body and then for him to just be still and then eventually cold and then it all happened so fast when we called, like the coroner and they came and when the when he when they took his body. That was the most heartbreaking thing, because we'd kept him in this house for like, over seven months. It's just like, that was the first time he left the house and it was because he passed away and then yeah, the things just sort of like snowballed from there. and I think that none of us at that point, after he passed away really had a chance to think about it because it was like, funeral arrangements and who's coming to the house and these condolence messages flooding in and flowers at the door and, you know, I think, when the ceremony was over, and we returned to an empty house, it was like, right this is really, really like, heartbreaking, because this it feels like the end a funeral feels so final, like, it feels more official you're left with your thoughts at the end of the day too and it's really bizarre and still to this day, going home to my house without dad

Sara: 50:00

At least on the day, you were all you were all together and that was one thing that I wanted, because you just never know, you know, you can all turn your backs, somebody;'s gone to the loo for five minutes and things have suddenly changed and I always said to the powers that be as it were not particularly religious, but I just went, please just make sure that I'm there you know, at the end, I just want to be there right at the end, when you have that kind of love and you've been with them all that time and you put in so much love and effort you want to be there for the whole story is the way I would describe.

Kaj: 50:31

Yeah, I think when it when he passed away, I don't know what it was. but his body just looked like different like before, he used to look quite big, but in, he got a little bit like thinner, because I think a lot of air had left his body at the time as well. So we were able to squeeze him into one of his old jumpers and it was the first time he wore it, and it's like, oh my god, like it's actually dad's like, his glasses were on his face and it just looked so bizarre. Just we gave him just such a nice, peaceful send off and it just happened in like, the nicest way and I'm so glad that we were able to fulfil everything that he wanted. It's a small bit of peace that we can carry that okay, at least nothing's amiss. because I know that we never get the chance to fulfill any of his dreams now, but doing it in that moment probably meant so much to him, even though I couldn't convey how he was feeling. It's a complete testament to him that he's the one that, you know, raised us alongside mom and really taught us what what family means our family values, we look out for each other, we have each other's backs and you know, God forbid any one of us get sick again but I'll do it all over again you know, if any of my family got sick,

Sara: 51:54

Bless you

Sarah: 51:55

That is testament that you said to what your dad instilled in you that even now, knowing what you know, you would do all over again

Kaj: 52:03

Yeah, absolutely. It's just such a an affirming and grounding experience and it's made me just grow up. like, it's just it really has, and, you know, and explaining what I've been through to other people. I feel like, until you're immersed in that situation, talking about it just doesn't scratch the surface of how it felt like, it's really hard to convey my words into into my thoughts and emotions but it was really, really difficult but I know now, living here, and I know that my dad's blessings are with me all the time and I try and think I think about him all the time and try and live in a way that he would want me to. So that's like a small bit of solace I can carry with me for the rest of my life.

Sarah: 53:00

Yeah and knowing that in everything you do, like you said, and everything you do, there's a part of him that lives on because all that he instilled in you is how you go on and live your life.

Kaj: 53:10

Yeah, yeah. 100% you know, dad was such a loving person he was a bit like, bit like Neil, Sarah, where it's just, it's hard for him to convey emotion but he's still, you could tell from his actions and he'd never say no to a cuddle, you could tell he just loved affection he liked it. but he wouldn't like the walk up to you and say, can I have a cuddle? It's just not the way dad was.

Sara: 53:42

That's great that you had such a beautiful relationship with same with me with Neil actually, but that you know, that a big heart a lot of love and in giving care because not everybody I've kind of done an interview before when we're not called caring for an angry man and you can only imagine and you know, it's gonna be a slightly different scenario there. But, you know, for me, it was very blessed in the fact that Neil was love and then you you want to and you want to care for them and they appreciate it always. I mean, there were a few things of course, because you're a human being. But I think give it you know them the heart of gold and they are so much love and it's easier to do to be honest with you must be you know, caring for somebody who loves us

Kaj: 54:28

And I heard this really nice quote the other day, it's actually it said grief is just love with no place to go and it's like, you want to give your love to that particular person. It's like I have bounds of it and I just want to give it all to my dad.

Sara: 54:46

Great phrase I've never had that one Kaj thank you for

Kaj: 54:49

Yeah. It's a really a really touching experience that sharing that I've been through and I feel like sharing it and talking about it. It's very relieving therapeutic for me, and knowing that someone could be listening to this and kind of think, oh, hang on a second, I relate to that

Sarah: 55:07

yeah,

Kaj: 55:08

that makes my experience just that a little bit more worth it because it shows others that actually, in fact, I'm not alone in this, it's very easy to feel alone in the moment, because you're looking at everyone else getting on with their busy lives, and you're at home, caring for a parent, but it does eventually get better.

Sarah: 55:29

That's a really important point and I think that's a good place for us to end really, because I think that really sums it up you're right, you know, it doesn't last forever, you can rebuild your life that we build it as a better version of yourself as a result of your experience.

Kaj: 55:46

Yeah, absolutely and, and like we touched on, so easy to kind of go down dark avenues when things like this happen. So many negative things you can turn to, you can become hateful, bitter, and just not be yourself for a really, really long time but then you've kind of got to ground yourself and think that can't live life with all these sort of negative feelings. You've got a live not just for that person that passed away but for your own sake, just do it for you just be be good and try and try and come out of the situation with a better outlook than when you went into the situation and kind of build on that.

Sarah: 56:31

Brilliant, have you got anything you wanted to add Sara?

Sara: 56:35

I don't think so thank you, Kaj thanks so much for sharing from the heart as well you can really feel it thank you for sharing for us and for all those out there listening to this it will be greatly helpful for anybody, particularly young who's going you know, going through caring for a parent at present.

Kaj: 56:51

Oh, well, thank you so much for having me it's genuinely been such a pleasure. If anyone out there is listening and they feel like they're alone, just know that you're not and that there's so many places you can turn to for support and you know, you're never alone.

Sarah: 57:05

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