Episode #002

Loss of both parents to dementia: Katie Elliott

Transcript

[00:00:00] 

Katie: Hi, I'm Katie. By the time I was 41, I'd lost both my parents to dementia. 

Claire: Hello! You're listening to The Silent Why podcast and we're your hosts Claire Sandys 

Chis: And Chris Sandys. 

Claire: We're on a mission to find 101 different types of loss to see if it's possible, to unearth hope in some of the more crappy things that we have to live through here on Earth.

Chis: Our guest in this second episode is Katie Elliott. 

Katie: "Things were really fraught in my relationship with my mum because I kept losing my patience and I was tired, and I was grieving, you know, because the worst thing that nobody really tells you about dementia is the fact that you're you're in loss all of the time." 

Chis: After recovering from a period of personal crisis, Katie created Little Challenges. Which provides, to quote: ideas, inspiration, and practical tools to help make the messy business of being human just a little bit easier. 

Claire: Katie found herself in the devastating place of losing both her parents to dementia, and she shared some valuable insights and wisdom, not just around losing her parents, but also how she processed that daily grief of caring for parents that eventually stopped recognizing. Her tips on being kinder to yourself and naming your emotions, speak into so many situations that we can find ourselves in when facing loss.

Chis: Why don't we start with you just giving us a brief overview of, of who you are, what life looks like for you. 

Katie: Thank you, Chris. Thank you, Claire. Well, I'm Katie Elliott and I run a project called Little Challenges and that takes up a lot of my time. So I spend a lot of time looking for and sharing simple, practical things that we can all do to make life a little bit kinder and easier.

So that's my passion project. I'm also mum to two sons. I'm a former jazz musician and composer. And I really like going for walks barefoot. Does that tell you enough? 

Chis: Walking in barefoot, very different from the music. Where did that come from? What was the, how did you suddenly start enjoying being barefoot outdoors?

Katie: Well, I don't go for long walks barefoot, but one of the things that makes me happiest is being outdoors, being barefoot, just walking, whether it's on the beach, whether it's on grass, whether it's, you know, somewhere that's relatively safe to walk barefoot, but there's, you know, I spent like most of us, I spend a lot of time on a computer these days, and I spent a lot of time indoors and there's nothing quite like, just really feeling like an animal on the planet to kind of put everything in perspective. I find so that's, I don't think that's something I've said about myself ever before, but there you go that's new for today. 

Chis: Just in terms of sort of family background, Katie, tell us a bit about your upbringing, perhaps. What do you remember? Fond memories, or not so fond, about your childhood, your upbringing, what that looks like? 

Katie: So I'm the youngest of four children. And I was very, very much an afterthought. So there's a big gap between me and my three brothers. The earliest memories I have are of living in Cornwall with my parents who were quite elderly. And I would describe it as as a challenging upbringing one way or another. We tended to live in the middle of nowhere and my, parents weren't hugely sociable. So I was quite lonely. A lot of the time. And the family dynamic was not easy. I think I've realized increasingly as I've got older, it's one of those things when you're growing up in it, you don't know any different, but then as you get older and you talk to other people, you, can see it slightly differently.

So my dad was 58 when I was born, which is quite old for a first time dad. So my parents had both been married before and he hadn't had any children before, so it was quite a thing for him to become a dad at that age. And he was born in 1914. So he came from a very, very different world. I was born in 1972 you know, our experiences of the world were radically, radically different as young children, I think. And so I don't know how well equipped he was to parent a child in the seventies. And that's probably where some of the challenges came from, but we lived in amazingly beautiful places on the edge of Bodmin Moor, very secluded and very magical. And I have lots of fond memories of walking about barefoot there actually. And because there wasn't anybody much to play with, I spent a lot of time making music, so there are things I can definitely thank my childhood for, because I think it made me creative and resourceful and not afraid to be alone. 

Claire: What did you sort of dream of being when you grew up, did you have aspirations to what you wanted to go and do?

Katie: I always wanted to be a musician. I remember lying in bed at night, in the dark, just picturing it. And I remember sitting, you know, out in the fields during the day, having kind of escaped from my parents and found somewhere quiet to hide and just watching the clouds go by and imagining pieces of music and imagining being famous. And I remember as a kid and particularly as a teenager, having a really strong sense of, while I might not fit in very well here now and I might not have a lot of friends here now, but one day, one day, everybody will see. So. I was, I was that kind of child who felt deeply misunderstood and a bit out of place and really survived by daydreaming hugely. 

Claire: Had your brothers left home by then? Were you on your own in the family home? 

Katie: Yeah, by the time I was about three they'd all gone.

Chis: I'm interested in your reflection there, you spoke about your dad, but not your mum in a sense of the, differences and experience and your dad's age. Was it similar with your mum as well? Or did you have a very different mother daughter? 

Katie: I think we had a very different relationship. And she was wonderful in many ways, but because my dad was a really difficult man, we had one of those family dynamics where there was a lot of walking on eggshells. And I think everybody was quite scared of my dad's temper. So although my mum was very loving and nurturing towards me, she was also quite keen to avoid him being cross. And that meant it was problematic a lot of the time, because I spent quite a lot of my childhood basically trying to make everything all right, like some of us do. And those patterns definitely carried through into my adulthood. And one reason why I do the work I do now is that I had a very, very long stretch of mental health problems. I had a breakdown for the first time at the age of 12, and that continued until just a few years ago when things changed dramatically for the better, but I think when you grow up with those kinds of patterns, when you feel very important and you feel like you need to make the peace in a household, it, it doesn't necessarily pave the way for good adult mental health. So I've had to do an awful lot of unlearning and relearning of things. In recent years in order to be well. 

Chis: Who is it, Katie, that, that tells a 12 year old that they're having, or at the start of, a breakdown? Or is that something you were only told years later? 

Katie: Nobody actually used those words at the time, but I was too ill to go to school for six months. And the official line was, that it was in my head, I mean, so this was if I was about 12, so what was that? 1984. We didn't have the conversation around mental health that we do now, and certainly, I don't remember there being any, any idea of, of adolescent or childhood mental health challenges. It just wasn't something that was talked about, and in my family, we didn't have language for it. I mean, it was awkward. It was embarrassing. It was inconvenient. I think probably my mum was terribly worried about me. But the general strategy seemed to be ignore it and hope it goes away, which didn't work out so well, as it happened. 

Claire: So how did you manage to get through high school, having got that? Because that's quite a key age, isn't it? At that point when you start to then go into secondary school and obviously a lot of peers, a lot of peer pressure and I mean, it's stressful anyway. How did you cope with that section of life?

Katie: Not very well? Mainly by keeping my head down and I found the social side of school really intimidating probably cause I didn't have that much social contact outside of school. And I remember that the way I coped most of the way through secondary school was I would go, we were allowed to go into the music rooms at break time. So I'd just go and play music every break time, every lunchtime. And then I'd go home. It felt safer really than trying to navigate all of those complex dynamics of teenagers, you know, all of those sort of social hierarchies and the rules, all of that stuff. I found that very, very stressful. So I just kept out of it and tried to be a good student, but I did have further episodes of really quite severe mental ill health. When I was fifteen and eighteen, and then eventually when I went to university, I lasted two years before I dropped out, but that was also to do with the fact that at that point it became apparent that there was something wrong with my dad. And so I partly went home to try and help care for him. 

Claire: And how did the problems with your dad, how did that start? Was that a diagnosis with something or were you just noticing a difference? 

Katie: I remember phone call with my mom. Where she was really upset, and she said, he's just behaving really strangely, and he swore at me tonight, in a way that he wouldn't normally swear at me. I mean, he used to get angry and he was quite scary in some ways, but there were certain types of language that he would never have used. And he'd said something to her that he'd never said before. And she was really shocked and shaken by it. And that seemed to be part of a slightly bigger picture of something shifting and she couldn't figure out what it was. So I remember that phone call when I was at university and there was some mention, and I don't even remember where it came from, whether it was her or whether I could start to see a picture forming, but there was some idea that maybe it was going to be Alzheimer's. And I bought myself a book, because I didn't know anything about dementia, and I bought this book and it was the most alarming looking book. It had a really scary looking cover, and I think it was called something like: Alzheimer's Disease, a Living Death. 

Chis: Sounds like an uplifting read. 

Claire: That's terrifying.

Katie: So I started reading it, and there were definitely things that sounded like my dad, so there was enough there that I had a feeling that maybe we were on the right track, but I found it terrifying because it was actually talking about what can happen a lot further down the line, and I didn't really have a sense of how long that might take, or whether it would be like that for him. So I was reading this book and for me at that point, it was, it, it wasn't a great idea because I had a sense of impending doom that probably didn't support me in handling things well, and probably didn't help me to support my mum either.

Chis: When you were two years into university then, and you receive this sort of news phone call and make that decision to return to Cornwall, to support your mum, to support your dad as well. In that decision making process then, how much of that do you reckon was out of duty, out of choice, you know, out of love for your parents or a parent. Was that, was that a tough decision to make?

Katie: So actually the decision kind of happened for me, I suppose, because what actually played out was that I started getting very anxious when, when it appeared that my dad might have dementia and I started projecting massively into the future about what that would mean. And then I became physically very ill, which may or may not have been connected, but I went home as a result of the physical illness that I had, not because of anything to do with my dad, on the surface, at least. And I went home and I thought, I really just need a bit of time to get my head around this because I had been to the University counseling service and tried to talk to people about it. But what I found was that, you know, I was 19-20, and none of my peers had any experience of a parent with dementia. The people I could find to talk to at university, I wasn't really connecting with anybody who knew much about it, and so I felt very lonely in that. I wanted to try and explore what I was feeling and what might happen in the future, and, you know, I would have well-meaning friends saying things like, oh yeah, I knew someone who had dementia once it was my grandma or whatever, but it wasn't, it didn't feel the same to me. I didn't really feel understood. So when I got ill and then I ended up at home, I thought it would probably make sense to take a year out of my degree, just to kind of pull myself together. Having done that, and living at home for awhile, I remember going to the doctor one time and him saying, 'You should go and live your life. You can't stay here waiting to help out. You can't stay here waiting on the off chance of what might happen. Go and live your life. That's the thing to do.' And I just remember thinking, but I can't. And I can't honestly tell you why that was except I know we had very, very strong message in my family. This idea that the women in my family took care of their parents. My mum was doing it for her mum. Her mum had done it for her mum. You know, I have this story running that part of my job was to, was to care. And I guess there was some sense of pride, you know, that, that was what I wanted to do. I wanted to take on that role, even if it was happening a bit sooner than I expected. So I completely ignored what the doctor had said and looking back, I can see the wisdom of what he was trying to communicate, but at the time I just dived in to this, this idea that I was going to help somehow. And I didn't stay. I mean, by that point we were living in Devon and I didn't stay there indefinitely, but I did drop out of University, and I had a very, very close link with home from then until my dad finally died. And I was very involved in the whole process, even though I wasn't actually living with them. 

Claire: How did your mum cope with looking after your dad, was that, because you had to walk on eggshells a bit when you were living at home together, did that change when he was ill?

Katie: It did change. It was really interesting in that some things got worse and then some things got a great deal better. So there was a kind of sweetness that showed up in my dad that I'd never seen before, which was very, very beautiful. One thing I remember was that he got to a certain point and it, it wasn't really okay for him to manage money anymore, but it was still very important for him personally, to, to walk into town and go to the shops and buy things because it felt like his routine. And I remember my mum getting really frustrated, because she was managing all the money and she would give him bits of cash so that he could go out and do something. And with this kind of sweetness that developed in him, what he wanted to do, a lot at the time, was to buy her a present and he didn't have an awful lot of money. So what he do, he would go to the greengrocer's. And he would look for, he might buy her some flowers or, but anyway, he got into this kind of mindset of: 'Oh look, there's a pineapple!' That's a really kind of exotic, wonderful thing. So he came home with a pineapple, and the first day it was lovely. It was like: 'Oh he's bought me a pineapple, how sweet.' But I remember after some time of this, her saying. 'Oh, I can't, you know, I can't keep giving him money to buy me pineapples.' Because every time for him, he thought he was doing something really romantic and lovely. And there, she was seeing the housekeeping money just disappearing on things that she couldn't use up. That was, that was a kind of lovely example of it. And then there were times like we had to laugh about it because there were so many things that otherwise would have been really difficult. Like I remember going out for lunch one time with them, and he didn't, he couldn't eat everything that he had. He'd got a roast beef sandwich, I think it was, and it was too much for him. So he wrapped it up in a serviette to bring it home and have it later. And I remember this roast beef sandwich kind of disappeared, and mum was fairly convinced that he'd hidden it somewhere so that he could have it at a later point, but then nobody knew where he put it. And I think eventually it turned up in his sock drawer. 

Chis: Of course, that's where every man tries to hide roast beef sandwiches! 

Katie: So there were things like that, which were really beautiful. Really beautiful. And I remember one time, like I remember taking him and buying him an ice cream and walking hand in hand with him and us both having an ice cream. And I remember thinking that's the kind of thing you'd do with a kid. And it felt really lovely because the roles were reversed, but it was nice for me to buy the ice cream and to do that. So there was a lot of healing in that, but then there were also times when he would get attached to an idea and really, really wants to impose his will on a situation. Like one time I went home and my parents by this point were living in a bungalow and it was the middle of winter, and my mum had proper flu. She was really not well. And one of the things that happened for my dad was his, his like internal thermostat went. And so he was hot and cold at funny times. I don't know why. And he was hot and he would go around the house, he would open all the windows, all the doors, turn all the radiators off. And my mom, I remember my mum was sitting there, shivering under a blanket. And I went round closing all the windows and all the doors and turning all the radiators on. And he was so angry because he thought I was crossing him. Whereas what I was trying to do with actually look after my mum, because I was really worried about her. And I remember him raising a hand, you know, in absolute frustration and anger and then just kind of crumpling, because it was like we looked at each other and suddenly for a moment, we realized that we could kind of see it for what it was. You know, there was, there was this ridiculous situation and neither of us really knew what on earth was going on, but it was very, very hard for her, I think. 

Chis: And how quick or slow was this on towards the end of his life? Was, was it a very slow, drawn out thing or did things happen quite quickly?

Katie: I think all in all it took about seven or eight years from when we first saw things happening in him, to when he finally died. 

Chis: And when he died, do you remember reflecting back on that? Do you remember what some of the overarching feelings were for you? Was there confusion? Was there relief? Was there just unknown? Was there prioritizing your mum? Do you remember what that time was like after seven years of what had been, you know, increasingly difficult time. 

Katie: It was quite a lot of guilt when he died, he'd gone into a care home and it wasn't supposed to be permanent thing, but my mum had broken a leg and she couldn't look after him. So he'd gone into a care home as a temporary measure. And my dad was with someone who his dementia made him want to wander. He was one of those people who would walk a lot and they couldn't handle him walking, so they'd put him somewhere secure and I, I had to sign the paperwork for him to be there, and I remember feeling very guilty because I knew how important it was for him to be able to walk, and the thought that he was being held somewhere was a very difficult one. He just got a chest infection, which turned to pneumonia and he died really, really quickly. And I couldn't quite shake the feeling that, that there was a kind of giving up in that and that things could have been very different, but at the same time, things had been really hard. And so there was also a bit of guilt in me because, I suppose I felt some relief, and that's not something you're supposed to feel. 

[00:20:53] 

Claire: Was that guilt just self-imposed or did you feel that that was coming from somewhere else as well? 

Katie: No, I think it was from me and I think my mum felt it too, because she wasn't able to be there because she'd had this accident and that it didn't feel like it ended the way you would have wanted it to end.

Chis: And then unusually, really unusually for you this was an experience that wasn't a solitary, you know, a single experience of dementia, it was something that then became repeated a bit later on wasn't it? 

Katie: Yes. So we had a few years with my mum where things seemed kind of normal and she was able to do some of the things she'd always wanted to do, and that was really lovely to watch. And my children came along and it felt like we were moving into a new phase of our life. And then she started showing exactly the same sort of symptoms that my dad had had. And it turned out that both of them had, had exactly the same combination of dementia, so they both had vascular dementia combined with Alzheimer's disease. And I remember quite a prolonged period where I was thinking, I think I know what's happening and it can't be, it just, it can't be. Not again. Particularly with my mum, because I felt so much closer to her, the thought that we were going to go down that path again, knowing how long and drawn out and challenging that could be. I just couldn't face that for a long time, until there was no choice, but to face it.

Chis: And this time, as you just mentioned, you had two of your own children. So different responsibilities, priorities, your time was taken up with being a mum as well, so what were some of the main similarities, main differences perhaps, with then revisiting dementia this time with your mum?

Katie: Well, something that helped enormously was, by this point, I'd read a book called Contented Dementia, which gave me a different way of understanding what was going on. So I think with my dad, we'd got very frustrated with him because we wanted him to understand things, we'd wanted him to respond like he used to respond. And there was a certain amount of just trying to kind of hammer things home and just trying to get the point across and willing him to be his old self again, so that we could interact with him. Reading this book really helped me enormously because it helped me to see that, it helped me to see things from the point of view of somebody who is living with dementia and what that might be like and how terrifying that could be if you felt like the ground was shifting underneath you and you were looking for memories and they weren't there. And how do you, how do you save face? You know, and how do you continue to be in the world with the people you love whilst you're, you know, on the inside, you're questioning everything and you're not sure what's what. So I had a great deal, more compassion for my mum, and I think there was much less battle. in that experience. I tried much harder to, particularly in the later stages of her dementia, we would try and go along with it much more because a lot of the time there was just no point saying, no, that's not true. Or don't you remember? I realized that those things, we've done it so much with my dad and it just wasn't kind, and it did no good. So I sort of tried to learn how to do that. differently. 

At the same time, you know, my mom was living with us. I was caring for two small kids and the stresses and strains of that were considerable at times. And she would get confused and tell people that I hadn't been feeding her sometimes. And you know, that she hadn't seen anybody for days. And, and I found that really distressing because I felt like I was putting everything on hold to be a carer and she didn't even seem appreciate that. And even worse, she was telling other people that I wasn't looking after her properly. So that was really tough. But eventually we made the very, very difficult decision to find a nursing home for her to go to. And that was, you know, given that conditioning in my family, that just wasn't the thing to do, but we found a fantastic place. And I remember when we went there, the, the manager took me on one side and she could see how resistant I was. And she said, 'Just give us a couple of weeks, just try it, just try it for a couple of weeks and see what happens.'

And by that point, things were really fraught in my relationship with my mum, because I kept losing my patience and I was tired and I was grieving, you know, because the worst thing that nobody really tells you about dementia is the fact that you're, you're in loss all of the time. Like every time you see someone and they've forgotten something, or a behavior has changed, or they've lost the ability to do something that they could previously do, it's like this incessant or kind of incremental grief, it's not like there's a big loss and then it's over. That's something that can go on for really, really long time, but it's, nobody's got capacity to give you support and understanding for a grief that just goes on and on and on.

So I was really worn down by the time things were getting bad with my mum and I didn't want her to go into a care home. But it was the best thing that could possibly have happened because once she went there and someone else was helping with all of the basic care that she needed, it gave us space to actually be playful, and appreciative, and present with each other in a totally different way. And my kids and I used to go and we'd sit on the floor at her feet and she would tell us these outrageous stories of things that she said she'd done since we were there last, like one time she said, she'd gone to Canada and fought with the army. And then another time she said, she'd got on a train without a ticket and spent a night in a hotel with a strange man. She'd done all these amazing things. And we'd just sit there and listen to her stories, you know? And it was wonderful because she felt all excited about the things she was doing and we felt all excited, cos she was massively entertaining, but the big difference was by the end. I got to be with her at the end of her life. She had a massive stroke one day and we knew that she'd never wake up and I got to spend the last 24 hours with her. And I played music and I sang to her and I cuddled up with her on the bed and the kids came to see her, and I just did everything I could possibly think of. Even though she wasn't conscious. It was just this amazing opportunity to, to be there and to do all the things and say all of the things that I wanted to say, which I hadn't had with my dad, that was just, you know, a phone call out of the blue. And I have to say that that 24 hours would have to be right up there as one of the most beautiful experiences of my entire life. And I did, unlike with my dad's, where I felt like it was all a bit wrong how it ended, with my mum it felt all a bit right. As much as they can do. Yeah. 

Chis: Which will no doubt have had a massive impact on the days, weeks, months, years that followed in terms of processing that and thinking back on that, it sounds like it would have been a lot less of a painful journey then maybe with your dad in the time that followed. 

Katie: Yes. Because I don't think there were the regrets and that's such a gift, isn't it? When you don't find yourself with regrets. And yeah, I have a sense now, you know, I'm several years on from my mum's death, and many years on from my dad's, now everything's shifted and I find that my relationship with them both is very present and much better in most ways than there ever was when we were all here. And that feels like a real joy to me, actually, that I feel that I can share my life with them. I don't have a sense of them not being around. I feel very much that they are around. But it's taken quite a while to get to that place where it feels like something, thinking about them now makes me smile. And mother's day and father's day and all of those things, they make me smile, but you know, there was a good while when it didn't feel that way.

I think something that I've learnt from, from their dementia has been to be a lot more present. Because there, you know, there were probably in total, forteen, fifteen years of my life spent in some way, caring for parents with dementia. And really the only thing I ever found that helped enormously was just to be where you were with them in that moment and appreciate it for what it was. But whenever I projected into the future, my fears or my hopes or my what ifs, it was just miserable really. But even in the times when, both my parents got to a point where they didn't recognize me consistently, there were times when, you know, at one point my dad introduced me to my mum and said, 'Have you met my daughter?' So there were things like that. Even when those things happened, there was still a person there that you could reach. And I couldn't reach my dad, and I couldn't reach my mum, but I could reach a person who essentially just wanted to feel safe and loved and seen. And in both cases, you know, they were still responsive to cuddles and nice things. So there were ways of connecting. Through music or through silliness or through stories or through things that felt nice, or smell nice, or look nice or all of those very, very immediate in the moment things were there. And I think that probably has taught me to just be where I am a bit more. I would say that that's a gift to a parent, really, because it's so easy for things just to pass you by and then, you realize the years have gone. And I think I'm more present now as a result. 

Claire: I was just wondering how it felt a relatively young age to find yourself in the world without any parents. Does that feel like quite a big step for you? 

Katie: When my mum died and, and you know, I didn't have parents left at all. It felt like a huge shift. I felt like I needed to do a very significant piece of growing up and it didn't happen straight away. In fact, it took me a few years and I made quite heavy weather of it, but there was a sense in me of, I kind of need to grow up now. And that has been a very, very positive thing, but it was painful and I do, I do notice, you know, most, most of my friends, most people my age are in a phase now where they're having to think about things that maybe I was thinking about twenty years ago or so. I have a great sense of relief that I don't need to do that again. And I also have a real compassion for people who find themselves in that position of carer or starting to feel more responsible, particularly in that kind of sandwich position of, of having different people to look after. 

I think I've gained enormously from the experience. It's really shaped me in ways that haven't always been easy, but I'm grateful for.

 I don't have such a strong sense of family as before. But I guess you find that in different ways, don't you? And I have a very strong sense of community and friendship, so and also, I, you know, I have my own boys and a lot of energy and joy goes into that relationship. 

I've had some fantastic support from a lot of people over the years, but I think really what I needed to learn was to ask for help more and also not to try and be superhuman. And how many of us did that thing of trying to carry things all by ourselves? And how many of us feel like, you know, that sense of duty I should do this, and in many cases I'll martyr myself in order to do what I think is the right thing. But, it's all too easy to end up in a place of quiet resentment. And I think I did that a lot and I don't think it was actually the kindest thing to do. I think if I had my time over, I would ask for a lot more help and I'd try not to put myself at the center of everything in the way that I did, because I don't think it really was the best thing to have done for any of us. But I didn't learn that lesson until I lived my way through it. 

Claire: That was actually sort of what I was going to ask really, is if you could go back and just give yourself a piece of advice, either just before you started everything, you know, you went through those hard times, or after, what would you, what would you say to kind of give yourself some encouragement to get through it?

Katie: Just to be a bit kinder, to myself. The thing I didn't know then that I do know now is it, if you want to be really kind to other people, you need to start with yourself. Like so many of us, have learned that back to front, we think we can give it all away without tending to our own needs. And that does lead to that resentment, to that martyring, to that passive aggression, to all of those kinds of not very nice places we can go to. And I really didn't know that it was okay to look after myself, to ask for what I needed. To be compassionate when I got things wrong. I didn't know that. And that that's such an important lesson I think, because now I know to take care of myself and that means I'm actually so much nicer to everybody else.

I wish, I wish I could have told myself that and actually listened to it, but when I was nineteen. 

Claire: Did you ever ask yourself why? Why did it happen to me? Why have I been through this? 

Katie: I don't know that I did. But I quite like making meaning out of things. So I quite like the idea that it was the perfect combination of things to happen for me to learn the things I need to learn. And I would never say that anyone else should approach things that way, but for me, I get some comfort. 

Chis: One of the things that, just to come back to something you said at the very start, was just how sort of every three or five years that there was some sort of fairly big challenge, and that continued through your teenage years, young adult years. And I think he said if I remember correctly that it was only sort of a few years ago, now that there was a real breakthrough. Is there anything just briefly about that, whatever that real breakthrough was, or how you came to that point, just for your own sake, to actually be able to free yourself from what had been a lot of, a lot of very difficult episodes, what that breakthrough looked like? 

Katie: Well the breakthrough came through a breakdown. I had a massive breakdown five years ago and I attempted suicide. And at that point I was completely hopeless. But what came from that was that I started to learn self-compassion I started to learn how to manage my emotions, and I got really curious about what it meant to be a sane and healthy human being, cos I didn't feel I'd really ever been that. And since that journey began, I've been increasingly well, so I've not relapsed at all, which is the first time in my life that I haven't had any episodes of depression or anxiety or any of the other things that I ended up being diagnosed with. Things are really massively different now, in all parts of my life. And I think that, you know, the crucial learning was what I said just now it was about the kindness. It's about the self compassion. And I now work with lots of people who struggle with similar patterns of behavior. And that seems to be the piece that, that is in common. That when people are berating themselves and belittling themselves and shaming themselves on the inside, as loads of us have learned to do, for all kinds of good reasons, it's just really hard to make your way in the world. It's really hard to be well. It seems like the simplest thing to be able to just switch that around and be nice to yourself. And actually, it's such a big challenge for lots of us. But somehow I found a way to start doing that differently, and that's why I'm still here, and that's why I love the work that I do, because I know why it matters.

Claire: If you could give somebody who's just facing a parent with a diagnosis of Alzheimer's or dementia one piece of advice or a bit of encouragement, what would be the main thing you think that really helped you through that sort of diagnosis?

Katie: I think to summon up all of the kindness and all of the support that you can, and if you're struggling to do that, because you think you don't deserve it and you should be putting all your energy into looking after the other person, know that by doing that for yourself, you'll be helping the other person to have the best experience too.

So really don't be afraid to ask for help. And, know that if you're grieving it doesn't matter whether anybody else can recognize the fact that you're grieving, and it's a long drawn out process, know that you're allowed to feel exactly what you're feeling, and you're entitled to get support and care for yourself because it can be a long old road and it's worth pacing yourself and taking good care.

Chis: I guess it's a very similar theme in the areas that you work now, when you're supporting and working with people that have got challenges of their own, that you're using similar techniques and similar learnings of your own in terms of kindness and taking that time to, to share that with others as well. Are there any other techniques just with those that may have mental health challenges, that you found particularly helpful, or ways to speak about it with people to find that help, has there been anything just in that regard today? 

Katie: Something people often find helpful is when they are able to notice that the way that they're speaking to themselves and treating themselves on the inside, isn't how they would speak to or treat anybody else on the outside. Often we don't see that. So we're good at being really lovely to other people and giving out and being infinitely understanding. And yet when we get something wrong or we're struggling, that's not the kind of message that we give ourselves, you know, we tend to say, oh you're, you're making a fuss about nothing, or you should try harder, or all of those things. And you know, if it was your friend who came to you and said, 'Hey, I'm feeling really upset because I think my dad's got dementia' or 'I'm struggling with my mood'. or whatever it is, most people wouldn't in a million years speak to somebody else the way that they speak to themselves. So sometimes if you can imagine that you're actually talking to a friend and you think, what would I say to them? It gives you some insight into what would be reasonable to say to yourself, and you can maybe get some, some help from that, but simply noticing the disconnect, like why is it I'm talking to myself like that? And I wouldn't talk to anybody else like that. Sometimes that in itself is, is enough just to create a little bit of space for self compassion.

Claire: Yeah, I think that's really true. I think I've found that sometimes in the early days of finding out that we couldn't have children, I remember thinking if someone else had told me this, it would feel huge. I would be like, oh my word, you know, that's awful. And I'd really see their life and see how it would have changed and what a big deal it was. But for me, or for us, it, it felt like something you just had to get over or you just had to get on with it, or that's just what we have, so let's find a way to make the best of it and let's find a way to be positive about it, and there were people in worse situations, so let's just get on with life and try not to be sad about this or that. And it's weird, it is odd to stop and think to yourself, why would I tell someone else it's such a big deal and they need to be kind to themselves, and I can't do it to myself? It's an odd thing, but it's so powerful. I think you're right. Such an important thing to be able to recognize. 

Katie: If there were another thing it's to know that you're allowed to feel what you're feeling. Because how many of us have got used to the idea that we should suppress things like we should suppress anger, we should suppress our sadness, you know, do it just deal with it it's not that bad, like you were saying just now, Claire, oh, you know, just get on with it, be positive, all this squashing down of things. But emotions don't just disappear because you squash them down. And even though it's, counter-intuitive, like actually allowing yourself to feel what you're feeling, naming, what you're feeling and being compassionate for that is incredibly powerful, but it's kind of the opposite of what most of us grew up learning to do. 

Chis: And that's your Herman!

Katie: *Laughs* Thank you.

Claire: Name what you're feeling, and feel what you're feeling. What are you feeling at the moment? Frustrated, angry, sad, disappointed, guilty, betrayed, disillusioned, let down. All these feelings have the power to affect, not only our relationships with others, but also with ourselves. Something that we can sometimes forget. 

We'd encourage you to take a few moments, just to name what you're feeling and let yourself feel it, maybe work out why, so you can be kinder to yourself and start that journey of understanding and ultimately healing. 

Chis: Thank you, Katie, for sharing such wisdom and insight and your experience into a journey a lot of people will go through with their parents, or maybe people are fearful of facing with their parents in the future. 

Claire: We've found there's some real motivation in hearing from people on the other side of things that we're going through, or things that we might fear, to show us that there is life after loss, it doesn't have to be as bad as you might fear it is. 

Chis: As Katie mentioned, she birthed Little Challenges from a time of crisis and you can find that more about it, and her podcast, and her social media, as well as practical tools to help, on her website, which is littlechallenges.com. We'll also add links to all of this and more in the show notes.

Claire: Thank you for listening to The Silent Why, we're releasing a new episode every week on a different subject of loss and next week, we're actually sharing our story and experience of loss in the area of childlessness. 

I'm also releasing a weekly My Why episode based on a blog from our website. 

Chis: All this and more on thesilentwhy.com, our website or social media search for -@thesilentwhypod. And if you want to get in touch, we'd love to hear from you, email thesilentwhy@gmail.com.

Claire: And today we want to finish with the wise words of Elisabeth Kübler-Ross, a psychiatrist and pioneer whose theory on the five stages of grief led to the Kübler-Ross Model.

"People are like stained glass windows, they sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light from within."

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