Episode 17: Sandwich caring with rachel pears

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:01

Okay Rina, you seem stressed. What's going on?

Rina Teslica 0:05

Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.

Lauren Fenton 0:20

Ah, yes, you should try the new Hibi app.

Rina Teslica 0:25

An app?

Lauren Fenton 0:26

Not just any app, it's disabled. Parrington mega pa organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place?

Rina Teslica 0:40

Hang on. spell this out to me again.

Lauren Fenton 0:42

Hibi H I B I It's a disabled parenting organisation app. I wish I'd had it when he was younger. It gives me a sense of control over well, the uncontrollable.

Rina Teslica 0:55

Sounds intriguing. Who doesn't want to organise disabled parenting chaos? One notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick Side kicking the shit out of Disabled Parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren.

Lauren Fenton 1:12

Yeah okay, fair enough. They won't want it. But if you like Rina, and I want to give it a go, you can download Hibi for free on the app store now.

Lauren Fenton 1:28

Since recording this episode, Rachel's father has sadly passed. Our love and heartfelt condolences to Rachel and her whole family. Please do visit dementia uk If you would like to make a donation in his memory.

Rina Teslica 1:48

Today, we're talking to Rachel pears on sandwich caring and the challenges that she's faced as an only child, when both her parents began to get older and more frail. At the same time as that her daughter was also being diagnosed with a genetic condition.

Lauren Fenton 2:04

Yeah, she really got catapulted into being this carer for three people, which as she described it, was extremely challenging. And it led to her actually having proper carer burnout. It really got me thinking about how much we will have similar potential challenges coming down the line, they talk about the sandwich generation of parents of dependent children who also then look after ailing or elderly parents. And, you know, in our case, those dependent children are going to be dependent beyond childhood and have needs for much longer. So it something that we probably if we're not already dealing with probably have to prepare ourselves for I'm definitely guilty of wanting to take on too much, mostly because I'm a total control freak. And I want to be in control of everything. So I think the some of the things that we talked about with Rachel, like asking for help and thinking about ourselves in that scenario is quite key.

Rina Teslica 3:07

Yeah, agree. It was really interesting. And it made me think about my own mum and my mother in law, actually, because both of them have parents who are getting to that stage where, you know, they're needing more help. But with the added pressure of not living in the UK, and then that has an impact on my life, because both of them I rely on for respite and babysitting duties and things really, really interesting. And I didn't look at it as sandwich caring until a conversation with Rachel. Yeah. And other people do it so automatically without actually realising what it is that they're doing.

Lauren Fenton 3:44

They don't... some people don't define it as caring I guess. And traditionally people would look after family it's like that's that's what you do you look after the old as they get older and you look after the children. I think it just as often is the case. There's this additional intensity and this additional dimension when the care needs of your children or your dependents or are so significant. We also look after Patrick's mum, occasionally we are not by any means her like primary carer that's done by his brother and sister in Ireland but she has dementia and has needs full time carers and we have her over for like a fortnight at a time and take on that Karen responsibility which isn't it's not easy, like managing somebody elderly full time and then also having your children tick to care for and look after it. But then there is overlap and parallels

Rina Teslica 4:41

Well it's that Benjamin Button thing isn't it like they revert back to those childish needs? It's yeah, the circle of life.

Lauren Fenton 4:49

We definitely have I guess built some skills that will help us with that. I feel like the the organisation the thinking about accessibility when you go places like with demand issue as well, I guess like managing where somebody needs to go and being in familiar surroundings and all of those kinds of things that are very relevant when you're looking after a child with certain needs is like whether we can find hours more time in the day. That's another matter.

Rina Teslica 5:16

What I really liked from the episode is Rachel making we realise that self care doesn't have to be like a specific carved out time of the day or the week or whatever. It could be just finding little joys in life, you know, small things, listening to a piece of music, or like Rachel does, making sure that she has a slice of pizza from my favourite pizza store. We forget to do the little things. Our eyes are constantly looking at the bigger picture and not living in the moment.

Lauren Fenton 5:46

Yeah, I agree.

Rina Teslica 5:49

It was a really eye opening conversation. Enjoy.

Lauren Fenton 6:11

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica 6:19

I'm Rina, and I'm Lauren. And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and chat about the things that we've learned and are still learning.

Rina Teslica 6:35

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language and quite frankly some brutal honesty.

Rina Teslica 6:54

Because really what the fuck is normal anyway?

Rina Teslica 7:10

Our guest today is Rachel Pears who is originally from New York, but has been in the UK for more than 20 years now. She is an employment lawyer who works as a head of responsible business for RPC, a commercial city law firm, as well as the firm's in house employment council. She's mother to almost nine year old Amelia and lives in London with her husband, Amelia dad, Peter, Amelia has a mutation on her gene ARHGEF9. And with this has learning disabilities, autism, low muscle tone, hypotonia and hypermobility.

Lauren Fenton 7:43

Six years ago, when Amelia was three, and Rachel was seeking a diagnosis for her, she faced another significant curveball in her life, her father became ill with cancer and dementia. And as if that wasn't shocking and challenging enough having those two parallel diagnoses going on her mother, younger than her father, whom she had thought healthier of the two and able to care for her father received a diagnosis of Parkinson's disease. And as their only child, Rachel was catapulted into finding ways to care for both her ailing parents remotely, making regular us trips at the very same time as coming to terms with their daughter's diagnosis and caring for her in the UK. In Rachel's own words, she felt like she was competing in the caring Olympics. She eventually and fortuitously took the decision to move her parents into her home just before COVID, lockdown struck, and has now established a team of helpers in the USA to make this work. But as Rachel would describe, it hasn't always been so smooth, and it's taken a long time to get there. So Hi, Rachel. Hi there competing in the caring Olympics. How is How is everything going for you at the moment? How's Amelia?

Rachel Pears 9:02

Yeah, it's like competing in the Olympics. But somebody tells you the day before you're competing in the Olympics.

Lauren Fenton 9:09

Yeah, you haven't got the training!

Rachel Pears 9:12

Yeah, thank you for having me. I'm well, thanks. And Amelia is really good. She's. I feel like she gets sort of funnier and cheekier and more imaginative every day. Yeah, she's she's absolutely amazing. She's currently into Barbie and games on her iPad. Hide and Seek because there's a big favourite, and usually kind of acting out pretend stories usually involving her being a pop star.

Rina Teslica 9:42

Nice. I love that. I love that, Living my inner inner childhood dreams. Absolutely. Amazing.

Lauren Fenton 9:50

Doyou get to be a backup singer or eh?

Rina Teslica 9:53

Or do you just watch?

Rachel Pears 9:55

I mean, I try and follow the steps but usually I get them wrong. Um, but yeah, sometimes I'm security, you know, I take different roles.

Rina Teslica 10:06

I love that

Lauren Fenton 10:09

Very much like life.

Rachel Pears 10:10

Yes.

Lauren Fenton 10:13

Can we just step back and get the context and the timeline? So what first kind of made you feel like you needed to do these investigations for Amelia, take us through that as well as then what happened with your parents?

Rachel Pears 10:27

Of course, so you try not to compare your child to others, but you know, the other babies around kind of nine months, you know, you start to notice they're becoming much more physical, they can start to crawl and, and some of them were even sort of totaling around. And she just seemed to really struggle. I mean, she wasn't remotely kind of crawling, hated, tummy time isn't standing. And I went back to the GP a number of times, probably about four or five times to say, I'm, I'm concerned, I think there's something that's not quite right. And each time I got fobbed off as a sort of Tiger mummy, you know, like, "calm down, you're just to new neurotic mother, you know, they all develop at different rates." But I just sort of had this feeling in my gut that it there was something not quite right. And, I mean, I had no idea what it was, but obviously, you know, I wanted to try and find a way to support her. It wasn't until her 12 month Health Visitor check, actually that that catapulted us into the worlds of the NHS and all of the investigations because she scored a zero out of 60 on her gross motor skills test and in that development check, that was actually just after the health visitor suggested that any developmental delays might have been my fault that stimulated.

Lauren Fenton 11:49

We hear this so much. It's terrible.

Rachel Pears 11:52

Yeah.

Lauren Fenton 11:53

you feel like you've failed the test.

Rachel Pears 11:55

Definitely on me. Yeah, yeah. So yeah, so we got referred to a community paediatrician again, I just sort of thought my husband and I both think sort of just thought like, oh, well, my mother used to be a ballet dancer. So I thought, oh, maybe she's just a bit hypermobile. She'll just be really flexible. Go on to be a ballerina. Prima ballerina. Yeah. And we were quite surprised at that. First, paediatricians appointment, because then, the paediatrician sort of reeled off a whole list of quite terrifying sounding conditions that it sort of could be. We didn't have any sort of feeling like it might at any point be that serious, I think we've kind of gone in thinking, Oh, she might need a bit of light physio, you know, and they just are like, Well, it could be this, it could be that and you're like, oh, okay, that's brand new information.

Rina Teslica 12:51

So you did feel kind of like blindsided by her potential diagnosis.

Rachel Pears 12:56

I think that was quite a shock. Because, yeah, you sort of get thrust into, especially when you get into the sort of, like, sort of, say, like, the upper echelons of the NHS, when you're seeing like, the big celebrity type doctors who are, you know, they come in with their teams of people, and they're all very intimidating. You just never really expect to be there to sort of

Lauren Fenton 13:18

Gold card membership!

Rachel Pears 13:21

So yeah, you get you get sort of to see people whose job titles you didn't even know kind of existed. But yeah, we did the usual sort of, you know, all the all the investigations, or the tests, lots of speech and physiotherapy and all different things, and then finally got the referred to the genetic side of things. And that's when they discovered her mutation.

Rachel Pears 13:44

Yeah, then, then it's fun, because then you get to Google what it is, which is like reading another language. Good. Oh, Google. I know! In Amelia's case, it's quite rare condition. It doesn't have a bit of sort of official name. We're on a sort of Facebook group with other families around the world, which is quite fascinating. And it is a mutation on the X chromosome, so it tends to affect boys more severely than girls. And yeah, causes sort of a number of challenges.

Lauren Fenton 14:16

Processing and going through all of this, as we all know, is a very difficult time in our lives, just that that curveball and not quite how you saw your journey of parenthood working out. So then when what happened at this period in your life related to your parents?

Rachel Pears 14:34

So urm my mother actually had Parkinson's diagnosed for my father, but it was very mild and so it wasn't really that debilitating, I would say for a number of years. So she was really active in her retirement and actually really, like on the ball in terms of all the sort of self care you're meant to do. So for Parkinson's Um, it's a neurological condition. And it's known sort of traditionally through the tremor as the sort of most commonly, I think identified side effects. But it affects everything I mean speech and movement and thinking and swallowing, and all different kinds of things. But she was doing all the right things to do lots of exercise, lots of kind of Mediterranean diets, all sorts.

My dad then had a fall and fractured a vertebrae in his spine, and was then sort of bed bound for about nine months kind of recovering from that, from that break. And I think that was probably when his health really started to deteriorate. And the symptoms of his dementia sort of started to surface. And at the time, we didn't know it was managed to, but we definitely could tell there was some difficult and challenging behaviours emerging. And so slowly, my mom wound up having to kind of drop all of her personal care, to sort of care for him, I was travelling back and forth to try and bring in sort of different aides and resources and things to help and, you know, trying to kind of patch things up. But inevitably, kind of, then come home. And, you know, a month later, it's moved on again. And so you need to go back and kind of address the latest, the latest sort of situation, it was starting to be a bit of a juggle, I would say, as my dad wound up, struggling more and more, and then and then my mom stopped doing all the things that you do to kind of keep it Parkinson's under control,

Lauren Fenton 16:39

Gosh, then what happened with your parents?

Rachel Pears 16:42

So then yeah, my dad wound up having a number of falls after that he was quite weak and unsteady on his feet and, and one fall in particular, led to him breaking his hip. And that was kind of the crisis point, I suppose, where he wound up in hospital, he had to have an emergency hip replacement. And I think, from what I understand with with people who have dementia, as soon as you kind of take them out of their familiar surroundings, they stop being able to kind of fake it. So he was completely discombobulated, you know, new surroundings, busy hospital, general anaesthetic doesn't really do great things for people on the older end of the spectrum. So yeah, he couldn't hide his dementia anymore. It was it was quite clear. So he, he never returned home, he went, went to rehab. And, and my parents had six months apart, which they found really difficult.

Rina Teslica 17:43

What was that? Like? I mean, I think for us, as parents of special needs, when you get your initial diagnosis, it can be incredibly overwhelming, but then to have not only that, but then also be dealing with your parents.

Rachel Pears 17:58

It's funny, because when I think when you're in it, you just sort of like, well, this is just my life. So I'll just sort of try and make the best of, you know, a difficult time. And obviously, I didn't know, sort of, at that time how long it was going to go on for or kind of what what we were dealing with. I mean, Amelia, we were probably, you know, doing investigations for her for about two years before we had a diagnosis. So part of my parents journey was sort of overlapping with Amelia is, you know, kind of investigations and therapies rather than kind of having a diagnosis. So it was sort of a bit of a sort of slow burner, in a way because it was, you know, as I said, is a bit of an evolution and so probably helps get your brain wrapped around what's going on. That being said, it has been quite intense at times, definitely I was before COVID, flying back and forth to New York, probably every month or two, and trying to do lots of appointments for Amelia and trying to get to kind of the bottom of some of the things we were seeing with her and trying to hold down a full time job.

Rina Teslica 19:17

But yeah, forgot about that one.

Rachel Pears 19:20

There were a few hats being being swapped quickly around. So yeah, it was it was definitely a very overwhelming time.

Rina Teslica 19:29

What was your employer like, at that time, because I feel sometimes they can be really, really understanding and other times not so.

Rachel Pears 19:37

I have been incredibly lucky actually. So my firm and my kind of immediate manager have both been really brilliant, really flexible, really supportive and kind of empathetic and gave me the space and the trust to kind of work how I needed to work. So if I needed to kind of go to a hospital appointment or if I needed to kind of go to New York for a long weekend or something I just worked as I needed to. And if anything, it made me want to work harder to sort of show that they're trust in me wasn't sort of mislaid. And you know, it's kind of really proved that it was fine. And I could manage it, I just needed to sort of have a bit of space at certain times. I was just so incredibly grateful, because it felt like quite a vulnerable time for me when I was sort of having to juggle lots of different things that, frankly, you can't deprioritize they're your family. So that's actually been a really positive?

Rina Teslica 20:37

Was it your decision to put them in the care home? Or was that something that your mother and you decided on? Or was that pressure from the doctors? How does that work? How did you come to that decision?

Rachel Pears 20:53

So just before the end of 2019, my mum took the decision to move into a care home with my dad, he went into the memory care unit, which is a sort of secure unit for people with dementia, and she has a sort of assisted living apartment, the floor above where she has aides who help her with her daily needs. I I've always sort of tried to take, you know, a sort of supportive backseat with them. So I try and be as respectful as possible of their independence and their decision making, I never want to kind of go in and be like, right, this is how it's going to be done. I know best. It was my my mum who found it really difficult. She was in the apartment. In New York alone, dad was in this rehab place, she was finding it really exhausting travelling out to see him regularly. He was struggling without her. It's actually a very beautiful love story. So it was actually her decision. And I kind of helped as much as I could, in terms of, you know, scoping out possible care homes in the area, and, you know, visiting them with her.

Rina Teslica 22:05

That does make it slightly easier. Yeah.

Lauren Fenton 22:06

I mean, so you're processing things at either end of the spectrum. And I just can't imagine what that must have been like, definitely feel when you have a child, any child, when you have children, you start to it starts to bring in to focus your parental relationships, and you reflect back on how your parents brought you up and your child state and all the rest of it, obviously, there's there's a whole different kind of light potentially shone on that with erm, a child that has a disability. And likewise, as your parents are getting older and unwell, it must have felt like quite a period of huge change in terms of sense of loss around your parents as well. And that will obviously make one reflect. So you're doing these things, which really bring kind of focus to your parental relationships. How was that? Does it feel like similar things in part were happening in parallel?

Rachel Pears 22:59

I mean, yeah, things are definitely happening in parallel, there were definitely some kind of common themes. It sort of felt like I was just jumping from here, there and everywhere. To be honest, it felt quite frantic. That's kind of my strongest memory of it back then. Especially because with my parents, it always felt like on the edge of a crisis at any moment, because that, you know, their, their needs were increasing. And especially with with my dad, he was having so many falls and his behaviour was challenging. We were having to call ambulances weekly, pretty much before he had his big fall. So it always felt like it was sort of living on the edge really not kind of in a fun way. But it was yeah, a lot of a lot of limbo as well, I would say was one of the common themes. I mean, I found Amelia's diagnosis actually quite liberating, because I finally knew what I was feeling all along, which was that there wasn't, you know something that was the same as the other children. That's no bad thing. But it's, you know, you sort of don't know what you don't know until you know, and so actually, I found the diagnosis actually really reassuring and relaxing in a way because I felt, okay, now I know what we're dealing with cool. We can make a plan and you know, I don't I don't do well, I think with the unknowns and the grey area, the grey space. And you know, you always sort of go to catastrophizing the worst possible scenarios, when actually it's never like that really.

Rina Teslica 24:38

You felt vindicated.

Rachel Pears 24:39

Yeah, so I mean, and my parents were kind of similar in terms of, you know, you just never really quite knew what was next. No one can really tell you what, what's going to happen tomorrow or in a month's time or you know, what the best thing is, one of the challenges of being an only child is that as they wound up being less able to make decisions for themselves that fell more onto my shoulders, which is the I'd see it as a huge responsibility, you know, you want to kind of do right by your parents and, you know, even in the end of life should be as, hopefully as joyful and kind of happy as possible. And obviously, that becomes more challenging as you have health conditions. But yeah, you want to kind of do the right thing. So it's hard because you're kind of on your own trying to navigate all those things in your head.

Lauren Fenton 25:36

Did you define yourself as a carer? Or do you define yourself as a carer for Amelia as well as your parents?

Rachel Pears 25:45

Yeah, I probably do. I think I mean, I, I certainly care for Yeah, I think everyone really, I mean, Amelia, hopefully will go on to care for me one day. And bring me lots of martinis in my old age. But But yeah, my parents, I mean, I manage all of their affairs. I'm power of attorney and, you know, everything kind of is, sits with me now pretty much. And of course, I, you know, defer to them as and when I can do and it's appropriate and safe to but yeah,

Lauren Fenton 26:18

yeah, struck me just when you were talking about making sure that your parents, you know, that you didn't march in and just kind of make the decisions. It's obviously when you're caring for a child, it's quite different, because then their capacity to make those decisions at a young age, like any child has is very, very limited. But it's obviously as Amelia gets older, it's almost like then you start to think about their autonomy and their decision making in that process. So I guess you've experienced that already with your parents. And a lot of us may may also experience that at the other end of the spectrum. It must have been incredibly hard to prioritise everybody's different needs. How... when you had to travel back and forth to the states, what was the impact on Amelia of you having to do that?

Rachel Pears 27:02

That, that was probably that's probably been the hardest piece of it. I mean, aside from obviously, you know, the emotional piece of coming to terms with your parents ageing, and becoming unwell, of course, is, is super hard. But but the travel was was tough. I'd love to be in two places or more at the same time. And so the inability to not be able to kind of split myself into two or clone myself was was a real sort of difficulty, I think. Because, you know, I would love to be in New York more and be with my parents more and be able to support them in real life IRL. But yeah, every time I travel, it's really hard on Amelia and me, I miss her terribly. And you know, and I know she, she finds that difficult when I'm when I'm gone for periods of time. And so you do always just feel like, you're never quite doing enough in any particular place. You're sort of spread too thin. And I know. Yeah, I'm sure lots of people feel like that. It's even just working and parenting. And you know, it's that classic parent guilt, isn't it? Where you sort of want to be in two places at once. But this was sort of wanting to be in three or more, so yeah, that's been the hardest. I mean, not you know, and not to mention, it's just really tiring, travelling, internationally that regularly with the time difference and then working and yeah, I was doing some pretty brutal, like, sort of 8pm flights back to New York, where you landed 11pm. It feels like five in the morning, you've got three days to kind of run around, get a million things done. And then I catch a red eye flight back and work the next day, and it's just absolutely exhausting.

Rina Teslica 27:19

Oh, my God.

Rina Teslica 28:25

That is horrible. It sounds like you. You talked about before you liked you don't like grey area and expected you'd like a plan. It sounds like you had to kind of well, you must have had to organise the shit out of things to make things work. Is that it? Was that a coping mechanism to kind of throw yourself into like you maybe have done in a work scenario?

Rachel Pears 29:17

Yeah, definitely. I mean, probably to my detriment a little bit. I think I've probably used being really busy is almost a crutch and a coping strategy. So, you know, it's really difficult, especially when it goes on for a long period of time. You can't you can't just constantly be emoting. You know, it's sort of, you sort of have to kind of get quite good at compartmentalising things just so you can get through your day and do what you need to do. And so I think that's been a challenge in terms of doing that in a measured way so that you still are processing some of what you're feeling is at the same time as sort of trying to kind of get things done. And, you know, certainly with my parents I've inherited two other people's personal admin, which I mean is crazy, because I can barely keep on top of my own. But, you know, so there is logistical stuff that you know, and it is busy that you have to do but, but yeah, I definitely use busyness I think as a way to kind of not have to deal with things and and then that just kind of led to me burning out really trying to burn the candle at every possible end. Some of us perfectionist kind of control freaks. You know, they're like, I'm gonna do, I'm gonna do caring really, really well. I'm gonna be the best at caring. And

Lauren Fenton 30:43

You were competing in a lot of events. So you know, you had a good chance that that gold medal was

Rachel Pears 30:51

What is the sport where you do like 10 different in athletics, is it the decathalon?

Lauren Fenton 30:57

Decathlon, triathlon? Yeah, yeah yeah.

Rina Teslica 31:00

A millionathalon?

Rachel Pears 31:01

Yeah, I've pretty much just spinning a lot of sites. So yeah, I think it's a slippery slope. You have to I mean, busy is good and can help. And it is just realistically busy, but I think you have to kind of keep an eye on it as well, because it can also it can start driving you rather than the other way around. Yeah.

Rina Teslica 31:23

Did you get to a point where you just realised I can't, I can't do this anymore. I need some help. Like, what was the the light bulb moment? Was it something that had happened, you know, in terms of Amilia's care, or your parents? But was there a moment in that period where you were like, I've had enough, I cannot physically be in a million places, I cannot keep spinning these plates.

Rachel Pears 31:48

I had a period of burnout, which I mean, I didn't sort of it wasn't like me making a decision about it. I probably should have done earlier. But yeah, that was probably my body just being like, No, thank you. We're done now. So I yeah, I took three weeks off of work, work, were really nice about it, and really supportive. And I just tried to spend that time. I did a lot of therapy. And I did a lot of running and just tried to kind of really focus on getting myself a little bit clearer in my head around how I was going to deal with all of this. And you know, and part of that is talking about practicalities of care, and help and, you know, hacks around how to make things easier, find shortcuts and things. And part of it is actually and I did this obviously, with the help of the therapists, but kind of finding ways to give yourself a bit more compassion and permission to not do everything, to the best possible degree all the time, because it's frankly, impossible. So, you know, just kind of getting happy with things being good enough sometimes and that's okay. Because you're just one person.

Lauren Fenton 33:05

Yeah, there's the giving yourself compassion and a break. There's also recognising the emotional turmoil that and processing that so it sounds like that you were so head on in the I'm gonna care the shit out of everything and deal with everything in a like uber organised way that you didn't maybe gave yourself space for processing what was going on both ends of the spectrum,

Rachel Pears 33:35

No. Definitely I didn't and I mean, you know, it's, it's not a comfortable you know, it's an uncomfortable place to be, it's not like you really want to sit around and process feelings of, you know, grief and whatever else. But, you know, you kind of have to and, and certainly, you know, as as, I mean, as you watch parents get older and kind of come sort of more of an end of life stage. You know, it's it's something that's, unfortunately a kind of inevitability about having to kind of cope with with that stage of things. And it is it's, it's tough, but I think it's gonna come whether you're open to it or not, so you kind of have to just get there however, you can see, you can't really go around it.

Rina Teslica 34:31

Yeah, it's, it's hard because parents of disabled children, not only are you grieving your parents getting older and that inevitability of death on that end, but you're also grieving I certainly did, grieving the life that you had imagined that you would have as a mother because it's been thrown in the furnace and burned because it's just not what you had imagined at all. So there, you must have been going through two different types of grief at the same time, which must have been so incredibly overwhelming, absolutely,

Rachel Pears 35:06

You sort of, you know, you visit certain things for life is like, right when I'm this age, I'll have these things and I'll have this this relationship, you know, whatever. And certainly, as a parent, you never want any barriers or hurdles put in your child's way you want the world to be their oyster, you want them to have every door open as a child, you know, with your parents, having to sort of flip the roles and become parents to your parents is not, it's not a natural place to be, and it's uncomfortable as well. There's sort of, yeah, you definitely kind of feel a sort of loss as well, in terms of, you know, I mean, I think my mom would have loved to have more time as a grandmother, with Amelia which I feel really sad for. For both of them. Frankly, we're missing that time. So yeah, there's a lot of things that you know, this what it is, but it's not what you pictured.

Lauren Fenton 36:10

What's the relationship, like between Amelia ano,

Rachel Pears 36:13

um, so the last time we were all there, she was there with us was in 2019. So actually, we went over for my father's birthday, when he was in hospital recovering from his hip replacement. Yeah, so she was there. She was four and then COVID hit. She hasn't been back since. But hopefully, we'll we'll get back again soon. I mean, my dad's not so great with tech anymore. But with my mom, we still FaceTime and, you know, try and do the odd virtual dance party. So. So yeah, they have. Yeah, she knows she knows and loves her grandma. So

Lauren Fenton 36:57

Beautiful. I mean, it's just, it was just reminding me, my story is very, very different to yours. But my husband's mum so my mother in law has dementia. And every so often, she comes to stay with us, and we take on the care so that it's not all falling to his brother and sister. And one of the things that I find quite beautiful when she's here is she's in the moment, of course, because her short term memory is shot. So it's, you know, everything is kind of the here and now or reminiscing about a long, long time ago. And as adults, I think we find that quite hard to you know, remember in conversation and not go into that short term memory but but with Bea her life is 100% in the moment as well, you know, it's like right now. So the way that they interact, it's, it's actually rather beautiful. It's just, you know, they don't necessarily understand each other all the time. But it's, it's just filled with love and in moment fun, which is, is a good lesson for us all I guess.

Rachel Pears 37:55

I mean, some of the sort of some of the flip side of it, I think is you get a glimpse into, like this totally alternative universe. And certainly like, you know, when you get a diagnosis for your child, I have learned so much more about all sorts of aspects of her world that I had no clue about, and now I'm better for it. And similarly, you know, you get to, I think, celebrate different things. So it's not, I think, and I'm trying to look at it in a, it's not less, it's different. So it's, you know, I look at my parents, like, my dad's not really particularly verbal anymore. But he and my mum sometimes go to concerts together at their care home, and they just hold hands, and like smile at each other and it's literally the sweetest thing you've ever seen. But, you know, you almost kind of don't need much more than that always. Sometimes you can just have quite a beautiful moment in something really small. The purest moment. Yeah, it's really pure absolute. They, you know, they just see each other and you can see, like, you know, my dad doesn't remember much at all, but he remembers my mum still in his face lights up when he sees her and it's just like, Oh, come on, guys. You're making us feel bad!

Lauren Fenton 39:24

The body feels what the mind can't necessarily process. That's amazing. Absolutely, yeah. And how are things Now you sound like in a much better place than obviously things?

Rachel Pears 39:37

Yes, definitely. I'm out of limbo a little bit more, which is a happy place for me. Yeah, Amelia is doing great. She's the light of my life and absolutely just incredible and such a strong little character. I love it. So yeah, it's great kind of watching her grow and experience the world. And my parents. I mean, you know, it's sort of beautiful and sad, I guess. So. Yeah, my dad's now in hospice care. And he's still kind of stable. But there's a bit of limbo there still, because you don't know what's coming next, we don't really know how much longer he has. So, yeah, just trying to kind of go back over a little bit more at the moment just to see him. But it feels like, I've kind of come to terms a bit more with the situation, it doesn't mean it's not sad anymore. But I kind of accept a little bit more of what's happened. I think as well, the relief too and I know they're in a good care home, so they have the care that they need, and that I know, they're safe. I know, they're healthy. I know, if there's an issue it's picked up, you know, all of those kinds of things are, are in hand. So that's a real reassurance for me.

Rachel Pears 41:04

What about you?

Rachel Pears 41:08

Who?! Kidding.

Rina Teslica 41:10

How have you managed to find space for yourself? And how have you been able to delegate? What to kind of let go off but not not let go of but pass up that baton of responsibility to somebody else.

Rachel Pears 41:25

I think there's truth in like, it takes a village, both I think on any end of the caring spectrum. Obviously, in this kind of global world we're living in, you know, we don't have our usual home village anymore. So you kind of have to, like, befriend a village, pay for a village or, you know, beg for a village or whatever you need to do. But you need to find your little, your little crew. So yeah, I mean, in New York, like there's some very practical logistical challenges that I have that I need help with. So you know, I can't, I can't be there to open their mail. I can't be there to go to the drugstore and fill a prescription. It's incredibly complicated when I you know, if we need to make a doctor's appointment, and you have to arrange transport, and you have to arrange an escort, and you have to arrange a million different things. So I have people in New York who can help me with that. Some are friends, and some are people who I've hired. And, yeah, I mean, you just, there's literally no way you could do it all yourself. And I think that that acknowledgement is the starting point. Otherwise, I mean, I just I think I've gotten better over the years through trial and error, probably, at trying to prioritise you know, my own, like, it's, it's a cliche, of course, but you know, you can't, you absolutely cannot pour from an empty cup. And you, it's essential to care for yourself when you're caring for other people. So it's not a selfish act. It's, it's just a necessity, and it's something that makes you more able to be a carer. So I do try and prioritise things, I have a wonderfully supportive husband, which I'm very lucky to have he and I share the load and juggle and so if I want to go and do a run or whatever, then you know we we share that?

Lauren Fenton 43:30

Has it been an impact on work going forward?

Rachel Pears 43:32

I work four days a week now. So I've dropped today. So I try and almost compartmentalise the admin, the New York admin is my New York admin day. And, and that's that day, and then I don't have to kind of think about it the rest of the week.

Rina Teslica 43:51

So Rachel through all that having experienced so much, is there anything that you have learnt or wish that you had known or some insight that you might be able to pass on to somebody who's going through something similar to you?

Rachel Pears 44:06

Yeah, definitely. And obviously, I put a big caveat on that because I recognise fully that I'm coming from a place of privilege in terms of, you know, the fact that I have a supportive employer and I have a supportive husband and I have the ability to sometimes hire the help that I need if I need it. So take it all with a pinch of salt. It's just my kind of personal experience, but for anybody kind of organisation as you kind of mentioned earlier is is really essential. And even like the really kind of boring bit, you know, like with parents, you know, get estate documents in order, get your powers of attorney done, you know, if there's DNR s or health proxy forms, take copies of like important ID and insurance cards or anything like that, because I found that you know, all of a sudden I was having to make decisions on things and sometimes you need people's details.

Lauren Fenton 44:24

That's so true

Rina Teslica 44:28

So practical.

Rachel Pears 45:06

It's very practical. Yeah.

Lauren Fenton 45:10

I guess on the other end of the spectrum with Amelia and with our children, we were setting all of that stuff up from scratch from day dot, you know, seeing a different version of being a carer coming down the other end of the line, it's really important,

Rachel Pears 45:22

I'm sure lots of parents, I mean, even, you know, lots of parents of neurotypical children do probably have pull files and folders of their kids, you know, of all the different sort of categories of of their child's you know, like important documents, they've got medical things, they've got, you know, activities, all sorts of things. And it's, it's kind of similar, but maybe a little bit more depressing with estate planning and do not resuscitate orders. But, you know, it's sort of the same principle in terms of just you know, having having stuffs to hand before you actually are in a place of really needing it. Because that's been really helpful. And it was a bit of advice that a family friend gave me and she was absolutely right. I think as well like talk to friends, or other family or neighbours, or whoever you can kind of before it is a crisis situation and kind of scope out who's willing to help and how they can help because I think it's better to know who you can call on before you're actually in a moment where you're just frantic and or, you know, there's sort of not enough time or whatever else, I think it's better to kind of have your phone a friends kind of identified earlier. On both sides of the spectrum. I think caring is often pretty synonymous with advocacy. And so expect to have to battle and question and push and follow up. You know, you always do, no matter who you're looking after have to sort of stay on top of all the detail and one step ahead. So you know, you're constantly pushing things forward.

Lauren Fenton 47:03

What about for...

Rachel Pears 47:04

for me?

Lauren Fenton 47:05

Yeah, What about you? looking after yourself?

Rachel Pears 47:09

I was coming to that. Yeah, I think carve out time for yourself, however you can. And I think I mean, what I've learned actually, on this journey, is try and be a bit more kind of conscious or mindful are like, sort of specific around where you can find something enjoyable. And I know that's not always possible, but like, I mean, when I go back to New York, you know, sometimes it's it's really difficult trip, but I always make sure I go to my favourite pizza place. And I know it's like a really small thing, but I really enjoy their pizza. Just for like, that. 10, 15 minutes when I'm there. I'm just it's just quite pleasing and happy. So,

Rina Teslica 47:56

you live in the moment, so you don't think about anything else.

Rachel Pears 47:59

Exactly, yeah, find that little bit of joy somewhere,

Lauren Fenton 48:03

Self care's the pizza you like,

Rachel Pears 48:06

Absolutely. Sometimes is just a really cheesy pizza. Whatever it is, find the sort of things that can make it a little bit more enjoyable. And sometimes it's more just having an appreciation for someone sometimes having a joke with somebody and just have, you know, just be really kind of almost present and cognizant of that moment. I just went back to New York, in the end of November. And, you know, it was a really hard trip. It was the first time I saw my dad after he had been moved into hospice care, but we just had a really nice smile at each other and even just that I was like, I'm just kind of take a kind of real picture of this in my head. So I can go back to it in future and doesn't negate the difficulty of the trip. But it's just a nice other side of it. And I think expect people to surprise you in all different ways. Sometimes people will, who you expect won't will possibly disappoint you. But other people really amazingly rise to the occasion and are like you're essentially new village and your new family. Sometimes people won't understand sometimes people will ask really silly questions. Sometimes people feel totally uncomfortable. And there's sort of a whole range of responses that you kind of have to get used to responding to and that might be the new normal and that's kind of okay, you know, you have to sort of just evolve with it and roll with it. But I think it's key to sort of know who your people are who kind of show up

Lauren Fenton 49:38

Yeah, yeah, amen. That's that's that's so true, gosh you've been through a lot and still going through a lot and I'm I really appreciate you coming on the fucking normal and you know, sharing with such candour your experience and that emotional. Oh, I don't like to use the word journey but that emotional path that you have found yourself on, so thank you. It's been really lovely chatting and I will next time do it over a few beers either you come north London a week I'm in South London we need to make this work.

Rina Teslica 50:11

Yes we do

Rachel Pears 50:14

Thank you so much for having me

Rina Teslica 50:15

Amazing but before we go as we always end the podcast with a fucking normal so Rachel piers WHAT IS YOUR FUCKING normal?

Rachel Pears 50:26

So my fucking normal so I think I alluded to this at the beginning of our conversation but I mentioned that Amelia is currently loving being a pop star at the moment. And and so my f**king normal is most mornings on the way to school when we kind of park the car and walk to school. I have to pretend to be a security guard and have to make sure I'm rolling out the red carpet and throwing rose petals for her and managing the paparazzi and managing your overzealous fans who are looking for an autograph. So that is currently my fking normal.

Lauren Fenton 51:06

That's brilliant. I look forward to her first her debut album.

Rachel Pears 51:12

We all do. It's in production.

Lauren Fenton 51:15

Gorgeous. Thank you so much.

Rachel Pears 51:19

Thank you.

Rina Teslica 51:20

Thank you.

Lauren Fenton 51:20

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica 51:41

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 52:04

So thanks so much for listening all the way to the end. We'll see you next time.

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