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SoWhoCaresAnyway E37 Everyone’s Something - Is Something · SoWhoCaresAnyway

• 0:04
  Welcome to So Who Cares.
• 0:06
  Anyway, a fortnightly podcast exploring stories that shape care community and the systems we live in.
• 0:12
  I'm Ruth Germaine, and in each episode I'm joined by my guests, people from behind clinical doors to the North York malls, whose experiences open a window into how we care for one another.
• 0:24
  Together, we explore care through creativity, connection, and the strengths we already hold.
• 0:31
  Because care isn't small.
• 0:32
  Care isn't soft care shapes the world, so who cares? Anyway, it's time to talk about it.
• 0:42
  Hi, it's Ruth here and today's story is about generosity and it's absolutely powerful.
• 0:49
  I'm speaking with Tom Jetson, who's a carer for his 16-year-old son, and he really shares what caring looks like behind closed doors.
• 0:57
  And this is something that we all need to know about and understand is happening with Tom and many other people.
• 1:04
  So take a listen to the end and hear about the superpowers.
• 1:10
  Hi, and welcome to the next episode of Sue.
• 1:12
  Who cares? Anyway, and today I'm being joined.
• 1:15
  I'm delighted to be joined by Tom Jetson, who we've just had a little pre-chat.
• 1:19
  I know he is in a great mood, really up for today.
• 1:22
  So that's brilliant to hear.
• 1:23
  Tom.
• 1:24
  Um, and I was introduced to you, Tom Drew Martin Whis.
• 1:27
  The mastering is my podcast ed editor, so if he doesn't wanna be mentioned, I'm sure he'll let his name out.
• 1:33
  But I, I think it's absolutely fine.
• 1:35
  Um, and Martin just said to me.
• 1:38
  I said, I'm just looking for more people that are doing things in their community or doing things out of, um, a background that is, is driven to that.
• 1:45
  So not particularly just clinicians, but other people that are doing care work as well, or do work because they care, because that's essentially what I'm exploring.
• 1:53
  So I'm gonna come over to you, Tom, so you can tell us a little bit more about who you are and what it is that you are doing in the first instance, please.
• 2:00
  Absolutely.
• 2:01
  My pleasure and thank you, Martin for making this introduction.
• 2:05
  Please don't edit your name, I'm sure we won't.
• 2:07
  Uh, no.
• 2:08
  Um, okay.
• 2:09
  Well, yes.
• 2:09
  My name is Tom Jepson.
• 2:11
  I am a full-time carer, uh, a fuller time parent and also an accredited coach.
• 2:18
  So I.
• 2:19
  I, uh, lean very heavily into people oriented things when it comes to work.
• 2:26
  Um, and I'm sure we'll get there in a few minutes, but it's very heavily driven by the life that I lead, uh, as a parent and carer.
• 2:34
  So yeah, we are.
• 2:35
  Thank you, Tom.
• 2:36
  And I think you're sort of ready really to move into that next bit, but being polite, you've, you've stopped to let me talk.
• 2:43
  Really what really interested me, me, um, when I spoke to you before, 'cause obviously we premit to have a little chat about this, was the fact that actually your coaching and the work that you are doing is really driven by the fact that obviously you are a carer, which you've mentioned.
• 2:58
  So I wonder if you want to give a little bit more about.
• 3:01
  What it is that you are doing, just, just briefly as a, as a coach so people can understand that work, and then talk about what drove you to that, which probably brings us perhaps into a bit more of your personal story, if that's okay.
• 3:14
  Absolutely.
• 3:15
  Uh, let us dive in with both things.
• 3:17
  Go on.
• 3:17
  So, coaching my position as a coach, I've actually changed very recently.
• 3:24
  Um, I had a little shift over the Christmas period and uh, I am.
• 3:31
  Refocusing my energy to, to a sort of an, a subset of the people I was working with before.
• 3:37
  So broadly speaking, I work with grownups who are at a transitional period in their life.
• 3:46
  Um, as a parent and as a carer, I know that new chapters come and go very quickly and.
• 4:00
  I would like to work with people who are maybe finding themselves at an inflection point or in the thick of something challenging, and to really understand who they are within that space, and then do some work for themselves to get friendly with themselves again and understand who they are and what they want.
• 4:27
  Because we only have one life.
• 4:29
  It is very short, contextually speaking.
• 4:33
  And when we've got a whole bunch of very challenging stuff going on, why would anybody let themselves, uh, live in a place where they're not really comfortable with who they are and what they're doing? I know that sounds quite pointy.
• 4:54
  Um, and I'm not pointy in my coaching at all.
• 4:57
  I'm, uh, I'm very gentle with it, but realistically I just wanna see people living a great life and doing stuff that matters to them so that everything else that rolls on around them kind of feels a little bit more like water off a duck's back.
• 5:13
  You said some really poignant things there, or you called them pointy things.
• 5:17
  Um.
• 5:19
  But I wouldn't agree.
• 5:20
  I think they are quite, quite poignant rather than pointy.
• 5:25
  Um, because, you know, why, why would anybody want to live? Can't remember the rest of it uncomfortably or not, not feeling themselves.
• 5:34
  Um, you know, and, and living a great life, sort of having that purpose or something.
• 5:39
  But what I'm thinking is that immediately, and probably for listeners as well, what's coming to mind is there's a lot of people at a lot of different points where they've got that, if you like, that inflection.
• 5:49
  So you spoke at the beginning about that transition period, but actually that could be a many people.
• 5:57
  In many scenarios.
• 5:58
  So it could be work related, it could be something about their, their individual identity.
• 6:04
  It could be all sorts of things.
• 6:07
  You know, that's just two coming off the top of my head.
• 6:09
  So I'm just wondering if you've got sort of any particular area that, that you are thinking of focusing or that you're trying to focus on.
• 6:16
  You know, what is it that that's coming up in with the people that you're meeting? Naturally trying to pinpoint a specific thing on which I coach is very difficult.
• 6:27
  I've always found it very difficult because individuals are by their very nature individual, but the byline with which I kind of run is that I'd like people to enjoy midlife without the crisis.
• 6:44
  So whether it is, we mentioned work.
• 6:49
  Whether they've got a bit of an a dissatisfying job and they feel in themselves that the skills they have or, uh, the thing that they want to offer to the world isn't best suited for the work they're doing, we can work through that.
• 7:05
  We.
• 7:06
  Maybe it is that they've got a side hustle that is actually igniting more of their fire than the work they do day to day or the world of professional identity that they've built around themselves.
• 7:19
  We can work through that and we can see what we can do together to make it a little bit more real, a bit more tangible.
• 7:26
  You know, maybe they are a parent.
• 7:30
  Who has older children or have kids that's just left home and now they're left in a place of, well, who the heck am I right now? Because a certain area of responsibility has been lifted.
• 7:42
  Maybe they are a person who has suffered a more traumatic life experience.
• 7:53
  I'm gonna say divorce because that's the first thing that popped into my head as a traumatic life experience.
• 7:59
  Um.
• 8:00
  But maybe there is something around that where they find themselves at a crossroads or even at the beginning of an open playing field.
• 8:08
  That's something that's maybe a nicer metaphor.
• 8:12
  They're at the beginning of a, of a very open space, and they'd like to explore who they are and what really excites them.
• 8:23
  There kind of aren't any limitations other than I'd like you to live.
• 8:29
  This new chapter without feeling like you're in a position of crisis.
• 8:33
  That sounds, um, broad still, but actually in the same way.
• 8:38
  It's not because it's, it's a viewpoint of actually you're at a point.
• 8:43
  Let's help you move to the next one.
• 8:44
  Let, let's move on.
• 8:46
  How can I, how can I help and support you to get there? So I'm gonna go to that, back to that other piece of the question.
• 8:52
  'cause I think you've said that really ni nicely and I like the, the things that you've brought up there, because I think everybody can relate to that or think of something similar that's, that's perhaps happened and thought Yeah.
• 9:02
  You know, I'm immediately thinking, oh, that would've been helpful then, or when, or whenever.
• 9:06
  Um, but the other bit is, and the, I suppose the important bit for me is what.
• 9:12
  What was your driver for this? You've spoken about the fact that you are, you are a parent, but particularly that you're a full-time carer.
• 9:18
  So what is your driver that that's brought you to this point? And I presume it's come from that background as a carer and a parent.
• 9:25
  Yeah, absolutely.
• 9:26
  It has.
• 9:27
  So to paint the full picture, um, professionally, I used to be employed.
• 9:34
  I was, uh, my background is in, uh, designing things for websites and the like.
• 9:39
  Um, and for a very long time I was kind of employed in that space.
• 9:43
  Um, uh.
• 9:45
  My son, uh, is the person who I care for as his carer, as well as his dad, obviously.
• 9:53
  Uh, he's 16 years old and he has an ultra rare genetic condition.
• 9:59
  It's called BAN, which is, uh, beta propeller protein associated neuro neurodegeneration rolls off the tongue.
• 10:08
  Um, uh, it, it's so rare.
• 10:11
  Like I, I can't even begin to, to kind of consider the number of people in the world, especially boys who have this condition.
• 10:20
  Uh, it's not many.
• 10:22
  Um, we didn't find out that he had this specific condition, uh, till 2014.
• 10:28
  Uh, 2014.
• 10:29
  2024.
• 10:30
  We had a phone call on the 2nd of January from his geneticist.
• 10:37
  Um, and we had been on this journey.
• 10:41
  Of the genetics exploration since 2014.
• 10:46
  Um, we didn't even know that he had conditions outside of the norm until he was two and a half.
• 10:55
  Um, and immediately at that point when he was two and a half and, and we had more appointments to go to, we had, um, additional provisions to support him.
• 11:07
  My work, my life, my wife's work, my wife's life collective lives changed dramatically.
• 11:16
  Um, I remember being employed and having to take all my annual leave, um, over the course of months just to take him out to a support center in Nottingham where I live.
• 11:31
  Uh, every Tuesday morning for a couple of hours to go and help him out and to get his body moving and to get him, you know, learning in ways that the traditional school environment couldn't provide.
• 11:42
  And ever since that, I have realized, and I have grown into the fact that my life and my routines are non-traditional.
• 11:57
  They're dynamic, they are challenging, they are uncomfortable sometimes, but taking the learning from that, I've designed a life and a, a professional life that supports the life I lead.
• 12:20
  I have to lead as a carer and a parent, so.
• 12:26
  About seven years ago, I took the leap into self-employment.
• 12:31
  It was inevitable, um, not only because of the life we have, uh, uh, being parents and carers, but because I couldn't suffer being employed anymore.
• 12:43
  That's probably a story for another day, maybe.
• 12:45
  I don't know.
• 12:45
  Um, but I knew that I couldn't fully engage and embrace being the carer.
• 12:55
  If I was working to somebody else's, uh, schedule, routine politic, it wouldn't happen.
• 13:04
  With all the flexibility in the world, there's always gonna be an overhead, like an umbrella of someone else's expectation, and I really couldn't handle that because I knew that my purpose and my role was bigger.
• 13:22
  It was somewhere else.
• 13:23
  So I went to work for myself.
• 13:26
  Um, I was designing things for people.
• 13:29
  Freelance designers at that time were sought after.
• 13:33
  It's a bit of a difficult landscape at the moment in the creative spaces.
• 13:37
  Um, but come the pandemic, I'm sure everyone's got a pandemic story to share, but come the pandemic.
• 13:46
  Um, my design work had kind of dried up.
• 13:50
  Obviously having two kids at home because I, I have two children.
• 13:53
  I've got, uh, a daughter who's nine as well.
• 13:56
  Um, having two children at home, having very little work, I was in a contemplative space, uh, refocusing my energy on, on just being as present as I could be for them.
• 14:11
  And it got me thinking about what I do as a professional.
• 14:15
  Um, a good friend of mine.
• 14:18
  His partner is a highly regarded corporate coach and they came over for a, for a cup of tea when we were allowed to meet people together.
• 14:30
  Um, and we got talking about coaching and what it is, what it does.
• 14:35
  And it turns out that throughout my career in the design space, my focus really has been on serving people and.
• 14:45
  Ensuring that the outcomes of my work, that the relationships I forge and the people who I have in teams, everything on that front is cared for and dealt with in a way which is.
• 15:03
  Human first.
• 15:04
  And it turns out that that's what coaches do.
• 15:07
  They support people in that way.
• 15:09
  They help them learn, help them grow, help them understand them.
• 15:14
  Individuals better, help the individual understand themselves better.
• 15:19
  And I kind of thought, well, okay, if that's the thread, let's explore it.
• 15:25
  So explore, I did.
• 15:27
  I went and trained with a fantastic mentor coach.
• 15:33
  Uh, her name is Riley.
• 15:36
  She lives in the us.
• 15:36
  She's brilliant.
• 15:37
  She got me through my, uh, certification and for the last four and a half, five years I've been practicing as a coach to help people understand themselves better.
• 15:53
  Because I had to go on that journey too to understand who I was better and really acknowledge and embrace the fact that whatever scenarios I might wiggle myself into, professionally, personally, whatever, there is always going to be a bigger driver and a bigger thing that needs my attention.
• 16:24
  The other stuff then just becomes actually way easier.
• 16:27
  And I'd like to carry that forward to other people that, you know, life around them can be easier when you just focus in the places that need your attention.
• 16:40
  And here we are today, 2026, and I'm going, all right.
• 16:45
  I kind of think I found my, found my groove.
• 16:48
  Brilliant.
• 16:49
  It kind of is.
• 16:50
  It is.
• 16:51
  And it it, it's a long story Tom, really, that you've just given.
• 16:56
  So it's, I I'm sure it's a very potted version.
• 16:59
  'cause we've gone from the fact that you have 16-year-old son and at two and a half was when you first knew there was something.
• 17:07
  But actually if my calculation's right, he was 14 when you finally found out.
• 17:12
  What it was that he had.
• 17:13
  Yeah.
• 17:13
  And this is an incredibly rare condition.
• 17:15
  So the help and support and coming to terms with that, you know, and fixing that all in your life, I'm sure must have been, must have been huge.
• 17:25
  You know, I say fixing it.
• 17:26
  How, how does that work on a day-to-day basis? What do you need to do and what you spoke about, how you couldn't.
• 17:33
  Be employed, you couldn't suffer being employed.
• 17:35
  So a lot of people probably feel that bit and you said that's another story.
• 17:39
  But actually part of that is the same bit as what you then said is you couldn't embrace being a carer whilst you were employed.
• 17:47
  And actually I think that's a, a real important message to anybody, employees, anyone.
• 17:52
  You know, we all talk about, oh, carers allowance and time off for carers and things like this, but actually.
• 17:58
  If you are a carer, there are certain things that you have to do and we hear so many people coming out of the, of the workforce and leaving and hopefully doing something self-employed, but maybe not because they have to care that it's almost, it isn't a choice.
• 18:15
  I mean, given the choice, you would probably choose to do it.
• 18:17
  This is your son, you love him, you care for him.
• 18:19
  Of course, you would do it.
• 18:21
  However, it's sort of not a choice because.
• 18:25
  It has to be done.
• 18:26
  So it's slightly different when you become a carer.
• 18:29
  So I think there's a huge bit around that.
• 18:31
  That employment bit.
• 18:32
  And I wonder if you can just sort of, for people listening, because obviously we don't really know, you know, I, you know, I'm a nurse by background.
• 18:40
  I certainly haven't heard of this condition.
• 18:42
  There's, there's multiple conditions like this that are incredibly rare.
• 18:45
  So I wonder if you could give us a bit more idea, if you don't mind, of, of what your day might look like and, and how the restrictions of being employed.
• 18:55
  Affected that, both in how you managed it day to day, and also how you felt, so how you managed it, if you like, mentally.
• 19:04
  Absolutely.
• 19:05
  I mean, it's a, it's, it's a great question and certainly something that we need to talk about, uh, now and more broadly as a, you know, society.
• 19:14
  So we'll look at day to day first was the first thing that pops into my head, so.
• 19:21
  I mentioned before about designing, you know, life around this role, um, that was intentional.
• 19:28
  I am growing into my intention as an individual, uh, you know, mid forties.
• 19:34
  I'm, I think I'm now entitled to say this is the stuff that I do and that's okay.
• 19:39
  So, um, I am up with the locks.
• 19:44
  Generally.
• 19:46
  I get up when my son gets up.
• 19:50
  If it's five o'clock, it's five o'clock, we're good to go.
• 19:52
  If it's later, brilliant, we get a little bit of a lion, but I'm up.
• 19:57
  So his condition, BAN, it in him, it presents that he cannot walk.
• 20:05
  Uh, he is nonverbal.
• 20:07
  Throw epilepsy into the mix as well.
• 20:09
  You know, you've got a melting pot of challenges.
• 20:13
  I'm up and I am helping him to the bathroom.
• 20:18
  I'm helping him get dressed.
• 20:20
  I am helping him access his breakfast.
• 20:24
  I'm administering his daily medication.
• 20:27
  I'm getting him ready for school.
• 20:28
  I'm getting him out onto the school bus.
• 20:30
  And then at that point, when that sort of two hours-ish routine is done, I'm then focusing on my daughter who I can then get her ready for the date and then get her to school.
• 20:45
  And at that point, it's almost 9:00 AM in the morning, and then my day can begin.
• 20:49
  And I, I will just want to kind of preface all of this with, uh, my wife works in a school and we have designed our lives that way so that she can go and support the kids that she supports in her way.
• 21:05
  So this isn't, I, I, I'm always very aware that I'm saying I do this, I do that.
• 21:10
  This is a partnership.
• 21:12
  Yeah.
• 21:12
  And we have created it in a way that we can both do the things we need to do.
• 21:16
  Okay.
• 21:16
  I just wanted just, just to put that out there because she's incredible and she's very supportive of all the stuff that I do professionally and we've kind of engineered this life around that.
• 21:25
  So I get stuck in with the hands-on Carey stuff, early doors up to about 9:00 AM Both kids are out Golden.
• 21:37
  Um, my day rolls on.
• 21:40
  Then come three o'clock my day finishes because I'm back out up to the school, go and pick up one of the kids.
• 21:47
  Got about an hour with her and then my son comes home and at that point it is all hands on deck.
• 21:54
  It is off the bus, it is coats off.
• 21:58
  It's getting him out of his wheelchair, it's getting him to the bathroom.
• 22:03
  You know, if cleanup needs to happen, cleanup needs to happen, you know, all the, uh, less desirable jobs that people don't talk about, it gets pretty gross sometimes, especially, you know, 16-year-old boys, they stink.
• 22:15
  Um, so once he's back home, you know, our life together, it's kind of like the doors shut and then we are in it as a team.
• 22:25
  And we're doing stuff together.
• 22:27
  We're getting tea ready, we're playing games, watching a bit of tv, whatever.
• 22:32
  And then we're into bedtime routines.
• 22:34
  You know, I'm there doing a shower in toileting meds, dressing for bed into bed, and then my day half seven-ish can kind of end.
• 22:48
  It's very hands-on.
• 22:50
  It's seven days a week, and.
• 22:54
  You don't get holidays.
• 22:56
  Yeah.
• 22:58
  I'm very mindful of my own energy in this space.
• 23:05
  I, I kind of fluffed over the chunk between 9:00 AM and 3:00 PM Previously when I get down to work, I give myself four hours a day, so I give myself 10 till 12 and one till three.
• 23:21
  When I can get truly into my zone and I can coach in that time, I can do all the, on the business stuff, the marketing, the content, do my accounts, whatever.
• 23:34
  Join podcasts.
• 23:35
  Join podcasts.
• 23:37
  Abso flip.
• 23:38
  Absolutely.
• 23:39
  This, honestly, this is, this is one of the, the greatest gifts that I feel I've been given.
• 23:45
  I was talking to a friend about this the other day.
• 23:47
  I said like.
• 23:49
  If I was working a job, I wouldn't be able to sit down with them at one o'clock in the afternoon and have a cup of coffee and connect in a really meaningful way.
• 23:59
  So I feel like I've been given a gift.
• 24:01
  Oh, that's very generous of time.
• 24:03
  Seriously, I'm, I'm, I, you know, for all the, uh, poop, watch my language, uh, or, or the mess that life has thrown at us.
• 24:13
  I feel that I've genuinely, I've been given a bit of a gift when it comes to time, like.
• 24:18
  I'm sure it'll change at some point as adulthood fully kicks in and, you know, school dynamics change, whatever.
• 24:24
  But for now, I've got these four hours.
• 24:28
  Yes.
• 24:28
  And it's like, great.
• 24:29
  I can do whatever I need to do in that time.
• 24:32
  I can have a lovely chat with Ruth and we can, we can open, open some eyes to what this life is really like.
• 24:42
  I don't go at it with anything other than it's just there.
• 24:47
  The time is just there.
• 24:48
  I can do with it what I need to do with it.
• 24:51
  If I have a day when we've had a really, really bumpy start and touch wood, we haven't had one of those for a while, I know that I'm not gonna be in a great place to engage with the world because I need to recoup my energy.
• 25:06
  Yes, I need to get my head straight.
• 25:10
  Because I know that when 3:00 PM rolls around, I've gotta be back on it and best within the world.
• 25:16
  I've gotta be good.
• 25:18
  You know, everyone's entitled to a bad day.
• 25:21
  But for myself, I've gotta be good.
• 25:23
  I want to be able to show up as I need to show up to make sure that both kids with both their sets of needs are catered for.
• 25:32
  So if the day has started in a less than favorable way, I've got this gift of time where I can go, you know what? I'm gonna look after me for a couple of hours.
• 25:42
  Might play on the PlayStation, might watch a movie, might just go for a walk.
• 25:46
  But that gift of time that's been given through the non-negotiable of caring, it's uh, surprisingly excellent.
• 25:59
  It doesn't make running a business any easier.
• 26:00
  Sure.
• 26:01
  It's still excellent.
• 26:04
  This podcast is all about collective voices, so if you're enjoying it, please subscribe and share it across your networks, your friends, your family, your colleagues.
• 26:13
  This way we can amplify the voice, share the stories further, and it will help to keep the podcast going.
• 26:19
  Now back to the conversation.
• 26:24
  To swing around to the employment thing for a second.
• 26:27
  Um, I haven't been employed for a very long time.
• 26:29
  Like we, you know, we're coming up on probably eight years since I last had a quote unquote real job.
• 26:34
  And I know that for many people I.
• 26:37
  Uh, in a similar boat, they would say, well, I can't go and get another job.
• 26:41
  I'd be totally unemployable, and honestly, I could never go and get a job.
• 26:45
  I'd be totally unemployable.
• 26:47
  Um, because, uh, I've seen things, man, I've seen things I, I've lived, uh, in a way which has shown me that literally anything that, um, the workplace could put on my table.
• 27:05
  Uh, that isn't the job to be done.
• 27:06
  Obviously, if I was gonna go and get another job as a, a user experience designer, fine.
• 27:10
  The work would be good.
• 27:12
  But all the other stuff around it, you know, office politics, uh, processes, uh, team days out, all that kind of stuff is completely inconsequential to me.
• 27:23
  And I couldn't put myself into that space because literally none of it would mean anything to me because as there's something bigger at stake, um.
• 27:35
  I could never be on time for work because I have, I've got places to go and people to see, and things to do.
• 27:43
  I've gotta be up at a school, dropping a child off at nine o'clock in the morning.
• 27:46
  I can't be sat in a, in an office having commuted 45 minutes somewhere.
• 27:52
  It's not gonna happen.
• 27:53
  I can't work.
• 27:54
  You know, the cluster read 38 hours a week sat in someone else's space because I've got somewhere else to be.
• 28:03
  I've got people who need me to be there and without sounding too pigheaded about it or, you know, bloody minded, I don't, I don't owe anybody that time to go and work for somebody else when I know that it certainly would not serve.
• 28:23
  You know, aside from financially, money's important, aside from the finances, it wouldn't serve anything that I do day to day.
• 28:32
  You know, having been through the.
• 28:35
  Inflexible environments of work.
• 28:37
  I remember a time, uh, when uh, my son had a seizure and it ended him up in hospital.
• 28:45
  I couldn't show up for work on the day that it happened, but I was pulled into an office the following Monday, um, asked about it and then told that I could either take an unpaid day or I could take annual leave.
• 29:02
  To cover the day that I wasn't in the office because I was in hospital with a child who'd had a potentially life seizure.
• 29:09
  Can you imagine the thoughts that were going through my head in that moment? I can only begin to, they weren't very kind.
• 29:14
  I have to say that much for a lot of people.
• 29:18
  Um, uh, mercifully, I've.
• 29:20
  It does.
• 29:21
  Not to sound too coachy, but I've done the work, I've done some work on myself and I understand what I need from the world.
• 29:27
  I think for a lot of people, if they are in a similar boat as carers and they encounter something like that, it could be, you know, the straw.
• 29:35
  It could be like buckaroo stacking one more thing on top and they just explode road because somebody hasn't considered what their effects on this wonderful, caring human being has actually been.
• 29:49
  It kind of makes me a bit sad.
• 29:51
  That other people would go through it and just shoulder the extra burden when they've got enough already and, and it is bigger than that, Tom.
• 30:00
  I mean, it is incredibly sad.
• 30:01
  And you were saying you weren't thinking kind thoughts or it wasn't particularly kind what was in your head, but it, but it isn't kind and often.
• 30:08
  It's not always the individual people that isn't kind.
• 30:11
  It's the way society's set up.
• 30:13
  It's the way the employing organization is set up, and of course it's there to achieve whatever its individual aim is, whether that be healthcare, as I've well discovered working in the NHS because it's healthcare or whether that be in your case, I think it was, you know, media and.
• 30:30
  What you were doing.
• 30:31
  So, um, the system isn't set up to be kind and then the individuals don't behave kind in that.
• 30:37
  So to me it's sad because it's not only.
• 30:40
  The sadness of what that does to you as an individual.
• 30:45
  And you are obviously incredibly resilient or have to have had to become or find incredible resilience to go out there and say, what can I do on my own? How can I work on my own? And even doing that, you've reinvented that later on, which I'll come to in a second.
• 31:02
  Also, there's those other people who, you say you, you've likened this to a game of buckaroo, and actually for some people.
• 31:08
  That'll be the thing that, you know, it breaks the back suddenly that that camel or that donkey kicks and everything goes off.
• 31:16
  And for them everything falls apart and act.
• 31:19
  If we think about what you are doing, you are not only doing all of this for your team, your wife, your daughter, your son.
• 31:28
  Most importantly, you were doing this for.
• 31:32
  Society because we are, we live in a soci communities.
• 31:36
  We live in, you know, we live beyond families, in communities, in societies, in, in our, in our country, in the world.
• 31:43
  And actually every bit of care that everybody does matters.
• 31:49
  It matters.
• 31:51
  Absolutely.
• 31:52
  And it makes a difference to the soci, their family we live in, which makes a difference to our communities, our schools, the people around us, the places that we live, which make a difference to our much wider society, our countries, the world.
• 32:06
  So every single piece to me is an important part.
• 32:11
  In every single J in, in the bigger jigsaw of life, if you like.
• 32:15
  So to me, it isn't only sad, it's actually a real miss, a real mis misunderstanding by societies, by those organizations, by those systems, to not to just do that, you know, tokenistic, oh, you can have.
• 32:29
  You know, if you're lucky you work in somewhere like the NHS, you can have five days, you know, um, leave as a carer's leave.
• 32:36
  But if you're somewhere else, oh, you can take unpaid leave or you can take annual leave.
• 32:41
  Well, when you are working for them, where is that time that you've just really appreciated and said, I've got this time.
• 32:48
  How lucky am I? A lot of people looking on might not see that as lucky to have those two hours, but you've really taken that on.
• 32:56
  But when you're working from that for them.
• 32:58
  And you're working for someone else and they're taking away that time from you saying unpaid leave.
• 33:03
  Well, that's my bill to pay annual leave.
• 33:05
  Well, that's a time when I can either have downs time or spend time with my family or do whatever it is I'm supposed to do with my annual leave.
• 33:14
  Suddenly that's lost to you.
• 33:15
  So to me that is a real loss for society, um, and much bigger than you as an individual.
• 33:23
  Yeah, I'd agree.
• 33:25
  I'd agree.
• 33:25
  It, it extends way beyond the person, uh, because we we're, I said this is the royal we societal, we is always trying to build somebody else's thing and.
• 33:43
  When you have choice taken away from you and, uh, becoming a carer, which is something you can do at any point in your life, the same as you know, the, uh, disabled community is one of the only minorities in which you can join it at any part of your life.
• 34:04
  When you have that choice taken away from you, you've.
• 34:09
  You start to wonder what actually matters, and you kind of think, well, am I building somebody else's thing or do I need to now build my own? And if that means removing yourself from playing the game, from working nine to five in the.
• 34:30
  You know, flexible whatevers, you know, start when you want, finish when you want.
• 34:36
  You know, as long as you do all your work, there's still the overhead pressure of serving somebody else when actually the, the thing that matters is your care.
• 34:46
  So there are definitely bigger questions to ask and broader conversations to have, if only to help.
• 34:55
  Individuals understand that they're actually worth way more than society gives them credit for.
• 35:01
  And that's a really important message.
• 35:02
  Actually, no, we haven't got to the end, Tom, have we? But it's an important, it's an important message that every individual, and I suppose that's really what I was alluding to, but you've summed it up beautifully there.
• 35:15
  You know you are worth more than.
• 35:17
  Anybody in society has given you credit for Because actually without, without you doing everything that you do, then.
• 35:28
  Things could look at very different both for your son but for your family.
• 35:32
  But also you've said already quite generously that you know you're in this as a team and you've chosen that your wife still goes to work and, and works in the school.
• 35:41
  So that could change as well.
• 35:43
  And then if that was the change, then how would that school react? 'cause they might be able to employ someone else, but they might not.
• 35:48
  It's quite difficult nowadays to get people that are good.
• 35:50
  And I'm sure that your wife, from what you've said, she's amazing and she's, you know, she's with you and you've already got this open mindset and this open way of think bringing, thinking what she's bringing to that school and to those pupils.
• 36:03
  Is going to make, make a profound difference as well.
• 36:06
  So by you doing this and working as a team and as a family, the effects that are having that wider effect.
• 36:14
  Society and the care that you were providing, if it wasn't provided by you, would need to be provided by someone else, and nobody else would probably be able to do it in the same way as you are.
• 36:25
  And if they did, they would need time with you to be able to pass on that detail, to be able to say to them, this is what I do.
• 36:32
  This is why, this is how it works, this is why it matters.
• 36:35
  This is why doing whatever it is that you might do in this order is important.
• 36:42
  Because that makes a difference to my son.
• 36:44
  If I do it in this order.
• 36:45
  He understands it works.
• 36:47
  We have to do it in that order doesn't work only.
• 36:49
  Do you know those little, those little things that make that true difference? Yeah.
• 36:55
  The devil's in the detail, right? Yeah.
• 36:57
  And I mean, we are very fortunate when it comes to outside support.
• 37:02
  We do have.
• 37:03
  Respite care.
• 37:05
  We do have, uh, link work and the individuals who look after, uh, my son, I'm gonna stop saying my son, his name's Noah.
• 37:16
  He's an absolute legend.
• 37:18
  Um, people that look after Noah when we are not, they get him.
• 37:26
  And again, they are, they're in the same place.
• 37:28
  They are people who care, people who are carers, people who are empathetic and understand their place and their position, and what the things that they bring to the table really do for somebody.
• 37:45
  Like, again, it's time.
• 37:47
  Like every couple of weeks on a Saturday morning, we've got a brilliant support worker who'll take him out for.
• 37:56
  Four hours, which means then together we can spend time doing nothing.
• 38:01
  Yeah.
• 38:02
  You know, my wife and I can focus on doing stuff with the daughter because she has a non-traditional childhood.
• 38:11
  Of course, we try and make it as normal as we can, but it's not traditional.
• 38:15
  It's, you know, she's a registered young carer at nine years old.
• 38:19
  That's difficult in itself.
• 38:22
  So it's almost like we are.
• 38:24
  Fulfilling roles as parents, but also, and this was something that came out, a conversation I had with somebody the other day who has an only child, but you as a parent and also fulfill a role as a sibling as well because you are, you get to enact some of the childlike back and forth there isn't there in that family dynamic.
• 38:49
  So it's almost like we get to do that as well.
• 38:53
  As just be parents, which is just wild.
• 38:58
  So for everything that's difficult, there's always a little glimmer to be found of something stupid, fun and just a little gift, and it's really hard to see it when you're in the thick of seizure care, personal care, on the phone to the school again.
• 39:21
  Other more severe types of care, which I know people have to live with.
• 39:26
  You know, when you're looking at palliative care and talking in end of life stuff, we're not there.
• 39:34
  And I know that other people have to deal with that.
• 39:36
  And when you are still trying to live for yourself within that, God damn, that's really hard.
• 39:45
  Just that energy, the energy alone to get you through that barrier.
• 39:51
  People will go, oh, how do you, how do you stay so upbeat? How do you, how are you? You know? And I'm just like, 'cause I ain't got a choice.
• 40:00
  Life has actually been made easier for me because a lot of choices has been taken away so I can go and focus on other stuff.
• 40:09
  I can focus on things that I actually really want to do because I haven't got a choice.
• 40:15
  In other areas, there are things I have to do, which shuts a door on certain other activities like traditional employment for one, but that means myriad, other doors are open.
• 40:32
  Just gotta remember that I can go through them.
• 40:35
  Other people can remember for themselves that they just need to go through them.
• 40:40
  You say you haven't got a choice, but I suppose your choices are restricted.
• 40:45
  And your choices have perhaps changed, and perhaps you've seen some choices that you didn't see before.
• 40:51
  But one of our choices is actually how we perceive things.
• 40:56
  And you have, I suppose, chosen to perceive this in what people might call an upbeat way.
• 41:03
  I'm not to say that people who aren't doing that.
• 41:07
  Um, choosing that, you know, that I don't want that to come across in that way, but, but actually for you, that, that was a choice and it wasn't an easy one.
• 41:16
  And I'm sure it's not easy, and I'm sure there's times when you grapple with it, maybe on a daily basis, maybe not, uh, you know, without knowing you anymore till I can't say, but it must be something where, as you say, there must be times when you are, oh gosh, you know.
• 41:29
  Here we go again, and this is hard and this isn't easy, but actually you've chosen to see that time that you have as a positive.
• 41:37
  You've just said there's always a glimmer of something to be found.
• 41:41
  So you've chosen to find those glimmers and you've chosen to do that.
• 41:46
  I just want to go back before, before we, um, end, 'cause we talked a bit at the beginning about the work that you're doing now as a counselor.
• 41:54
  You were talking about when you first went into that coaching role and you spoke to somebody and you suddenly realized that everything you were doing, actually, you were always doing it there to help you, were always wanting to support people.
• 42:07
  And I just found that fascinating as we've been talking because you've gone into that, which is, you know, that is that call, isn't it? Actually, I can do something.
• 42:14
  I can make a difference.
• 42:15
  I can help people.
• 42:16
  So here you are as somebody who is daily having to get up and go through.
• 42:23
  Doing things to get things done because those things need doing and you do them out of love, that's quite obvious.
• 42:31
  But you still do them because they have to be done and suddenly you're saying, I can help other people too.
• 42:38
  And that's incredible.
• 42:41
  And I just wondered if you could tell me a bit more about it.
• 42:44
  I don't wanna ask a specific question because I don't wanna narrow you down, but just a bit more about where and why that comes from.
• 42:53
  That's a good question.
• 42:54
  And just as you were speaking, my, my little, my little thought hamsters were running wild.
• 43:00
  I could see, and I was thinking back, yeah.
• 43:02
  There were going, there, were going, uh, this is a, an audio medium, but yes, you could, you could see that the hamsters running.
• 43:08
  I was thinking back to the moment when I knew things would change.
• 43:16
  We went to.
• 43:21
  Uh, a brilliant establishment that was at that time called School for Parents in Nottingham.
• 43:27
  Uh, it's now called Footprints and it's a conductive education center where the workers there help families really get to grips with the challenges they're facing.
• 43:41
  You know, all kinds of, uh, difference in disability, whether it's, uh, cognitive, physical, whatever.
• 43:49
  And I was just, just thinking, you know, putting two and two together.
• 43:52
  But the job at the, I had at the time, which was not in any people management, leadership.
• 43:59
  Coachy anything.
• 44:00
  I was a, uh, I was writing internal communications memos for a retailer, completely different life.
• 44:09
  But up to that point, the work was kind of one sided.
• 44:14
  It was just kind of output, but it was, it was work output.
• 44:18
  It wasn't people output.
• 44:20
  There was no real human anything in it.
• 44:25
  But when.
• 44:27
  I started to move through this journey of care, becoming a carer a slow, it was a slow ramp up.
• 44:35
  It wasn't like, oh, you're a carer now.
• 44:37
  It was a slow ramp up to it, but every choice that I made professionally after that point had to serve the greater need had to the first thing I ever introduced myself as, as a full-time carer.
• 44:56
  I, I, I, I think I have done for more years than I could remember, but I made that part of my identity.
• 45:06
  It wasn't something that I did, it was the person I am.
• 45:13
  And the more I moved through the professional spaces that I've been in, that person has come to the fore.
• 45:22
  And it's kind of like a, a, a dam.
• 45:27
  You open that floodgate, you start letting the water through.
• 45:31
  You're not stopping it.
• 45:33
  I can't turn it off.
• 45:35
  If I, you know, I, I will try.
• 45:39
  I get, I get told every now and again at home that don't, don't put your coaching hat on here.
• 45:43
  It's like, no, I won't put my coaching hat on here.
• 45:45
  And I'll always say this to people.
• 45:46
  It's like, I, I, I'm not gonna give you unsolicited coaching, but I'm interested in the person.
• 45:53
  And the more teams I've worked with, the more individuals I've worked with, you know, as a freelancer, the more agencies I've worked with, I'm just interested in the people, the dynamics they've got going on.
• 46:04
  And it all builds up just to a professional role of service to people, but also a personal identity as somebody who serves.
• 46:16
  So there isn't really a division, it's just who I am.
• 46:20
  I can hear that coming through and, and you are quite incredible and what you do.
• 46:28
  What you do sha today, and the way that you handle that and the way that you manage that is incredible and admirable.
• 46:36
  You know, I, I'm, I'm sitting here in awe of everything that you've told me today, Tom.
• 46:40
  So yeah, thank you for doing what you do on behalf of me, on behalf of the listeners, on behalf of your family, but thank you because it is so, so important what you are doing and goes beyond what you're doing for your family.
• 46:55
  I mean, thank you.
• 46:56
  I really appreciate, I appreciate it.
• 46:58
  I, I, I do.
• 46:59
  It feels very strange to say well, you know, to, to, to be thankful.
• 47:03
  To be thankful this thing, but I, I, you know, in, in it, I hope that other people realize too that they, they do something super important too.
• 47:14
  Yeah.
• 47:14
  Super important and incredible.
• 47:16
  It's super important.
• 47:17
  It is that, it, it's, it's like, it's super.
• 47:19
  I, I wrote, uh, an article a while back about superpowers of carers.
• 47:24
  Um, and there are so many little things that you tune into that you wouldn't think you would tune into.
• 47:34
  You know, listening on multiple different planes all at once, being resilient when you get bopped in the face because someone's having a tantrum.
• 47:46
  That really hurts.
• 47:47
  Yeah.
• 47:47
  Just to say that it really hurts.
• 47:50
  Um, you know, the frustration when you're having to deal with an outside influence, 'cause a lot of this stems down to the things that we can control versus the things that we can't.
• 48:01
  And when you're having to deal with pharmacies, for example, when medicine's gone wrong, it's an external influence and you have to learn.
• 48:09
  The skill to be resilient to that stuff so that the stuff that's inside doesn't get affected too much.
• 48:17
  So carers are superheroes.
• 48:22
  I would absolutely agree.
• 48:24
  And I'm just gonna ask, is that um, a public article? 'cause if it is, maybe we can put a link in the show notes along with footprints.
• 48:33
  I'll make sure as well.
• 48:34
  Yeah, absolutely.
• 48:35
  I will make sure that all the links are in the show notes.
• 48:38
  Okay.
• 48:38
  Uh, um, because there's so much to be explored and so much to be seen and heard and read and shared, so thank you.
• 48:46
  So as we come to an end, I just want to ask Tom, have you got a final message or something that you'd like to say and share with our listeners today? We spoke about this before and I've tried not to hold anything too hard as we've been talking, but.
• 49:05
  Two things.
• 49:07
  The first one is that everyone's something is something.
• 49:11
  I am in a position of challenge a lot of the time.
• 49:15
  Life is very difficult.
• 49:17
  I know so many incredible people, foster carers.
• 49:25
  Other carers, uh uh, uh, you know, dealing with family members and day to day they face challenges different to mine.
• 49:33
  You might say they're less challenging.
• 49:35
  More challenging, but it's still challenging.
• 49:40
  Everybody's something is something, and if you can remember that and engage with people on a human level.
• 49:50
  Regardless of what challenge they're facing, you know, taking your cat to the vet versus taking your kid to hospital, it's still something and it just helps the connection between people.
• 50:01
  Of course, it's incredibly generous, but I can see that it helps that connection.
• 50:07
  It does.
• 50:08
  And you know, what is life, if not a series of connections? And this, this is, is my sign off? Okay.
• 50:18
  But you are enough.
• 50:21
  The things you do are enough.
• 50:25
  The work you do day to day, if you are self-employed, if you are employed wherever you get to at the end of your day, that's enough.
• 50:35
  Sometimes getting outta bed in the morning can feel like a stretch, but if your feet hit the floor, you've done it and that's enough.
• 50:48
  So whatever you're doing, there's no expectation than just doing enough.
• 50:55
  Thank you.
• 50:57
  Both of those reflect last thoughts, reflections, messages, whatever you want to call them are so generous, Tom, and what has really come through in this podcast is how generous you are as an individual.
• 51:11
  So thank you so much for joining me today.
• 51:12
  I really do appreciate it.
• 51:14
  I hope you've enjoyed it too.
• 51:16
  Absolute delight.
• 51:17
  Ruth, thank you very much for holding the space today.
• 51:20
  You're more than welcome.
• 51:21
  Thank you.
• 51:24
  I hope today's conversation gave you something to think about.
• 51:27
  If it did, please share it with someone.
• 51:29
  Ripples matter.
• 51:30
  You can also follow the show so you don't miss future episodes.
• 51:34
  And if you have reflections or ideas, then please leave a rating or to support my work head over to my link tree, which you can find in the show notes.
• 51:43
  But for now, stay caring, stay connected, stay curious.
• 51:48
  Thanks for listening.
• 51:51
  Well, I hope you found that one as powerful as I did.
• 51:53
  I thought it was absolutely incredible and rather than leaving you with a thought instead I want to say thank you.
• 51:59
  I want to say thank you to Tom and all of those other unsung heroes out there.
• 52:04
  What you do behind your closed doors is absolutely amazing.
• 52:09
  Your stories need to be told, and I think Tom honored them well today.
• 52:14
  So until next time, take care of yourselves and each other.
• 52:18
  Bye.