Episode 9: Practical tips to help parent carers - before there’s a crisis

One cancelled care shift can wipe out a whole day.

Parent carers often seem able to do it all -  because they have to, but that can make friends, family, and professionals assume they can cope without them, and because of that, sometimes, people let them down.

Caring for a child with profound disabilities is not just “busy”. It is a constant mix of medical needs, physical lifting, education battles, and the emotional weight of being the only person who truly knows what “normal” looks like for your child. 

In this episode Melissa and Jane discuss what "help" really looks like when you're mum to a disabled child, and how friends, family and even strangers can lighten the load.  

They talk about why asking for help can feel impossible when your child has complex medical needs, and why respite care can be something you desperately need yet still dread.  If you’ve ever felt guilty for needing a break or judged for not taking one, you’re not alone.

Listen now for real-life tips for supporting parent carers, and a clearer picture of what “showing up” really means.

Subscribe, share with someone who needs this conversation, and leave us a review with the kind of help you wish people offered more often.

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 #YouAreNotAlone #RealTalk #HonestMotherhood #MentalLoad #CaregiverBurnout #ItsOkayToNotBeOkay #ParentingReality #UnseenStruggles
 #SupportMatters #ShowUp #CommunitySupport #HelpingOthers #BeThere #StrongerTogether #KindnessCounts

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Email us at: letstakecare@bftf.org.uk

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Transcript

Melissa Paulden: 0:06

Really think about things before you let a family down. There was one day where every person in her calendar her down on that very same day.

Jane Holmes: 0:17

Did they have to do that? There's nothing worse than that feeling that someone's let your kid down. Don't let us down if you can possibly avoid it. You can't just phone the neighbour or you ask an auntie whatever, you can't. That's it, there's no one else. Raising a child with profound disabilities can be challenging. As well as medical, physical and educational needs. Getting the help and support you're entitled to is and exhausting. I'm Jane Holmes and I'm Melissa Paulden.

Melissa Paulden: 0:53

We've been caring for our daughters for over 20 years, helping them to lead hugely successful lives despite barriers faced living in a society where the needs disabled people are often pushed down by the system that fails to meet their needs. We set up the charity building for the future, helped hundreds of families. As parents, we made some mistakes along the way and a lot.

Jane Holmes: 1:13

We've been tired, burnt out, broke, ignored, and isolated, yet understandably expected to keep going by a society of our struggle. Our new podcast, Let's Take Care, is our way of helping carers of disabled children feel less alone and more to cope with the realities of care that nobody talks In each episode, we'll talk about the emotional and mental weight of lifelong care, what it's like to fight the providers constantly, and how to survive practically, and physically.

Melissa Paulden: 1:43

We'll be sharing what we wish we had known 20 years and we'll be hoping to make you laugh along the way as well. Let's take care, the new podcast brought to you by charity Building for the Future for families and of people with disabilities. So we're here today because we have an army of helping us or enabling us to do what we want to do and we've kind of got used to that and used to asking for help and accepting help. But for some people that can be quite difficult, when your children are quite complex, have complex and medical needs, you feel like you're the only one can look after them, and it's a hard thing to do to for help, but it's also really hard for others to know how to help you. So today we're hopefully passing on some tips and and ways that carers can ask for help and and and around them and people in society can help carers, that makes sense. Do you feel like people don't know how to ask for

Jane Holmes: 2:53

Yeah, definitely. I mean carers, I think it's like you said just now, you especially the more complex children, you feel like can can look after them properly. And that's probably true. They don't look after nobody can look after your child as well as you can look after them yourself. So it's not that you're, you know, catastrophising or things that aren't the case, it is actually the case. Um so you as a carer may really need a break, but you um, and it's true, that nobody can look after them and care for them as well as you. So there's that awful situation where you are not able to, due to exhaustion, do what needs to be you do need help, but you know, while you're having that rest that they're not being cared for as well as you would care for them yourself. Um that was the situation for me for a really long Now, my daughter lives in an annex attached to my house, has full-time care, um, two carers um from uh uh eight in the morning until ten o'clock at night, and then a carer who stays awake all night as well. So we have care all the time, but I still um would never on a plane with my husband and go to the other side of world on holiday, for example, in a million years. Um I get nervous when we go to London together for the Yeah, um, and these young women who look after my who are her carers are fantastic. The level of care is really high, but you know that um, know, I've I've got 24 years experience, which they don't have, so it's really hard. Um, it's really hard to let go. Yeah, um but I have to because on the other hand, she's 24 and who wants her mother breathing down the neck? No, they're not.

Melissa Paulden: 4:41

They really don't, yeah, that's very true. Yeah. What about you? Oh, I think I've learnt to be better at asking for I think I have. Because caring is physically hard, and the older we as mums and dads and carers, it's physically hard on you know, on our bones.

Jane Holmes: 4:59

It's really hard, and I think we we we just went on holiday, actually. The three of us, my husband and and Kitty and me went on and we stayed in a holiday cottage that had a and bathroom, but it wasn't fully adapted, so there was wet room, no hoist. And I can just about get her from bed to wheelchair and to bed, but there's no way I couldn't walk with her while I'm carrying her. Um, so my husband did the m the majority of of the and it's it's a two to two-man job caring for her. So we had a week of full-time care that we were doing, we were absolutely exhausted. You need a holiday after the holiday, yeah, and it's to spend time together there sat, and that was lovely, and we had some nice walks and so on, and we had some some friends who live nearby who we saw. Um, but yeah, we we kind of came to the very sad that we can't do that anymore. The timing was was going to come where she was too big we were too old. And unfortunately, we will go away when we'll but we'll to take carers with us, um, so at least we get a good sleep because caring and not sleeping through is you is really hard, and now we're 56.

Melissa Paulden: 6:13

Yeah. It's uh not doable anymore, really. I mean, for context of people tuning in for the first time, uh we're in our fifties and our children are in their mid to late twenties, so yeah. We've been doing this a long time, yeah. And um it's we love our children dearly and wouldn't them for the world, but it's it's hard and it's hard. So we are asking people out there to help carers in better ways so that that tiredness decreases um you know, so that carers can have more mental That's really important. I lost a lot of that. I never had that because I was always on and always stuff. My brain wasn't really clear at times, you know, to only about her and my other child, you know. I probably wasn't thinking very clearly about other So carers need more help, basically, and society um far and wide, and then people close to close to carers need to kind of pitch in a bit more and know how to help. But some people are standoffish, aren't they? Because they don't want to say the wrong thing, they want to make a fool of themselves, they don't know how to help. So instead of doing something, they do nothing. Right. Yeah. Have you fo have you found that?

Jane Holmes: 7:33

Yeah, I I think so. I mean, there's not much of my family left anymore, to honest. And I've got a sister who's not really well enough to But in the past, you know, the grandmas certainly were to help, but not with everything. There was a line and a limit, and so they would never sort of have an overnight. I just think my mother-in-law did once or twice have but then sort of quite quickly said, Oh, I'm not doing that again. Um, my mum never did. And so, you know, really you know, what we needed was that she was with someone who loved her, yeah. So that we could then just, you know, relax enough to through the night, and we we really didn't get that. We got respite from the council eventually. I think Kitty was about eight when that kicked in, and that she would go to a a centre just down the road from us. I think it was one night every six weeks we had. But that again, um we needed it, but we didn't really we really want it because she, you know, I I wasn't really about leaving her with those wonderful, highly trained who, you know, um try their hardest, but I just thought going to miss some something, you know, they're not to notice if she's slightly wheezy, or they're not notice if she's gone a bit more vacant than normal, or you know, um, because they haven't got the the they haven't had the time with her. So that was actually very hard. And it's you know, I think something that people don't is that carers who um you know they they don't want but they need it, and that's a really important to make. You know, but I I remember, you know, when Kitty at um weekly boarding when she was 11, she spent senior at a residential senior school years for 10 years actually, at a residential school and then college. So she was away Monday, Tuesday, Wednesday, Thursday night during the term time. And I can remember, I mean, there's a number of people said to me, Oh, that will be so nice for you can have a and you can have a good night's sleep. I thought, Are you kidding me? She's an hour away with people that don't really know her. And I what what I actually said to myself was what am This is this is crazily risky. Um, and I, you know, I it's like when you have a small baby and your ear is on elastic all night, you know, and I I have my phone with me, and I, you know, and I I wish I used to wake up in the night and think, I wish I could just log into the school's care system just to see if see the what happened, you know. This made your anxiety work, yeah. It wasn't it. It certainly wasn't um a a a wonderful rest for me like so many people thought it would be or should be. I hated it.

Melissa Paulden: 10:08

I think what the kind of help that's really good is help, but not around the immediate need, not child. So I could do everything for Tia and my family, needs and cook, um, do a bit of cleaning, but it was the things like if I remember once the vacuum cleaner the dishwasher broke, something else broke, and my came around and said, This is bedlam, what the going on here? How are you surviving? And I'm like, We are s we're surviving absolutely I don't care about hoovering and the dishwasher and all that kind of stuff. But that's the kind of help that's really good, that of practical help. Someone could mow the lawn, fix fix the uh hoover. Yes, you know, um, bring bring dinner around every now and again just to take those little jobs away that are quite overwhelming and anyway for I guess of any So you feel nurtured, I think. You feel nurtured. Yeah, have that cushion, that buffer, that help. Yeah. Um, then you can go forth a bit stronger and look after your own family and and your your child a bit more. Yeah, you know, if somebody picks up a parcel for you or runs an errand or you know, all those little the that people do when someone's been in hospital or had a baby, the natural way that society says, right, that that there's a family in need. I'm gonna drop around, drop round some flowers, I'm drop round a casserole. Yes. They're amazing ways to help, but people don't see us carers, us families with disabled children, as in constant need, I guess. So they But that would be amazing, wouldn't you say, someone died?

Jane Holmes: 11:52

Like when my father died and Kitty was so unwell at the she was suffering from really nasty muscle spasms, and the the my father was in the last stages, and it was just I that was certainly the worst week of my life ever because I was so worried about Kitty who didn't know what it was was keeping her in such pain. It was over Christmas, and my father was dying, and um I um you actually brought round a big bowl, a big red bowl with a big lid on it with soup and French bread, and and in the card it said this is a hug in a bowl. Oh, and I honestly chokes me to remember that, but that was such a um a lovely thing, and you know, um it I'll forget that. In the mu in the midst of all of that um grief and worry stress and anxiety, and it was horrendous. Um, you know, I had a hug in a bowl and it like yeah.

Melissa Paulden: 12:45

I didn't say to you, can I bring some soup around because you would have said no, I'm absolutely fine. You just have to do that action. You just have to.

Jane Holmes: 12:54

Yeah. That's not very British, is it? That you're intruding, and but you want people to intrude in those situations, don't you, when things are really You want people to push you, push and say, No, I am helping you. Yeah. Um, yeah, push, absolutely.

Melissa Paulden: 13:06

I think we've got a little bit bolder with things like that since COVID, the whole doorstep drop thing. Oh, that's interesting. So you know, maybe people need to bring back a bit of that spirit of of just door dropping doorstep

Jane Holmes: 13:19

Yeah, you know. My sister-in-law brought you know those metal, those disposable containers that you roast a turkey. Oh yeah. Absolutely massive. She made, so I had my lovely soup from you, and then the day one of those big metal turkey dishes, uh, you know, dishes came absolutely full of macaroni cheese. I mean, it was enough to feed 25 people. That's fantastic. That's soul food. So I had some I was well fed that week. But yeah, I think I think you're you're absolutely you right that you know, push past it. People say though, well, I'm fine, I don't need any Yeah. And it is it's also, and I I'm very guilty of this You know, you know someone's having a hard time, and Is there anything I can do? What can I do for you? And people always say, No, I'm okay, thank you.

Melissa Paulden: 14:00

Well also you're so overwhelmed, you can't grab a from up in this fuzzy cloud in your brain. uh I need this, this, and this, and this. Yeah, which you do, but at the time you can't process that because we're in a constant state of crisis, or we were when our kids were young, and you you can't think straight. So we need people to take control and just say, Here's a dinner, yeah, here's an errand run for you, here's your lawn mode for you, that kind of thing. Because also we're not exempt from other things that in life, so we've got care going on and big worries our kids, but we've also got financial worries or our own personal health worries, or you know sort of normal worries. Yeah, normal worries that bring people down and them hide in a hole. You know, we've got all those kind of things on top of the other stuff that we're doing. Yeah.

Jane Holmes: 14:49

What else could other people do? Just um listen, really. Listen is a good one. That's a a really important one because I've been and upset at times, not so much recently, but like you say, but when when when when they're younger, it's it's you're you're feeling your way, aren't you, still? And it's quite hard. And and I've had people come up and talk to give me a bit of a talking to and say, look, you know, you you you are fine, and you know, you you know, come on, you've got to be strong and you can do this and all this kind of pep talks. Yeah, but but I also would have would like really it when people just said, Tell me what tell me, you talk to tell me, unload. Um so Oh and not say a thing back to you, just let you kind of Yeah, no, it's it is those pep talks had their place, and I and again, you know, they did sort of help me to button up a bit. But I would say that's good. It is good.

Melissa Paulden: 15:44

It is I mean when our kids were young we didn't really have social media, did we? Like in the 90s early 2000s, it wasn't really used much as it is now. No. But people some be I've seen some very good social accounts where send mums and dads are kind of offloading in public, which is one way, and it kind of shares those messages out there of the things that we need and the things that uh get to us.

Jane Holmes: 16:08

Treat us like a human being. I think some people think we're it's a bit like when you somebody's died and you don't really know what to say and you don't want to go near them. It's exactly like that. You feel it's going to it's gonna be catching. I've certainly you know come across people that have seen me as a bit of an alien species because of the fact I have a severely disabled child and I know I'm just normal. Yeah, people act weird. You know, you look back and you think, was some of that in my head? Or was were they being weird? Um because you kind of also you look for I think you you you naturally and it's not very unhelpfully, but you assume that people are finding it difficult or assume that people are being unhelpful. You can get into a very negative train of thought.

Speaker 2: 16:50

Yeah.

Jane Holmes: 16:51

So I do look back and think, was I being just negative, or were they being, you know, really unhelpful? Probably a bit both, honestly.

Melissa Paulden: 17:02

I think I'm I don't know if I mentioned it before in a podcast, or I think it was when we were on the radio about and the presenter asked about tips and I've set up a a family WhatsApp group, and my family in that group know really not to respond, but just to let me shout in that group, and I just dump all of worries in there, and it's so good. Sometimes I'll say, Oh yeah, or all I actually all I is validation. I just want them to say yes. That's a really terrible situation that that local put you under, or you know.

Jane Holmes: 17:36

Yeah, and on the flip side, it's also helpful when people say, No, come on, that's not you know, yeah, you know, you're reading too much into it, or you know, that's not what they would have meant, or you know, give them the of the doubt, and this kind of thing.

Melissa Paulden: 17:47

And it's also quite helpful to My dad's been very good at that over the years because I can get very um and kind of worked up with things that are going on. Um back when my daughter was at s primary school, when we had lots of battles going on.

Speaker 2: 18:01

Oh yeah.

Melissa Paulden: 18:02

He was very good at saying, hang on a minute, just take a breath, just calm down. How can we get through this problem, you know, and it step by step. And I think that, yeah, like you said, that's useful have somebody to go through that with you, and uh that's that's his way of of helping. But here's one thing that I just just thinking topic on the way over here. I remembered years ago the girls were young, we had the chance to go on a little honeymoon that we didn't

Jane Holmes: 18:29

There gosh.

Melissa Paulden: 18:30

And we were in the States staying with family.

Jane Holmes: 18:32

I remember this.

Melissa Paulden: 18:33

Yeah, and to have that honeymoon, I think it was two in Niagara Falls, we had to get lots of family members to help out, not just because we were staying with my grandma and her mum, so my great grandma, so that too much for them to look after the girls for two They could do a few hours, you know, because they were in there. Ooh, late 60s or 70s, and then my great-grandmother in her late 80s, I think, at the time. But they did one shift, and then my auntie stepped in and did another shift. So that was really good that the family kind of went, okay, we can't help and replace you for the whole 48 but we'll work together as a network. Yeah. And that was so amazing to just let us, you know, away for a couple of days. And uh yeah, I never forget that. And the girls had a a brilliant time actually.

Jane Holmes: 19:24

Yeah, I'm sure they do, because that's the thing. I mean, uh you know, I mean, they actually like having time away from us, and it's important for their growth and their in their sense of independence. Yeah. And you've got to be so careful as a parent carer not to them, I think. You know, and and to understand that they do need a break break from you, but at the same time you've got to find who can care for them properly, and that's quite a hard Yeah. Yeah. Um, yeah, it's very difficult. It's very hard that. Um, yeah. Yeah. For sure.

Melissa Paulden: 20:00

So what other ways can people help? We could talk about people out in society. What are they called?

Jane Holmes: 20:07

Well, as carers, I think help we help each other the actually. Yeah. That's a good point. I I definitely get a lot of that downloading that you just say you do to your family. I don't have any family yet, so I can do that too anymore. Um, but um even when they were alive, I didn't really that, we didn't really have that set up. But you Karen and others that are in similar the years has been the biggest support to me, helping each other, I think, because we get it. I mean, and that's invaluable.

Melissa Paulden: 20:39

But we don't I don't think we praise each other I think that's something that we need to be better Yes. And just saying to each other, you're doing you know, what you're do what you're doing is amazing, carry on. I think uh but going back, especially when our kids young, it would have been good for someone to just you d you you're doing an amazing and outstanding Keep keep keep going.

Jane Holmes: 21:05

Yeah, yeah.

Melissa Paulden: 21:06

But yeah, I think a bit more bit more praise and and that kind of love between carers would be really good. Because we're often caught in caught up in moaning and yeah sharing kind of the downside of things. But yeah, I think lifting carers lifting each other up a bit more would be good, would be good to see.

Jane Holmes: 21:26

There's like practical practical help, isn't there? Yeah, yeah. Um yeah, so for me, time out I think as well. I mean tight time out of but and but knowing that my is safe is really um the best way anyone could could uh, you know, just just uh clear my head. And the setup that we've got at home at the moment is because she's got a great care team, but I'm there. So in just in case, and for us all, I think that's the best scenario right now. Yeah. And uh if I go out. Out. I mean, I d I do a lot of uh going out without my husband and him without me because at least then we can really because we know the other ones there.

Melissa Paulden: 22:09

Okay.

Jane Holmes: 22:09

We even went on a cruise on my own last year. Um all on my own. It was great actually. I loved it.

Melissa Paulden: 22:15

So that's kind of a conscious conversation you two have had as a couple to say, here's how we're gonna cope.

Jane Holmes: 22:20

No, not really. Um I think it's just evolved. He's much more practical than me, and I'm more and what and I get a bit more worried about things than He's quite he sees things in in a much more black and way. But um I definitely feel either if I'm not at home, I only really relax if he is.

Melissa Paulden: 22:38

Yeah.

Jane Holmes: 22:39

And that's just that's how it will always be. Um he can relax quite well uh going out for the evening me. He enjoys that. And I enjoy it too, but I'm always sort of like, you know, check my phone and and I'll send a text, is everything Yeah. Um which is overkill and unnecessary, and quite often the carers go, Oh, sorry, I didn't see your message, we were too busy, you know, doing whatever and having fun, and you so yeah, I've I it it's very difficult to know what's and what's be being a bit silly because I'm I'm I'm traumatised by things that have happened in the past. Yes, cool. It's it's it really is um you know PTSD, uh-huh, I think. Um you know, so and that's when she's in the care of people, you know. Yeah, and I think because over the years, I mean not long time touch touch everything that's wood, um, but you know, she has had we have had some really nasty scares her and you know, we've nearly lost her very many times. And it's it's and we really have, you know. Um I mean sh it it's it's been you know um very and uh I think I'm still that still stays with me. Yeah. Imagine if I you know left the house with my husband and happened and they could and they couldn't cope, they didn't know what to do, you know. God forbid we lost her. I mean that would be you know, I'd never forgive myself. No. So yeah, I mean, yeah.

Melissa Paulden: 23:59

It's hard. It's hard, yeah. It's funny that balance, isn't it, between having a needing a break, acknowledging you need a break, help, but then thinking, actually, how far can I go from my child? And uh mentally you're not never very far away.

Jane Holmes: 24:15

No, no. It's always that that's right, every mother though, I guess. Oh yeah, isn't it? Yeah, yeah. Um so I think that for me, I've I've only got one child and she's obviously very disabled. So it's always been quite hard for me to know what's of you know normal parenting concerns and what's you sort of extreme parenting concerns, if you like. And I I've um I've definitely sort of voiced things to saying, Oh, I'm worried about this, and they go, Well, every p every mother worries about that, you know. So oh really? Okay, so that's that's a sort of normal concern that moth mothers have. Whereas I, you know, I I worry so much about so many Yeah. Constantly hard to calm down.

Melissa Paulden: 24:57

Yeah, I know. Do you feel that there's other things out there that make our lives easier as a form of help? So I've got a short list. So Oh, tell me. This is to the members of the public. Don't take the lifts. Oh yeah. Okay. Leave the lifts for people who really need it. Don't park in disabled bays, of course. The old chestnut. Please don't, please leave them for us. Don't stare, we've covered that so many times, but you know, hold doors open and make eye contact and smile. You know? Yes. All these little ways that you can help people if you see them in public, you know, don't step back and think, disabled person, just be normal. And then really think about things before you let uh family down. So over the years, we you know, carers have let us that's that's pretty standard. But there was one day where so my daughter was in a paralympic sport called Botcha for the England pathway teams. She had so much training three times a week, um, competitions and camps and that kind of thing. And there was one day where every person uh in her let her down on that very same day.

Speaker 2: 26:14

Oh gosh.

Melissa Paulden: 26:14

And I'm just thinking, did they have to do that? Were they really that sick? Could they not have turned up? It's so easy to let people I th I think they look in on that family and think, well, it's okay because always mum there, there's always dad there, um, always another carer who can take over. So I'm alright just to step out. So on that day, you know, the carer said she couldn't make it because she didn't feel very well. The coach couldn't make it, and then there was somebody else who was coming in to do something with her. You know, she was let down from four different angles, and it's just then we're left and it's you know, And I that's just what that might just be us, but I've personally found over the years people have been to to let us down because they see us as coping and see us as a as a unit that can survive without them that day or that week or yeah, whatever.

Jane Holmes: 27:04

And and not only is that not the case, and we we really need that support, um, but there's nothing worse than that feeling that someone's let your kid down. Yeah. Oh, you take it to heart, don't you? That's a good example of what I was just talking about. That it's probably every mum. Yeah. You know, somebody's let my child down. Yeah. And I just it's the most I mean, it makes me want to cry tears that you know, and I'm so furious. And how could you? Yeah, you've let me down too, but it's you've let her you know, so yeah, don't let us down if you can it. I mean, some of the excuses we've heard over the years, you have one where the the carer didn't turn up because the dog had diarrhea or yes But in any other job you couldn't have that was not an excuse.

Melissa Paulden: 27:52

The boss would say, get into work, right? But it seems to be, I don't know why it is, but around around the care industry, yeah, it's very people are flaky and they let you down. So I would just love for people to just man up a pull their socks up, you know. Yeah. Whatever's going on in their life, take it on the chin because whatever's going on in our life is a thousand times worse. I'm sorry, it is, I'm taking that one. It is, and we need your help. We need whether it is not taking a lift and holding a door open right through to turning up for a shift at to to give the the parent a break or to take the child out and to be doing something that they enjoy with you as the carer.

Jane Holmes: 28:29

And they they can't you can't just ask ask someone else. You can't just Yeah, you can't just say you can't just a neighbour or yeah, you ask an auntie or whatever, you That's it, there's no one else.

Melissa Paulden: 28:39

Yeah. And that one day where you've scheduled that care to in, or that coach, or that trainer, or that person, or whatever it is, activity provider, you've spent a time looking forward to that day, planning for There's so much has gone into that day, and then for to let you down, I mean it's it just destroys you and wrecks your reason. There's no there's no plan B. Then there's no like you say, you can't just go, Oh, I'll drop them at a nursery or a childminder or

Jane Holmes: 29:08

No, there's no plan B. You just have to stop, you just have to say, sorry, I'm not doing what I said I was going to do. I know. And running the charity has been, you know, I mean um it over the last couple of years, of three or four years, it's it's it's grown so much. Um but but in the past, when it was still, you know, quite small, um, I would have to sometimes take you know our weeks off at the last minute. I couldn't possibly work. I was working voluntarily then, it didn't really much if the charity was put on a hold. Um but once we opened our centre and people started on us, um, and now we've got almost a thousand young coming through the door every year, you know, there's a huge responsibility. So if something happens at home and I just have to, you pull out to really you know, lean on you guys, we've all that because you know something happens with our child and we just immediately automatically that's fine, don't about it. We'll s I'll I'll carry that for you. And I think that's really invaluable as well because do happen at the last minute for us and we do need um you know, we do need support and especially trying to And we you know it's now it's a sort of proper job, if like, as opposed to a bit of voluntary work, you know. Knowing I've got colleagues who will have my back if need it. It's really important. Yeah. So I would never do it lightly, and I know none of you but uh it's also really nice to know that things aren't to fall apart if I have to pull out for a few days. Yeah. Um yeah.

Melissa Paulden: 30:34

I have heard though that some people who are parent don't tell colleagues that they have a disabled because they want to keep their work life separate to their home life, which I understand as well. But I think for that point that you've just raised, really important for people to actually share that around you and say too. Yeah. That people will instantly have a better and bosses will as well.

Jane Holmes: 30:59

I mean when you said that, that would worry me if I heard a parent, you know, because I well, you know, because uh they are they feeling that they want to go back to their of so-called normal life and and have a bit of life that involve their child, their disabled child. I d I think that that I think that way madness lies personally. Um I can see why people do it, but it's not reality. You are a parent of a disabled child, you know, there we that's who you are. And like you say, it's part of your identity. Yeah and to sort of pretend that that it isn't, I think I would I I think that would personally, I think that's that's a little bit dangerous, actually.

Melissa Paulden: 31:36

It is, it is. But yes, I do hear I have heard of that. Yeah. And for the greater carer movement, if you like, people need to um acknowledge that they are carers. So that that that identity then gets some respect out there in public and then people in turn treat us better.

Jane Holmes: 31:54

Well they understanding, even if they don't they can still be understanding and say, Look, you child's in hospital, I I've I'm I'm out for the next I know how long, sorry, but couldn't care less about the job at this juncture in time. Being able to say to your colleagues that this is my Exactly. Um I may need to you know dash off at any given moment, I'm here while I'm here, kind of thing. And for those colleagues to then say, Don't worry we're we're here, but don't worry, we'll step in, we'll help we'll we'll support you. I think it's is really important. Yeah. Otherwise you are at risk of letting people down and they don't know why. Then you've got more guilt. Then you've got more guilt and worry, and yeah.

Melissa Paulden: 32:33

So we ha we've talked about ways that family and and society can help. And there are lots of ways, and there's lots more ways that we haven't covered, but we've touched on some great ideas. But we could talk all day about local authorities and people in power, people who provide services to our But just in short, what other ways do you think that they can be more helpful?

Jane Holmes: 32:58

Well, the the primary thing that springs to mind is that I saw on Facebook last week, actually. Um again, a senior counsellor saying that you know the the council's financial situation has been, you know, poor poor financial situation has been exacerbated by of disabled children. Well, you know, that that is probably true. But you know, you say that on a public forum and people think the take you know disabled children are uh me it's it's because of them that we've got potholes. Yeah or it's because of them that we've only got these tiny little bins. It becomes them and us. Yeah, yeah. And it becomes them and us, and they then start blaming the disabled child. That builds up prejudice. That builds up prejudice and then suddenly, you priors in society. So it's I mean this this is rhetoric that's come from a councillor. I did take him down on the you know really bad though. But but that is is it's really, really bad. Um, because actually we all take a risk when we have a child in this country in the full knowledge that if something to go wrong that that the commun you know the society, the government will support. So to have a government, the government moaning support, you know, or or or or making it out to be that that is causing problems in other areas is is to me. Absolutely. Because I'm sorry, you know, but th they these children have a very important um part in society. People can learn a lot from them, um and they are here to teach kindness and tolerance and um the the way the the nastiness that's creeping up in this whole world, um, know, they're the antidote to that actually. So, you know, there needs there needs to be they need to praised and valued. Yeah, not blamed for the problem. And that's that's horrible. A big part, a big way of people can help.

Melissa Paulden: 34:43

Yeah, absolutely. Looking back at our experience, I think um teachers and people in schools, I know they're overworked and tired themselves, but maybe be a bit kinder. Even just greeting us with a bit more warmth and a on it. Sometimes that goes a long way, smiling at somebody. Yeah. Making them feel a bit settled because we're always on edge, aren't we? Especially when it's school pickup time or going to school gates or whatever. Yeah, I think they could be a bit a bit softer and a um don't always deliver the bad news because there's going to be challenges, there's daily challenges lives that we have to communicate to you as a school you have to communicate back to us.

Jane Holmes: 35:24

But But I think it's important also to say that you know are people who have been really helpful and do try hard. And you know, that it doesn't it doesn't go unnoticed that and it's I'm I'm very grateful when people do make an and they do show kindness or say a kind thing, you people are always saying to me, Oh, you know, we you great parents and our daughters had such a good life and know, etc. etcetera and I'm I'm really grateful for that and it does give me a boost. So, you know, it's it's peop people don't get it wrong. You know, most of the time people are reach out and they something kind, and you know, and I and I when I've asked for help um with Kitty because I've been in a desperate I mean I am English at the end of the day, so you know I like to uh trouble people. Um but um yeah I do um really value it when people and do normally come forward and they do help and they actually. I think generally you know I I want to to end on a note because people do try and and they they don't always get it right, but they you have to appreciate the effort look at the intention. I think that's really important. Look, you know, are they trying to help? Are they trying to be kind? Yes, they are, I appreciate that. And whether they actually are helping or are being kind of secondary, actually, because it's their intent, think we've got to appreciate. And it's it is quite hard to get to that, but yeah, I I think looking at people's willingness is is really

Melissa Paulden: 36:46

I feel that we need as carers, we need to be seen as a group of people who are worthy of help a bit more from society. I think that's my point. Yeah. So right now we've got into a really good culture of the cost of living crisis. I don't know if it's the same in other countries, in the UK, there's a food bank in every town. You know how to people know how to access it. And if they don't know how to access it, they go on onto a social media platform and ask for food. And I saw this last night on my one of my feeds. And society, people in the neighbourhood are so good at saying, I'm there for you, I'm gonna drop round this, this, and this. Another person said, I'm gonna pick you up and take to Lidl's. Um, there was, I think, 20 offers of help. Wow. And that's amazing. And we've it's taken a long time to get there, but know that they don't have to struggle with hunger with poverty. There's a lot of help in society. But for us in the care world, I think we need to get that point where we can go into onto our Facebook groups and say, I need some help and and just advocate for a bit more.

Jane Holmes: 38:00

I think it's I think it's human nature to be more to somebody who is in a situation that you could yourself possibly be in. You know, if if somebody's hungry, for example, or got money troubles, or that you know, there was a post on Facebook locally the other day, poor mum couldn't afford presence for her child. So, you know, you do and you think, gosh, you know, that is something that could happen, could have happened to me. We're all just a few stages away from destitution, not and um but uh that disabled child that's never gonna be Yeah, so I can't see that reality. Yeah, I can't get into that, you know, with them because never going to be be who I am, so I can't I can't even you know. I think that's human nature. I think I mean I think we're we're all guilty of that. It you know, um yeah, w especially you know when you're and you know the things happen, you think, well, I'm never gonna be old, I'm never gonna need help, you know. And I think that's human nature, but I think it's up to to educate as well. So look, you know, um we are you know just as as human as you are, um and we just need a little bit of support. Charity is different. I mean we need charity for the charity, by the way. No, but we don't need charity for ourselves, it's just see us as human beings.

Melissa Paulden: 39:15

So it's kind of 50-50, isn't it? We as carers need to be a bit better at asking for at you know, seeing what what we need, yeah, um letting those barriers down a little bit, yeah. And also people out there who are in our lives, in whatever format, whatever whatever range, you know, to be a bit more open and ready to help. But yeah, going back to you know, one of the reasons we started this podcast was because of our own kind that that's led to poor health in both of our My cancer diagnosis was, I think, only happened because I said to the GP, I'm a carer. Because we don't have GPs anymore. Um, I don't know. Um if you live in a bit in a larger town, you don't have a named GP anymore. So they don't know you. They don't get Dr. Potluck. Yeah, Dr.

unknown: 40:07

Potluck.

Melissa Paulden: 40:08

You don't know who you're gonna see, so they don't your situation ever. And have they got time to read through your notes when they have just seen a patient, you know, ten patients before you? Probably not. So I had to say to the GP, I found a lump in my breast. Um, I don't know what it is because it doesn't I've it and I don't know if it's cancer. And she said to me, I don't think it's cancer. And I had my hand on the door saying, Thank you very doctor. Okay, it's just a cyst or a bruise or a lump that will go away. And then I turned and said, I'm a carer, I'm my only parent left. If there's anything, you know, that's bad happen to me, I need some support now to make sure everything's okay. And then she said, Okay, come back in the room, turn and she said, Okay. I don't she still said I don't think it's cancer, but I'll send you on, you know, through the system to Wow. So I had to declare because she didn't know me, I had to say, I'm a carer. So that's another way that hell I guess the health maybe needs to put carer at the top of all of their

Jane Holmes: 41:14

Um I think ours do actually. We do they we can register as a carer at our at our practice when notes used to be, you know, patients' used to be those sort of remember those sort of beige to remember. And mine were about an inch thick, and my daughter had seven of them. Seven of them that you know, sort of four inches thick, together with a massive elastic band, so it was obvious, you know. But um, yeah, um I think doctor Dr. Soders should definitely flag up if you're a carer percent because yeah, you know, and we and we don't you we we don't go in lightly to the surgery either. Right. Um I remember my GP saying to him, Well I was going a a spate of quite poor health, um one this is like one after another. And he said, gosh, you've been in to see us a lot this and I said, I know, and she would but but everything is

Speaker 2: 42:03

Really?

Jane Holmes: 42:04

Don't think I don't I'm not trying to say that you're you know being a hypochondriac. You should ever everything really needed to, you really need to see us. You've just had some very bad luck, and I thought, well, quite luck, but anyway. But yeah, so yeah, we don't go lightly. We don't we don't have time to sit and imagine illnesses in ourselves, do we? Absolutely. Too busy obsessing over the child.

Melissa Paulden: 42:28

So those are just a few ways that we've figured out how people can help us and how we can help ourselves other carers. There's lots and lots of different techniques and and bits of advice, um, and we'd love to hear it from people, wouldn't you say they can uh maybe write in?

Jane Holmes: 42:45

Oh, most definitely, yes. You can always email us at let's take care at bftf.org.uk.

Melissa Paulden: 42:55

We'd love to hear from you. And remember, we're carers, we're here for you. Um we're always open to anything you want to share us or come on the podcast. We'd love to be taking some guests soon. Definitely. Yeah. So um take care of yourselves because it's really