Who Cares? With Niamh and Sara Podcast
Two friends discuss the highs and lows of life as mothers to severely disabled children with dark humour, a unique insight and brutal honesty
Who Cares? With Niamh and Sara Podcast
The “C” bomb
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In this last episode of the series we discuss the subject of care and have an honest and emotional chat about our hopes and fears for the future
Afternoon, Eve. Afternoon, Sarah. How's your day been?
SPEAKER_02Yeah, it's been quite nice, busy, but yeah, quite nice. You had to go to I had to drive to the respite Oliver's going into next week to drop off his walker because I can't fit it in my car um with his wheelchair and all his um luggage. So you have to do two separate journeys. Yes, and it's an hour each way. But um it's well it'll be worth it because then when he gets when he stays there.
SPEAKER_01Yeah, well put it on a C, that's the answer. It is an answer. So he's got going off to the respite place for the R next week for a week. Why?
SPEAKER_02Because oh God, I'm going on a go and see it. Where are you going? Where are you going?
SPEAKER_01She's going on holiday again. So now Oliver will be going into the respite place for an entire week. So I thought it'd be interesting this week to talk about when they do go into respite and when they go into care and all things around. And care at home and care at home and caring for them in the community. Letting other people take the reins. Absolutely. So we're going to call this episode the C-bomb. Yeah. Because the whole issue of care is oh, so not that C-bomb then. It's not the naughty one, it's the clean one. So it is quite frightening, isn't it, handing them over to someone else. Yes.
SPEAKER_02I mean, you do it every day when they go to school, but school's different. School's different, and Oliver but it's it is slightly different for us because it's not like they're going to school they're they've got a different type of care in a special needs school, aren't they? So I mean I've got someone, they're changing my son's bum. Yeah. They're feeding him. It's not like that at school, is it? They're supervising it.
SPEAKER_01How does that feel though, dealing with a kale? I mean, they they have to come into your house, so you have to let complete strangers.
SPEAKER_02Well, it wasn't complete it wasn't complete strangers to start with.
SPEAKER_01Right.
SPEAKER_02When I when Oliver first used to have a bit of care, it used to be in to help me out in the school holidays.
SPEAKER_03Yeah, yeah.
SPEAKER_02Um, so it would be someone that worked in school that knew Oliver, so like one of the TAs, that wanted extra work in the school holidays.
SPEAKER_01Oh right, yeah, because I've noticed that a lot of the kids get looked after out of hours.
SPEAKER_02Yeah, so it'd be like after school or weekends or school holidays. Um, and it works out well then because especially when Oliver was smaller, it it works out well then because when they're not working, that's when Oliver's not at school. So it worked out well, and it it would normally be someone from either his class or who knew him around. Oh, that's so different. That's the same thing. So that's different. It was funny because Oliver used to um like they'd knock on the door to come round and he'd just look at them as if to say, You're not supposed to be here. What's wrong with this? Why are you why are you not at school? I I only know you from school. Why are you in my house? But um he got used to it, and it was only like for a few hours here and there, they'd take him out to feed the ducks or to the park, or and then as he got older and it got harder, I got more hours. Um, but it was like we we'd have a lot of these people were already my friends. I you've got to remember Oliver's been at that school for 16 years now. So it was employing people that knew him, and I knew, and I felt comfortable to have him my home. Yeah, and I felt comfortable to take him out. But as he's got older, finding that care for a bigger, stronger person um has got harder. So then I've got to go outside to look for care.
SPEAKER_01So where ha when he was awarded whatever the costing is to have carers coming in, where did you the carers come from?
SPEAKER_02Well, first of all, that was from the the ones that I employed from the school. Right. So I was choosing who was coming in. Yeah. But when I couldn't find anybody, and and I'm so I'm looking for like an hour in the morning to help me get him dressed. This was a different thing altogether. This is when we went into a little bit of crisis. So I needed someone someone that works at school doesn't want to come around your house for one hour a day every day.
SPEAKER_01Right, okay.
SPEAKER_02So it's and it's also finding someone that's going to be regular and come in every day, and then I needed help getting him in the shower of an evening when when Dave's not there. Some people don't want to come and do that for one hour a day after work. Right. So it wasn't a a case of looking for somebody, this is a case of looking for someone for an hour every day. Yeah. So then I had to it had to go for an agency.
SPEAKER_01Oh, okay. Where did you find the agency?
SPEAKER_02The agency was um social services got a list of agencies that they use. That's how it works. Yes, so then they they put the care they put the order out for what you're being granted, and then the care agencies ring you and you sort of interview them and they interview you.
SPEAKER_01So when you say you interview them, you get a chance to vet who's gonna be able to do that.
SPEAKER_02Well, yeah, you don't you don't no, not really. You you you you meet with the agency provider, you don't meet the carers. Um but it took a while to get the right I mean I've sacked a few. Oh both You're fired. You're fired. I've sacked a few, I've got rid of a few. Um why why did you have to get rid of them? Um I had one care that there was because first of all, they were sending two carers.
SPEAKER_03Right.
SPEAKER_02Um and they were sending Are they always men? Now Oliver's older, they are men because they're stronger. Right, of course. Yeah. But they were sending two men.
SPEAKER_01Is that the only reason they send men? Because he's bigger and stronger. Yeah, because they would be up because they've got his dignity or anything about how.
SPEAKER_02I don't think I don't know, because I mean I Oliver's always. I just wondered whether that's a very difficult time. Oliver up until a couple of years ago, Oliver's always had female carers.
SPEAKER_01See, I would be worried if Sausha needed the kind of care that Oliver did. They wouldn't send a man. No, they wouldn't send a man for Sortia. Oh, so it does come into play somewhere.
SPEAKER_02But um yeah, they sent they were sending men, but obviously each one that was coming, it's not it's never going to be the same people every single day. Oh, okay. So now I've got a mixture of three carers that come. On a rotor. Yeah, on a rotor. Um but first of all they were sending two, and I noticed it was starting to overwhelm Oliver.
SPEAKER_03Oh, okay.
SPEAKER_02Because like they were coming in in the morning, it just felt like I I I imagine it felt like for Oliver, like two people just coming in and taking over, like, get dressed, have your breakfast, but and there's no And he doesn't know them. No, and it's and it's like they're getting him undressed, getting him dressed, giving him his breakfast, and there's two people in his bedroom. Yeah, and I find it hard to give over the reins anyway. So I was still doing the make getting his medicine ready, getting his breakfast ready. So and I think he became it started to overwhelm him because he was starting to put the covers over his head when they come in, telling them they wanted him to go. So don't all these people come in, yeah, and it was just getting too much because they're coming in every morning. So you've got down to one now. I said, I would rather do it with another carer, I would rather still do all the stuff, but just have someone to just another pair of hands. So um when they was coming in in twos, there was these two carers that came in, and I always used to keep Oliver's I've got a camera in Oliver's room, so he's just keep the monitor on. And I said he's got to drink his tea, and he's he's not to fall asleep yet. He's got to have his cup of tea as well. He's got to drink it, no, because he doesn't drink enough, so I was saying that he's got to drink his tea, and I don't want him to fall asleep because it's in the evening. I don't want him to fall asleep before he shower because he won't sleep tonight. And um they were sitting either side of his bed, yeah, and he was just pulling the covers off of Oliver and going to him, get up, get up, get up. No. And I went in there and I went, Don't do that to him. And he was trying to shove the bottle in his mouth. No! And um then I went because they were sh when they were showering him, there was the shower's downstairs, and the the they were shutting the door. I said, I don't want the door shut when he's having a shower. There's only me and Dave that live here. Yeah. And I see Oliver with no clothes on all the time.
SPEAKER_03Yeah, yeah.
SPEAKER_02Um, and I went out of the room, and the next thing I knew I heard a bang, and Oliver was upside down in the shower.
SPEAKER_01Oh no.
SPEAKER_02With his in his in his shower chair, and he'd gone over, the shower chair had gone backwards. He wasn't hurt, he did have a graze on him, but he he wasn't hurt, he was terrified. And what were they doing then? They were trying to get him back up, but I can I I can see what happened. Oliver didn't want to go in the shower, and he was kicking against the wall, so he's tipped the shower chair up. But they shouldn't have been forcing him into the shower when he didn't want to go. I mean he goes in the shower really easily now. Um, but he he become quite traumatised after that. That's horrible. And I just phoned the agency and I said, I'm not having him back.
SPEAKER_01Don't send Laurel and Hardy back in.
SPEAKER_02No, I said I'm not having them back, and that's when I said we need to cut it down. I don't I only want one carer in. And I would rather I'd rather still do the work than have it taken off of me.
SPEAKER_01It's a very hard thing though, handing over your child like that to strangers.
SPEAKER_02I mean, they always they're coming into your home. It's it's it's weird. Sometimes it feels a bit like Piccadilly Circus. It's like there's always someone in the house, and it's like Oliver likes to wander about the house, like with someone holding him. So he likes to go in the living room, sit down for a bit, and then he goes in the bedroom, and it takes the pressure off of me having to go backwards and forwards with him. Yeah. But I'm sitting there eating my dinner, and Oliver's coming in, and the car is just sitting there like a spare park, and it's like sometimes me and Dave will go and sit down at the summer house and eat our dinner, or we'll go and sit upstairs in my bedroom.
SPEAKER_01Just to my bedroom instead of by a car.
SPEAKER_02Yeah, it just feels awful.
SPEAKER_01How long do they stay in the evenings then?
SPEAKER_02Two hours. Two bloody hours. Yeah, two hours. They come in, they give him his dinner, and then he wanders about a bit, then we have to give him his medication. So this is every day. No, no, no, they only come in two nights a week. Oh my god, how could you stand that every day? I couldn't. I couldn't, but then if you got to a point where you couldn't physically do it, you would have to have him in every day.
SPEAKER_01Yeah, I suppose so. I mean, I'm lucky I don't have to I don't have any of the issues that you have with Oliver's for her physical well-being.
SPEAKER_03Yeah.
SPEAKER_01And the only time I've ever really handed her care over was when she went once a year, as it was, now every couple of years, to Louis for a week with a group. And that at first was really hard. And I kind of thought, oh, I hope she's gonna be alright. But we were lucky because she was with a lot of people she knew. She some of the people that were supporting her, she'd even been at school with, they were the same age as her. And she was so happy, and I knew in their hands she'd be absolutely fine. It's like a big holiday for her. It's not like the issue of her me having to worry about her being cared for and showered and all of that kind of thing like you have with Oliver. But when I took her to the hub when she left college and I had to take her to the hub, oh my heart was in my mouth. I just thought, are they going to be able to look after her? Are they going to be able to do that? They're not going to know her. What I do for her, they don't know her exactly. What about a little we get used to all of the little voibles and things that they do and little quotes that they have?
SPEAKER_02And they don't sometimes they don't even have to say anything, it'll be a point or a a certain thing they'll do. Or a growl. Yeah. But we know what that means. Absolutely. Someone's got to learn all that again. At school, they know it. Yeah.
SPEAKER_01And even at school, sometimes they don't know it. No, they don't. Well, you've had that lots of times, but also you worry it because that your child isn't the only child there. When they're with you, they're the get they're getting all of your attention. You're able to focus everything on whatever it is they need. But when they're out in a respite centre or in a hub, they're not the only they might have one to one, but they're not the only child there. There's a whole group. And that's something that Oliver is the only child there. Right. Well, of course. Here comes the mother. Willing to the front. Let's pretend he's been the star of the channel all day.
SPEAKER_02It's the only child they've got to look after all day. Even at school. It's like the only person that they've got to look after all day. I was even like it at the hospital.
SPEAKER_01She comes with the clipboard. But it is a big deal thinking, are they gonna look after her properly? And of course, our kids can't tell us at the end of the day. But they tied me to the radiator for four hours and I had a muzzle on, but they let me off just before you came to get me. We don't know. I mean, I think Sorta would kick off, she'd tell me if something happened. No, well it didn't tell you to a radiator. That's one thing. Because of this bloody personality, she's got this Jekyll and Hyde. I know nobody's gonna do anything to her that she doesn't want to be done. She's gonna and she would let you know if she didn't want to go back somewhere, wouldn't she? Oh, absolutely. She would say, but she loves it. She loves going there.
SPEAKER_02See, I don't know if Oliver would say that he didn't want to go.
SPEAKER_01If the behaviour indicate would be sort of like a bit reluctant going in the car. I don't know.
SPEAKER_02I mean he didn't like them carers being there, so I don't know if that had happened before. I mean it was very early on because they've been coming for about not last November, the November before it started. Yeah. What I do, I mean, I've still got a carer that I employ in the school holidays, but that is my he's a friend anyway, and that's a man, yeah, um, he's a young man, and uh it's the difference between the care is they're coming in, is it what's the word? Is it domiciliary? Domicillary. Domicillary carers. Put your teeth back in possibly. They're nice, that's right. Have a go. So they're just basically coming in to do care needs. Okay, right? They're not there to be, or I mean, some of them are quite friendly with Oliver and they've got to know him, but it's not there's no, they're not got no training of special needs or stuff like that. Oh, see, that's horrible. It's not like they're they're there to do a job, and then when they've finished that job, they're going straight on to another job. Another another client.
SPEAKER_01So Oliver's not an individual, he's not somebody's special that they're I mean there is one or two.
SPEAKER_02There's three that come, and they're all they're all quite different. We're all really nice men. Um one of them has a joke, you can hear him having a joke with Oliver. Um, the other one's really calm with him, but it's there's still I don't know, there's still not that interaction there. This the other one that I employ, um, he is a he's a he's a TA in a special needs school, not Oliver's school, but in another school. And he I he he knows Oliver really well, he knows our family really well. Um so he's he's got initiative, that's the word. He knows what he needs to be. I've had carers coming for a year and a half that I still have to say, now it's time for Oliver to have his breakfast. Right. Now it's time for us to get him dressed.
SPEAKER_01Do you think that that is also partly to do with and I know I might cause a storm by saying this, but the calibre of people that go into that kind of profession that are carers? Because I've met so many carers who are absolutely useless. Yeah. Useless. And there is an issue about it's so low pay. So who are you attracting by this low pay? You're paying people such small amounts of money, but you're only going to get people who are doing it just to get that small amount of money. They're not going to put extra in it, they're not going to make any it's not even a profession, let's be honest. Then there's not a professional body for carers to come in. How are you trained? The different kinds of disabilities there are, you know, whether it's a teenager or whether it's an adult of 50. It's just we're the carers. We're employed by this agency. And I think that that is sad because I think if they paid more and trained more for the job. We would have so much I mean you look at some of the other countries. And also they don't they don't stay around. No, because in Europe they is a very respected places like Scandinavia, it's a very respected profession, and they get to know the person that they're looking after. Sometimes it can be, you know, 10, 20 years a relationship with that carer and that person. We don't have it sort that here. All it is is a quick turnaround.
SPEAKER_02It's the same with the TAs in the school as well.
SPEAKER_01They're they're they're they're low-paid. Yeah.
SPEAKER_02We've talked about this before. I think I see I've watched a programme um about people emigr, you know, when they decide whether they're going to emigrate to Australia or stay in England, and they were saying that um I think she was a special needs teacher or special needs TA, and when they looked at they had to work out whether it was feasible money-wise, and the money she was earning in England, well, she would get three times the amount in Australia.
SPEAKER_01See, it's ridiculous, but then again, let's be honest, our carers allowance is so paltry, it's so pathetic. Pathetic that anybody thought that that was a good one. What is it?
SPEAKER_02Well, it's 80 quid a week, and then you have to do over 35 hours a week. We do 24 7. Yeah, but you have to do over 35 hours a week, and if you worked that out the weekend. But if you worked that out at from 80 quid, yeah. What is that about two quid an hour? Is it about two? I can't remember.
SPEAKER_01I'm gonna do it on my own. It's pathetic what we get because no amount of money, to be quite honest, that they would ever pay us, no allowance they would give us would justify the amount of work and hours we put in and we save them by paying children at the time.
SPEAKER_02Actually, go out and do another job that earns over £100 a week. £155 a week. Well, that's right, you can go out and you bite and do a delivery jobby. So you can you can earn if you earn over £155 a week in a job, yeah, even if you're still doing £35 hours plus looking after your child, they take your carers allowance all.
SPEAKER_01So you are not allowed to have any life other than they but it's it is it's phenomenal the carers allowance and how they justify it. And it doesn't go up very often. No, it's just gone up to 80 quid, I think it was 75, wasn't it? Big deal. I love it at Christmas when they send you the bonus 10 pounds bonus. But talking about the whole issue of handing the responsibility over to other people, there is also the awful thing about looking to the future and the issue of care. And it's something I think we all it's in our back in it's in the back of our minds. It's in the back of our minds and it is right. You don't want to address it.
SPEAKER_02You don't want to address it. And I know a lot of parents on forums, on Facebook, social media, parents I've spoken to, it's always in the it's it's the thing in the back of your mind is what about when I'm not here anymore? Yeah. Or when I can't do it anymore.
SPEAKER_01Or when I can't do it anymore. It and and that is something that we have that other parents see. What are your what do you think that your what do you see for the future? Um Do you know what I don't like thinking about it? I'm terrified of it. I'd like to look after her for as long as I can. No, we but in the meantime I know now I have to start now, not not in next year or year. Now I've got to now start looking around at places that potentially could take her to live when she's older and when I'm older, and that is terrible.
SPEAKER_02What what do you think? Do you think it's I mean I'd like her to be aborted living? In an ideal world, it will be something that you do gradually over time so that when it the when the time comes, yeah, it's not gonna be a shock for us.
SPEAKER_01Absolutely, but where we're also scared of looking into it and and the guilt that comes with that huge yeah um there's the potential of us not making it and then it's and then it's it's gonna impact them because it's gonna be Absolutely, we know that not only is my mum not here or my mum can't look after me, I've been rushed off thrown in and thrown into somewhere that I didn't even have any choice about. Exactly, and that's you've got the you've got the luxury of choosing, yeah. But even the choices are so limited because have you looked? I've kind of looked around at at brochures and stuff like that, and I've been talking to people who've already put their kids into residential care or whatever. I think the other thing is the fight. We know, we know this will be the battle. Well, the only battle the only the only way you'll find somewhere and you'll go, oh, this is the perfect place, and they'll turn around going, No, no, no, we're not gonna pay for that.
SPEAKER_02And or it will be somewhere miles away. Yeah. So then you haven't got the luxury of visiting them whenever you want. I don't mind it being miles away because I wouldn't want to put her anywhere here.
SPEAKER_01No, we you do you'd put her somewhere that was right for her. Absolutely, but starting out now, we know that we're gonna find somewhere, and you think this is ideal. It's a bit like we've talked about before. It's like dis what is disability? Should they all be clumped together in this home? Should that should she be be with people who got down syndrome or have autism or whatever? I want her to be with a peer group that are her age. Right for her, yeah, and right for her, and that is now starting to become a big issue because I will have to start looking. I I but are you saying you're gonna start looking, or you are you scared to start looking? Do you feel guilty? Do you feel guilty? So guilty. I can't I couldn't even mention it to her. I feel so bad about it. Do you feel guilty admitting it as well to other people? Yeah, of course I do. But it's like Oh, it's horrible. Like, yeah, I can't, I won't be able to do this, and also you know, to her life changing her life. She's very happy with her life here. She loves it here. And I've talked to her before, I've mentioned it before. Would you like to live somewhere else? No, we're not gonna rout with her when she's on one of a bloody. I feel like giving her the spotter Yankee and the stick on you go. Please go. But I I've even said to her, right, I think it's time we need to think about you living somewhere else. If you're not gonna live here with mummy and be nice, she's gonna but in reality I'm terrified of looking. I don't want to let her go. I feel really guilty about letting her go. I should hang on to her as for as long as I can.
SPEAKER_02Do you think you'll be judged? Is that is that part of it? Uh no, I don't you're not Bobby.
SPEAKER_01No, and to be yeah, to be honest, I don't care what other people think, but I think I I think it's the mum guilt, innit? It's because they still need your care, then you feel that you should still give it. And who's going to love her as much as I love her? Who's going to love Oliver as much as you love Oliver? You handing him over to somebody else. Yeah. But will they be able to get the colour?
SPEAKER_02I mean, I gradually, obviously, Oliver has carers at home. He has respite. He's used to go into um he used to go to the hospice, didn't he? When he from when he was young. Yeah. So he used to go to the hospice. And then when he reached 18, I found the respite place for him. That was hard changing because he'd been going to the hospice since he was like three years old. Yeah. Um, and then he left there when he was 18, and I had to find another respite place. Um, and then it was another, it was an hour away from home. Yeah. Um, and it was really hard to find respite places because there's either homes, yeah, they go and live. There's not many places that have because respite, it's got the added thing of who's coming in when and who's going home, and the rooms, if it's if it's full-time care, then that person takes that room and that's how many staff they need. Um, so they've got the logistics of that is for I know when they was doing this year's um like calendar, yeah, and you put in all your dates, and they have to work out who's coming in when, who's going home, who's got what bedroom, all that sort of stuff.
SPEAKER_01It's different for a home, isn't it?
SPEAKER_02Yeah, but um when I found this, even now handing him over, I'm like they I am like the clipboard mum. So I normally send them an email just before he's going in, anything that's changed. They normally get about three pages, and then because she goes, You're so organised.
SPEAKER_00But it must take you hours to get his little spreadsheet ready.
SPEAKER_02Yeah, no, because I'll do I'll I'll write down any like if there's any problems with his feeding, if his many medications change, certain things that he does, like everything that I take for granted, I've got to think they don't know this about him. So you have to do all of that every time. Well, no, I've done he's got a care plan, right? Which is which it was done when he first went there, and he's got pages and pages of what he likes, what he don't like, what this means, what that means if he does a certain gesture. But things change in like he might not go for a month or two months, yeah, and things change, like medication changes, behaviours change. Yeah, of course. So there's you feel in like a booking form when they're going in. So you list their medication, yeah, you list what clothes you've sent in. Socks always get lost. Socks, everything has to have his name on it, um everything that you send with him, and I like to send things that make him feel comfortable, like from home.
SPEAKER_03Right.
SPEAKER_02Mr. Tumble, Mr. Tumble goes, yeah, um, and some DVDs that he likes, some books that he likes, three different drinking vessels. Yeah, yeah. But then I'll put like he's not drinking much juice, he's drinking tea, or all that sort of stuff. Anything that's changed, but I have to sit there and think because something that I might take for granted. Like I took the walker, yeah. Right, so I've just got to put trust in them now that they're gonna put him in it every day. I hope. Yeah, yeah. I mean they're lovely there. Um, but it was like well, he went and stayed last time, and I'd wrote that he wasn't drinking much juice, he liked tea. Someone obviously had an whoever was working that one day that he was there, kept it's because they've got an app, right? So on the app, you can type in the app and they log everything that he does. Right. Poo, we drink, food, sleep, seizure, everything. Right, yeah. And they put it on so instead of me keep ringing them every 10 minutes, because I was ringing them four times a day when he first went, is he alright? Is he alright? Um, then I got down to once a day, and then they introduced this app. So all I have to do is type in my code, and I can see everything he's done in the past hour. Right. I've had to get myself down from 20 times a day looking at it, yeah, to like two or three times a day. Oh my god, he hasn't drunk anything in the past two hours. So are you on edge the whole time he's well I'm getting better, I'm getting better. I'm getting better. It's gonna take time. Yeah, he's been going there a year. Um, so like I and then I rung him up and said, You it's not saying on on this log that you've given him any tea. Yeah. So try him with tea. Yeah. But it's just that little things like that. Yeah, of course. Um I mean they're getting to know him. Obviously, he's stuck he's been going there for a year, but it's only for a couple of nights each time and for a week here or a week there. So is this his first time like for a complete week then? No, no, no. He's been he went for a while.
SPEAKER_01And he likes it, does he?
SPEAKER_02He likes it, but I used to think Oliver was quite easy with staying places and stuff. I don't know if it's where he's got older or he's got more able to express himself. Um he's okay, it's the last couple of days he gets a little bit down. I think he wants to come home. He wants to come home, he's had enough. And this is what frightens me about full-time residential care. Because like will he just get really, really depressed and want to go to bed because and they're saying he's tired.
SPEAKER_01Honestly, how could they not? How could they not? When they're used to being at home all the time, where's where's my mum? And why is she not? And we've got to justify that and and explain it and do it gradually. I mean, the other the other thing about it all that's really prevalent in my mind when I'm thinking about the future and about her going somewhere and living somewhere else, is her sister. I don't want her sister to be responsible for her. No, I want to take that responsibility away from her sister. What if she wanted to be responsible for her? That's different. I mean, she has said to me on numerous occasions, um, oh no, she's gonna come and live with me. Well, that's fine if she's settled and she's got somewhere to live. But she's got her own life to her. And she's got her other life. And she's 24 years old. I don't want I want her to have the choice to do that. I don't want her to feel obligated that she has to do it. That's a huge burden to pass on to our other children. Yeah, it is. And they're and they're entitled to have a life. Absolutely, and I've always said that from the outset. No, you have to have your own life. I'm not putting this on you because oh, but no, no, no, you need your life. The same as I had my own life, you had your own life. But then again, as to be honest, the social source is getting older now. I am noticing she's getting she's getting fed up with me a lot of the time. And I do wonder maybe she will get to a point in a couple of years' time where she'll think, actually, this is quite nice. I've got my own place, my own room in this house. It'd be nice if I won't cut off if you it's not as I'm gonna dump them and never see them again unless we're dead, but it would be a good one. But wouldn't it be gradually?
SPEAKER_02Like in an ideal world, it would be nice if they could like go and stay somewhere a couple of weekends, yeah. See if they like it, get used to it, go for longer periods, yeah. Then you they stay there and you visit and then go so that they get used to that, you go in, but they don't think they're coming home each time. Absolutely.
SPEAKER_01And but that that's an ideal world, isn't it? No, that's not gonna happen, is it? And that's that's the that's the difficulty as well. That's the battle now that I know I've got to take up next. The funding, the placing, the looking around, well the first thing is the looking around, isn't it? I mean I have got a friend who's her son is in a gorgeous place and he comes home for holidays. So it's uh a term time kind of residence. Right, so it's like a residential college. Y yeah, but it's not a college, they do actually live there. But when it's um Yeah, but you have you have residential colleges, don't you? Oh right. Well I they don't have a curriculum as such, they're not educated. Right, okay. It's where they live. Um and it's so it But you can you can go and pick them up for weekends if you wanted to anyway. Yeah, I mean I'm I'm intrigued to know now all about the because the other side of this is all the legality of it all and the issues about handing care over and who's in charge and who's not in charge.
SPEAKER_02Well it changes, but it changes when you're eight when they're eighteen anyway.
SPEAKER_01So it's but when when you hand over it it seems to change depending on where they go.
SPEAKER_02Well that's where you go and get a um what's it called? Proxy power of attorney. No, power you won't get a power of attorney. It's a deputy ship. Oh you have a deputy ship for finance and a deputy ship for health. Oh god so then you have then you have say over their finances and their health, or no matter where they are.
SPEAKER_01See, this is a whole world that we have to discover ourselves. We have to go out and look for this. Nobody's coming to us and going, Yeah, this is what you need to do, this is what you need to say. Any more than they're telling us about the homes. It's word and mouth. Somebody will say to me, Oh, I know this place, or but the the worst thing about it all is I've heard more horror stories about places. We all have. But people don't talk about the good places, do they? No, no, they don't. They're too too too quick to be around, but there are they are they're few involved. Of course they are, and that's that that's the battle. So, yeah, I mean it's something now I'm I'm gonna have to do, I'm gonna have to be sensible and practical about because as you have said so many times, I'd be not getting younger.
SPEAKER_02Well, see, I I I think I said this, it was I don't know if it's last week's podcast or the week before, when we was all because we was always told Oliver wouldn't reach adulthood.
SPEAKER_03Yeah.
SPEAKER_02So I didn't think it was something I was gonna have to think about. Yeah, yeah. But as Oliver's getting it the little warrior that he is, yeah, um it maybe it is something I but I know when you were saying about the guilt, my guilt is Oliver is not gonna be here forever. Yeah. Yeah. It I'm more than likely gonna outlive Oliver. Yeah. Um so I want to keep it. I don't know if that's selfish or it's I want to keep him at home with me for as long as possible. No, that's not selfish. I want him but I worry that I'll get something in place for him, yeah. And then he's gonna pass away there instead of out there. Sorry, he's gonna be upset. Of course it does. Um he's gonna pass away and I'm not there.
SPEAKER_01Yeah.
SPEAKER_02But am I stopping him from having some sort of independence in his eye?
SPEAKER_01You you won't know until that happens. You don't he will be different when you come to have to make that decision. And also, uh the thing that we always find hard as well is putting ourselves first because we're constantly thinking what if this happens, what what's it gonna be like for him or for her or whatever? We've forgotten about ourselves, and we have to think as well as we get older. We need some time, some life for ourselves too, and that is the most guilty kind of freedom that we could ever be given. It is a guilty freedom because we would have to wrestle with that. You're already feeling guilty about what happens. What happens, what if, which and it might never, but if that happens and he's not at home, so you're already feeling guilty, and that's something we have to learn.
SPEAKER_02It's just that it's something that's been hanging over our heads since he was a baby, because yeah, I mean I've only spoke to the cardiologist last last week or the week before. And um like each time I speak, I said, Well, what's his prognosis now? Because of his because of his heart. And um she said, We don't know because that operation that he had only come around in the 80s. Right. So when he was a baby, there was only people 15, 16.
unknownWow.
SPEAKER_02There's people living longer. What's the longest? Have you looked it up? I have looked it up, but it it's it's it's does it worry you? Yeah, it does worry me because Oliver's got a lot more health complications and he's just got a straightforward heart condition. Yeah. Um Oliver's and the the risks are like his liver failing, which he's under the liver team now, um, his epilepsy, he's got so many other things wrong with him that could impact his life. Constant seizures can impact his heart.
SPEAKER_01So it's hanging over you.
SPEAKER_02So it's ha it hangs over me all the time.
SPEAKER_01But that's a bit like the issue of us as parents of children with special needs. I don't know anybody who doesn't say it, and I will be honest, and this might be upsetting, but we do all think it. I know they go before I do. And we do think.
SPEAKER_02I I I I I read something the other day. Um I was reading a dad had written something on a social media post, and he said, Um, I'm gonna get vilified for saying this, but I he said I want to look after my son for as long as possible, but I hope that he goes before I do because of the thought of leaving him behind. Yeah. And it's not a it's not a it's not a a lot of special needs parents think that. Of course, of course we're not. But the thought of your child getting to 50, 60, and you're not there, and they're stuck in somewhere that well, you don't know. You don't know. Um you might they might be in somewhere that's really nice, and then and then the funding goes, and then they have to put them move them somewhere else.
SPEAKER_01If you're not around to fight for it, they're absolutely who is, and that's part of the dream. This sort of going off into the horizon that we really hope for, but it's not around, we really dream of, but it's not around, and that is the perfect place for them to go and live out the rest of their lives with or without you that they are happy, that they are living a life in a nice place with lovely people looking after them. Why is that so hard to find? Why is that so hard to be on offer? Why is it not? First and foremost, do you know what else in policymakers' minds Do you know what else it is as well?
SPEAKER_02There's a lot more special needs young people coming out of the system that are still around for a start, yeah, going off into the world, yeah, and they haven't got the places. There's lots and lots of old people's homes. Yeah. Hundreds and you you search up homes on the internet, and the majority of them that, well, nearly all of them that come up are old people's homes.
SPEAKER_01Do you remember a few years back somebody had the brainwave, they were thinking that they could mix old people's homes with putting in people with special needs into them. Really? Yeah, somebody thought this was a great idea. Oh, I can imagine Oliver going around in his wheelchair. Could you imagine all the old bags up? So she'll be trying to give them tea, biscuits, shove it down there. No, they should be stealing their biscuits. Having rows with Imagine our kids in with the elderly. Mind you, for some some people, because they did an experiment, didn't they, with elderly people and a nursery coming in to visit them and how it livened them all up. But I can't imagine how anybody thought that that was a good idea. It's completely unfair on our kids for a start.
SPEAKER_02Well, it's probably unfair on the old people as well.
SPEAKER_01Yeah, but it livened them up. Can you imagine all the people with dementia?
SPEAKER_02All these kids coming. I think my grandson went and did that in the uh the old people's home. They go in there and sing with them. Yeah, yeah. In the old people's home, they love it.
SPEAKER_01Oh, sort of like that. I should go around singing to them all, playing the guitar. But how how could you the staff, how could you have such a diverse group of staff working in one?
SPEAKER_02It it's it's the same as daycare centres, isn't it? When they they've got old people a lot older.
SPEAKER_01It's nuts, yeah. So this whole thing about care, the sea word, it's an ongo, it's an ongoing it's horrible, it's uncomfortable, it's so dramatic.
SPEAKER_02If you get the right care in place, like eat at home or out in the community or respite or or a or a care home, yeah, it's supported living, whatever. If you get the right place with the right people, it can work brilliantly.
SPEAKER_03Yeah.
SPEAKER_02But it's um it's really hard to find. It is. And also it's like it it no one knows your child like you do. But you've got to let go sometimes after you.
SPEAKER_01I think I have to be I can be a bit controlling with it just because nobody can do it as well as you, and nobody loves them as well as you, and nobody loves as much as I do, even though I do want to punch her on the nose quite a lot of times. But I'm hoping that you won't punch her on the nose a little bit older, she's gonna turn in and punch me on the nose. As she gets a little bit older, she maybe will strive for that independence, and it's up to me now to try and put that in place and start looking for it. But it's a horrible job that somebody's got to do it. Yeah, somebody's got to do it. So, in the meantime, you're going on holiday. Yes, and we're we're gonna put this Oliver is in care while you're off this. Having a hard life by the pool. Well, yeah.
SPEAKER_00I don't feel guilty.
SPEAKER_01Well, not one bit. Why why would you feel guilty for going on holiday after the life you had? I feel like it's annoyed you're going on holiday.
SPEAKER_02I still I still do get a little bit guilty. It's like then Oliver's having his little holiday because he all gets spoiled rotten where he is.
SPEAKER_01That's the way to look at it. She's off at Easter for her week in Lewis. Yeah, and you're gonna have a week off. I'm gonna have a week off. Um What are you gonna do? God, whatever I bloody but what does that involve? I get up when I want, go to bed when I want, my daughter will be what with any one. Oh my god. Don't even get me on that subject. Let's go now.
SPEAKER_02Well, this is the end of the series. It is. This has been a good series. Yeah, it has. Um this is the end of the series, and we'll be back round about Easter. No, not well not straight after Easter May May time because we've got a little we have to eat our body weight in chocolate free because we're um we're gonna we're gonna have a few people in for um interviews. We are yeah, we're gonna interview a few other We're having the Archbishop of Canterbury is coming in.
SPEAKER_01Tom Hardy can come if he wants. He'll just stand there like he always doesn't big couple cutouts Tom Hardy. That's fine.
SPEAKER_02If we can't get Tom Hardy, we'll get a few other special needs mums. Ian Murphy will do.
SPEAKER_01Yeah, yeah. Oh get out of it. I'll have him on my side then. Johnny Depp. I'll have him on the other side.
SPEAKER_02Have him all round the table.
SPEAKER_01Yeah, so that's what I'm probably doing with my wake off.
SPEAKER_02If we can't get them, we're gonna get some other special needs mums to come and speak about their experiences. So until then, bye for now. Bye Sarah.