Transcript: Celia Sweeney: A carer's story

Podcast Episode: Celia Sweeney: A carer's story

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
CS - Celia Sweeney

MD Celia Sweeney cares for her son Paul who has one of the rarest brain diseases in the world. She very kindly gave us her time to tell us about her situation during the Covid-19 pandemic - the challenges of caring, as well as the opportunities and what she believes needs to happen post-Covid. Please note that this episode describes some events which listeners may find distressing.

Thanks for speaking to me over Carer’s Week. You care for your son, Paul, who has a rare brain disease, and that can’t be that easy for you. Can you just tell me a bit about your current situation with your family?

CS Well I’m a single mum to three wonderful young men. I was going to say boys but they’re not boys anymore! 23, 22 and 20. I brought them up on my own after the interdict was granted finally for life against my abusive ex in 2006. I suppose I’ve got perspectives from all points of view, but fundamentally I was a carer at the sharp end with no health and no support and three small boys to look after for years. I also had my own issues. I was medically dead in ICU in 2001 for ten days, so I was registered as highly disabled as well. So on top of having major health issues myself, I still had to micromanage Paul’s care and my other boy’s care. Finally, after 2006 I rebuilt my life and my health after I managed to get the interdict against my ex. My life is my boys. Paul was identified as having significant disabilities from a year old because he had meningococcal septicaemia at five and a half months old, and the stress of looking after him as a small baby who was so seriously ill and my ex and the whole circumstance at the time, that’s why I was up the ICU in February 2001. Later on Paul was then diagnosed with one of the rarest brain diseases in the world. It’s succinic semialdehyde dehydrogenase deficiency, SSDD, and you can edit this out if you want, Michelle, but I always laugh. Same shit, different day, the acronym is for! You couldn’t make it up! SSDD: same shit, different day. I mean, you’ve got to laugh because sometimes that’s all we have. We’ve got to keep laughing and fighting through what I know and understand with the sharp end what it’s like to have no support, be financially impoverished, be in a whole new situation where you never thought your life would take you. An analogy if you think about it, there’s us when we have our children. We think, “How long will it take them to get off nappies? one-year-old, 18 months, two years old? Oh my gosh, they’re not of their nappies at two.” Paul wasn’t off nappies at twelve years old. It took me three years to get him off nappies ‘cause I was determined that he wouldn’t go to secondary school in nappies. You know, a year for him to do up a zip. Paul was one of the lucky ones. He’s the epitome for getting it right for every child because he had a cast of thousands involved with his care from a year old.

MD Mmm.

CS That’s why he’s a walking talking miracle, but I know and understand just how difficult it is just now for carers, especially now in the pandemic lockdown, because I was on my own with Paul when I used to hold him down for over an hour at a time. He used to smash his face off everything. I’d a specially adapted car seat ‘cause I couldn’t drive anywhere ‘cause he used to smash his head off everything. I’ve got safety glass in the house. I had to carry him everywhere. I had a specially adapted Maclaren’s pram that he would still fit in now as a young man, but we’ve turned a corner through all these years of care and it was like a jigsaw puzzle with this non-verbal young man and he’s now a walking talking miracle, and if you were to meet him you just wouldn’t believe what he is. He’s 20 but he still plays with his “Fireman Sam”. He still watches “Thomas the Tank Engine”. He’s become a wonderful sous chef in this pandemic. We’ve got quite a good routine going now. He’s so wonderful and so enthusiastic, trying to teach him new things in the kitchen, but he needs one-to-one care wherever he goes and it’s more a shadowing because I try and give him as much independence and a feeling of independence and confidence, and he has that. He has that. At the CPG for carers we were on a Zoom earlier on. He listened avidly to all the comments.

MD Okay.

CS And I’ve taken him to the CPG for carers. He’s met MSPs because he needs to have a voice.

MD Yeah.

CS He knows what he wants. He knows he wants to be valued. He wants to be valued just like everyone else, and the one thing which has been so lovely, if you look up Lothian Regional Buses, LRT, hashtag Lothian Star, he’s had thousands and thousands of views ‘cause every Thursday he was out at 8 o’clock with his pink saucepan and wooden spoon clanging away for all the drivers and nurses and carers, and it was so emotional, and the buses would stop and they’d have the lights flashing and beeping the horn, and the head of the control of LRT came down last week to give him a box of chocolates and say thank you for all his lovely support. So he tells everyone he’s the Lothian Bus Star.

MD What supports have you in place currently for Paul and is that still available given COVID-19?

CS Everything stopped basically. We came into lockdown earlier because Paul’s vulnerable and because of my health conditions I’m vulnerable as well. So all the support has stopped, however there’s wonderful third sector organisations out there giving wonderful digital support to young people like Paul, and then he’s got Positive Paths. He’s got three, six, seven, eight, nine, ten different sessions a week, which are fantastic. He’s got storytelling, music. A Friday night’s the highlight if he’s got a wig or a hat to wear or something, because they’ve got an hour and a half of karaoke, disco, where they Zoom and see all their friends. So they’ve really, really worked really hard and fundamentally it really helps keep Paul connected. The one thing I will say which is really upsetting for me is I’ve noticed a bit of regression in Paul. You’re talking twenty years of micromanaging his care. He’s regressing a lot. He’s losing track of days. He’s repeating himself a lot. All these attributes that he had previously we’d managed with all the input and all the wonderful support to bring him forward and moving forward, but this is part of the brain disease ‘cause Paul’s brain disease is degenerative. We don’t know how long, sadly, how long we’ll have him for.

MD Right.

CS So that’s what I’ve noticed and I was speaking to someone the other day and I said, “Do you know, I have to set Paul’s alarm at five to seven when I get him ready in the morning because he listens to Boogie and Arlene in the morning on Radio Forth, and that’s his world.” That’s his connection to listen to the world. He’s got to listen to the radio and Boogie and Arlene and their jokes.

MD And how are you coping in lockdown?

CS Well I would like to be honest and say that it’s up and down. I call it lockdown syndrome. I seem to have this burst of energy for a day or two days at a time, and then the next day you’re totally flat, and then I think underlying all this is the fear. What I find about lockdown is, it’s akin to what carers have always experienced, it’s we were always isolated. We were always dealing with fear and we’re dealing with medical diagnoses that we didn’t know about. We were learning on the hoof, we’re financially impoverished. We had to give up our jobs to look after our loved ones we cared for, but what I’ve found quite ironic in the lockdown is like now other people get a taste of what it’s like to be a carer, to have your privileges taken away, have your life taken away, be financially insecure, worrying about the future, fear for your health, but this is part of the parcel of being a carer. This is what our life is about. So our lives have not changed unless fundamentally the government have a brilliant recovery plan for carers, because this is our life. Okay, we’ve lost day services, we’ve lost respite, and we can understand just how difficult it must be. If I was that mum with Paul how he was ten, twelve years ago, I don’t know how I would be managing it. So I’ve been there and I want to say to all the carers that I’ve been there. I was there for tewlve years on my own with no support and I know just how hard it is. It’s a treadmill. It’s like something you just can’t stop. You love who you care for and it’s just never-ending. I remember once, I never had any help from my ex financially, and I remember down to my last £5 one Christmas, Michelle, but I’d spent the whole year planning Christmas ‘cause I was on such a tight budget, and going to bed in tears thinking, “That’s great, I’ve just managed to make a magical Christmas for my boys yet again.”

MD You’ve shown amazing resilience in all of that. What’s the secret to that?

CS I was born two pound two ounces, Michelle. I was born fighting. The secret, it’s no different to any other carers. It’s your loved ones. That’s what you do. I think one thing that empowered me was knowledge. After my ex, I broke up with my ex in 2006, I started studying because before the kids I was very successful. I had a very successful career and I had this dream of taking those skills into the third sector and making a difference to Paul’s life and people’s lives. I started studying. I didn’t know where it would take me. I think I started off with a lease day on the computer so I could work out how not to break them, then I did a HNC in social sciences. I remember turning up at a lecture and the lecturer said, “Right, pen and paper at the ready. 500-word essay on the history of Scottish education.” I put my hand up and said, “Can I just leave now?” Little did I know, all those years later I graduated from Edinburgh with a major in psychology as a social scientist, and just like a kid in a sweetie shop I particularly chose all the different subjects to give me knowledge and information as to how to protect Paul for his future, the laws, what he was entitled to, and his welfare, health and welfare and social care. I did a whole myriad of courses within the social science degree, which really, really did help me, and through that I think it empowered me. Knowledge is power. They were taking Paul’s CSP away from him at the end of his primary school year, the day before my graduation, and instead of looking forward to my graduation I spent three hours looking through all the laws and the codes of practice they hadn’t adhered to, and I turned up at this meeting not knowing what to expect. The head of adult services and the depute head of the school said, “How do you know all this information? You’re more knowledgeable than we are.” I said, “But that’s what you’re paid to do.” So I’ve always been proactive but very nice. I would never be argumentative or anything. So always knowledge is power. So it’s been a long journey.

MD I read a blog that you wrote for The Alliance where you said that even before lockdown a lot of carers felt isolated and low and with no help, financially impoverished, emotionally and physically drained. Do you think lockdown has exacerbated this?

CS Absolutely. Absolutely. If anything comes out of this, it has to be a whole overhaul of social care. There’s got to be a full recovery strategy for carers, mental health, physical health, financial help. I was looking at some figures. There were nearly 400,000 more unpaid carers in the last three-month period, which takes all the unpaid carers in Scotland alone to over a million unpaid carers. That’s one in four. So that’s got to be a wheel for progress. It’s got to be on the manifesto for every single party. They’ve got to identify these invisible carers. We are invisible and we can’t go on because we’re not robots. I’m not going to be here forever and all these wonderful people that we care for, they need to have a life, and it needs to look at the whole holistic package of care, not just for the carers. I’ve always said, “If our loved ones are looked after, we’re happy.” So it’s not just us. It’s our loved ones and it’s a whole holistic package of care that has to be looked at. One thing I thought about, they’ve got to actually have a baseline and analysis of where carers are just now after the effects of the COVID-19 lockdown, a baseline health assessment for all carers to give them the confidence they’re okay. If there’s anything detrimental to the health it could be addressed because a lot of carers are really struggling. We were struggling before but the impact on mental health and physical health just now must be catastrophic, and also we are financially impoverished. The Carer’s Allowance, it’s a token gesture. This wonderful, it’s much appreciated, this supplement for the Carer’s Allowance is only given to 10% of carers in Scotland. So this £230-odd is wonderful, that’s great, but it’s only 10% of carers. So what happens to the other 90% that have extra food bills, extra heating costs? I know I’ve got to have the heating on for Paul. For instance, just something small, last week I was doing the shopping. Two mundane items on my normal shopping list increased by 150%. This needs to be managed and it needs to be looked at. Financially we’re impoverished and not only that, the whole Carer’s Allowance, not everyone’s entitled to it. What happens to the old-aged pensioners who aren’t entitled to the Carer’s Allowance? What happens to those that are still working and they maybe can’t claim Carer’s Allowance but they’re still doing their caring roles? Everything needs to be looked at.

MD How did they judge who’s entitled to the Carer’s Allowance?

CS The Carer’s Allowance is you’ve got to be working less than sixteen hours a week, and I think it used to be under £120. The 230, I think its £232.10 or something like that for the COVID supplement, they have to be on Carer’s Allowance and have Higher Rate Mobility and direct care to be entitled to it.

MD Okay.

CS Unless things have changed, but I worked it out before. It’s only 10% of carers that are entitled to the supplement, so that’s just a drop in the ocean really. So fundamentally everything’s got to change. If they’re looking at what is the new normal, the new normal has to include carers speaking at the frontline, speaking to everyone at the frontline, and we have to be at the heart of all the discussions for this recovery to be a wheel for change. I would call it what would be akin to a paradigm shift. The whole of society has to change. There has to be a whole paradigm shift in social care and health, because I’m not going to be around forever and I want to make sure my son and all the other carers that I’m speaking for, our loved ones are protected. How does that look? What does that look like?

MD Mmmhmm.

CS What I didn’t tell you is I was almost dead last year as well. I had sepsis.

MD My goodness.

CS So I was medically seriously ill for eight months, but on top of that I still managed to look after Paul. I still micromanaged his care. I was on twenty-one different drugs for painkillers a day but he kept me strong. He kept me fine and he gave me a reason to get up and take tablets and fight through the pain, to keep looking after him.

MD Mmmhmm. That kind of leads onto my next question because I read a recent Health Foundation report that shows that carers of younger adults have worse outcomes around their health and finance than those caring for older people. Would you agree with that?

CS But that’s because if you think about it, when you have a young person you’ve got to micromanage their care. Actually you’re at the start of their journey. Paul is a brilliant roadmap as to getting it right. It doesn’t mean it’s easy but actually you’re having to look after Paul 24/7. You have to watch how they eat, how they drink, every single aspect of their care you’ve got to micromanage. On top of that you’ve got the financial implications, the loneliness. Everything’s new, the psychological impact alone of becoming a carer when you’ve got a young adult, and then if you take into comparison by the time they reach adulthood they’re more stable. I would imagine so, and they’re in a pattern of behaviours which the family are used to and adjusted to, and their carer’s network. I hope so but that’s not always the case either. So it’s just not that black and white, Michelle, but I do believe that if you’ve got young disabled adults in the family it does impact you a lot differently than if you’ve got an older person.

MD Sure. A lot more of your time and energy and attention as you say. Yep.

CS Yep.

MD You yourself are an advocate for carers as well, so tell me about the role you play there.

CS Well I do it quietly. What I try and do is I think I’ve been lucky enough to be selected for the Carers Parliament for Scotland since 2012 and also I attend as many SPG for Carers meetings, which I find very informative, but one thing that I find very frustrating is the conversation hasn’t changed. It’s not changed at all since 2012. I’m still asking for and fighting for and shouting nicely for financial help, for physical help, for mental health support. Everything that I’m talking about today hasn’t changed since 2012.

MD And why do you think that’s the case?

CS Nobody will take it up. It’s like a poisoned chalice. Nobody will take up the baton it needs. This is why we’ve got a vehicle for change now after COVID. If we’re restructuring society and social care, it’s the total vehicle for change. It’s got to be looked at, overhauled and looked at holistically, financially. Nobody’s been able to take it on but now we have a chance to overhaul the whole system ‘cause if you think about it, one million unpaid carers, that’s equivalent to the NHS in Scotland. So instead of having a National Health Service in Scotland why don’t we have a national carer’s service in Scotland? That’s what we need. That’s the equivalent. One in four people are caring and unpaid. So that’s how important unpaid carers are.

MD Yep and some of the work they’re doing is exactly the same as any other key worker.

CS It’s unbelievable. It’s unbelievable, the work we have to do. I know with Paul how complexed it was.

MD And what about some of the carer’s organisations across Scotland?

CS Well the thing is, these carer’s organisations are fundamentally probably plugging the gaps in social care because as I said, third sector community care has eroded. I mean, there’s a paper I read years ago, a Griffiths report, to care everybody’s child but nobody’s baby. Nobody will take on the gaps in community care, so when it comes to these wonderful third sector organisations that are taking up the gaps in community care, taking up the gaps and helping, they themselves will be under pressure just now because the revenue will be lower. They’ll have more pressure ‘cause more people will want their services, but where’s the funding coming from as well? So the whole system needs to be overhauled and looked at, but it has to have carers speaking at the sharp end and the people that are writing and looking at the recovery plan having carers at the heart of the discussions, because we’re the unpaid workforce basically, and as I’ve said, since 2012 there’s a lot of wonderful talk but, Michelle, I’m sorry but it’s only talk, and yesterday when I’m reading all the lovely thanks and thanks for all the lovely work that you do, you unpaid carers, we don’t need thanks, we need financial support.

MD Yep.

CS We need our health looked at. We need a whole systematic change in how carers are viewed. Fundamentally this needs to stop because we now know that fundamentally it’s the lowest paid and the hardest workers that are the front services that have kept the society going for the last three months through lockdown.

MD If anything, I suppose this was my final question to you, do you think that the pandemic offers any opportunities for the future?

CS It has to. It has to. There has to be a change, not just for unpaid carers of disabled people, for society as a whole. A paradigm shift is what’s required. A whole overhaul. A whole new look at society and fundamentally because we’re speaking about carers and it’s Carer’s Week, if ever there was a time for pivotal change fundamentally it’s now, because nothing’s changed for us. Our role as carers has got fundamentally harder than what it ever was before. We were already in crisis before the pandemic and this pandemic’s now highlighted just how much we need to have our voices listened to and to have effective change in society.

MD Well, Celia, that’s all my questions for you. Thank you so much for taking the time ‘cause I know you’ve a very busy day there supporting Paul, and it’s a difficult situation that you’re in and especially given the current crisis that we’re in. So big thanks to you for speaking to me.

CS Thank you, Michelle. Thanks very much. Take care.

MD Bye.

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