Transcript: Experiences of unpaid carers during Covid-19

Podcast Episode: Experiences of unpaid carers during Covid-19

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.

MM - Michael McEwan
AD - Alex Davis
FM - Frank McGowan
LC - Liz Carson

MM On this episode of Iriss.fm I took time out to speak to unpaid carers to ask them how are they coping with the whole coronavirus. So first up we’re going to hear from Alex Davis. Alex is a full-time carer for her son, and her son’s name is Benjamin. So now we’re joined by Alex. Can you tell us what support you are getting at the moment?

AD Sure. Hello everyone. Yeah, so I have a little boy, Benjamin, who’s six years old and needs basically support with everything that he does, and usually we would receive ten hours of self-directed support a week. So that would be one hour in the morning and one hour in the evening every day of the school week, just to help get him up and ready and do all the medical care that he needs before school and get him off to school in the morning, and then again to do all his medical care and put him to bed, give him a shower and get him to bed in the evening, because those are the two busiest times of the day in our house because I have two other little girls who are eight and four, and trying to get them fed and to bed and everything at the same time as Benjamin would be really, really tricky. So at the moment because Benjamin is in the shielding category for coronavirus we decided that we will cancel all our care and care support to avoid the risk of people coming into the house and potentially passing the disease to him. So that means that myself and my husband, but primarily myself, have to do all of Benjamin’s care that is normally done by the carers, and as I’ve said, that’s at the really busy time of day when I’ve got two other children needing a lot of attention as well. So it basically means the start and the end of every day is a mad rush and is really quite frantic, just trying to get everything done. It takes a good hour to get Benjamin ready in the morning. He needs like chest physio and nebulisers and all that, and at the same time as doing that I’ve got two girls screaming for their breakfasts. So yeah, it’s just a whole lot busier and a whole lot more stressful.

MM So you were saying it’s stressful for you and your husband as well. How have you been adapting to all of the coronavirus?

AD I guess we’ve just slowed everything down quite a lot and we’re just not attempting to achieve as much in any given day, ‘cause we just haven’t got the hours in the day to do it. So whereas before, everyone would have been up and out of the house by sort of quarter past eight every day to get to school and to work, now we’re rarely starting before half past nine. We’re just taking everything that bit slower and trying not to worry about what we achieve during this time, as long as everyone is safe and everyone’s fed and everyone’s happy, making that our priority rather than what we actually manage to do.

MM So what would you like to see when we eventually come out of the back of this, for people with disabilities but also you as a parent but also a carer as well?

AD Well I hope there’s a whole lot more recognition of what carers do, and carers of all sorts, whether that’s people working in care homes or agency carers or family carers, because I think for a long time the things that we do have been pretty invisible to the general public and not recognised by the government either, and certainly not funded particularly well. So like the amount of payment people get through carer’s allowances really is not enough to live on by any stretch of the imagination. So just a lot more understanding and acknowledgement of these kind of roles, that we are key workers like all the other key workers, and hopefully we’ll be appreciated a wee bit more after this.

MM Next we’re going to hear from Frank McGowan. He is a carer for his older brother and we hear his story of lockdown. Okay, so we’re now joined by Frank McGowan, and Frank McGowan’s a kind of carer for his younger - is it younger brother, Frank?

FM He’ll kill me for saying this but he’s older!

MM Alright.

FM My older brother.

MM So what support have you got just now, Frank?

FM Well we’ve kind of always been self-sufficient as a family. We don’t have any extended friends or family. We do have family but they’re in different countries around the world and they’ve got their own families. So it’s just been myself, my brother and my best friend, who I work with creatively, and we’ve been a household now for twenty-eight years. It makes me sound so ancient when I say that, but we’ve been a wee surrogate family for twenty-eight years now and it’s just been us. We were teenagers when we first started caring for my brother, and we tried to get social work support and support to help us because we were under sixteen at the time when we took on the household. We didn’t have any support but we managed. We had really good friends around us. We had really good role models and people who we’d grown up with who were there to support us, older people, and we did well to begin with. We weren’t living in the land of luxury or anything like that, but we did manage to make ends meet. My brother’s condition, it’s a brain injury from when he was a child. Part of a building had actually collapsed and fell on top of his pram, so that caused injuries to his brain. They weren’t picked up on for a couple of years until he was an infant, and from then my mum took on bringing him up, and this was in the sixties, and my mum had said various times, she said the amount of people that said to her, “You don’t want a disabled child. Really, are you going to go ahead with keeping your son?”, and my mum was horrified. She was like, “Of course. He’s my son. He’s no different to anyone else. He might have different needs, different physical needs and emotional needs, but he’s still my son. Of course I’m going to take care of him.” So my mum brought up my two brothers, who are twenty years older than me, from the sixties through to the eighties. Now I came along as a miracle baby. My mum thought I was a bad curry, and then the next thing it’s like, “Well, you’re pregnant.” So I was a wee miracle baby that came along, and we lost my mum when I was twelve. So my dad had taken on the role as householder but my dad’s got addiction problems, alcohol problems, so he wasn’t in the picture for very long, and then like I said myself and Michelle, my best friend, took over, and my brother’s fantastically resilient. Fantastically resilient. He’s one of the most emotionally well rounded people you can meet. He’s a happy chappy most of the time. He does suffer from mental health issues, like we all do to varying degrees, but he’s got a great outlook on life and he’s been looking at the coronavirus as more of a challenge than anything else. “We’ve got to be safe. We’ve got to stay safe but we need to do our part, and it’s just a challenge that we need to overcome.” He’s refreshing because some days I’m going out and I’m on the frontline with things, helping out and foodbanks and things like that, and my brother’s saying, “You’re lucky. You’re very, very lucky. This is what you should be thankful for today”, and I’m like, “Actually, you’re right. Totally.” He’s giving me that kind of boost to go out, but he’s an incredibly resilient guy. I take my hat off to him.

MM What issues are your brother and obviously you and your pal facing at the moment?

FM It’s been quite difficult because we’re shut off from engagement, and my brother’s quite a tactile person, quite a sociable person. So before this he hadn’t been out of the house in nearly two years following surgery, and just as he was getting back on his feet and able to walk on his own independently and go out, COVID-19 hit us. He was like, “Okay, I’ve waited this long. I can wait a little bit longer”, and it’s meant as well for things like support through social work services, which we did reach out to just because myself and my friend are working and we want to make sure that someone’s there for Adam when we’re out, that’s all been stopped so there’s no support available, and it’s frustrating that this has happened but it makes me think myself my brother and Michelle, we’re very, very lucky as a household because we’ve got each other, but there’s some people out there who don’t have anybody, and that made me kind of think we need to start knocking on doors and checking that neighbours and friends are okay, local to us. So we’ve been doing that and that’s kind of created a little pocket of people who are all checking on each other now. It’s kind of grown its own wee community, and all this started from Michelle saying, “Maybe we should get some food out to some of the people on the street. They need it and they can’t get out. Some elderly people, some people with disabilities and lifelong health conditions. Let’s go out and get some food in for them”, and now it’s created this wee kind of pocket of community that if it wasn’t for COVID-19 we wouldn’t have met and we didn’t know were there.

MM Right, okay. So are you basically saying that your brother had support from the social work department, that it kind of stopped?

FM It did stop quite abruptly but this was quite a while ago. Basically there’s a lot of let’s just say red tape we’re aware of, and what would happen is every year or so the phone would go and it’d be, “Hello, it’s such and such calling from social work services. We understand you’re on a waiting list for some support services. We want to get that to you. We’re going to send someone out to give you an audit and see what support you need.” They come out. They meet everybody in the household. They even meet the dog and they take their notes and they go away and then they just don’t come back, and then it’s six months of me chasing it up, and then again maybe a year later someone would reach out to us and say, “We’re here to help. Can we come out and speak to you about what your needs are?”, and again they come out, meet us. They’ve very, very nice people but then they’ve moved on and then it’s another year waiting, and then this has been happening consistently throughout my brother’s hospital stays when he got out the hospital for being at home. So there were points we were struggling ‘cause I’ve got some health conditions myself so I can’t lift my brother, and Michelle, my friend, she’s quite slight and quite small. So together it’s quite a struggle for us when my brother is more physically needing the support, and we couldn’t do it and there was no support to help us. So we raised quite a lot of these issues with social work services and a lot of the third sector people we’ve been in touch with to say this is lacking, because this is someone who’s got these physical and emotional needs, and myself and Michelle were able to correspond on his behalf, and be quite feisty as we did it. I wonder what’s happening to the people that don’t have someone fighting their corner like this. Are they just forgotten about? Speaking to people in our local community, that kind of has happened, ‘cause we’re from the north of Glasgow. There’s great resources out there but there seems to be a lot of breakdown of communication between these resources and the people who need them, and it’s somewhere in the middle. I think something needs to be done to kind of connect everybody again, and I think social media has been a great way to do this during the COVID-19 pandemic because everybody’s got a bit more time, everybody’s working from home, everybody’s a bit more mindful of this whole be kind thing. So people are connecting and hopefully when we come out the other side of this we will have new forged relationships, that people can say, “I know who to call if I need help with this and I know which services are out there”, ‘cause for some people they just don’t know what’s out there services-wise in their local community. I didn’t realise the amount of support organisations there are out there. I didn’t realise how many there was in my local area. I’ve went past old buildings and dilapidated centres and things like that, but inside there’s these fantastic groups doing fantastic things to connect people, and soon as the lockdown is lifted we’re going to hopefully be utilising some of those services.

MM So what would you say to social work departments or different departments within the council, but maybe outside of the council as in care organisations as well, what would you like to say to them to say what could you have done better or what could you do better now, that kind of organisation or council, to help people with a disability or kind of mental health issues as well?

FM I think I would say the work that they do is great and it’s essential and without it I can’t imagine the position we’d be in, but there needs to be some kind of more structured communication methods between what these guys are doing and the people who need the services. There’s a lot of people who fall through the gaps either because they’re not digitally savvy, they’re not able to communicate themselves and say, “I need help.” So there needs to be some kind of accountability given to the community at large. We need to look out for people who may need help and be able to kind of say to social work services, “What support services do you have in our area and how do we connect these people together?”, ‘cause I know myself, like I said, there was a lot of organisations in north Glasgow that I wasn’t aware that they existed, and now that I know, I know, and it’s going to be good when I get a chance to engage with them.

MM Now we’re going to be hearing from Liz Carson. Now at the start of lockdown Liz started to put pen to paper about her experience.

LC Okay, my name’s Liz and I was thinking a few weeks ago at the beginning of the coronavirus pandemic about my experience. I thought I would actually put pen to paper about some of the feelings and thoughts and what happened as a result of what was happening in the world, and I’ve wrote this down and I’ve entitled it, “Strength of Family and Sibling Determination.” So here we go. The last three weeks the coronavirus has taken a strong grip on communities and changed our day-to-day living in the way we have not experienced before. Panic buying went through the roof with uncertainty on so many levels of what the future holds. As a mum of a thirty-eight-year-old man with learning disabilities and physical disabilities I was beginning to feel the tremors within the social care sector. What will this mean for my son’s support in the immediate future and could this be sustained in the long-term? Coronavirus was having a huge impact on the support people relied on daily, and on the care sector. It was beginning to take its toll. For some people who are reliant on their support workers for all life’s daily living, life was beginning to be shaped on a daily basis by the latest government advice and recommendations. Planning for lockdown for people with learning disabilities and or autism, who are reliant on their teams of support, creates so many uncertainties and the disruption of daily routines. For some, this disruption can have catastrophic outcomes and lead to behaviours that stem from their lack of understanding for this current restricted situation we have all found ourselves in. The organisation that supports my son were doing their very best to put in place safe practice for everyone’s benefit, keeping their teams of support workers and my son safe. They were learning every day, like the rest of the world, with the uncertainty of what tomorrow might bring. New rules, legislation, parliamentary bills passed, isolation and lockdowns leading to protocols never being considered have been urgently invented and have become new and mandatory practice. The impact in our family gave us great cause for concern and we had to think about how my son might continue to be supported in ways we had hoped we would never have to think about. As a family, like many others, we are in regular contact particularly during this uncertain time. My daughter and I have been in regular contact, and over recent weeks were beginning to consider the what ifs conversation about my son’s support. What if my son gets sick? Who will care for him? What if his team gets sick? Who will take over his support? What if his support organisation has to provide other people to support him, will they too be infected and risk infecting him? What if I have to take over his support? Will I be safe from infection or if I, mum, have the virus, am I putting him at greater risk? What if we rotated his care and support with his family members? Is this safe for him? What if? There are so many what ifs. Three weeks ago we bit the bullet and decided what we thought was the best possible solution for everyone to keep my son safe. My daughter and her family had already been isolating for over two weeks since coming back from their holiday. It was obvious that they didn’t have the virus and they had been talking as a family about the possibility of my son going to stay with them until this crisis is all over. They felt this is a place where he can be safe. I was speaking with my daughter after a conversation with my colleague who had informed me that other people with learning disabilities were being admitted to hospital with coronavirus, were taken second place behind other people admitted to intensive care, who were displaying less intensive symptoms. This shocked me. The NHS has always had the authority to play god, deciding who is the most worthy of life. When critical situations arise and choices have to be made, they have to decide. When there is only one liver but two people who are in desperate need, how could you choose? I really don’t know. I only know I couldn’t do that job. My daughter said, “Mum, let’s just do it. Let’s just get him packed up and he’s coming to live with us. It makes sense and it’s the best thing to do for everyone.” I remember my thoughts. “I’m the only one that can do that. I’ve looked after him. I know him best. I need to protect my daughter. There’s too much for her to take on. How will they cope with their four kids and my son?” This was a huge thing they were committing to do. I realised I had to let go of locking others out, particularly around my son. I had to trust that they too could do this. I had to allow my daughter and her husband to do what they felt was the right thing. They had committed to this as a family unit, to look after my son and offer him their home for as long as it takes. I’ve tried to shield my daughter with the expectation that she would someday take over that watchful eye and be the voice of her brother. I don’t want that burden for her. I never have wanted it, even though I have many fears what the future might hold for him when I’m no longer here. I imagined everyone who has kids. No matter how old they are parents will always worry about them, but if you have kids with additional needs who rely on others for help and support, I can honestly say the magnitude of that worry is far greater and never goes away. Who will make sure he has a good life? Who will make sure he is healthy and safe? Who will make sure he has good support from people that want to spend time with him, that take good care of him, look after him and love him? This is the heaviest load I carry around and those thoughts sit on the forefront of my mind fuelled with fear and turbulent tides of emotion. My son has now reached his first marker. It’s now 3 weeks staying with his sister and their family. It has taken some time settling in and everyone is learning new things about each other. New bonds are being made and new play pals established, routines disrupted but additions are made. None of this is easy, totally the opposite. It’s exhausting but they are embracing it, rediscovering each other and they are sharing with me those gems of moments that would never have been made. I can’t put into words the gratitude I have for my daughter and all her family for doing this selfless task. I am and I will continually be eternally grateful and I’m so proud of them all. Thank you.

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