Lorraine's Story of overcoming burnout from Caring

Lorraine shared her experience as a carer for her mother, who deteriorated health-wise after turning 80, requiring round-the-clock care. Lorraine and her two sisters took turns caring for their mother, often at the expense of her own health and the impact that had for Lorraine's mental health. The COVID-19 pandemic exacerbated the situation, leading to increased stress and isolation. Lorraine shares her story of living through burnout and reaching her breaking point and emphasized the importance of recognizing the signs of burnout and seeking help. Despite the challenges, Lorraine highlighted the need for making good memories and the eventual recovery process.  She urged caregivers to seek support early and not feel guilty for taking breaks and you will get through it you just need to give yourself time to heal. 

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Transcript

Cheryl  0:00  
Hello and welcome to this episode of carers voices. Today, I'm joined with Lorraine, who's going to share her story about when she was a carer and how she found herself after her caring journey ended. So Lorraine over to you to tell us a little about who you cared for and for how long.

Lorraine  0:19  
Hi. Hi, Cheryl, hello. I was a carer for my mum, and that was for quite a long period of time. Mum enjoyed quite good health up until she was 80, about 80 years of age, and then after that, she sort of deteriorated, had pneumonia, then went into heart failure. And gradually, gradually, gradually, had to have some input from carers. She lived hundreds of miles away from where I was living, at a time which would be down in Stoke on Trent. So you're probably looking at about 800 maybe something like that, miles away. And as her health deteriorated more and more, we found that as a family, we were needing to supplement to feel like the support that was being given by the carers going into the home because she was needing more 24 hour round the clock care.

My mum used to be a carer for my dad, who had dementia, and she looked after him at home for about 10 years until he passed away, and she always used to say then, not that we weren't to become her carer, that she would want to go into put her into a care home. However, as I think a lot of people will find out as they get nearer to that age and nearer to finding that they needed more help. Mum was dead against going into a care home, and she just wanted to stay at home. So I've got myself and my two sisters,

we would talk together sort of quite frequently and think about how we were going to manage this, because it's mum's wish to stay at home, so we really did not want to put her into care home. One sister stayed at home. There was myself and another sister that lived down in London. So we would take it in turns to go up and down the country and try and cover as much of the the weeks and the month as as we could to care for mum.  So that that used to take up all holidays, any time off from work, you know, because I do work, I would work three days a week then, but then any holidays I had was always spent going up there and caring for mum. Any time off we had at all would be spent going up there and Caring for Mom, the same with my other sister. Mum's health deteriorated even further. She she had problems with her heart failure. She had problems with her joint she couldn't her mobility got even worse. She also couldn't see. She had macular degeneration, so she had very poor eyesight. And her hearing was not very good either. So she couldn't hear very well. So she had a lot, lot of things going on poor Wifey, I would say that we really had to sort of go up, maybe during COVID. 

Yes, during COVID was, was the worst time then, because Mum deteriorated quite badly, and of course, you weren't allowed to travel anywhere. So my sister it was down in London, wasn't able to go up, but once we got the okay that we could travel, I did. And so it was down to just myself and my other sister looking after mum. So I would take time off from work. Work was very good that they would allow me the time to take to go and look after mum and stay 

Cheryl  3:58  
How long were you there at a time? 

Lorraine  4:01  
Well, I was usually there sort of three weeks, maybe at a time. And then towards the end of mum's life, I think I was due, I had just done like a two month stint up here, continuous while trying to work at the same time. And I think that's when it started really taking an impact on my health, mental health, I would say, without me really realizing that it was having a huge impact.   Thats kinda what I wanted to get over to people today is yes you are a carer but you are not superhuman you are human as well its to try and recognise and realise when things are getting too much for you and taking action to dealing with that and just keeping going and keeping going and keeping going like I did because eventually it will break you, your body does take over and it will win unfortunatley which is what happened with me

because there was a lot to do, as I'm sure other carers know out there, you have a lot of things to sort out and organize and trying to get support in the House for mom and trying to get well. At one point she was in hospital, and didn't want her in hospital. Just wanted to get her home. So it's the fighting to get a hospital bed, to get all the equipment that you need to deal with her, to get Sara Stedy, first of all, then to try and get hoist everything was a fight, a fight, a fight and a fight to get some extra carers in, because when she needed the hoist, of course, I couldn't do that on my own.  It was just very, very challenging and very draining, and at the same time trying to get some work done as well.  Mum didn't sleep very well at night, she would quite often waken up several times through the night. We had a baby monitor so you could always hear her. If she was moving, you would come down and see what she wanted. So lack of sleep is a big thing that I'm sure a lot of carers find that as well, and you're just sort of trying to be a jack of all trades, chuckling, work, juggling, looking after mom, making sure she's okay, juggling, keeping the house clean, doing the cooking, shopping. It's it all still needs to go on.

So it was quite, quite difficult, quite challenging at times. Has a massive impact, I think, on the family as well, because we were finding as sisters that we weren't always agreeing, that we weren't always getting all on the same page. And so there would be bickering and arguments, and you know, it wasn't always a great atmosphere to be in about. 

Cheryl  7:01  
So the arguments that you had with your sister, in the bickering was over big things, or was it just small things or just things in general? 

Lorraine  7:07  
It would be a lot of things in general. Some things would be small things. Other things would be big things. Like, mum wasn't breathing very well, I would think that she needed a bit of oromorph. Maybe another sister thought, oh, I don't think you would be giving her oromorph and saying, Well, you know, I think she does. I'm going to give it to her. And then her mum slept for a bit longer. See, gave her too much in the Oromorph. She didn't have the oromorph Because she's sleeping all through the day, but she settled. But, you know, oh, so you would, it would just get very upset. Now, it probably seems like nothing now, but when you're absolutely shattered and tired, and been doing it for, you know, a couple of months, 24 hours a day, non stop, it's it just gets at you then and is eating away at you a little bit every day. And I was really finding it difficult. I was getting tired. We were often up, like I say, multiple times during the night we would we had worked out a rota where somebody would be on in the morning, time to cover the morning time, somebody would make the lunch, somebody would cover their afternoon and evening. Then somebody would be on at night time. We take interns who was going to do the cleaning, and sometimes it would get done. Sometimes it wouldn't sometimes, I think again, it was all part of my anxiety. I think that I was feeling that I would just take it, can start cleaning the whole house from top to bottom, just to be doing something. But I didn't really know why I was doing that. Yeah, and then that would say other people, then my mother's sister, would think, what you doing on the cleaning for we could do that. It was just crazy. It was just no need for the arguments, really. But I suppose we're just all trying to cope and deal with our own issues and our own ways. But as mum needed more and more care, and it was very difficult to look after her and to try and distract her, because she had her dementia, and so when she would be hallucinating, she hallucinated a lot, and would be looking back and remembering things. And it's, it's difficult to try and distract her, which is what you're supposed to try to do. But if you've got somebody that can't see and can't hear, can't walk, can't go anywhere, it's, it was really, really difficult.

The early days, used to do it fine, you know, you can think back and think of the good times we had with her when we used to, you know, I would record her singing Happy Birthday to one of my sisters, you know, and she loved that and but she deteriorated very quickly where you just wouldn't be able to get anything like that out of her. But I started going more and more into myself, I think, and just isolated myself from my sisters, from mom, even as well. When I was looking after I would find myself just sitting in the chair, and that would be it. I couldn't interact with mom. I couldn't do anything. Uh, she put her hand out. She always wanted you to hold her hand. So I would do that, you know, but I just felt I don't, I don't even know what it was, but I felt I'm just trying to get through every day here, and that's just what I'm sitting here, trying to not fall apart. I think that is what I was trying to do. And I thought if I started talking to her or talking about things gone by, I felt I'm just going to fall apart here, and that's no good to mum. That's not helping her. But equally, me sitting there, saying nothing, looking miserable, trying to suppress it all, feel Yeah, equally, wasn't helping mum, but I couldn't see it. But my other sister could, she could see how I was, say, deteriorating, really, but, you know, sort of going more and more within myself, and we were trying to work out a way to how we could deal with that and keep off, because I didn't want to let anybody down. I didn't want to take any time away. I didn't want to go back home and leave them to with it. And as I kept saying to my sister, I'd want to do my bit. I need to do my bit. I need to be here. It's what mom wanted. I don't want to be the failure. I don't want to be the one, you know, running away from it all.

So it was, it was hard, but we had spoke about me maybe taking a few days away, just having a break because I'd been there for like two months or more on my own, you know, sorting all of this out and supporting mum. So we had agreed that I would take maybe five days away where I wouldn't be in the house at all. And that was the other thing as well. Is because we were in the house, and it was COVID times, there was nowhere to go. If you had any time off, you couldn't go anywhere, you couldn't do anything. So we were just in the house. 24/7, so even though you were on your time off, if you like, you can still hear what's going on. You can still hear if mum's needing something. So you'll still go down and and help if she needed to go to the toilet, because you had to have two of you to use a hoist and things. So you were never really getting an absolute break. So we thought if I had a few days away, that would be perfect. So okay, but lots of tears and lots of cry and lots of upset at how I was feeling, at how my sister was seeing I was feeling, and felt like she couldn't do anything about it, and just the whole thing, it's just it was just horrendous, really, in it, and just feeling that you were a failure because you weren't managing. You weren't managing to be doing what you should be able to do, is what I felt. But so we'd agreed I would go on this few days break. But unfortunately, that didn't happen, or had a minor incident. Probably would be with one sister who I overheard her saying something derogatory to my mom about me and how I was, and I think that was just a trigger for and it just triggered me, and I just had a massive breakdown. I can only describe it as where I was just screaming and screaming and screaming that I can't do it, I can't do it, I can't do it, I can't do it. That's all I could say, shaking, screaming, shouting, and my other sister just came and took me, and eventually I calmed down and just I can't I can't do it, I can't do it, I can't do it.

And so that was when my husband then came up and took me away from it. But, you know, so it's just saying to people recognize, do recognize when you're feeling that it's all really difficult and it's all really hard, and allow yourself to say that that's okay. You know, it's okay to be finding it hard. It's okay to be feeling like you're not managing, or that it's difficult and you don't want to do it anymore. That's okay. You have to look after yourself, because if that was only me there looking after mom and I was as bad as I was, what I wouldn't really be able to look after her anyway, even if I wanted to, I was in no fit state to be looking after her. So you need to look after your own well being and get support and get help and don't feel bad and don't feel guilty if you have to step away for a small period of time, it's not saying you're going to have to stay away from them forever.

You might just need some time to get the support and be able to process what's going on, whether that be, you know, medical support or counseling, which I had both, and they worked very well for me. But you know, you do need to recognize that you're not superhuman, and it is.

I must Imagine Dragons would say it's okay not to be okay, you know it is, and to admit it as well, and just get help so that you are able to look after yourself, take a couple of weeks away if you need to, and then you might be able to come back and carry on doing what you were doing without getting yourself absolutely broken and into a deep, dark hole that was very, very difficult to climb out of. Really difficult.

When I went home. It was just awful. I mean, I had been not really eating properly. Had been binge eating at night time, just discomforting. I would have bags and bags and bags of Sweeties, big bags of crisps, packets of biscuits, and I would just binge through them all of a night time, not getting any enjoyment out of it. But again, I don't understand how the brain works or why I thought that was a good idea, but it's just something that you do. So there was a lot of issues that I had to deal with. Then when I came back again, it being COVID, there wasn't ready access to mental health support, but I did get a private counselor that gave me a lot of counseling, and it was very good. You know, eventually I did get there, but it was a long, long haul. Luckily, I have a very supportive family as well that was just there with me all the time, very supportive even when I'm in my deepest, darkest days. My daughter always says that she remembers when I just used to sit there and say nothing and just stare out the window. She said, I remember. That's all you used to do all day.

I think maybe sometimes she wishes I didn't know that I may be shut up about and didn't get on at her quite so much. But no, but I don't really remember. I don't I have not a lot of memory about what exactly I was like when I came back. I just remember sitting and sleeping and sitting and sleeping and sitting and sleeping, and that was about all that I did for a long time.

But it is important to access help and access support and talk it out and process everything, and there is light at the end of the tunnel. I thought there wasn't. I thought I was never going to get back to to be in the Lorraine that I was before all of this happened. But you know, I did. I don't know when you can't, sort of sit down on a date as to when that got there. But you know, I did get there. There were days again, and I remember is doing the dusting of all things, dusting in my bedroom I was and then just sat down on the chair, just getting really upset and crying. And my husband said, What's the matter? And I said, I think Lorraine's gone, and I don't know if I'm ever going to get her back.

Yeah, I don't think she's ever going to come back. 

Cheryl  17:58  
So when you first went home,?

Lorraine  18:00  
 I think that was quite a long time after that, to be fair. I think that was more than I was functioning if I was dusting, so at least I was doing something. I wasn't just sitting there, but I did, and I really did think it's just never going to happen and just completely broken. It's never going to come back, you know,

 but she did when I'm here now, and it unfortunately, I didn't get back to mom before she passed away, and that was a big thing. 

Cheryl  18:33  
Did that impact on how you were feeling as well? 

Lorraine  18:35  
Yeah, massively, massively, because you do feel, you know that's when you get the guilt. It's because I left, I left my two sisters up there to to look after her. In fact, probably only really one sister did the looking after Mom, if I'm honest, but I felt bad that I'd left her with that. And so it is guilty and feeling bad, but eventually when you're coming around to right frame of mind. You're knowing that. I'm realizing that I wouldn't have been any good up there anyway, and I would be more of a hindrance, because then she would have been worrying about mom and worrying about me, and that's that's no good. So I knew, I knew eventually it was the right thing,but so hard. 

It's just so hard not to feel bad and not to feel guilty about you know, I should have been there. I should have been there. I always feel bad I wasn't there for my dad when he died again that he was in hospital at the end, and my mom had asked me to come with her. He was in hospital in Inverness, and we went for a couple of days, and it was just awful watching him, how bad. And again, I said, I don't think I can go back another day, so we didn't, and that was the day he passed away. So there's a lot of residual guilt, and now I had the guilt of that as well. So I did have a lot of issues.

Was at her to deal and walk through and and sort out, but just, just don't give up, and don't think that there's that it's going to be bad forever, because it won't be. And it was a good ending, you know, mum, mum died very peacefully, and she was at home, which is where she wanted to be. So it was a, you know, the result was good, but there was just,I don't know. There was just me that spoiled. It all I suppose.

Cheryl  20:29  
I wouldn't say spoiled it you were dealing with all your emotions  being a carer and figuring your own journey, it's difficult.

Lorraine  20:36  
 And the other thing, as well as I don't think I ever really thought of ourselves as being a carer.

And it was only when I'd been to counseling before that the little lady had said, Do you ever just go up and visit your mum? And thought, do you know, we don't, don't just go and visit her. It's always up doing, you know, like caring of some sort, sorting out something, doing something. There was never just mom and daughter time, really, which is quite sad as well, that you think, gosh, yeah, we missed out on a bit there, although we did try to do a lot of fun things, and we did do a lot of fun things, and we've got a lot of good memories. You know, take photos. Do videos. Have fun when you can, because you don't know how long you're going to have them for. So it's important to make good memories, so that then when you are better, you're not just looking back and remembering all the bad times that you can see. There was a lot of good fun times in there, because initially, all I could think about was that last two months and how horrible they were, and how awful I was, and how I was no good to mum whatsoever.

But you will get clearer. Stick with it, work on it, and you can see that actually it wasn't all bad. 

Cheryl  21:58  
How long do you think it took you to get Lorraine back, 

Lorraine  22:01  
I'm going to say a good two years, a good two years before I was back, where I could think, this is me, and not just me, pretending to be me, which you do a lot of the time as well. You can put the face on and act like you're all good until you get home, and then you can be yourself and think, Oh no, I would say, a good two years. 

Cheryl  22:26  
And is there any way of like, can you look back now and see the warning signs that you were beginning to spiral, whereas, if somebody was identifying that, that they could maybe seek help from somebody now, 

Lorraine  22:40  
I think looking back, if you're starting to get really tired and really a bit short and a bit snippy, then you're thinking, that's not me really. 

Cheryl  22:53  
more than just on the odd occasion, 

Lorraine  22:56  
more than just on the odd occasion, if it's just consistent, if you're just sort of thinking or finding yourself just going through the motions without a lot of emotion. If you're like you need to, you need to be looking for some help. Even before that, if you're just thinking to yourself, you're finding it hard. If you're even fine thinking that this is hard, act on it. Act on it right then, because it's only going to get harder. So you need to start looking after yourself right from when you think, I'm not sure I can do this, I think this is quite difficult, and don't think of yourself as a failure, because you're not a failure. You've done your absolute best that you could ever do, and even though you might feel it's notit's not quite enough, but it is your best.

Cheryl  23:52  
 Is there anything else that you'd want to share with us? 

Lorraine  23:55  
I don't think so.

Cheryl  23:57  
Thank you very much for being so brave and so and about your experience with being a carer, and hopefully it helps somebody else who's maybe reaching burnout to get support that they need as well. 

Lorraine  24:08  
Let's hope so. 

Cheryl  24:10  
Thank you. Lorraine, 

Lorraine  24:11  
thank you.