Claire's Story Your Story is a series of interviews with carers. We want to hear your stories and promote the amazing job that carers do – if you would like to share your story then get in touch with Tara at [email protected] In this post we hear from Claire. She has been caring for her parents for the last seven years. In February 2019, her partner Tim had a severe and life changing stroke and she has been caring for him for the last 16 months. Claire’s story Tim has limited mobility and no use at all of his left hand and arm. He doesn't need personal care. If I am not at home, Tim is housebound. He can do some other things for himself but all of that is dependent on his fatigue levels. Everything he does takes many times longer than it used to and is fatiguing. Things can go very wrong very quickly if he is struggling. Some days I might have to be doing everything, others he might do a bit more. I'm responsible for his drugs as well primarily because he cannot easily get them out of the packet or fill the dosette box. I'm also responsible for checking the auto repeats have gone through. Usually they are delivered, but due to the pandemic, as I am available to collect them, I now do that too. I also do all of the driving and take him to his appointments. Emotional effects of caring Being honest – being thrown into this out of nowhere destroyed my life as thoroughly as Tim's stroke destroyed his and our life together. It's had a huge effect upon my mental health, which was shaky to begin with and I was already under severe stress due to my parent’s health problems and care needs. I still have not come to terms with what happened and more recently I have discovered that I am suffering from symptoms of PTSD and have been since his stroke happened. I work full time, last year I was off work for 5 months, returning on a phased basis but the longer I continued to work full time hours, juggling commuting, caring responsibilities as well as other issues with my father and my father in law and finding that the nature of my work also triggered my PTSD symptoms, by mid-March I had a breakdown and was signed off work again. I am still off. Caring during Covid-19 The pandemic has had a strange tug of war effect on my caring role and the emotional effect it has. On the one hand the absolute forced stop has enabled me to stop the ridiculous pre-corona juggle, it's enabled me to break away completely from the difficult caring role I had with my Dad because I simply cannot go to him (he is not local, we're all vulnerable households). As the lockdown has gone on, I have found I have been able to look at my mental health in a more constructive way. It has meant I can also examine my relationship with my job too which I clung to as the only 'normality' left to me. I know that being signed off work has allowed me a lot of extra time as I would otherwise be working from home. The extra time has meant I have been able to reconnect with the hobbies I used to enjoy and being able to do some things just for me – something that was totally absent before lockdown. I'm also about to start a course of treatment and begin preparing to return to work. On the other hand, there is this underlying fear and anxiety about what might happen if either of us caught corona. Tim is extremely vulnerable and whilst not considered a shielder by the government, if he caught it, it could very well be the end. The other fear is, what would happen to Tim if I caught it. No-one knows how they will be affected by it unless they catch it – a situation we do not want to be testing out. This is a very precarious way to live. There's also the uncertainty of whether we will have an outdoors future in the way non vulnerable people will potentially have – a return to a family life, social life. Not being shut ins. The other fear we both hold is what happens to our parents – the bulk of my caring role for my Mom ceased some time ago when she went into a care home. Tim's Dad went into a permanent placement just before lockdown. Both these homes have had covid-19 cases. My Dad, apart from a visit a couple of times a week from a relative, is effectively on his own. (he refuses to arrange formal care visits) Physical effects of caring I am utterly exhausted – 6 years of really difficult times with two difficult parents at the same time as being a single parent to a teenager, working full time in a pressured and complex job, trying to have a life of my own as well, then having caring become, overnight, the basis of my entire life. I struggle with any of the physical tasks around the home. I can't keep on top of the jobs I need to, I now find I cannot work, although I must. The physical impacts on the emotional and psychological and vice versa. Financial impacts I clung to my job and financially we do need my job very much. Tim's stroke itself had a financial impact anyway – he spent over 6 months with no income until his medical retirement was confirmed, but even with a pension and benefit entitlements there is an ongoing albeit lesser impact. As I was off work last year, this year I am not entitled to as much sick pay and it will run out this month, yet I am not ready (afraid even) to return to work. We can float that for a month, maybe two, but then I must return whether I am ready or not. This is something that carers face all the time – it is not just the financial impact of leaving work or reducing the hours they work – it is the perceived loss of self that comes with the inability to be the employee they were before, the inability to give to the role what they had. I can see I've gone into third person here – this is the exact thing I struggle with – I feel I have lost something of myself if I have to give up or reduce my role or my hours, as well as the loss of earning potential that at 51, I am never going to get back. It is the absolute end and loss of the life I had and the self I was if I have to give up or change something – my work is the only thing left to me that is all mine and was always all mine for the last 32 years. Finding Worcestershire Association of Carers I was aware of WAC whilst Tim was still in hospital. There's always leaflets and information available, but I think it was a referral made by our Stroke Association rep, which was the initial contact. I had some support calls initially and also joined WAC. They are now 'hands off' in the sense that I express my need to them, rather than receiving random calls. I can talk about how I feel, how I am getting on, there's signposting of appropriate resources. I watched my Dad struggle terribly to care for my Mom, refusing all outside help – why would he bother when he can get me to do it? So when I was thrown into it myself it I had a terrible fear I would be just like him, I still fear that and honestly – I did not cope, I was rubbish at it and still struggle with it. Caring with Confidence I wasn't ready initially, but towards the end of 2019 I joined the Caring with Confidence course – and I am really not a joiner. One thing that comes with this sudden life change is a lot of anger. Lots of feelings of injustice, why me and I do not want to do this, this is not what I wanted in my life. Meeting other new carers as well as experienced and ex-carers gave me some reassurance that even the worst feelings I was having were completely normal. The course gives you the opportunity to say what you feel and explore what you feel in a safe and non-judgemental space. The course gave me information and resources – things I probably would not have otherwise known. I can't support Tim by myself – although I do, but there is a safety net there that simply was not there for my Dad because he refused to consider it. The course also led me to an opportunity to sign up for a mental health first aid awareness course with Mental Health Foundation England so I am also a mental health first aid champion. The other thing it did was help me recognise and acknowledge I was and still am grieving. It's the first step into helping my own mental health. Advice to other carers I'm not sure I can give advice – I am struggling, I haven't coped, I'm still new to this, I'm not well. The only reason that I feel a little better now is because of other circumstances putting a stop to the frenetic juggle I was having. I would say do your best to get on the Caring with Confidence course, I know it's over zoom at the moment, but get on the course, it made a huge difference to me. Something said to me by one of WAC staff – what was normal before is simply not relevant now. I had never even considered that. Clinging on to the 'normality' of my long-held job actually kept me stuck and was a contributing factor to my breakdown in March. Someone else also said to me, they looked at work from the perspective of well I will be retiring in a few years and was planning to gradually reduce before then, it just came a few years earlier than planned. They adjusted their expectations and were able to make some changes that benefited them. I couldn't do that – I was still determined to cling to a normality that was gone forever. Try not to do what I did. The pandemic and lockdown has since given me the opportunity to explore that one. Expect your employer to look at you blankly and say, oh are you a carer then? That will tell you how much planning and negotiating you need to do around how to successfully combine work and caring. You need a safety net, especially if there aren't any other family members who might be able and willing to share some of the role. Join WAC, get informed, use the support line. Knowing that every single other carer has the same sorts of feelings and it's normal is a burden released in itself. Come to terms with respite – I know at the moment it isn't happening but its an opportunity to think about how that might look. My parents absolutely refused to do it and I could never understand why. Until I found myself in the same spouse caring role and suddenly I got it. If I went away anywhere I want to share that with Tim – why wouldn't I? Taking time for yourself We all need a break from the 24/7 responsibility. Even when I'm at work or at the supermarket or out with a friend, I am still responsible, it weighs on me. Non-carers will never understand that aspect, neither would parents of a fit and healthy child – eventually they grow up and leave home. This is forever. I had a night away on a work do earlier this year, Tim stayed at home on his own. I did agonise over it, but he was also at home all day in the week when I was 20 miles away at work. Looked at that way, it seemed an acceptable risk and, everything was fine. I had a good night out, a nice hotel room and more importantly, a breakfast not made by me! The other thing is no one can force anyone to do this. It is not a legal obligation nor even a moral one. Even though we do what we do for our loved ones, it is important to remember that caring for a vulnerable family member is not something that is part of the normal course of family life. Don't let anyone convince you it is, because when it happens it is sudden, out of nowhere and life changing and if someone has not experienced it, frankly, they know sod all about it. Even your best mate, favourite aunty, or your parents and children. Not medics or social workers – they might be experts in the consequences of a life changing injury or medical condition, but they know nothing about what it means for the carer. I've cried in appointments because it's been more bad news and just been stared at by the doctor – they didn't see how I felt, there was no acknowledgement of how I felt. See your friends and family, go out with the person you care for if it's appropriate for them, schedule time for your hobbies – Tim naps every day – that is my me time to do anything I like including going out for a while. Get the benefits you're entitled to and wider financial and legal advice suitable for your situation. Join the local carers group – I couldn't, I was always at work. Have a voice, even if you're new to it like me.