Being a carer during lockdown – Hannah Monaghan

Starting a new job is daunting at the best of times. You worry if you’re capable of the role you’ve been hired into, what to wear on the first day, if you’ll get on with your colleagues (and if they’ll get on with you), what to have for lunch and what the office etiquette is. Now imagine starting a new job during a lockdown, as well as disclosing information that tends to come out quite naturally during conversation, and you have one anxious timebomb waiting to go off.

I am currently on secondment in LUMS, a post that I knew about since January. I knew I would, at some point, mention that I was a carer for my younger sister, Christy, 25 years old with Downs Syndrome, as well as having a younger brother, Robbie, with autism. Christy lives at home with me and my mum, whereas Robbie lives in sheltered accommodation in Southport. As lockdown began to happen across the UK, as well as at the university, I nervously emailed my new managers about my living situation, and that working from home could be difficult as we all enter the unknown isolation period. I was pleasantly surprised that within minutes I had received two identical messages, both saying ‘we fully support you’. That was, really, all I needed to hear. This has made working at home under these circumstances much more bearable. Knowing my employer has my back and is allowing me to be flexible around Christy’s needs definitely took away the new job nerves.

Christy typically spends 4/5 days of the week (a busier social life than myself) at various respite centres across Lancaster. They include a rich variety of activities, from dance classes, gardening, bingo, bowling and days out across Lancashire. She is often supported by one person, and where possible the Support Workers will team up and take 2/3 service users out together. She sees her best friend, Bethany, at least twice a week – they’ve been friends since they both attended the same respite centre at a young age. On top of this, Christy spends time at Bethany’s with her mum, which I know Christy really looks forward to. Christy has always been described as emotionally intelligent, and able to gauge social situations well. She’s not particularly vocal, as she is an introvert, but engages with me by making everything a joke (usually at my expense).

We made the decision a couple of weeks before lockdown to slowly pull back some of Christy’s support; by the time we were told to stay at home indefinitely many of Christy’s centres were still open, and while making it clear she could use their services, we could see that she was anxious about the situation. My first week of work coincided with the first week of the lockdown. Christy came home after spending the day out and was extremely weepy, as well as breaking out in a rash. Once we said she could say at home until it was safe to go out again she slowly recuperated, and by the end of the week was back to herself. It can be hard to understand what she is feeling, and to try to communicate what is happening without being patronising.

We’ve explained the current situation to Christy as much as we can, without needlessly plying her with details – she is aware that we have to stay inside because there is a virus, and that we need to wash our hands. She understands we aren’t able to do everything we normally do, and that I have to work from home. Her mood has improved over the last couple of weeks as she navigates the situation, and as a lady of leisure is enjoying being able to wake up a bit later and take her time in the evenings to have a long bath and listen to music as loudly as she likes! To better structure her day I bought a wall planner from Amazon, colour-coded it and asked her what she would like to do. While she would happily listen to Abba all day and watch Mamma Mia, together we in-cooperated aspects of her care that she really enjoys. I write in when I am busy with meetings and she knows not to disturb me, as well as things such as what we are having for tea and who is taking the dogs for a walk. This way she knows what we are doing as a family, as well as where she can join in. We’ve baked, done the gardening, tidied the house, played with a long-forgotten Chemistry set, tried to fix our games console (and failed, miserably) as well as decorate our spare room with bright pink chairs with matching décor. I’m also flexible with her schedule, too; if she decides one day she doesn’t want to do any gardening but wants to sit inside and watch a film that’s fine. She is an adult, and while she currently has little routine it’s important she enjoys what she is doing without lockdown feeling like a horrible regime where she is forced to be with me. A lot of her care at home is about striking a balance, and making her aware she has different things she can do if she so wishes, but making sure that she does something stimulating or different where possible.

As well as making sure Christy doesn’t become a couch potato it’s been important to keep my manager updated, too. I put ‘blocked times’ in my Outlook calendar, where possible (aptly named ‘Christy time’) where, if Christy is up for it, we will do something together. I try to schedule such things for the afternoon, or take an extended lunch. This allows me to break my time up during the day to be able to fulfil my work duties, as well as my care at home. Putting things in the diary gives my colleagues a sense of when I will be unavailable, and that I’m in touch with them at a time when keeping in touch is more important than ever. While this has been the strange way to start a new job, knowing that my colleagues also have caring responsibilities such as children or elderly relatives has made me feel part of a community I haven’t come across in quite the same way. Christy’s key workers have kept in touch with us weekly, and as I am writing this all respite centres have now been closed. They provide us with things to keep her busy, and emphatically offer to help us where possible.

If anybody is in a similar situation, and I appreciate that Christy is an adult, I would say the key to making it work is to not only be honest with those you work with daily but also to yourself. I found the first couple of days I attempted to ‘wing it’ but popping in to see Christy for fifteen minutes, having a cup of tea then going back to work. The back and forth of the situation made it difficult for me to fully give my attention to anything, and left me feeling exhausted and as if I hadn’t accomplished much. I read somewhere that segmenting your day, where possible, into two hour blocks can really help. Though I follow this principle I am not rigid with it, and it creates an overall checklist of things I need to do. The biggest thing I’ve had to learn through this experience is patience; Christy isn’t often being awkward for awkwards sake, but because she either can’t express how she is feeling adequately or because she may not know how to feel. And that’s ok. If I find myself starting to get frustrated I take myself out of the room and have to remind myself that she doesn’t comprehend the situation in the same way I do, and reassess my way of thinking. Above all, my biggest thing is remembering that we are all human, and we are all experiencing the same pandemic but our strategies for processing and coping with the situation are different. It’s definitely an experience being a carer right now, but I know that at the end of it we will all appreciate each other more and the added time we have had to spend together.