The day I took a phone call telling me one of my parents had been diagnosed with a serious terminal illness, I thought nothing of rushing over to their home immediately. I cared deeply about them, so what else would I do? I’d do it again. But I’d do it differently. Because on the day I arrived, I never imagined that I was about to become a carer, or face quite such a testing experience.
In reality, I fell into the role of providing 24/7 live-in care near-immediately, and stayed there for much longer than I imagined. Popping over for two nights turned into a week, and suddenly it rolled on and on. My parent’s diagnosis also triggered in them some historic, chronic anxiety that had to that point been fairly successfully managed for years. That led to them rejecting care from anyone else – professional or otherwise – and for one eight-month period I hardly left the house.
Their dependence on me became more intense by the day, and at one point I did close to 40 days without ever stepping outside – even just into the garden. The person I was caring for felt they couldn’t cope without me literally by their side, that they could only interact with me and me alone, and that the outside world was too intimidating to enter.
There were other complicating factors too, exacerbating things. The overall situation ultimately left me with a trauma and anxiety diagnosis I would have never predicted, and I was assigned my own social worker to support me in leaving the situation. I had my mental health, wellbeing, general health, work, relationships, self worth and more deeply challenged and impacted, and many years on, while I’m not involved in the care, it affects my daily life.
The full story is a much longer one, but in this piece I want to focus on what I learned, and what I’d do differently, in a hope that it helps other people, or encourages those finding themselves in a difficult care system that they’re not alone, that it’s OK not to get it all right, and that there are solutions.
Before diving into that, it’s important to say I’m not a care professional. I’m not a legal or medical expert. And the organisations and local support from the likes of adult social care, while amazingly helpful, might have a different structure, framework or name in your area, making it tricky to recommend specific organisations to turn to.
If there’s a charity focused on the condition of the person you are caring for, they can certainly point you in the right direction with regards to establishing a meaningful care plan. Or you can turn to a local organisation that supports carers. I had Care for the Carers down in the South East of England, and they really helped me understand things like Carer’s Rights. The NHS social care portal also offers a very useful resource for carers, from those starting out to those long into a care scenario. The sections on support for carers and practical tips for carers are especially helpful.
For now, though, I wanted to share my personal learnings, and how I’d approach things differently based on the experience I’ve had.
The difference between caring and being a carer
Until I became a carer myself, I never pondered that caring about someone and caring for them can be very different. Caring is what led me to become involved, to never question whether I was the right person, and to give very little thought to stepping away from almost every other element of my life. Because I cared, I felt it was my duty to help out, and I quickly developed a sense of guilt about doing anything less than everything. But caring isn’t just about making sure medication is taken, clothes are put on, meals are provided and the person is washed and looked after.
There’s the emotional support, the bills, the meetings, the doctors appointments, and really tough decisions around end-of-life care. I ended up deeply strained, hardly sleeping, suffering frequent anxiety episodes and my first brush with migraines, almost entirely neglecting to care for myself in terms of the very basics of eating and washing.
In the end I wasn’t providing anything like perfect care. If I lived that part of my life again, I’d pause to try and separate my care from stepping up to care, and give more time to considering the enormity of the task and whether I was suitable to take on so much. I’d try to be more assertive in remembering and making time for my own needs and capacity, and find it in me to say I needed help and that I couldn’t actually take it all on. Because not being able to do everything does not mean you are getting it wrong.
Deeply related to the above, when caring becomes all or a large part of your life experience, it’s important to remember your needs. If you find yourself struggling to meet the basics of looking after yourself, it’s absolutely time to reach out to organisations that can help, starting with adult social care, relevant charities, and organisations that support carers.
Importantly, the same is true of your work, your relationships and your hobbies or interests. Those things matter, and if they all fall away, the care plan isn’t working for anyone. It is much more helpful to everyone involved to say that you can’t cope, or are struggling. And the likes of video games and hobbies may seem trivial in the grand scheme of caring for somebody, but they are not. Holding on to the things that make you happy, give you respite or feel part of who you are isn’t self indulgent.
Giving yourself time isn’t slacking off. Exclusively putting the person you care for first isn’t realistic. But I stuck at it through some strange sense of guilt and obligation. Then, as I spiralled towards rock bottom, I found it in me to ask for help, adult social care connected me with a therapist, and I learned it was critically important to find time for me.
From that point, time with a yo-yo and a PS4 gave me respite, moments of feeling normal, and significantly improved my ability to actually care. I bought a few too many yo-yos in that time, but they provided amazing escapism, as did Uncharted 4. Doing some work while accepting support from visiting carers gave me a sense of valuer and independence.
As a freelancer in the games industry I started to be open about the challenges I was balancing with work, and every client without exception was understanding, kind and supportive. That taught me to be more open about my situation in general. After too many months I also started to make time to step away and call friends.
When your freedom or autonomy is restricted by the realities of being a carer, that human contact can be key in letting you feel connected with the world.
Managing negative emotions in a care scenario
I deeply love my parents. But I’m not going to lie – at times I felt trapped by their needs, and controlled by their dependance on me. That wasn’t really the reality of the situation, but it sure felt like it at times. I’m far from proud of it, but I sometimes found myself feeling deeply upset with them, or even irritated and angry. That was awful. There I was, experiencing negative emotions towards somebody I loved when they were suffering from a deeply testing illness and profound mental health challenges.
But being a carer is, in its own way, an intense, extremely close, potentially long-term relationship. And just like any relationship, including the best and most loving, there will be times when things are strained, or when you feel challenged by a person you adore. That really is OK. You might not want to feel such feelings, but they may come up. Those feelings aren’t wrong, and in the end I found it was better for everybody that I gave them time, let them flow, and recognised and worked through them.
You do not have to take it all on
Ultimately, so many of my decisions in the first few months were motivated by guilt. I felt I had to take on everything. I found myself starting to believe ideas based on nothing, even imagining that if I simply said ‘I can’t do it’ the authorities would say I had to. That’s not a reality. It might have been best that I said early on ‘I can’t do it at all’. Care would have been sorted, and I might have ended up having a more meaningful, less destructive role in my parent’s life. That’s easier said than done, of course, because as I found out, it’s easy to find yourself as a carer before you have time to do anything like think about it.
If you do find yourself there, just remember you can’t do it alone, you will need support and respite, and you can say ‘no’ to some or all of the responsibilities. Getting it right all starts with asking for help – help that is there and available.
Will FreemanFreelance video game journalist, copywriter, editor, author, consultant, event curator, researcher, awards judge, script editor and speaker. Work with: The Guardian, Edge, BAFTA, Vice, BBC, GI, Eurogamer, PCGamesN, Gamespot, Kotaku and more. Also covers and serves VR, toys, board games, technology, VFX and robotics.