Every day I talk about my ups and downs of caring and so I wanted to share my personal Carer Journey with you all. This article talks about the moment I first became a Young Adult Carer, when I became a Carer again and the impact of Coronavirus. I have also shared the things I have found most helpful in the hope that they can help others too.
My first caring role came to me instantly at the age of 19. I was three weeks into my law degree, and I had just called mum to find out the result of my brother’s Sunday football game. Needless to say, ‘head injury’ was not the final score that I had expected!
When I called, they were in the ambulance on the way to the hospital. I lived in University halls at the time, just 74 miles away, but on that day, it felt like a million. I ran for the first train home. Little did I know that in the two hours that it took me to get there that my entire world had changed. Nothing prepared me for the blank look of expression on my brother’s face as I walked into the room. In that moment, I knew that I had become a stranger to the little brother I had grown up with.
The next year became the start of my family’s caring journey. Most of it focused on supporting my brother, reintroducing him to the important things, teaching him key skills and helping him recover. It was also about starting life again, making new memories and capturing those in the moment. A small part of this however was about grieving the person we had lost as he was an entirely different person now. It’s really difficult to grieve for someone who is still there, to hold onto memories of the two of you that you’ll never share. Whilst I have gained so much from the person he has become, I still miss the person that he was too. I want to have my cake and eat it.
Despite this, as a family we felt incredibly lucky. We knew that our caring journey had a positive trajectory. There is so much hope, optimism and light in the knowledge that “he can get better”. This brought our family closer, helped us focus our attentions and taught us to appreciate the little things. We also got amazing at Scrapbooking. This has been our life for the last four years and each day we have learned and grown as a family. I am incredibly fortunate that I get to be his big sister again now and we have made many new memories.
Whilst the caring for my brother has somewhat ended, I have become a carer again for another family member. As the primary carer, the absolute rock of the family, my mum has continuously put the needs of others above her own and over time she has forgotten to look after her own health and wellbeing. It’s now our turn to look after her.
The change in dynamic is fairly new for our family and we had just started getting into a bit of a routine, but recent events have changed this for us entirely. Covid-19 and lockdown have meant that I can no longer be there physically to help, and the dynamics of the family have changed drastically.
My dad is home more to take over the caring role and my caring mostly comes through the phone, along with bad jokes, good news stories and ‘You’ll never guess what stupid thing I did today…”. We talk on the phone often and we have made a good game of the ‘Knock and run food drop’ but nothing is the same as a hug from your mum on the tough days - I still need that. It’s also hard knowing that as a carer, the most caring thing I can do is stay away.
Caring during the pandemic was undeniably tougher for everyone. There is so much confusion and uncertainty and loads of time to feel confused and uncertain. For me, managing these and maintaining my mental wellbeing has always been like a balloon I am trying to keep above my head. Something that needs my attention every so often, a soft nudge to keep it floating up and down. But more recently, I have my days where it feels more like a water balloon I have to hold to stop it falling on my head. It needs continuous nurturing.
What makes it harder is that many of the things I would do for me are restricted or unavailable at the moment; walking my parents’ dog, going to the gym, eating out at restaurants, going to the cinema, volunteering and travelling. Since the implementation of lockdown, I have started to explore other options things like a TV series, gardening, cooking and an online course but it is taking some time to adjust to. When talking and sharing my experience with others, I know that I am not alone in this, and there is a great deal of comfort in that. It's also incredibly reassuring that there is still a carer’s community out there – so much advice, support and positivity.
In spirit of this, here are my five little nuggets of advice for the Covid-19 lockdown:
1. Make the bed and open the curtains.
I watched an inspirational video once that said that one of the most important things to do in a day was make your bed and open the curtains. It was about starting the day right and having achieved something right from the outset. I don’t know why it stuck with me, but it did, and I have found it so useful during lockdown. There is something about letting the sunlight in and feeling like I have done one thing already and I’ve only been up five minutes.
2. Recognise and celebrate the wins
It is so important to recognise the things you have achieved in a day and set yourself ‘quick wins’. In my house, we used to go around the dinner table and each say one good thing about the day, one thing you’re grateful for or one thing you have achieved. Celebrate your own and celebrate the successes of others. This will help with keeping you feeling energised and motivated.
3. Keep nudging your balloon
Find time in your day to focus on your mental wellbeing. Whether it's mindfulness, a walk, a hobby or a book, take a moment for yourself to recharge. Find the thing that works for you and actively plan this into your day.
4. Have time away from the news
Coronavirus and lockdown are broadcasted all day and with the influence of social media, we are subjected to information on the disease continuously. I found that when I read every article and news story, I was becoming overwhelmed. Whilst it is good to stay informed, it is worth setting limits on when you check the news, and only using specific, reliable sources.
5. Find ways to keep connected with a network
For me, it has been really important to talk to people and keep connected with the outside world. I have not only used this to catch up with family and friends, but I have also found a new network of people who share this journey with me. I look forward to the Virtual Cuppa’s hosted by Mobilise every day from Monday to Friday. I have gained so much from getting to know other carers and their stories. We have also shared top tips, ideas, resources and lots of well-needed laughter.
If you have found this blog useful, why don’t you check out our other blogs or our Virtual Cuppa. For Young Adult Carers who are interested in joining our Mobilise Young Adult Carer Community, please email Suzanne.