Roxy and her sister are in their 30’s. Roxy’s sister was born prematurely with brain damage and as a result has a learning disability, limited mobility and suffers from seizures. Roxy chose to care for her sister at home as she was concerned about the risk of Covid-19. It hasn’t been easy but it now feels like it was the right decision for them both.
The past 6 weeks have been quite a journey, Roxy hopes that by sharing her story it will inspire others, to know they are not alone.
“At first it took a while to understand my sister’s needs, her world, her way of expressing herself. It was difficult and frustrating. There wasn’t a huge amount of help around as the care system was still adapting to the coronavirus situation. Choosing to bring my sister out of her residential care home seemed to be an unusual thing to do and there were a lot of barriers to overcome. There wasn’t an existing system or process to follow to make this temporary change and it felt like we were shutting the door to support. I knew it was the right thing to do for both of us though.
I knew it was important to keep in contact with those that had reached out.
We began to put routines in place, I learnt the best way to support my sister, getting used to providing the level of care that she needed and adjusting to lock-down. In the past my caring role had led me to feel very isolated, and it felt like this could happen again. Friends do stop getting in touch but some did stay in touch and I knew it was important to keep in contact with those that had reached out and not stay too much in my own bubble.
After what felt like a battle with the care system and then trying to keep going in the first few weeks I was getting tired. One day it felt like my sister really wasn’t happy with me, she was frustrated and angry, I doubted myself, ‘maybe I’m not doing this right’. It felt like I was failing, I just wanted to cry. I was able to take a step back and notice other things weren’t right and luckily realised my sister was unwell, an infection was making her very uncomfortable and she wasn’t able to explain this to me. After a course of antibiotics she was much better.
You are doing an amazing job.
This made me realised the impact that caring was having on me, I was able to talk to a friend, she listened, she understood - no coincidence that this friend also had experience of caring. It was nice to hear her words of encouragement and praise ‘You are doing an amazing job’ so different from what I had been telling myself.
Our daily exercise has turned out to be a real highlight, we look forward to it and enjoy the feeling of accomplishment afterwards. As I push her in her wheelchair around quite a bumpy path we see other walkers who recognise us, smile and say hello and tell us how well we are doing. This gives us both a boost.
Getting to know neighbours has been good too, cakes are baked, there are friendly words and kind notes. To be giving and receiving kindness at a time like this means a lot. It would have been easy to shut myself away. I’ve learnt if you can make the first step others will connect with you.
Our daily routine has gone beyond just achieving the basics, I now manage to fit in an exercise programme in the mornings, my sister has Facetime chats with her housemates from the care home and we’ve done some baking too.
Welfare checks are now in place and on a recent call with our carer support it felt like we have found a lot of positives from the situation. I’ve been able to support my sister with healthy eating and the fresh air and routine is making a big difference. Staff from her care home have been in touch too to see how they could support, they surprised us with a delivery of DVDs, flowers and cake recently, so great to be able to keep this good relationship...it felt a bit bumpy at first as bringing her home was not something they had planned for, we are moving forwards now.
Caring for someone can be like trying to fit a jigsaw together
Caring for someone can be like trying to fit a jigsaw together, trying to find all the pieces and make them fit. Do reach out, don’t be afraid to ask for the help you need. I am my sister’s voice, she is precious to me, I sometimes have to ask a few times for what we need. I notice it helps when I can keep the emotion dialled down when talking with different organisations to arrange support. We are all on the same side and need to work to get around the barriers and obstacles. Keep going - you are doing an amazing job too!