This time last year Roxy took the time to share her story of caring for her sister during the first coronavirus lockdown. One year on we caught up with Roxy to find out how the past year has been. She was keen to share her experiences, hoping that this will be helpful to other carers. The conversation was inspiring.
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.
What was the upside of being in lockdown and taking on care for your sister?
It was quite a roller coaster, but together we worked things out, like putting a puzzle together. Understanding why she had certain behaviours and recognising that routine, good nutrition and fresh air were going to make a difference.
I took the opportunity to review my sister’s routine, diet and activities. Slowly, I saw changes and that she was able to enjoy a better quality of life, she had more smiles and more energy.
"Almost like watching a flower blossom."
We got out every day. It was hard pushing her wheelchair but I saw that as my personal challenge. Beating our own personal best of our 3km daily circuit and feeling stronger.
“The hardest part is always getting out, but once you are out you are winning.”
When I reflect back now, I don’t regret it. I could have just thought about myself and the fact I had eight months with no income as my job in aviation came to an end. To connect with her, transform her life for the better, to see her smiling every day, looking forward to her day.
Despite all the pain and struggle this was the biggest accomplishment of both of our lives.
Why was it the right decision for you both for your sister to return to residential care?
It was always in the plan, I know I can’t do it alone, both our lives are important. It’s important to maintain our independence and identity. Thinking further ahead if anything ever happened to me it could have led to a sudden unplanned change for my sister. We don’t have other family so it was important to look at the bigger picture, working to creating the right environment where it felt like home.
I know she is happy in her environment and feels safe. She’s entitled to that good life and connect with the other residents, and create memories herself. Now I look forward to visiting my sister and spending quality times together, we both look forward to that.
Her transition back into residential care was tough, what were the challenges you faced here?
She stayed longer with me than we planned to make sure the transition was right. So much of her daily care had changed since the start of Covid-19, so it was important that the Care team were prepared and ready prior to her return.
I shared information on her activity plans, keywords around communication, meals, fluids - a detailed handover of what good care would look like for my sister, and how important it was for her. We had several meetings to ensure all information was shared.
I knew the care I gave my sister at home, was 95% transferrable in a Care Home setting, as we had the right funding in place. And with 1-1 support I knew the funding was enough, if it was used well to provide a great level of care with the right training.
I had every faith the team were able to achieve connecting with my sister on a level where they would be able to deliver and support her daily care routine. And they would see the benefits and positive impact this had on her growth, as much as the rewarding side of their jobs. I realised the passion and vision I was sharing was very different to what the Care team wanted, which became the biggest challenge and a very tough battle.
What I needed to hear was that they could be adaptable and take on this new way of caring for my sister, do their best and continue to discuss it with me once she had moved back. However, it became a fight in trying to embed a routine.
Some staff did see the positives, and commented:
"I don’t know what you did whilst your sister was home with you, but she looks amazing, happier and a grown up version of herself. Well done"
Not many people understand the purpose in care. I found it hard hearing from the social worker and the Care Team the same words. “We know you want the best because you care and love your sister.” I replied “I do it because she is a human being - our role is to support and give the best we can for her life, as she relies on us to help create her life, this is how she came into the world.” As people, it is our duty to care and support every human that needs our help.
The first transition did not go well so I bought her back home for a bit, even though by this time I was exhausted. But it was important to get this right for my sister, as she was being affected. With perseverance, the social workers' support and connecting with a key member of staff I was able to make it happen and now they all see the difference in my sister.
What impact did all this have on you?
From December to February I was like a machine. I became very consumed in the “fight”. The meetings were tough, I felt bullied and as if no-one was on our side, made me feel unworthy as a person. It knocked me to the ground, I felt broken inside. I struggled to survive from one day to the next and it damaged my mental health.
One day I shared with a social worker involved how I really felt, that for a moment I didn’t want to exist. “What is the point in me, if this is what people try and do, be a barrier and feel punished in wanting to provide a good quality of life for my sister." I felt worlds apart from care professionals, our vision should be the same, we are meant to be on the same team but it was me against the care world. I found myself in a dark hole, but I knew I couldn’t give up, I had to keep going.
Eventually there was a wake-up call, I found myself in hospital with my own health issues. I recognised it was important to not take on all the negative energy of this situation, that I needed to prioritise myself knowing my sister was finally happy and healthy, the tough battles were worth it. I decided to control what I can, this included how I would communicate and with who.
We are not all perfect and I can’t change someone else’s vision and how they reacted towards me, not to take that personally. I knew I haven’t done anything to deserve this and reminded myself of how far I had come and what we had achieved which was seeing my sister at her best in life, happiness and growth. In the end, that’s all that mattered to me.
What did you find that helped and what learning would you pass on to others?
Making sure the routine also works for you, such as prioritising 10 minutes for exercise, meditation, reading or listening to some music, making sure you connect with nature, when things got really tough, nature was my saviour.
I got use to wearing my yoga pants and trainers being on the go, so I made sure I put on a nice dress and always had my three go to items (face cream, blusher and lip balm) in front of me when getting ready, making an effort for myself, made me feel good and feel positive, stronger in myself.
"Maintaining your identity is very important"
Things like getting out for a walk, crying it out, talking to a friend and accepting the support of my lovely neighbours got me through.
“It’s so important not to isolate yourself in your own mind”
Making sure everything is in writing is so important. If things become a battle it’s time to make a complaint - don’t wait until you are in the war.
My GP reminded me that there will always be difficult people - to remind myself, look at her picture and remember what I have achieved for her “the purpose”
“Never give up - have a vision for the best for the person you care for”
Talk to others - choose the right people, that’s very important, not everyone can be there for you and that’s ok too.
For professionals - not to get defensive, listen and take actions in supporting someone who’s reaching out, don’t allow it to become a battlefield.
The mantra that got me through this year reads: