We are Esther and Judith. We’re sisters to our brother, Jonathan, who is autistic and has a learning disability. He has a weekly routine of activities and supported training placements. In March, the café he works at closed, and the rest of his activities, including all social and sporting groups, were cancelled. This left Jonathan without any structured schedule to his day. One of his key support workers was off work for over a month, and his team was reduced to just one member of staff for the first month.
Initially, dad took over organising Jonathan’s care, sorting out the shopping and taking him for walks almost every day. Then mum became ill, and dad was no longer able to visit Jonathan because of shielding restrictions. Mum was in and out of hospital.
So we decided to divide up the care between us. Esther moved out of her flat and moved into our parents’ home to take care of her Mum and Dad. Judith took on more responsibility for Jonathan.
Judith's story - It's been challenging being thrown into this caring role so suddenly
Jonathan and I have always been close, but I’ve never had to have a “caring” relationship with him before. I always knew that, one day, my sister and I would take on more responsibility for his care, but I never expected that to happen so soon and so suddenly. Throughout lockdown, I’ve been trying to give him some structure by taking him out for a long walk in the nature reserve near where he lives, 4 days a week. I’ve been liaising with his support staff to come up with ideas on how to talk to him about the situation, help him cope with the change in routine, and how else to give structure to his days.
It’s been challenging being thrown into this role so suddenly. I’m trying to juggle it with working full time; often making up for missed work hours in the evenings and weekends. It’s also been really difficult trying to manage his expectations. He knows that he can’t do everything he usually does because of the coronavirus, but I don’t think he fully grasps what that means. It’s been hard to see him upset – sometimes to the point of tears – about not being able to spend time with the rest of our family and friends.
In the early days of lockdown, when he was struggling the most, he was often tearing up his favourite objects, biting himself to the point of leaving bruises all over his arms, refusing to engage with anything or anyone. Thankfully now the restrictions are less strict he’s a lot happier and has settled into his new routine well, but for those first eight weeks of complete lockdown it was a real challenge.
Esther's story - I feel incredibly guilty that I am not helping him
I often feel guilty that as I can’t drive I can’t visit Jonathan and take him on walks like my sister does. I can’t provide her and the care team with any respite. Instead I can only speak to him on the phone. This has made me feel left out. Seeing how my sister has had to cope with a full-time job, our mum being ill and being the sole family member providing care has made me feel incredibly guilty for having the luxury of not being in a place where I am responsible for Jonathan’s care.
At the start of lockdown I was getting video calls from him maybe ten times a day. Most of the conversations were around his anxiety at not understanding why he couldn’t see family and continue as normal. It’s been incredibly difficult to see him so upset on the phone and knowing that I can’t explain the situation in a way he can understand and that I can’t visit him.
As I am working from home and providing additional support to my parents, the addition of ten phone calls a day really affected how well I was coping with the situation. I found myself choosing to ignore his phone calls rather than talk to him, because I didn’t want to see him upset, and I didn’t want him to feel jealous that I was with our parents, but he couldn’t see them.
When the restrictions eased last week, I saw my brother in person for the first time in nearly 3 months. Normally I see him once a week. It was so amazing to see him again in person, and see how happy he was being out of the house and around more family members. Jonathan initially struggled with social distancing, but by the time I saw him last week he knew that we couldn’t hug and had to sit far apart.
I want people to know that there are a number of different roles that adult siblings play in lockdown. In my family alone we have two distinct roles: My sister is now a carer and activities coordinator in addition to being a sister, while I remain just a sister. She has taken on so much more responsibility and handled the early challenges of helping Jonathan adjust to lockdown life.
In contrast, I’ve been fairly cut off from his situation and left feeling incredibly guilty that I am not helping him, I am not caring for him and beyond a few video calls I am not engaging with or entertaining him. The pressure that we, as siblings, should care for and be responsible for our disabled brothers and sisters, either now or in the future when our parents are no longer able to, is constant and has been exasperated by the lockdown. I feel conflicted, sad and frustrated by my inability to see and care for my brother. I can only imagine how much more difficult it is for people who are currently living with their siblings, providing full time care without much respite, if any.