Skip to main content

Coronavirus: Devi – “The last 3 months have been an endless cycle of working and caring”

My brother is in his 50s and lives semi-independently with the help of myself and carers. Before coronavirus was an issue, he spent his week doing activities at a local centre and enjoyed drumming and ballroom dancing lessons. My brother has anxiety and traits of autism, so these activities were great for helping him to socialise and learn new skills and he got stability from his weekly routine. In early march, we started to get the idea that things were going to be bad. We started to make adjustments to our lives, cancelling visits to family members and asking our elderly mother to stop going out.

Supporting my family goes far beyond shopping

As all of us have been experiencing, the Covid situation has meant all our worlds have been turned upside down. There has been a loss of routine, control and peace of mind that we had for the most part before all of this.

Supporting my family through this time has been one of the hardest things. I visit them once a week and spend the rest of the time supporting on the phone. The news was full of pictures of helpful neighbourhood groups offering to drop off bags of shopping for people shielding at home, but most people do not understand what goes into being an unpaid carer. It goes far beyond shopping, in fact shopping is the easiest thing to take care of.

The last 3 months have been spent balancing the mental and physical health of my family. I am currently taking care of 1 parent, 1 brother and 2 children of my own. All while working full-time and attempting to home-school both children.

The challenges I've faced during lockdown

For me the biggest challenges have been:

  1. Keeping everyone safe. My mother is in the at risk group for severe issues should she get Covid, so has been told to shield. I wouldn’t be able to keep my brother away from her – he wouldn’t cope mentally, so I’ve had to try to get him to distance as much as possible when he does see her. If he was to shield with her, neither of them would cope. My biggest fear is he will bring coronavirus into mum’s house and it will kill her.
  2. Getting my brother to understand about distancing and hygiene. My brother is used to popping to the shops when he feels like it. I have been trying to impress the seriousness of the situation on him, but without scaring him. The panic buying at the beginning of lockdown scared him. When he went to the shops, he couldn’t buy any bread for 3 days running.
  3. Keeping my brother amused. When he’s bored, he gets upset and he’ll start upsetting my mother. His carer has been really helpful. He has been taking him for walks and playing music with him which has really helped.
  4. Managing someone else’s life admin remotely. I run my brother’s finances and have to deal with the bank as well as local councils and the Department for Work and Pensions (DWP). This can mean long periods trying to deal with things on the phone and security measures. Despite having a registered Power of Attorney, I still have to get my brother to speak to someone on the phone to allow me to talk on his behalf which means I have to go and see him during working hours.
  5. Providing emotional support. This has been the hardest things to deal with. I get around 5 phone calls a day from my brother and mother at the moment. He hasn’t been well, so over the last few days it’s been more like 10.
  6. Other people triggering him. People don’t understand the impact of seemingly small changes will have on him. He had a fence replaced at his house, but a bush was removed without telling him it was going to happen which triggered a huge meltdown. This had to be managed over the phone by me, and in person by his carer. His emotions are very close to the surface and for the most part he’s been coping really well, so things like this can have a massive impact.
  7. The lack of support. All services stopped with lockdown.

Without doubt the hardest thing has been that there is no time off. The last 3 months have been an endless cycle of working and caring. It is hard to sleep and I feel emotionally drained.

We have had some fun times, but the hardest thing about being an adult sibling is that I don’t get to enjoy the fun side of my brother that other people see. I am the one dealing with the issues and imposing boundaries to keep him settled and safe. People don’t understand the challenges and it can feel very lonely. It has been incredibly tough on my mental health. I am pulled between my brother, my mother and my family.

Would you like to help other siblings by sharing your own story? Please get in touch.