“My sister depends on me for everything. That can be hard to cope with. I sometimes feel like I can’t really help her, but I do my best to make her comfortable and I fight for her rights every day because I love her.”

Lorena is 25 and cares for her older Alisa sister who is 26. They live with their mother, her partner and seven-year-old brother in Newport. Alisa was born with severe physical and mental disabilities and needs round the clock support. Lorena has been caring for her sister since she was a child. Lorena takes care of her sister the vast majority of the time as their mum is in full time work, often working long hours to ensure the family has money coming in. The pressures of having to fight for her sister to get the right support have taken their toll on Lorena, but she remains upbeat about the future.

Lorena (r) with her sister Alisa

She explains: “My sister has an extremely high level of care needs. She’s fed through a tube and relies on me to do pretty much everything for her – from personal care to medication to entertainment! She hasn’t been out of the house for two years and it’s just our close family that talk to her since Covid.

“My care role is hard work, but she’s my sister and I’d do anything for her. I only sleep when she does. She can only communicate through subtle facial expressions. I know when she’s in pain or uncomfortable and very few people know what these signs are – so I worry anyone who doesn’t know her would miss these things and she’d suffer.

“We have been trying to get our house adapted so carers can come in and help. Alisa would need two carers and at the moment they can’t come here as our bathroom is unsuitable. And to get that done costs a lot of money. We were told we’d be able to get some funding towards it but that we’d still have to raise tens of thousands of pounds ourselves to make up the rest. Even getting the right chair for her so we can take her out has been so hard, so much battling with different people. It’s really hard getting rejected for things, it takes its toll.”

Lorena and her family have had good support from Rebecca, their social worker from Newport City Council. Rebecca has been working to find different support that is available for the family and suggested Lorena apply for a grant from the Carers Support Fund for a new iPad to help her with her studies. Lorena is about to finish her first year of a degree in Business Management that she does part time around her care role. She admits her old laptop was ready for the bin and needed a tablet to work on presentations, searching the web, email and essays. She’s even taken up creating digital artworks using the iPad as a way to relax and has had great feedback about the high quality of her artwork!

Lorena continues: “It’s been fantastic to get the grant from Carers Trust South East Wales. The iPad has helped me in so many ways and it’s improved my digital skills to which were actually a bit rusty! It’s helped me enormously with my uni work and I’ve taken up my new hobby of creating digital artworks that I find very relaxing, so it’s been amazing.

“Although my sister’s situation can be hard for all of us, I want to do well in my studies so I can get a good job. I want to make sure my sister gets the support she needs and that we are equipped to offer her the best life. My long term plan is to get a van and to travel – that’s my dream and I’ll keep working hard to achieve all these things!”

The Carers Support Fund was provided by Welsh Government via Carers Trust Wales and administered by Carers Trust South East Wales (CTSEW).

Some of Lorena's digital artworks