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10-16 June 2024

I’m a carer for my younger sister who has an advanced stage of dementia. She’s at the end of life now and is under the care of a palliative team. 

I had to give up my full-time job working for American Express to take on board caring for my sister. Prior to this, I was also a carer for my elderly parents. Caring for my parents was manageable alongside my full-time job, but with my sister, her condition deteriorated so rapidly that it wasn’t possible to carry on with my job.

This completely changed my world. I suddenly didn’t have the money coming in. I was not even a pensionable age at the time, so I had to dig into my savings to pay for my mortgage.

It’s changed me as a person too. As a career minded person, I was very strong, tough. I now still have to be assertive, but in a different way. I have to be a calmer person. I remember meeting my friends from my old workplace and they just said, “everything in you has changed.”

My sister needs a hoist now as she cannot stand. Finally, after nearly two years of waiting we got trained, but my sister's condition has deteriorated so much that we have now been instructed against hoisting her. As she is now in a very high-risk category it has added on additional burden and stress on myself.

The pandemic has greatly affected us because, at one point, we had to stop all of the carers coming in. We also had issues with PPE. We always had the aprons and gloves, but we didn’t have masks. When we tried to order them, they were hard to find. We tried social services, everybody. Nobody had them.

Sometimes I just want my own space to think. But I don’t have that. I can't even think about going out for dinner or lunch, or meeting with friends. Because I know that something will come up and I’ll have to cancel it. 

There’s nothing that makes things better. It’s constant. If you get a call, you’ve got to deal with it. Visits to the GP surgery, hospital stays. There’s no time for me.

I used to love reading and used to love going to the library, going for walks. It’s all gone.

I have no life of my own. My sister is constantly in my mind. I need more support from the system to have some sort of my life back.

With thanks to Rasila and Age UK for sharing this story

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