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Lisa's story: "Admiral Nurse are experts in dementia, and their voices need to be listened to"

Lisa and her mum

Lisa and her mum

Mum was an independent and feisty woman who loved being active. My two children and I lived with her and my dad; she was a big part of my children’s lives, and we were all really close. Mum was very good at hiding the fact that she was struggling. She used to be an amazing cook, but she started burning everything. Still, it never occurred to me at the time that it could be dementia.

Stacey, my Admiral Nurse, was my lifesaver

Mum’s memory, personality and awareness began to change more noticeably. She would forget she needed a walking stick. She would say she didn’t want to watch TV, but I realise now that she couldn’t remember how to put it on. Eventually, I booked an appointment with the GP who referred Mum to the memory clinic. She was diagnosed with Alzheimer’s disease in February 2018, aged 78. The family dynamics shifted after that, and I became Mum’s full-time carer.

The memory service put me in touch with Stacey, our Admiral Nurse. She was my lifesaver, and a huge support for all of us. She gave us a wealth of information and advice about dementia and suggested things that we never would have thought of, like buying sensor lights for the landing so that Mum could see when she got up in the night.

Stacey became my advocate and backbone

In August 2020 our house flooded, and Mum had to go into emergency respite care. The insurance claim took ages to go through which meant she ended up having to stay in the care home for longer than planned.

Because of Covid-19, we weren’t allowed to visit Mum. The care home was like a fortress. I wish I could have gone in to help her with the small things we took for granted, like setting up her TV so she could watch ‘Strictly Come Dancing’ – or just to hold her hand and reassure her. I don’t think she understood why we weren’t going to see her.

Mum’s health started to deteriorate in the care home. She had been flooded out of her home and whisked away into a strange environment where she couldn’t see her family. Nobody stopped to think about how these things were affecting her. Stacey became my advocate and backbone. I was too emotional to contact the care home staff, so Stacey did it on my behalf.

My children didn’t get to say goodbye

Mum was admitted to hospital after six weeks of being in the care home. She was dehydrated and not eating or drinking. When I got there, I thought she had died – she looked grey and didn’t have her glasses on; she was almost blind without them. But thankfully, she was still with us.

Mum grew stronger again, and after a week waiting on the discharge ward, she was discharged to a care home. But by the time she arrived at the care home, they said she was at the end of her life. Even then, I still wasn’t allowed in to see her.

Mum passed away in November 2020, aged 81.

My dad only saw her once after she was admitted to the care home. My five-year-old didn’t get to say goodbye to his gran, who he had lived with since he was born. When my daughter went away to university, Stacey called the care home to try and arrange for her to wave through the window to Mum. Even that wasn’t facilitated, so she never got to say goodbye.

We are still living with the consequences of Covid

I believe Mum would still be here now if it wasn’t for Covid. Too many restrictions were put in place, and we’re still suffering with the consequences. Stacey fought our corner the whole time. I felt that healthcare professionals didn’t really understand the role of an Admiral Nurse, but they are experts in dementia, and their voices need to be listened to. I honestly don’t know how I would have got through it without Stacey.