Emma's story

Patient Stories

My Nan’s first symptoms began in early 2020 but she hid them so well it took me a while to notice. Her speech was the first sign. I rang her every day but couldn’t quite understand her – her speech started to become slurred.

Then in June 2020 she received a diagnosis of bulbar onset motor neurone disease, a type of MND which affects the muscles of the face, throat and tongue to begin with.

She was sent home but fairly quickly started to deteriorate, not being able to talk or eat and drink without difficulty. Nan was referred to the hospital’s palliative care team, where she had a RIG feeding tube inserted, which allows liquids to go directly into your stomach. She was very anxious and started to get increasingly confused and to fall over too. Between me, my mum and my sister we were staying at her house seven days a week to care for her. I have two young children, so it was quite stressful.

Nan was an incredibly proud and independent woman. She always wanted to do things for herself, so relying on others was a really difficult adjustment for her.

After a particularly difficult night when Mum called to say Nan was quite distressed and had tried to pull her RIG feed out, we got a call from LOROS to offer her a bed. They would help with the symptoms and pain. We told Nan, who said no, she didn’t want to go anywhere. Nan was an incredibly proud and independent woman. She always wanted to do things for herself, so relying on others was a really difficult adjustment for her. I talked to her about LOROS – pointing out that she had always supported the charity by playing the LOROS lottery and she knew what great care they provided. I’ve always had a really close relationship to my Nan, my Mum says we’re very similar. She relented and agreed to go in to the hospice.

While she was there, she had the most amazing care. Every single member of staff was incredible; they always had the time to talk to her and us, and answer any questions we had (which was a lot).

While she was there, she had the most amazing care. Every single member of staff was incredible; they always had the time to talk to her and us, and answer any questions we had (which was a lot).

The doctors got her symptoms under control and helped with the pain. She was so independent, the nurses said she wouldn’t accept any help and every morning got herself up and dressed. I’d visit and she’d be tottering around with her frame.

Considering she couldn't talk anymore, the nurses were still able to have a chat with her about her wishes, her family, her childhood and her favourite hobby which was gardening. It didn't matter that it took her a while to write down what she wanted to say, everyone gave her the time to be able to do this.

She was seen regularly by Tracey, the Counselling and Bereavement Manager; they built up such a good rapport with their love of gardening. Tracey even brought in some pots and bulbs, and together they planted these. When I visited Nan later that day, I was given one of these pots.

They built up such a good rapport with their love of gardening. Tracey even brought in some pots and bulbs, and together they planted these.

One day I came to see her and she wasn’t up and dressed. That was the sign we’d been waiting for. We stayed with her from then, just holding her hand. Tracey sat with us too, she didn’t talk, just a comforting presence which calmed her.

My beautiful Nan, Shirley Linnett, died on the 11th October 2020, aged 78.

Nan had written a note with the plant pots for me and my sister, telling us that they were tulips (one of her favourite flowers) and that she hoped they would flower around her birthday. Her birthday would have been 12th April and they flowered beautifully - exactly how she had hoped.

I cannot thank the staff at LOROS enough for what they did for our family during the hardest time of our lives.

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