My photography project inspired by my grandma's dementia

My grandma, Winifred Sullivan, meant a huge amount to me. When I was little, she looked after me while Dad was working, and Mum was studying. Even after I began school, I would be staying over at grandma’s once a week on average.

A special bond

Grandma had four sons. She treated me like the daughter she never had. We spent lots of time together at parks and special places.

The first time I really noticed her dementia, I was about 14 years old, and I was staying over with her. She and I had separate beds in the spare room.

At two or three in the morning, I woke up and saw she wasn’t in her bed. I got up to see where she was, and I found her in the kitchen doing dishes. When I asked her what she was doing she said, 'Oh, I’m just doing the pots, getting ready for everyone coming over.'

I explained to her that it was the middle of the night and that she should come to bed. The next morning, I told my dad.

That was when he told me that grandma had dementia. I was young. But I understood.

Grandma was diagnosed with Alzheimer's disease in 2015.

Grandma's symptoms progressing

As time went by, grandma’s symptoms slowly became more obvious. She would go for walks on her own. She used to randomly sing songs she remembered from her childhood.

Because of the dementia, grandma would sometimes shout at members of the family. She never shouted at me though. She would say 'You’re the only one that understands'.

I could see it unfolding before me, and I would get quite upset.

My grandad, Aubrey, was amazing. He cared for her at home on his own. Everyone thinks dementia is just about forgetting. But it’s not. It’s about your personality changing – splitting in some ways.

How grandma inspired my photography

In 2017, I was at college doing photography, and my tutor told me to do something that I would find interesting.

I wanted to capture the whole range of emotions that grandma could go through.

So, in early 2018, I spent two or three days with my grandma and my grandad. I put on an exhibition of the photos afterwards.

In my exhibition, there were four photos on the left-hand side and four photos on the right-hand side. On the left, I showed four images of different sides of grandma.

One was her sticking her tongue out like a little girl – like a flashback of childhood:

One was her sitting at the dining table, looking really intently at something in space. She looks very lonely:

One was her with headphones on, listening to music. She was listening to Piano Man by Billy Joel and crying:

Finally, a photograph of grandma sipping hot chocolate, where she is looking like herself, showing happiness:

Capturing grandad's experience

On the other side of the exhibition, I had images of my grandad helping grandma.

Him putting on her apron at breakfast. Him helping her into a type of walker chair. The two of them watching television together. A shot of their hands holding each other.

And in the middle of these images is an envelope, unopened, which was sent to grandma, with a poem on the back. It was a poem which my grandma would love to read, so it stayed on the dining room table the whole time I photographed, and I heard it many times.

View more photographs from Kyra's exhibition below:

Reaching the end

Later in 2018, I had a chance to go to Australia. I was really worried for grandma, and I wasn’t sure I should go, but my dad said I should.

I came back in August 2019 and saw my grandma, and she didn’t recognise me at the start. That was devastating.

At that stage grandad had carers in twice a week to give him some time. 

But grandma was towards the end. She couldn’t walk and she could barely talk.

Grandad had cared for her at home all those years. But eventually, she had to go into hospital.

She passed away at the start of 2020. She was 84, and she had been married to my grandad for 62 years. It is amazing to think about.