Real stories

I don’t remember being called “somebody with dementia” - Kathy's story

Before my dementia diagnosis

I don’t remember being called 'somebody with dementia'. I don’t use those words. My memory is a lot better than people seem to think it is.

Born in 1940, my name is Kathleen, with a K. Going back to my childhood, I can remember being in several children’s homes. My mother had a tough time with my two brothers and mum had a terminal illness, so they had to be placed in care. My brothers were older than me. I had two younger sisters too. I was quite lucky because I spent some time at home with my mum. She was a single mum and she did her best. 

I lived in a basement flat, and the BBC offices, in Maida Vale, were at the end of the garden. I would often hear them singing 'Teddy Bear’s Picnic'!

I was separated from my siblings and Ray, Robin and Pam ended up in Australia.

When I was older, my friends and I travelled abroad, staying in youth hostels. We didn’t make it to Australia but across France and round the UK. 
I was an office worker and was always very good with figures. I had a career as a bookkeeper, travelling up to town on the tube.

I was reunited with two of my siblings 57 years apart when they came to visit and we had a lovely reunion.

Life is what you make it

I’ve got four children now. Two boys and two girls, and Sean is the youngest.

I did have a stroke*, but I see that as just a process of ageing. I don’t remember getting a diagnosis of anything. I’m just me. Life is just what you make it. Hope for the best and if the rotten things happen, they happen.

*Kathy's stroke was caused by Cerebral Amyloid Angiopathy (CAA).

How Alzheimer's Society have helped me

We have Helen (Dementia Adviser), from Alzheimer’s Society. She runs lots of groups, so we can go ‘galivanting’ during the week. We go to Ten Pin Bowling* on a Monday, where we get to sing together and meet other people. I love to sing. When I was younger I wanted to sing professionally. When you remember things in your mind – you can always sing them. I love singing 'Doris Day – Que sera, sera' and I love 'Sunny Side of the Street'.  

I think I have a decent voice, even now at eighty-something. When I was younger I did sing on the stage a couple of times, in the 1950s. Saturday morning cinema.

* Sean explains that because of the aphasia brought about by the stroke, Kathleen refers to the Singing for the Brain group as 'Ten Pin Bowling' as it is in the same direction.

Sean says, 'I don't correct mum but substituting or elaboration is our way of bringing elements back. For example mum would say, 'are we going bowling today?' My response is, 'yeah we're going to have a right giggle at singing today!'

Making plans with dementia

I am going to ride a bike this summer. That’ll save me getting on a bus! There are bikes in Regent's Park where we can ride side-by-side and the bikes are attached. Sean will take me. I used to use my bike to commute to and from work, popping home to make the kids lunch then cycling back to work again.

The ‘galivanting’ (groups and services) is what gets us back to ‘normal’. We are very lucky that we can get out and about. Sean likes me to mention the wheelchair. He can go fast but I think I’d rather he didn’t in case we go into a brick wall or something!

I think it’s good to meet other people. That’s important. I go to the Stroke Club, and still go to Ten Pin Bowling (Singing For The Brain), and we get a call from Helen, and I can ask 'is so-and-so coming?'

Sean found all the groups. He looked them up. Then we met (Dementia Advisers) Anne-Marie, Rhianna, Rebecca and Kate (Local Services Manager) from Alzheimer’s Society. They are part of my fan club!

I want people to learn from us and feel inclined to go for it – rather than sitting back.