Everyone has a story to tell about Dementia. Mine begins with this stunning lady right here, my Great Gran Hilda Dudley-Mason.
I grew up very close to my grandparents. My Nana lived with Magic Grandpa; he was a magician and he would magically make 50 pence pieces appear from behind my ear. I remember digging so hard into my little ear to find more money that I gave myself an ear infection. My Great Gran lived next door, with the fence panel removed between their gardens for easy access. This inevitably lead to splendid games of hide and seek, and eating more than my fair share of sweet treats as I would go between the houses talking about how hungry I was.
I was so lucky to grow up with my Nana, my Grandpa and my Gran all in one place, where for the first 8 years of my life I was the only grandchild who could run riot. I have very fond memories of setting up my little shop and selling my delicious imaginary cakes to Nana, who would make me belly laugh until I cried when she referred to Gran as the 'old biddy' who steals her chair in the little cafe attached to my shop. Gran would then chase my Nana out of my cafe, and I could do nothing but squeal at the whole debacle before being rushed to the bathroom because the excitement was too much for my tiny bladder to handle.
Slowly, things changed. Gran became forgetful, she'd call me Patsy (my Nana's name) then Debbie (my Mum) and eventually get around to calling me Katie. Silly Gran, I thought. Although I wasn't best pleased when she could no longer make my favourite childhood dish, a true classic, which still makes me think of Gran when I see it; egg and chips.
I can vividly remember discussing my parent’s break-up with my Gran. I explained that as long as I get two Christmas dinners, I see no reason Mum and Dad shouldn’t be happy. Mum gave me ‘the eye’ and explained to me very gently that I should not to talk about this with Gran anymore. I could not fathom why I had to keep things secret from her. Mum said that Gran wouldn’t understand and that it would cause her a great deal of stress to know.
As time went on, Gran sometimes didn't recognise me or my little brother. I'd laugh at Gran being silly. I thought she was pretending.
Even when she didn't immediately recognise me, she was very kind and loving. She always gave me a big hug, and even through the confusion there was always a glimmer of recognition. Before her confusion, she would sometimes give me a 50 pence piece as I left the house. One day, out of the blue, she have me a twenty pound note. As a child growing up in the early 90's I was an absolute baller with this kind of cash. Many Beanie Babies could be purchased with this sort of cash. On reflection I strongly believe this may have been given in confusion. I flaunted my crisp new note to Mum. Mum made me offer to give it back. Gran didn't accept...and I was as smug as ever as I invested in yet another stuffed toy to add to my already impressive collection of Beanie Babies.
In my little brain, it seemed like it happened overnight- there were people in Grans house trying to buy her things! Gran wasn't in her house anymore, but I didn't understand where she was. She wasn't there to protect the things people were trying to buy, so I tried to do it for her. I really didn't want that nice lady with the brown hair to buy the huge toy dog which looked like Lassie.
I didn't understand that Gran was in a Nursing Home.
I didn't understand the awful and painful decision that my Nana and my Mum had to make.
I didn't understand their hearts were breaking even more than mine watching strangers take my Grans belongings away from her home.
I didn't understand at all. How can a child possibly comprehend the abnormal proteins spreading throughout my Grans hippocampus, altering her ability to convert short term memory to long term memory?
I do now, and I watch so many families go through the same heartbreak.
Gran deteriorated relatively quickly, from what I remember. Despite this, she managed to outwit the staff one night and turned up at my Nana's front door soaking wet having walked several miles in the freezing cold. Again, I didn't understand what the problem was. Why can't Gran come over if she wants to? I think Nana felt guilty, but she has absolutely no reason to feel that way. The whole family did everything they could to prevent the inevitable journey from diagnosis onwards. But Dementia is cruel, and it was even less understood then than it is now. Looking back as an adult and knowing what I know now, my family were incredibly resilient and loving. I'm very proud of them. No one should have to go through this.
Gran passed away just before Christmas. Before she even had Dementia, Gran told me that when she died, she would come back as a Myosotis flower. I don't think she knew the connection that little blue flower has with her eventual diagnosis. The Forget-Me-Not.
My Gran's diagnosis set me off down a career path where I knew I wanted to support people living with dementia. I worked in a care home, then I went to University to study Physiotherapy. I have since specialised in supporting people living with frailty and dementia in varying settings to gain a wider perspective. Right now, I work in a hospital. My role is to prevent people losing their strength whilst they are unwell, and support them to retain their independence for as long as possible.
I'm a firm believer in treating the person, not the diagnosis. When we meet a person living with dementia, we must recognise that they are so much more than their diagnosis; they can and should be supported to live with meaning and value, being supported to take risks and feel alive.
I will always advocate for my patients, in memory of my wonderful Gran.