Living with dementia: What it's like to lose someone, before they're really gone

Dementia. We all know the word; for half of us, it strikes fear, for the other half, it's a sad reality. 

I'm one of the unfortunate increasing number to have lost someone to the awful disease. My grandfather, the most headstrong, independent man you could ever hope to meet, became a shadow of his former self in the years after his diagnosis. His dementia, according to doctors, was brought on by a series of 'mini-strokes', which eventually damaged his brain. However his deterioration seemed to begin when my cousin, his grandson, was killed in a tragic accident aged 17. 

Can emotional turmoil trigger dementia? I'm not sure, but it certainly seemed to in grandad. He was never the same. 

Grandad and I were always extremely close.

Of course, we mourned grandad's death. But really, the mourning began months, even years before. The grandad I knew, who would drive me everywhere, would bring me lucozade when I was ill, would joke constantly, was gone long before he died. We watched his unique personality traits slowly ebb away, until he was a man I didn't really know, but still inherently loved. 

Sadly, my grandma - his widow - also has dementia. They were diagnosed at a similar time, but her decline has been slower. It's taken us unawares. She's gone from being the one who cared for grandad, still seemingly herself thanks to her naturally scatty nature, to a woman who can't string a sentence together. She just can't find the words.

Grandma and grandad shortly after their diagnosis.

Having been away from my home country of England for nearly a year, my recent trip home was mostly filled with excitement about seeing my family. But - and I feel awful admitting this - I was dreading seeing grandma. The woman who woke me and got me ready for school as a child, who was good cop to my parents' bad, and who I loved in a way only a granddaughter can. I was scared she wouldn't recognise me after being away for so long, and I knew that would break my heart. 

I still don't know whether she did know who I was when I first walked in to the nursing home with my mum, but she did a good job of acting like she was pleased to see me. Dementia does that, you see; it makes the sufferer a good actor. They have to find a way of covering up their decline.