Cousin Nikki

I adore my cousin Nikki, pictured here with my mum, who is her auntie (our mothers are sisters and both sisters have Alzheimer's). Oldest of all the cousins she was the big sister I dreamed of when she returned from Australia 35 years ago, aged 16 years to my 10.

She married a high-flying geekie bloke who worked with Steve Jobs, and all went swimmingly well until 10 years ago when her first child aged 17 was struck down with ME. And it has all been just appalling from then on... exhaustion, frustration, banging-your-head-against-a-brick-wall a characteristic of everyday life. Huge challenges to a previously carefree marriage and expectations, hopes and dreams dashed...

We grabbed a few days together at the Hay-on Wye and my heart goes out to her, battling with the major frustration of people simply not understanding and not believing the condition.

Alzheimers is bad enough, but imagine trying to come to terms with your children (her younger daughter has it too) in this "no hope" situation?

Have come home from a great (if wet) weekend in Hay-on-Wye feeling grateful, but also useless and sad.