In 2005 my Grandad started with dementia and my Nana tried to look after him for a year. Then he started falling and wetting himself and my Nana would try to help him to the toilet. Then a couple of years later, he ended up in a home and my Nana started with it.
My Grandad spent about 3 years in and out of hospital. My Nana would call my parents all hours of the day, sometimes 10 times a night worrying that she had to go to work - she was getting ready to go to work at a place she worked at 40 years ago.
The toll dementia placed on them was enormous. People talk about dementia sufferers, but believe me the toll is on the living - the ones who have to look after them. My Dad didn't sleep for months as my Nana kept calling asking where my Grandad was. She would try to go to work and started falling and breaking her arm.
A few years ago, my Uncle started with it. He would be absolutely appalled at himself nowadays as he simply cannot look after himself and behaves in an baby-life manner. My Mum is worried sick by him. He cannot speak, but goes out and his behaviour is 'odd' and he is vulnerable.
My Grandad, Nana and Uncle would've begged for a nice, safe and dignified way out. None of them would've wanted their children/siblings to have suffered like they have done.
The toll on my parents has been shocking. They've had 15 years of looking after relatives and they can't switch off any more. And the worse part it, they know they are likely to be next and they know that the burden that they took will fall on our shoulders.
Honestly, if I get diagnosed with it then I am going to sort myself out when I know the times right.
Life is for the living. Dementia is not living.