Pointing to the opposite hospital bed 'Is that a bull dog?'
Through almost grimacing giggles I tried to explain that it wasn't a bull dog but a lady that was also poorly in the hospital opposite my Nanan - whilst my younger brothers desperately tried to hide their amusement sat around her bed.
There is nothing at all laughable about the fact that my Nanan was suffering. An early onset of dementia due to the passing of my Grandad 2 years ago had advanced from mild to moderate into 'severe' as quickly as you can click your fingers. The doctor put the rapid degeneration down to a mysterious fall whilst baking just before Christmas.
The thing is some of the comments that my Nan made and the other patients around her were genuinely funny. It was hard not to feel the corners of your mouth raise up. I started to wonder whether it was actually ok to laugh and lighten the load when it comes to the torment of Dementia.
In responding to the 'bull dog' question, we smiled and talked to my Nan about dogs - she smiled and started to tell us about a dog my Grandad once brought home. Smiling had become hard for her due to the heavy depressive element to my Nan's dementia and her heartbreak over missing her soul mate - my Grandad.
My Nan had her fall doing what she knew and what she loved. She was a baker and an amazing one at that. However with the early onset of dementia her baking became a little confused too. Let me introduce the 'great apple pie scam.' It was tradition that my Nan made an apple pie when she was coming to my Mum's for dinner - she liked to contribute. My Mum would often arrive to pick her up whilst she was half way through grilling the apple pie (note apple pies should not be grilled) or she would be stood over the apples and the pastry as she figured out how to put the two together. The pie often had no sugar or had what my Nan thought was sugar that actually was salt. My Mum not once made fun or criticised. She just simply wrapped the pie up and took it to her house ready for after dinner. One of us meanwhile snuck off to the supermarket to buy an apple pie. The supermarket pie was then warmed up and served as desert. We sat around the table avoiding eye contact making yummy noises in eating the delicious apple pie whilst thanking my Nan. She felt good and always said 'I can still make apple pie like I used to' with a nice satisfied smile.
'There are black flies on her bed.'
This comment from a neighbouring patient at my Nan's hospital bed brought on that ever present guilty laughter. The debate among our family continued as I said to the hospital neighbour 'Oh don't worry they are going now.' Laughter is said to be one of the best medicines around.
My Nan (always accompanied by my Mum) would go into the local greengrocers and on entering would look at the water cress and tell the grocer, Lee, that she used to pick fresh water cress from around the mining pits and in the war when they had nothing fresh. My Nan told Lee this story every single time she went to the greengrocers which was at least 3 times weekly. Lee would always look at her as if he had never heard the story before and engage my Nan in conversation about water cress.
My Mum took my Nan to the community cafe on a regular basis where they would always sit with the same 3 people. They would sit and discuss the best James Bond films and their favourite actor to play the character. My Nan could remember all the old James Bond films. This conversation was the same every single time. There was not one single judgement toward my Nan or from my Nan within the group. They were just a group of people sat around drinking coffee happily chatting away. My Nan had dementia; the 3 people had Down's Syndrome.
My Nan would always try and pay for the drinks twice and with 35p of shrapnel - the value of money was becoming more and more confusing - she would look toward my Mum through scared and distressed eyes. No big deal was made, my Nan comforted and the drinks already paid for.
My Nanan meant the world to me.
I am by no means academically qualified in this field however I am qualified in what I sat and watched my Nan go through. I am qualified in the role my Mum played. I am qualified on the despair and heartbreak of my family. In this I am qualified to say embrace. Be kind. Dementia sufferers need to be understood and embraced not fought against as you can see from the stories I have told.
The Alzheimer's Society has come up with Dementia Friends - an action to create dementia friendly communities. My Nan is sadly no longer with us, I feel her absence every day but by telling her story she is still helping others, something she has always done.
My Nanan's last words were 'what can I do for you?'
http://www.dementiafriends.org.uk/
Worldwide there are 35 million people with dementia - these numbers are set to double in the next 20 years. A shocking statistic, but it is a reality.
We only get to live life once, so why not live life well?
In an increasingly "disposable" society where the message to the elderly, the sick or the disabled seems to be "you don't matter."
EVERY life matters, whether you have Downs Syndrome or Dementia; I invite you today to partner together with me and with Dementia friends to invest in the quality of life. One great investment is of course better palliative care which has been proven to enhance the experience of those at the most acute stages of suffering or the latent stages of life; a small investment but one that gives a big return. And of course strong message saying "YOU MATTER".
Are you with me?