You're Looking At Me Like I Live Here

This week marks Dementia week in Bermuda so there are a series of events happening to help raise the awareness of this disease. To help people who may be suffering from it or caring for someone who is suffering from it, to know they are not alone. To help them to understand more of what is happening to them or to their loved ones.
Liz Stewart, the President and founder of the Dementia group, decided to start this organisation after caring for her mother who suffered from dementia and subsequently died the same year but not before Liz realized how hard it was to care for her mother. To experience her mother lose contact with her life and family. I knew Liz's mother, Judith, a vivacious woman full of life so I could understand how difficult it must have been for a daughter to see her mother, a woman she admired, become someone else before her eyes. I also know that the group she formed would be a helpful and empathetic group because it was founded in the name of her mother to provide a touchstone for those going through the varying stages of dementia.
The other evening some of my family and I took advantage of one of this week's offerings, and went to watch a documentary about a woman suffering from dementia. We went because we have some concerns about our dad and we want to understand what could possibly be going on with him.
The documentary was called "You're Looking At Me Like I Live Here And I Don't." An apt title for the documentary because dementia does just that to those affected by it.  The person suffering from dementia  remains in the body of the person they once were but mentally they no longer connect with the body. They become a stranger in their own bodies. Leaving those of us who knew them, looking at the physical body still trying to connect them with the person they once were. The person that used to live in that body but no longer does. Until we realise the person he once was has left that space leaving behind someone else. And that someone else still desires to be cared for and loved. A very challenging space for the person and for the caregiver(s).
In the documentary, it was very sobering to watch a woman who obviously used to be in control of her life by the way she commanded the home she was living in but now had no idea who she was and why she was here. It was also sobering to realise that we could go through this life then get to the end of it and not know who we were or what we had experienced. It was also eye opening to see this woman dressed to the nines appear to be in full control of herself but was a shell of the woman she once was. How we can easily  be fooled by appearances until we communicate with the person and realise something is not right.
I watched the woman wondering around the home trying to find meaning to her life. Trying to connect as well as disconnect with where she found herself and thought how life is meant to be lived in the present moment. To enjoy every single moment that we have where we are because one day we could wake up and be the woman wondering around with no connection to our past.
I thought about how sometimes I project too far into the future. Worrying about what may happen rather than living presently and gratefully in this moment where every second I can remember who I am and why I am where I am is a gift not to be taken for granted.
Dementia affects a staggering 1 in 3 people in the world on varying levels. It is not a sign of aging. It is a disease. A disease that creeps up on us without us really understanding what is happening to us. It is often misdiagnosed because it affects us all in different ways. But some of the most common symptoms are memory loss, paranoia, the desire to isolate from the world and remain at home. And it can start happening to us as young as our 30s which is why in some cases it is misdiagnosed.
It is not a disease to be taken for granted because those who suffer from it can put themselves in danger by not remembering that they put on the kettle to boil water only to burn the house down. Or they many wander from home and not know where to return.
Watching the documentary helped me to understand that sometimes we have to slow down and smell the roses. To enjoy who we are where we are at this present moment because we could wake up one day totally disconnected from the life we were living. Waking up to the reality that people are looking at us like we live here but we don't anymore. And if that day comes, would the life we have been living be the life we would be proud of? Is it the life that was worth rushing around for when we no longer can remember who we were and why we were. And if it isn't when are we going to become who we were meant to become.
"You're Looking at Me Like I Live Here And I Don't" is a sobering reminder that life can change in an instant so it is up to us to live as fully as we can. And to be compassionate to those who lose their ability to connect with the reality of where they are because one day it could be us. Thanks Liz for being brave enough to bring to the forefront a disease that many are ashamed of because you are helping so many of us to understand what is happening to us and to those we love. And for letting us know we are not alone, I am truly grateful.