” Freedom’s just another word for nothing left to lose” – Kris Kristofferson
I read a blog written by a guy whose byline is that he cared for his mother for 3,112 days, over 8 years. Now 4 years later he is still writing one of the most successful blogs on the internet about Alzheimers.
I’ve been here in Alzheimer World almost 3 years and 6 months which some days seems like six years and others like 3 days and although I have only been living in 6 months,sometimes it is hard to remember when I didn’t live here, when Ken was just my Dad instead of my whole life.
When you live with an adult 24 hours a day, seven days a week, you learn to find space for and from each other. When you bring up a child, even on your own,there is joy and pride in the goals and milestones reached,with the ultimate aim being independence.When you live with an Alzheimers person the same applies but with a twist- Whilst you think you live with an adult and can get your space, their requirements are childlike (although the humour can still be quite risque! ), think toddler following you to the bathroom… There is no time out unless someone else can take your place.
The goals achieved are based around empowering and facilitating the Alzheimer person’s ability to function for as long as is possible. In essence it is all about them until the inevitable end because let us not forget Alzheimers is terminal.
If you don’t understand this then you have a very hard time being a carer. The truth is,when you are with your person it can only be about them.However,I am learning that within that confine there is something much larger, a space where what you once were no longer defines you.Where constraints of time, of professional accomplishments and even of lifelong dictates no longer hold sway. It is a place of Now..Living in the now as my accomplished blogger friend puts it and as a concept it is quite difficult to grasp.
Even when Mum died and I ended my past in the hope of a future, even after 3 years of spending almost every night with Dad, I still didn’t get it…Slow learner or what but it has taken until now, Until my world has shrunk almost to the four walls that surround me, to realise that what makes my father a joy to look after is that he has given up all of those learned and self-imposed constraints. His mind has been freed of those beliefs that we allow, that he allowed to constrain him for over 70 years of his life. He is now free and happy just to be, to give total focus to what is happening right now because when you have Alzheimers there is no yesterday and there is no tomorrow there is only right now and that right now becomes the most precious thing on the planet because
There is nothing else……there is only the moment and when the moment is over, it is gone, there is no memory of it left.It is as if that moment, that minute, that hour was all that ever existed, all that will ever exist.
The challenge is for me to find that same freedom without the help of Alzheimers, to live in the now and let go of those bonds that tie me to the old belief systems and stop me from fully being in this moment. Without thought of tomorrow or next week or next year and yet still with hope for a future because the difference between Dad and I is that at this moment I do still have a tomorrow and that tomorrow can be so full of promise if is unfettered by constraint.
There is beauty even in the most dreadful of times and in Alzheimers World there are many moments of beauty. If you look, you will see. But look you must because beauty is in the moments and minutes and if you take too long to open your eyes or your heart they will disappear and like raindrops on roses you’ll never know they existed.
What Kristofferson also said in the iconic Bobbie McGee was “nothing ain’t worth nothing less it’s free” Living in the moment costs nothing,so if being free means nothing left to lose, it must also mean there is so much more to gain and that also costs nothing.
Perhaps that is why Rob De Marco is still writing Alzheimers Reading Room long after his Mum has left him and us. We, none of us ask for what we are dealt in this life but if we accept and learn to live in the moment…in the now….we can only gain freedom.
” Feeling good was easy Lord, when Bobby sang the blues Feeling good was good enough for me Good enough for me and my Bobby McGee”