Saturday, March 1, 2014

Still in There

Well meaning friends, one of them a brain expert, used to tell me that Bob wasn’t ‘in there’ anymore – that the Bob I knew and loved was gone.  I know their intentions were well meaning. They wanted to protect me from the grief of seeing my Soul Mate imprisoned behind a wall of broken and tangled neuro pathways.  They believed and wanted me to believe he was no longer present.
I started to fall into the ‘no one is home’ trap. It was easier to think he was gone once he became a sometimes-difficult man-child to take care of.  But over time I’ve learned differently.
I’ve written a few posts about this and I’m writing again because I think it’s so important. As the person changes dramatically, it may be easier for our own sake as caregivers and loved ones to think they’re gone. And because there’s so much fear that it may happen to us, we project ourselves into the situation and find it unbearable to consider we might still be in there, trapped behind the disease, unable to get out. How much easier to accept if we believe we would be gone and the person in front of us is too.
Certainly the person as we knew them before the disease, has changed. But behind the changes I believe the original person still exists - not shards of them but the essence of them.
Even now that Bob rarely makes sense – he’s in the last stage of Alz - I know Bob’s ‘in there’ – his personality is ‘in there’.  And every once and awhile he makes his way through the dead ends, the holes, the disintegrated streets of the mind to shine.
 Two Views of Bob and the Sunglasses 

My office manager, Made, recently visited Bob and sent me photos of his time at the cottage. (I’m in the States on my annual business trip while Bob stays with his caregivers in Bali). He wrote that Bob was attracted to his sunglasses so Made handed them to him.   In true Bob fashion he put them on and was transformed.
This photo zoomed me back to our life before Alz. As painful as it is to think my Bob is still present, it’s also comforting.  
A note to my readers - until I'm back in Bali in late March I'll be writing fewer posts.  My work load is pretty intense here in the States.