One of the hardest things about AD, is the personality changes. People change, sometimes drastically. The charming may become vicious, the loving may become unlovely and unlovable. For some, the changes last forever, for others they are but a phase.
Some years ago, my mother became this person who clearly did not trust me at all. If I said, "Go North", she would go South. If I said "Save", she would want to spend. So it was. You have to learn to deal, and to not take it too personally. Nowadays, she looks at me with something akin to disgust but I get that. Kinda.
The reason all this is on my mind today is that I'm wondering when the end comes, what do you grieve? Do you grieve for the original version of the person or the version 2.0? I'm trying to figure that out.
My aunt who also had AD, has just passed and it is only now, in these moments of reflection, that I can remember the before. In the middle of it, in the middle of the ocean of caregiving and worry and money and bills, the personality changes and the suspicion, you have no time to think about the before. At the end however, all that comes to mind is the before.
So here's my remembrance of before:
My aunt, like her aunt before her, was a singer. Auntie Elma, my Granny's youngest sister had, family lore says, a gorgeous nightclub singer voice. I don't know that Auntie Elma ever sang professionally but the story of her gift is very much a part of family lore.
My aunt CMM, Mummy's younger sister who left us yesterday - August 30, 2012 - was also a gifted singer. She started out as a church singer. She got the nightclub bug probably while she lived in London in the sixties and seventies.
Aunt moved back home to Trinidad in the mid-seventies and worked first as a legal secretary. Sometime in the eighties, she went to Parliament where she worked as a Senate recorder. She was a palantypist. They are the folks who do verbatim recording of court and, in Trinidad, Senate proceedings and then later transcribe those notes for the permanent record. She was very good at what she did. Very good. Outside of the office, she loved her church - Belmont Methodist Church, Belmont, Trinidad - and she loved her singing, yes, in the nightclubs.
When she first came home, I discovered 'hayfever'. She sneezed constantly. Who knew that there were allergens in the air in Port of Spain? I certainly didn't. Staying at Granny's on the weekends was all the cooler because Cynthia was there. But all of that was before the inevitable and strange personality changes: the hiding of canned food in the cupboards; the resistance to any suggestions about the family house; the intransigence about pretty much everything. The real break for me came when she asked me to return to her a jacket she'd given me several years earlier. Of course, I no longer had the garment and, knowing nothing about the journey upon which she had embarked, I just thought she was mean-spirited. How wrong I was!
So I wonder again: for whom do we grieve? Version 1.0 or version 2.0? Version 2.0 got me so angry in March 2006 while I was there on vacation, that the top of my head newly flew off. But again, personality changes; part of the journey. Didn't know.
What I do know is that from that time, I started taking steps back from her. Isn't that inevitable? When she asked me to return the jacket, I took a step back. When we discovered the canned food in her wardrobe, I took a step back. Every time something jarring occurred, I stepped back. Now where am I? I'm so far back, I can barely see her and yet when I was at home two and a half weeks ago, it shocked and pained me to look at her. She was a shadow. She certainly wasn't the CMM who would play Monopoly, whist or turn down poker with joy until 1 in the morning with her pre-teen nieces and nephew.
This is a miserable disease. It robs you of the present, and, if you don't know better (which you don't at the beginning of the process), it causes you to rethink the past as well. Fortunately, in grieving there is sweet remembrance, usually of mostly the good stuff. Funny how the bad stuff falls away eh? Maybe we should push that stuff away and consign it to the outer darkness? That's probably where it belongs.
Still, the loss is hollow. What have I lost? Who, have I lost? The whole relationship got so torn up such a long time ago that I no longer know truth from fiction.
This is a miserable disease.