Thursday, August 13, 2015

struggling to make sense

My mother, Mags has been diagnosed with Stage One Dementia. 
That’s Stage One on the New Zealand scale – America has five, though this may be confused with the Five Stages of Grief, it’s dementia after all.

There have been a few struggles with this but mostly its things that we can laugh at. 
Boy I am not looking forward to the end of the laughter.
So far she is very chatty, very, very chatty. 
Every car ride we take is full of surprises at new buildings and different roads. 
There are stories about that shop or this corner that I’ve never heard – I was only just told my standard 2 teacher broke her neck falling off a balcony at Waihi Beach not that long after she taught me, this may or may not be true. 
This has nothing to do with any of the stories my mother told me about her years of shopping in Hamilton East. 
Her memory’s concept of real time fluctuates. 
One moment its 1982, next it’s 1953 but mostly it’s still 2015,
she checks regularly to be sure. 
Problem is she introduces a long past story or asks a question as if it is current observation without any reference to the conversation she has planted it in. 
To be fair this is not a recent thing but then the dementia symptoms have been creeping up on us over a significant amount of time. 
Probably the hardest bit to deal with at this kinda early stage is when she gets really sad, just super sad.
And teary. 
It’s quite something to come across someone who is sitting quietly weeping, just silent tears running down her cheeks.  She weeps about loss, loss of unknown things, things beyond her grasp.    She weeps about things being beyond her control, things that were within her control not that long ago, things that are now on the edge on her knowledge but too far to manage. She weeps because things that were familiar are no longer. 
So many things on the edge of her memory. 

The other morning, Mags woke to a room filled with morning sunlight and warmth from the heater oil fin heater left on overnight. 
I had just stepped into her room to leave her morning pills by her bed. 
She seemed alert, she seemed like she had had a good sleep. 
She asked how long we had been here.  I said, you for a few weeks and we had been there for some months.  She asked if I were going to work and would I be home for lunch.  I said I was about to leave for work but wouldn’t be home for lunch. 
And then she asked how long we had been in the Hawkes Bay – we live in the Waikato – and I realized we had been speaking to two different things.  When I queried her, she said that she had been dreaming of holidaying in the Hawkes Bay and covered it up as much as she was able.  But for the first five minutes of her morning we were on holiday in the Hawkes Bay, enjoying summer sun and she was looking forward to a day of reading and resting outside in the gentle warmth. 
Not a bad way to start the day I say. 

I don’t mind these collisions of memory and desires. 
But I borrow worry for when the memories are no longer there and the desires are increasingly simplistic and needful. 
I am watchful for change.
Noting incidents and words, unsurely judging their relationship to reality and time. 
I worry that I am too watchful, reading into silliness something more serious.
Then I worry that that I am not watchful enough. 
 It worries me that she will slip out of the house and slowly walk across busy and fast roads to the shop and it worries me that she doesn’t. 
It worries me that she is too compliant. 
It worries me that she feels useless but can’t be bothered doing anything. 
It worries me that she is losing herself and gaining timidity. 
 It worries me as I wash her back that her bones are so small and close to the surface but it also worries me that her tummy is too round and she only wants to eat ice cream but devours everything I put in front of her.

For now it mostly it bothers me that I can keep her safe and that she doesn’t push back like she used to.  I want her to walk away by herself. 
I want to her use her independence while she has it. 
I want to her feel free to be herself and to have no pressure as her world slips away. 

We are nearing the end of Stage One Dementia and there is nothing to do but wait and make the most of the time we have listening to stories that get stuck in a repetitive groove and smiling at silly things, being playful and simple. 
I’m trying to make life like one of those long summers afternoons that never end, that holds only warm goodness and pleasant relaxation of slowly swinging hammocks and perfect summer dresses, of fresh sandy feet and the smell of sweet ripeness in the air. 
Those days that wrap themselves around you like a sleepy sigh.  
But I am failing.  I can't not fail.

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