I don’t normally write about the deeply personal stuff I am going through, not the bad stuff anyway; but from time to time I need to get it off my chest.
When my Mum was first diagnosed with early onset dementia or even in the months immediately preceding that, when the forgetfulness and periods of confusion were getting more pronounced, the worst thing was the fear. I happen to be a natural empath, but even if I had no empathic abilities whatsoever I think it would have been impossible not to feel the terrors she experienced. You could see it in her eyes and feel it in the air even though she almost never spoke of it out loud.
Every so often the knowledge that she was loosing her mind struck her like the bite of a wild animal. The fear that she was loosing everything and everyone she held dear; that she would forget everyone and everything. The thought that she might forget her daughter’s face or even that she had a daughter… The glimpse into a future where she would either be insane or a cabbage…
Like my Mum, I have always prided myself in confronting my fears. I fly several times a month although the thought of flying used to make me sick. I can approach and even lead people even though I was always much more shy and nervous of strangers than most people realised. I can hold a spider in my hand despite the fact that I used to scream hysterically and come close to fainting at the mere suspicion that there might be a spider in the same room as me. But how do you confront the fear that your mind is going; that chaos is slowly replacing every element of order? How do you confront the certain knowledge that you are going to be insane?
My Mum never spoke of this. She didn’t need to. I felt it.
It broke my heart when she had to move out of our family home because I was no longer able to look after her. It took a long time to really get used to the idea that she was living in a nursing home where other people would tend to her daily needs. Just going there, confirmed her fears; that she had become an adult who was unable to look after herself. That she was slipping away.
Gradually I got my own life back together again. I did well at work. I got a girlfriend. I took big steps in my spiritual path. Perhaps I started to express my true self more stridently than ever before. And instead of being a 24 hour nurse I became a daily visitor to my Mum. And when working, weeks and sometimes months pass when I don’t see her…
The insidious dementia that was claiming my Mum took a sweeter turn. Slowly but surely her memories and her mind were taken from her, but at the same time the fear diminished. She became author of her own childlike world, making her own sense of colours and patterns that used to have other meanings. It was disturbing and hard for me to see, but at the same time comforting… She has been living in a fairy-tale land of disconnected memories and fantasies, a place where the fear seemed to be gone.
So while I knew she is still dying and that she would inevitably fade away from me more and more, I felt a little easier about getting on with my own life. She seemed safe and comforted in her own world.
Until this week. A few days ago at the end of an uneventful visit in which she talked complete nonsense and I pretended to understand, her expression changed. “What’s wrong?” I asked, but I didn’t need to. I recognised that expression; that far away terror in her eyes.
And for the first time since she has been in the nursing home she actually said it in words. “I am afraid.”
“What are you afraid of?” I asked.
“I don’t know. I just feel frightened of something.”
Even if she did know, she couldn’t explain it. The disease has robbed her of vocabulary. Is it still fear of what she is loosing, of what she is becoming? Is it the feeling that things are not right even though she no longer understands that she is ill? Is it the knowledge that her world is now ruled by chaos? I it the primordial fear of death? Is it pain that she no longer has words for? Was it that she lost track even of who I was? Was it that every time she goes into a room she has no memory of ever having been there before or of the other people who are there?
The fear is back in her life, hiding in the corners of her mind. It cannot be described or captured by words. It is slippery like a ghost, like a ghoul lurking in the shadows. And I can’t protect her from it.
I can only hope that it has not come back in force. That it is something she will only bump into occasionally and that I (or somebody else) will be there to hold her hand when it strikes.