last weekend, I found myself amidst a moment I’d been dreading since we first received my mother’s diagnosis of early onset Alzheimer’s disease (eoad) – the moment her memory forgot who I was. And it was devastating.
it was a fleeting moment that lasted around an hour in total, where my face was foreign to her and I had to pretend with every fibre of my being that it was okay, whilst internally drowning in a sea of fear and hopelessness.
All I could think was, was this it? Would she never remember me as her daughter again? Was this all I was going to get? Had I taken all the moments before this one for granted?
And it hit me like a truck.
I thought I might have been somewhat prepared, I thought that maybe because I knew it was coming, that I would somehow be a little more resolved with the situation. But in that moment when she looked at me, eyebrows furrowed and smile down-turned, trying her hardest to work out who I was and whispered, “I’m sorry, I just don’t know who you are” – i realised, I’m never going to be ready for this moment to be permanent. I’m never going to be okay with having no more moments where she knows.
One day I am going to be a forgotten chapter of her mind, and I’m not sure how I survive this. I’m not sure how my father will survive this. How any of us will. Or how any of us will be prepared for the day that eoad permanently erases us from her world.
The forgotten hour was hard enough, let alone a lifetime, but one where I was forced to put my own emotions in a metaphorical box deep in the depths of me and let my nursing training steer where I could not. It was almost as if I put myself into a nurse-led autopilot where I moved through the process of gaining trust, establishing requirement and facilitating a safe environment. All the the while disassociating the fact that this was happening to one of the most single-handedly important people in my life.
This entailed keeping Dad from continuously showing Mum family pictures and asking her to remember in his own cloud of fear, and yet somehow giving her permission to have forgotten us in the first place to focus on recognising her surroundings as safe if not familiar.
Eventually I was able to convince her I needed her company to go visit the “dogs outside” (Igloo and Millie) in a ruse to incorporate animal therapy with the goal of settling her. Somewhere in my own mind I was able to rationalise that my fear of my mother no longer recognising me, was far less than her own fear of suddenly being somewhere perceivably unknown and unsafe. I can’t begin to even imagine how such a wonderfully brilliant mind such as hers was struggling to comprehend the smallest of things such as where am I?
As her memory recovered and she began to move her mind back from the lapse in time to a world she’s always known, I felt overwhelming relief sink into my bones and settle there with an uneasiness – how soon would it be before this happened again? Did it matter? I mean she was back now, shouldn’t I just be making the most of this?
Ever since, I’ve tried to shift the feeling that I should be doing more. Taking more photos, fund raising for a cure, spending more time with her – but also questioning whether any of these are going to ultimately make a difference in the end. If the outcome is that we loose her either way – then how is anything we do going to make it bearable.
I think the answer is that it won’t. And that’s something I’m really struggling to come to terms with. I asked Z the other night whether there would be a time that I didn’t feel sad again, and he replied with as much love in his words as possible, that he didn’t think so – but that I would learn how to carry it better and someday it wouldn’t feel as heavy.
I don’t pretend to be any more okay with this as a prospect, but I do know that I can inject as much love into the moments we have left so that there’s perhaps something to counterbalance the sadness that gently laps at their shorelines.
There may be absolutely nothing I can do to prevent what lays ahead for us in navigating the ripple effects of eoad – but I can let go of my preconceived idea that I need to be prepared for the day we have to let go. Because I can’t be, and I won’t be.
All we have is now. All we have is love. All I can do is use both.
d x
Life, She Wrote. 