Bit of a serious topic this, I try to balance this blog as much as I can, trying to get the right mix of writing/silly makeup posts and Photography/what is going on with Abi-type posts as possible, because I basically wanted this blog to be a space where I can elaborate on things I mention elsewhere on the web. I tweeted about my day yesterday and got a few DM’s from people who have been through a similar thing. I was in two minds if I should write about this at all but it affected me so deeply, I felt it was relevant.
A friend of mine has a Mother who is suffering from Early-Onset Dementia. I have known this family since I was quite young and came to know (as friends of ones parents so often do at that age) them as “Auntie and Uncle”. Growing up, I spent a lot of time with these people and even went on holiday with them.
So life goes on and I lose touch with the friend a bit, not acrimoniously, but just because life takes you in different directions sometimes. We stay in touch via Facebook but opportunities to meet up are rare. It was, with interest, I read an email that flew into my Inbox two weeks ago.
I learnt, amidst the small talk and vague allusions to a life I no longer had any real part in, about my friends Mother’s worsening condition. She told me about her rapid decline into a state that can only be described as removed from the past and that how she was now in residential care just outside of Bristol, and would I consider meeting up with her?
On my way to the place we had arranged to meet, I considered what it would be like to lose what is most precious to me, having physically lost some dearly loved ones, I prize my memories of my time with them highly, my childhood, my loves, my losses. My friends always remark on my extraordinary capacity to recall certain events with almost photographic clarity; I can tell you what you were wearing, where they were sitting and who was with us “Oh My God! You remember so much!” they always say to me. And it is true, I really do- I am aware of it, and I am also equally terrified of a time when I may not be able to recall things so well. So being faced with a person experiencing what I consider to be the single most terrifying aspect of ageing at such a young age, was a daunting prospect. I realised that it is one of the things I am most scared of.
How can we possibly know what it is like to lose our memories? If we lost them suddenly, yet still had the capacity to make new ones, would it be as bad as the slow drip, drip of loss that is dementia? The frustration and confusion at the failures of our own brains, so at odds with our willing bodies?
“Don’t be upset if she can’t remember you” My friend whispered to me on the way in, of course I wouldn’t be upset, I had already accepted the reality of having to start again with someone who had known me since I was 5 years old. “She has good days and bad days” she said, “Some days she has no idea who anyone is and other days she is as close to her old self as it is possible to be”.
I am not sure if any of you have been confronted with a person who is as familiar to you as a member of your own family who looks at you with a mixture of curiosity and confusion, trying hard to make sense where they should place you in the fabric of their life. I was not prepared for how I would feel as her eyes raked my face for some glimmer of recognition, eventually resigning herself to a bright “Well it’s lovely to meet you Abi, you are so very pretty! What do you do?”.
I was told that day was a good day, her daughter being addressed by name and a chat about something on television the day before, but I could tell that part of her had gone, her careful consideration of everything, the repetition and reassurances of those around her, almost anchoring her to reality. We spent over an hour with her and mostly it was good, there is no sense in being sad for someone who has no idea what they have lost. Maybe on some level she did know, I cannot possibly imagine what it must be like to have your memories ebb and flow with such alarming irregularity. I learnt people with this condition respond well to the patterns of familiarity and repetition which goes some way to explaining why residential care seemed to benefit her so well.
“I always worry that next time, she won’t remember who I am” my friend said, voicing the fear that I would imagine is almost universally shared by the loved ones of anyone suffering from a degenerative disease. On some levels, ignorance could be bliss, but to me there is nothing blissful about giving up your memories one by one to a life of confusion.
As we said our goodbyes, I was thinking ; This is what it is like to be erased from someones memory. I was part of a history that was no longer shared, but recalled by me alone. And it was the saddest thing ever.
I squeezed her hand and walked away, feeling hot and cold, like I always do before I am going to cry, I was almost at the end of the hallway when her voice rang out, loud and clear, her real voice, the voice I had always known “Abigail, remember me to your Mother my Darling, there’s a good girl”
I nodded that I would, went to the bathroom, and cried and cried.