Living with Memory Loss: Tips and Tears

Cassie is a mixed-race, disabled, PhD student and health researcher and consultant. She researches and writes on topics including all things social care, mental health, and disability. You can find her on instagram here and twitter here!

My name is Cassie. I am a PhD student, social and mental health researcher and consultant. I also live with memory loss. Not like someone with dementia who cannot make new memories, or like someone stressed or depressed who struggles with recall. Not even like those brain fog days when retrieving anything from your brain is like journeying through custard.

Everyone is forgetful, for sure; you write a shopping list, don’t bring it and can’t remember everything on it? That’s forgetfulness. Or you forget someone’s birthday or anniversary. But for me, memory loss affects every day of my life. It affects my understanding of the passing of time; because I don’t log events my short-term to long-term memory properly, I have no idea how much time has passed.

How does my memory loss manifest?

For me, it’s mainly my short-term memory; without an emotional connection to the thing I am meant to be remembering, it is just gone. If someone tells me something in passing, I need them to write it down for me because it goes in one ear and out the other. You can’t ask me to do something off-hand and expect me to remember, but a ten-minute conversation that I am in any way emotionally invested in? I’ll probably remember some of what you ask me (am I terrified for my thesis defence? Why yes, yes I am).

This sounds pretty common and I’m sure everyone remembers in-depth conversations better than quick ones, but for me, forgetting that my partner asked me to get milk from the shop looks like this: I walk to and from the shop, maybe five times, unaware that I have done it that many times, constantly trying to figure out why I was so sure I needed to go to the shop, my semi-paralysed hip aching and rebelling against being made to work beyond its limits. Limits that I can’t keep track of cause my memory loss prevents me from keeping track of time.

See? Big difference.

I forget about actions that I have done, need to do and have decided not to do. I forget the association between different things; I’ll get the hoover out after deciding to clean, then forget to clean and forget that the hoover – which would serve as a reminder – equates to cleaning. I won’t forget what it is, merely that it relates to the action of hoovering.

Every day is going round in circles; I never get anything finished because I forget that I am doing it and do something else, before returning to the first thing again, at which point I get distracted by an email, which reminds me that I need to send a text, but when I open my phone it is on a checkout screen for something I forgot I was buying. So I finish purchasing that on my phone but then I’ve forgotten why I looked at it in the first place.

It’s an endless cycle

What does it feel like?

Memory loss doesn’t feel like a hole in my head, or like there is a bit of my brain I can’t access. It’s more like running a track marathon and coming up against a wall and you can’t go through it, or over it or under it. You just have to go and run on another track.

For me, recall feels like a constant area of space in my brain which I can see out of the corner of my eye and when I look directly at it, it is gone. I am constantly upset about it; it’s so easy to feel annoying or like a burden. I need people to be more patient with me.

Tips!

Apps: I cannot stress enough the use of apps; I currently love Tick Tick, it’s a to-do list combined with a calendar app; so I can connect all of my emails to it and add to-do lists for my different roles as well as my personal life. Anything I don’t get done during the day just moves onto the next one.

Specific notebooks for specific projects – I have individual notebooks for all of the projects I am currently working on. You just have to remember to use them.

Asking people to write things down for you; it feels embarrassing at first, but it is just a minor adjustment that the people in your life will not mind making if it makes things easier for you.

Asking permission to record meetings! This is all the more accepted now that we live in a zoom-heavy time.

Most importantly: you have to accept that people around you will ‘mother’ you. And it’s deeply frustrating acknowledging that you have to give up some amount of independence but it makes life so much easier to move on from the shame and ask for help.

If I’ve got this, then you can get this too. Just take your time and ask for help – my DMs are always open.

@soapsub on Instagram and twitter