Tuesday 16 March 2021

Brain Awareness Week - Living with memory loss

Illustration of a blue brain with coloured circles and lines connecting to the circles. In orange text it reads Brain Awareness Week.
Living with memory loss and cognitive difficulties is especially challenging to live with. My memory loss affects my short-term memory and is exacerbated by other symptoms of my disabilities such as 'brain fog', fatigue, migraine or following a non epileptic seizure.

Memory loss is a lot more than forgetting where you put your keys or mobile phone down (though that does happen a lot). It can be quite distressing or frustrating at times. Like going into a room several time desperately trying to remember what is is you are wanting sometimes getting distressed because you simply can't remember what you are after, or being unable to distinguish between 5 minutes and five hours and forgetting what you had done the day before. I try lots of things like having sticky notes written by myself or others but even then I can read the message and forget what I read 5 minutes later.

Sometimes people can get frustrated with my memory loss as they have to repeat things to me a lot which can be difficult sometimes as I genuinely cannot remember what they had told me verbally.

What can help

  • Make notes; this could be hand written notes or voice memos - usually your phone or smart watch has an inbuilt voice memo app or you can download one.
  • Having a wipe board up somewhere to write down the day, date, appointments and reminders.
  • Try and get in the habit of putting certain things like you keys, mobile phone, bag, medication etc in the same place all the time. I find repletion help as it eventually goes into you mid-term memory then eventually your long term-memory (if it is your short-term memory that you struggle with).
  • Letting others know important information, this could be a family member, friend or carer so they can remember for you. If you have appointments and depending on who the appointment is with you could ask them to send you a text or email prior to your appointment to remind you of the appointment that will be happening the following day or in a few hours time.
  • Take someone with you to appoinments and ask them to take notes. Also ask the clinician you are seeing if they could write down some important notes for you. If you have cognitive difficulties with prearranged consent you may be allowed to also record the appointment.
  • If people around you get funs treated with you memory loss try to help them understand. We also find in our house making light of my memory loss helps it feel less stressful and frustrating for everyone.
  • Use the reminders app, and alarms on your phone or smart watch.
  • Colour-code what needs to be done and use the same colour-coding all the time as this will help you associate certain colours with different things. So you could have purple for appointments, green for meals, dark blue for important reminders and light blue for less important reminders all as examples; whatever things you have on your diary and needs to be done.
  • Set up the calendar on your laptop, phone, tablet or smart watch -you could have a wall calendar but I prefer electronic calendars as I can edit them if things changes and it looks less messy if things need deleting. Sometimes depending on your devices they may sync across all devices; this is why I have all Apple products which is my preferred make of electronics. On my calendar I have my Daily Plan even though I know it by now but I also put up appointments, deliveries, certain to-do list items, incoming and out-going money etc which is all colour-coded.
  • Alternatively or alongside your calendar you may also want to have a planner/Filofax or bullet journal, especially for specific things. I keep a bullet journal to help me plan and organise my blog and YouTube channel.
  • Try not to get annoyed with yourself if you forget something; I know this is easier said than done as I often get annoyed with myself for forgetting things especially appointments.