*The loss of memories can affect emotional responses and behaviour
*Repetition is key to improving memory
*Memories contribute to our sense of self
*The importance of perspective and attitude
*How it looks from the outside
*How it feels from the inside
The way psychologists and philosophers view memory is quite different – the later using a tripartite classification of experiential or ‘personal’ memories, propositional/factual memory, and practical/procedural memory. The difference here is significant. When we come to an understanding of how it feels to struggle with memory difficulties, it helps us to understand the depth of loss that some people experience.
Things aren’t always as black and white as they may seem. Memories are incredibly personal, and their loss can affect emotional responses and behaviour.
There was a time when it was believed we store memories in one part of the brain. There is a lot of research into cellular memory that shows memories can be found throughout the body and in other organs – such as the heart.
Very often, the things that most concern people following a brain injury are whether or not memories will return, together with the problems associated with the sense of self and communicating with others.
People can feel very lost when they try and say or think something, and the data, event or experiential memories that should be there, can’t be found.
Some things belie understanding because experiences can be so personal. Taken as a whole, we can understand that any issues with memory also plays a part in the overall struggles of living with brain injury outcomes.
Looking for the positives when you have no idea where you or anyone else fits in, or when memories or memory function may return, can be worrying and frightening.
Many people feel a sense of loss and frustration, even anger, at not being able to think of the things they want to or know they need to bring to their awareness and should be there.
Repetition is key
When we can resist frustration, we can instead focus on giving direct commands to the brain about the things we want ‘it’ to do. Getting upset adds to the problems. Learning to trust that the brain is hurt, and yet, is still trying to help us while it is repairing, is vital to how well we manage disruption to memory.
Repetition is critical when it comes to re-learning anything, including tasks. For example, if you are trying to learn how to make a cup of tea doing this only once a day may mean that it can take months or even years to re-master the skill.
However, if you focus on each task and repeat it over and over again for several days, this will help to build the myelin sheath around the new pathway making it stronger. What we need is to strengthen these paths so often that we form new habits so that we are once again able to carry out tasks automatically.
It is worth spending the time focusing on problematic tasks because the more we ‘re-store’ as a habit, the more thinking ‘space’ there is in the brain to be able to focus on other things, such as communication.
Keeping focused on a task also improves our ability to improve attention and concentration.
Every memory remains stored at some level – the problem people have is how to access the storage units when so many parts of the map are damaged. It is possible that neurological damage only inhibits access to memories, rather than erasing them, and this also fits with the testimony of longer-term survivors and more recent research.
Even when we struggle to live a life beyond what seems like the ‘two-second count’ after brain injury, and no matter how hard it seems to follow life, we have far more at our disposal than we imagine.
There are many strategies we can use to help with day-to-day living, and our attitude is probably our most excellent friend – especially when we understand just how much we can help ourselves merely by accepting that things may need to be done differently now.
It doesn’t always follow that those who had a strong working memory pre-injury will fare better than those who didn’t. It very much depends on the extent and nature of the damage.
The main thing to remember is that even though it doesn’t feel like it – everything is going ‘in there’ somewhere. It is the recall of moment-to-moment events that is the main contributor to frustration. Learning to be patient and learning to let things go is vital for self-esteem. This ability is also essential if you share a home with other people because constant displays of frustration can cause an atmosphere.
Acknowledge that for now, you have difficulty following what you are doing, accept this as part of the journey, and release stress because this only worsens the problems you have. Slowing down and being methodical will support the brain and make the journey through this phase more comfortable.
Memories are personal
Perspective. When other people try and ‘infill’ for you, it is essential to note this. You won’t recall all things the same way other people do. The ‘mechanics’ are different because of our history and the personal importance we relate to specific parts of an event and our differing perspectives and feelings at the time.
The ‘feeling’ we associated to any particular memory or event, what we learnt, what we ‘thought’ at the moment in time, this is an extremely individual thing – it is ‘personal’ to the point of uniqueness that even surpasses the complexity of a fingerprint.
The individuality and entanglements behind ‘experiential’ memory’ are beyond enormous. It is the very reason why no scientist can ever replicate human behaviour in a robot. Artificial intelligence can’t come close to what any ‘one’ individual human being might make of their own experience. Any attempt to replicate this will always be flawed.
It is rarely if ever, talked about, but it is ‘experiential’ memory that mostly gives us a sense of self. ‘Factual’ memories give us a sense of history and a time-line; our data provides us with knowledge and learning. If any part of the system ‘goes down,’ another will eventually take over. We do rebuild the links and can again find our own beliefs, truths, and justifications in what we remember.
Sense of ‘self’
We feel competent when we can strategically move from one moment to the next without faltering. We feel a sense of intelligence when we can remember the chronological details of our past. We feel comforted by knowing that we are doing things in familiar ways.
A lot of people do retain their inner core, ‘their sense of self,’ following a brain injury. For most, if not all people, this sense of history does come back. Amnesia, as in the loss of explicit memory is scary and frightening when and as it happens, however, links are re-forged, most noticeably to the memories linked to our ‘current life.’ That memory does have a remarkable propensity to ‘return’ over time, is hopefully of some comfort to people. The more we dig and poke, the more we aggregate and stir things up. Fear of what we will uncover or find may leave memories well and truly buried.
What is less comforting is understanding that ‘experiential‘ memory – the stuff that has the capacity beyond ‘factual’ recall to help us know and understand who we are, is very often far more difficult to re-grasp. It can take time and can feel as though you are growing up all over again as you re-build this lost functionality. When amnesia includes a lost sense of self, it can feel traumatic and adds to the feeling that someone has changed.
Dealing with Expectations
It might be better to approach tasks that include several or many steps may with help. It isn’t always easy to break things down into manageable steps or to think ahead, and it may take time and practice before people grasp the ‘how to’ of something they have always previously been able to do with ease.
Bare in mind that memory problems after a brain injury are caused by the physical damage within the brain, meaning that people cannot remember, rather than them not wanting to remember. Some memories stay, and some are lost, and mostly there is no choice about this.
How it feels on the inside
For example, someone who also has a loss of self-insight or self-awareness may not be aware of the impact their memory loss has on them. People can be oblivious to the fact there is a problem at all and may only notice that they can’t remember certain things when events or conversations prompt them.
Some people accept memory loss more readily than others as they realise that they are unable to change anything no matter how hard they try. Other people find it devastating and react with deep levels of confusion and distress becoming easily frustrated or angered when they can’t remember, think, or do something.
Unconsciously people can create psychological coping mechanisms such as ‘gap filling,’ where people say the first thing that comes into their head because they feel pressured to respond. What ‘comes out’ may or may not be relevant, and it can be difficult to stop this happening.
The response is firing directly from the fight/flight centres of the brain and isn’t compared to internal data, as this is missing, or filtered on the way out. The information given is usually a nearest best guess or can end up being a ‘shaggy dog’ story as someone gives a sermon in the hope that something might match or be relevant. The hope will be that the other person will pull the information out that they need.
It can be incredibly difficult for people to learn to say that they don’t know an answer or to ask if they can think about it. The reason for this is that not being able to remember the information they need will be an alien concept to the brain. People need to have the chance and time it takes to become fully conscious of their deficits.
It can feel as though there are hundreds of black holes in the brain where information used to be. You ‘look’ but nothing is there.
From the outside
Try not to take this personally or to make assumptions about someone’s intentions or character. It can seem as though someone has an attitude problem or that they are lazy when, in fact, they are putting enormous efforts into being able to meet expectations.
Some people do give up and retreat and isolate themselves. They may give excuses for not doing things rather than having to admit that they can’t remember how.
Sometimes people can think that their loved one is in denial or that they are psychologically protecting themselves from the shock, changes and trauma. However, this is rarely the case.
Tips and tools
Other things that help are:-
- Always keeping things in the same place – especially keys, wallets and eyeglasses
- Using a whiteboard or notice board to write down important information and events. Keep this in a prominent place that is easy to see
- Use post-it notes to label things, for example, cupboard doors, so you know the contents without having to open it
- Keeping notepads handy, especially by the bed and telephone
- Using lists and keeping list pads in the same places, e.g. a shopping list pad on in the kitchen
Following a set routine can also help. Other things that impact memory function are nutrition and sleep, so it is crucial to make sure you follow good sleep practices and eat a highly nutritious diet. Meditation and reflective techniques that encourage self-observation often have a much stronger impact than many people think.
Cellular Memory in Organ Transplants Leslie A. Takeuchi, BA, PTA
University of Queensland – Where are memories stored
Sven Bernecker – Memory Knowledge
Daniela Jopp and Christopher Hertzog – Activities, Self-Referent Memory Beliefs, and Cognitive Performance