Memory Matters – Forgetting you’re Forgetful.

From 28 September to 4 October 2020 Headway, a charity helping to improve the lives of those affected by a brain injury, are raising awareness of the ways in which memory problems can affect brain injury survivors and their families.

We spent some time speaking to James about how bacterial meningitis left him with memory loss, and how this has affected him and his family.

James suffered from a delay in diagnosis of meningococcal meningitis (type B), which resulted in advanced septicaemia and life changing injuries. One of those injuries was to his memory, a known complication of the disease. James was 32 years old and at the peak of his career, with a wife and 6-year-old daughter. James was extremely lucky to survive, particularly as he was initially advised that he was suffering from flu, therefore by the time he reached hospital he was in a critical condition. His family were warned that he was unlikely to survive.

Following a long and painful recovery, James was returned home to his family for rehabilitation, which was a process that took around 3 years in total. James was unable to walk unaided for around 18 months, requiring daily dressings of the wounds caused by sepsis. He continued to suffer from debilitating thunderclap headaches, which continue to this day and are likely to be permanent. Whilst the symptoms to date fluctuate, he suffers episodes of severe nose bleeds and memory loss.

James first realised he was suffering from a poor memory within a few weeks of coming home. He would lose large chunks of time where he had absolutely no recollection, even when prompted, of events which had happened or that had been planned. It was beyond the odd forgetful moment which, when prompted you remember, and James became extremely frustrated.

During an appointment to see his GP for a general review, James realised that his memory had been affected by the brain injury, and that this was unlikely to improve.

The very difficult realisation for James, is that he forgets that he is forgetful, which he described as a bizarre sensation when you are then reminded that you have short term memory loss.

James was in a senior position in his career, with a great deal of responsibility for a large number of employees, which involved worldwide travel. When James eventually returned to work, his wife noticed that his memory would become much worse when he was very tired, stressed or run down. With that, James realised he needed to have very honest conversations with his colleagues to explain the impact that meningitis had had on his memory. He would often allocate a job to one colleague, before being told that he had already done so, forget meeting or attend the meeting but forgetting the subject. He came up with a system whereby he would write everything down in his Filofax. If it wasn’t written down, it would not get done and therefore he and his Filofax were quite the team!

Ultimately, James took early retirement owing to an increase in the frequency of thunderclap headaches and cerebral brain haemorrhages, which had an even more profound impact on his memory. The reduction in stress and slower pace has seen an improvement in the frequency of episodes, although they remain as severe when they do occur.

Looking back, whilst James was fully involved in his family’s life and enjoyed celebrations, holidays, birthdays and Christmases, he simply cannot remember a number of these events now. James used an example of a holiday to France, where he drove through Brittany and stayed in a hotel for 10 days. It was a holiday his wife and daughter very much enjoyed, but he has absolutely no recollection of it. Had it not been for the photographs taken by his wife he would insist that the holiday did not happen. James says it feels like you are losing chunks of your life that you just cannot remember, and with that comes a great deal of frustration and disappointment.

On discussing the full effects of memory loss, James also recalls how, if he goes away either with work or with his family, when he wakes up, he is often totally disorientated and cannot remember where he is. It can take some time to realise where he is, which is extremely disconcerting, and if he is on his own will often need to check his trusty Filofax.

In fact James feels that his family know more about the impact on his memory than he does, as he just isn’t aware of the extent of his memory loss. His daughter explained how, having grown up with a Dad with memory loss, she and her Mum came up with a series or methods to help support her Dad during difficult times. One of the key points is not to draw attention to the fact you have been told a story 4 times in the same day, or that you were left waiting at the coffee shop alone before realising, despite reminding him that day, he has forgotten. It is important not to alert him during these phases, as he just gets frustrated and that only increases to the stress of the situation and prolongs the episode. It is also incredibly important to look out for those early triggers with such an invisible injury, and wonder why he is more forgetful than usual, and seeking to remedy that in the hope that it will prevent another thunderclap headache or brain haemorrhage, and further memory loss.

To look at, James looks like a fit and healthy man, but this is a good example of the invisible injuries and impact of memory loss following a brain injury.

Headway are reiterating just how much your memory matters, and how common this invisible injury is after a brain injury of any kind, raising awareness of the long term impact and how to live with a poor memory.