When I first sustained my brain injury, I expected some kind of physical recovery period. Maybe some therapy, rest and follow-up appointments. But what I wasn’t prepared for, and what no one really talks about, are the everyday challenges that continue long after you leave the hospital.
The truth is, brain injuries don’t just change how you feel, they change how you live, and one of the biggest challenges I’ve had to come to terms with is how my brain now works differently, particularly when it comes to memory.
People hear "memory loss" and think it means forgetting someone's birthday or misplacing your wallet occasionally, but it goes much deeper than that. It's not just that I forget things… It's that I often forget to remember in the first place!
When you start to lose track of the simple things in life such as what you were about to do, what someone just told you, what time your appointment is, it can feel like you're losing part of yourself.
Life After Discharge: The Real Recovery Begins
When I was discharged from hospital, I was left with very little information to prepare me for how different life was about to become. Jules and I were left to figure it out on our own, and that was hard.
It didn’t take long to realise that our old routines no longer worked. I’d forget conversations we just had, walk into rooms with no clue why I was there, miss medications, or lose track of what day or time it was. We’d make plans and five minutes later, I’d have no memory of what we agreed on, which was frustrating (for both of us)!
At first, we thought maybe I just needed more rest, or time to "bounce back." But eventually, we came to realise that this wasn’t a phase, it was part of the new normal, and we had to find ways to work with it - not against it.
Memory Loss Is Just the Beginning
What a lot of people don’t understand is that memory loss is only one piece of the cognitive puzzle after a brain injury. There’s also:
- Difficulty with focus and concentration
- Processing delays (needing more time to absorb and understand information)
- Fatigue that affects your ability to think clearly
- Emotional regulation issues (mood swings, frustration, anxiety)
- Difficulty with planning, organising, or completing tasks
All of these combine to create a mental fog that can be exhausting and unpredictable. And unless you’ve lived it, (or lived with someone going through it), it’s hard to understand just how disorienting it is.
Remembering to Remember
A phrase we now use regularly is “remembering to remember.” It's that mental process most people take for granted – like keeping track of what you need to do, when you need to do it, and remembering to actually do it.
Before my injury, I never thought twice about things like following a recipe or getting to an appointment. Now, Jules can remind me of something five times and I’ll still forget about it an hour later. This can be incredibly frustrating for her, as she is constantly having to remind me numerous times about things – and at the beginning, she felt like she wasn’t be listened to. That’s the part people don’t always understand, it’s not carelessness or an unwillingness to listen, it’s cognitive impairment.
Luckily for me, I have an amazing, understanding wife who knows that it’s not something I do intentionally, and I am so grateful for her constant support.
Tools and Tips That Help
Once we realised how essential reminders were, we started building our own systems to support me in day-to-day life. The most effective tool we’ve found? Our phones!
We use it for everything:
- Calendar reminders: Every appointment, every event, every medication dose goes in the calendar.
- Repeat alarms: I have alarms set for my medication, meetings, meals, and even when to start getting ready if I have to be somewhere. Without these, I lose track of time and end up being late or missing something altogether.
- Sticky notes and visual cues: We put notes in places where I’ll see them, like on the fridge, the bathroom mirror, by the kettle. This helps me to remember certain things I needed to do that day.
- To-do lists: Simple, short, and bullet pointed. We try to keep the lists clear and achievable, because too many tasks at once can be overwhelming.
These small strategies have made a big difference. They help me feel more in control of my day and reduce the anxiety of forgetting something important. They also help Jules, because she doesn’t have to carry the full mental load for both of us.
A New Routine, A New Reality
After a brain injury, your entire routine can change - what used to be simple becomes complex, and that’s okay! It just means finding a new way of doing things.
There’s no one-size-fits-all method, so it’s important to try different things out and find what works for you. Some people prefer voice memos instead of written notes, and others use visual planners or colour-coded charts. The key is consistency, with a bit of trial and error, too.
One piece of advice I can give is this: Don’t expect everything to work overnight, some days will be harder than others. But every small win, like remembering your meds, getting to an appointment on time, or following a plan… It counts! Celebrate the small achievements, because they matter just as much as the big ones.
Supporting Each Other Through It
Living with a brain injury doesn’t just affect the person who sustained it, it affects their whole family. I’ve seen firsthand how tough it’s been for Jules. At times, I know it must feel like she’s talking to a wall when I forget the same thing for the third or fourth time. But we’ve learned how to talk about it, how to support each other, and most importantly, how to laugh through the frustrations.
If you’re supporting someone with a brain injury, please remember, it’s not that they aren’t listening. It’s that their brain may not be processing or storing the information like it used to. Be patient, be kind, and when in doubt, write it down!
Final Thoughts: You're Not Alone
No one really prepares you for the reality of life after a brain injury. The cognitive challenges, the emotional ups and downs, or the way your identity shifts. But you’re not alone in it.
You may need to relearn how to do everyday tasks and you might forget more than you’re used to. You’ll probably get frustrated, but there are tools to help. There are strategies you can build and there are people - like me and Jules - who understand exactly what you’re going through.
So, start where you are today. Use your phone, write reminders, and be kind to yourself. But most importantly - remember to remember that you’re doing your best, and that’s more than enough.
With love, patience, and a lot of phone alarms,
Mark & Jules