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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



How keeping appointments can be hard with a brain injury

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I know what you’re thinking, “just use a calendar or diary.” Yes I do, and I still get it wrong. Why? Because my stupid brain thinks it knows everything, and I don’t check. It can’t accept it’s now dreadful with dates and I shouldn’t assume I’ve got it right.

I can be certain that I know when I need to be somewhere, but it turns out I’m a week wrong. Or I’m right about the date I’m meant to be there, but that’s not today’s date and so I’m still wrong. So why can’t I just check? I do it all the time so why don’t I accept that needs to be part of my routine? I find it so frustrating that I know I have this problem but I’m not helping myself.

When I arrive for the appointment and check in, I know I’ve done it again the moment the receptionist says “I can’t see your appointment for today.” Straight away I’m thinking of what I wrote down and what the date today really is. This happened this week when I took my Dad for a medical appointment. I’d driven for 2.5 hours the night before from mine to his so I would be ready to take him the following morning. I knew it was for 3rd November at 10.15. I even had checked the time again to make sure I didn’t miss it. When you’ve come that far even my stupid brain agrees it’s worth double checking. I would have done that even before I became so dreadful with dates.

I'll write it down, have reminder letters sent, but I'm still dreadful with dates. My brain injury's stubborn & thinks it knows everything. Well it's wrong!
Following my brain injury I keep getting confused about dates of appointments.

This mistake didn’t affect just me.

So as I was checking him in, I was surprised when the receptionist couldn’t see his appointment. But then I thought how the evening before someone made the comment about it being November. At the time I thought that comment would be more appropriate on the 1st of the month. I assumed that as it was the 2nd she was just trying to use a conversation filler. But as I looked at the confused receptionist I realised my error. I was running a day ahead.

But this time it was even more complicated. Even when I asked if I was a day early, she said she couldn’t see any appointments for him at all. I know I can be dreadful with dates, but I don’t just make up appointments. Unfortunately I had forgotten the letter and it was sat in my house, the other side of the country. Another member of staff gave me a disapproving look and told me I should have brought the letter. Well that was it. I knew I’d made some errors, but I didn’t need someone telling me off. So I explained I have a brain injury so my memory isn’t great, but there’s no point in us going on about it because I can’t just get it. And I cried.

At that point they tried harder to find out when his appointment was due. I hate crying in public, but why does it take that for people to put in just a little more effort? As his appointment was with a mobile team it was on a different system. But yes I was a day early. Imagine if I’d accepted the first response of that he didn’t have an appointment at all. I would have gone home only to find I needed to reschedule the appointment and come back. I know the error was mine, which I quickly admitted. But I find it hard to understand why people are so reluctant to be helpful. It felt like they only took the extra step to avoid a scene.

I just want to be treated with respect.

I realise I’m taking this very personally, but I’m only human. I’m dreadful with dates, and accidentally make things confusing, but I want to be treated as a human. Not a number or naughty child. I’m a polite adult, I just sometimes need a little assistance. I treat others as I want to be treated, so I expect the same back. And that’s got nothing to do with my brain injury, that’s just being courteous.

Have you got a clever tip on how to make sure you get dates right? Do you find people only go the extra mile if you cry?


7 replies on “How keeping appointments can be hard with a brain injury”

So sorry this has happened to you. Have you tried a paper calendar? I write all my appointsments on it plus make an “x” on the current date at the end of each day. I can keep track of thr current day as well as any upcoming appointments. In the beginning I had to have a note pop up on my computer to remind me to check the calender. The calendar sits on the corner of my dining room table where I see it every day.

I’ve been using a diary but you’re right, a calendar would really help. Then James could see it too and he might give me another nudge. Thanks, I need to stop being so stubborn and accept that this simple solution will help me so much.

I was encouraged by my outpatients team to use the calander on my I pad for appointments and to set reminders. The good thing with using this is you can attach notes and addresses to it as well, the downside is you have to constantly check it and may still forget that you should be somewhere in 2 days time. I still use a paper calander that is hung near my computer

Yes I have started using a diary and my phone, but I need to be more disciplined as I still don’t put everything in both or check enough.

I hear you! I use two primary systems. My paper calendar is the first place I write an appointment, at the time I make the appointment.

Next, I say into my iPhone, “Hey Siri, set an appointment for (date) with (name) and then I can manually add in further notes and a reminder a few minutes, hours or a day before.

I will sometimes also say, “Hey Siri, set an alarm for (time) ” to give me an audible reminder to go somewhere or do something.

(if I get lost or disoriented getting home, Siri also comes to the rescue ?)

My paper calendar has a month at a glance and 2 pages per day, and it is a habit to write down what I did on a given day, because my sense of time is absolutely surreal.

Some “experts” strongly recommend paper OR digital Calendars.

When there is loss of short-term memory and other executive functions, paper AND digital seems to work best.

Notes written on 3 x 5 index cards also make sorting tasks, appointments, reminders & priorities a little easier.

Having just ONE PLACE to keep notes and loose papers also helps. ? Always visible, of course!

Early in my recovery, I had a long drive to a new location to see a Doctor who had knowledge of Brain Injury.

When I arrived, the door was locked, there was no answer on the telephone line, and painters were working in the office building hallway. I simply sat on the floor and sobbed hysterically. The doctor was just running late, and arrived about 15 minutes late, and during the session mentioned that the little “incident” in the hallway was not unusual for a brain injury survivor. ?

I have since learned many compensatory strategies and I’m happy to report I generally make it to appointments on time and have not collapsed sobbing into a puddle of tears in a few years.

It gets different, doesn’t it?

Thanks for your blog! Write on!

Sounds like you have worked out at pretty good system. I agree “experts” only can say what works for many people, but as we are all individuals sometimes we need a more bespoke answer.

I hope the doctor apologised for being late, especially when it resulted in so much unnecessary stress for you.

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