How families can use technology remotely to help a brain injury survivor maintain their independence
Written by Michelle Munt, 20 June 2021
Living with a brain injury means adapting and finding coping techniques that work for you. Often this can mean a lot of trial and error as you look to find which methods work best for you. There is a good range of assistive technology out there which could support you as well. They can help you with mobility problems, memory issues and even communication. As a brain injury survivor myself, I have used some and when I was caring for my dad when Alzheimer’s was making it difficult for him to live at home on his own I introduced him to some as well.
The majority of brain injury survivors will struggle with their memory. For me, my working and short term memory were a problem for a few years. Thankfully, these have improved or maybe I’ve just got better at coping. Actually, it’s probably a bit of both. I still find my medium term memory is a bit like Swiss cheese, so that’s something for me to work on.
I want to share with you how I used technology to support my dad
As we lived 2.5 hours apart and I was still in the early days of my own brain injury recovery I couldn’t be there on a daily basis. However, as dad turned 80, his memory issues were impacting his daily life. District nurses came twice a day to monitor his diabetes, as his condition was very difficult to control, and administer his insulin injection. But he would forget if they had been or not meaning he might go out when they were about to visit, or I might get a call in the late evening from him saying they hadn’t come so he was going to do his own injection. For those who don’t know, it is very dangerous for a diabetes patient to miss their injection, or even worse, overdose on insulin. Both can result in coma or even death, but the overdose will bring this on even faster. I would try to contact the nurses to check if they had already administered his medication, but if this was outside of office hours I couldn’t always get an answer. I admit that on these occasions I would tell dad that I had confirmed they had been when I genuinely didn’t know because it was more likely he would survive the night even if he’d missed his evening dose. Thankfully, it was always the case that he had in fact had his dose and just forgotten, but it was not a risk I enjoyed taking.
Helping a brain injury survivor maintain their schedule for the day
As we live in the 21st century there is a lot of technology out there which you might want to look into in order to support the survivor in your life who wants to maintain an independent lifestyle. The first thing that you need to consider, is has the person got the capacity to learn how to use the new thing you want to introduce. For dad, unfortunately he was at a stage where even though he was a very intelligent man who was a computer programmer long before home PC’s were a thing, he couldn’t retain new instructions. Therefore solutions like apps on smart phones and tablets were not an option for him. For many brain injury survivors, apps help them plan their day, and remind them of things so are a wonderful tool which help them stay independent. If you’re looking for some of these I suggest you check out Alfred (Google play store version) (Apple version) or Q-Card (Google play version) (Apple version.)
The work around to put in place
Instead, I had to have something that I could update for him that he would always see, and he didn’t need to remember how to work it, just read it. I needed to be able to know when people came to his house, and then be able to have an up to date sign telling him if someone was due to come, or if they had already been. First I got his permission to put a camera in his porch so I could see visitors coming and going. Also, we agreed on a key safe on the outside of the house so the nurses (and later on, carers) could enter the house even if he didn’t answer the door. Most mini camera systems come with an app which can record movement activity in chunks, making it easier to see a particular piece of footage. If you do this, I suggest you put a sign in the window informing people that there is a camera. You must respect the privacy of the individual, so getting their agreement is paramount and then the sign ensures that you have tried to make sure visitors understand they will be briefly filmed too.
Next I set up a digital photo frame by his front door. Instead of sending it photos I would put succinct messages telling him what he needed to know. You can’t just send it a document so I would use PowerPoint to make the message a PNG image. I colour coded them so that at a glance he would have an indication as to what the message was. For example, if I was telling him not to leave because the nurses were coming, it would be a bright red background with the text in white. Red for stop, so he was more likely to take in the instruction. That way if he was about to go out but he needed to wait for the nurses, he would see it and instead just take a seat. This method does require the home to have Wi-Fi with a decent signal in the area that you are setting up the devices. I used a simple Wi-Fi booster in his front room to reduce drop out. For dad this worked really well. It did mean I needed to update the photo frame several times a day after checking who had visited that day, so it isn’t something that you can set up once and just leave to run. However, it did reduce stress levels for both dad and I as it helped him maintain his schedule better, so it was worth the effort.
Use technology sparingly when there is the possibility of further recovery
It’s important to remember that unlike my dad, most brain injury survivors will see some recovery, especially when they are engaging in rehabilitation therapies. Therefore it’s important to use technology as a support rather than a substitute. My memory did get better, so I now use memory apps only as a back-up. We still need to help the brain build new pathways and we must challenge it in order to do that. So just like when you were asked to work out your sums and only check them with a calculator in school, that’s a good approach to use when it comes to technology for brain injury survivors.
A car accident in December 2014 left Michelle with a diffuse axonal brain injury which went undiagnosed for a year. It was accepted that she had a brain injury, but it wasn't recognised that it was a serious one and therefore had very little support. During this time her dad was diagnosed with Alzhiemers'. Despite living on the opposite side of the country, she supported him through this distressing experience as she found was able to relate to many of the symptoms he was experiencing.
Michelle's injury meant she could not return to her job in recruitment and business development as she didn't know how long her recovery would take. This prompted her to start a blog bout brain injury @jumbledbrain.com so she could reach out to others. Michelle also runs a Facebook group of almost 6,000 members. The community share their experiences and tips with each other offering support wherever they can.