Throughout Jason’s recovery we have tried tons of different lists. The list saga has definitely proven to me that what I think is a good system, is not always the case. In the beginning my lists had colours and sublists and were scattered throughout the house like it was a scavenger hunt. Just in case anyone is wondering, that was not useful for managing Jason’s energy levels.
I think an important thing to clarify for anyone dealing with a brain injury is what medium works best for them. I’m a paper and pen girl. I LOVE scrawling lists on post it notes, crossing everything off and the joy of throwing the list in the fire when it’s complete. However, written notes mean Jason either needs to remember to bring them with him or needs to go back to the fridge every task to see what is next. We found quite a few good templates on etsy and pinterest that might work for different families. One we used for quite a while was this one from etsy: https://www.etsy.com/listing/174372800/daily-page-notepad-6-pack?ref=shop_home_feat_4 (there are also digital download versions available that you can fill in and print off easily)
When we used this list we had Jason’s daily routine detailed in the green To Do’s section and then filled in the rest of the page as needed so that while I was with clients he could navigate his day easily. We made the change away from this list when initiation and time management were becoming more problematic.
We now use OurHome which I’ve written about before. It’s a list app that works well and allows us both to add things to our own, and each other’s, lists as needed. You can set up reminders within the app so that you get notified when a task needs to be done (we always have reminders set for things like feed the animals, phone calls that need to be made etc).
Still, remembering to look at the list was a challenge so Jason found this app, After Unlock, that makes ourhome the first thing that pops up every time he unlocks his phone. This seems to work well for us, for right now.
As much as possible we try to organize our life into themes of the day. Mondays I try to stay home and organize, clean and be with my husband. Wednesdays we try to schedule Jason’s rehab appointments and have errands. We know by Thursday most weeks we need a quiet night at home. Sundays are for church and rest and planning how to make life work for the next week. For us, none of this is set in stone but more often than not that’s how the week plays out. We have our sleep routine as outlined previously which adds extra structure to our week to keep us on track.
On Sundays we sit down and try to list everything Jason has, or has to do, in the upcoming week and then build those items into his week. This exercise is crucial for allowing Jason to work on initiation, motivation, memory, time management, problem solving…all those executive functions that have been impacted by the brain injury and that he needs to strengthen for a return to work.
Now my caregiver confession is, I actually really suck at this process. It would be SO much easier to just make the plan myself. This is the time, every week, that I have to remind myself of our family goals, that we want Jason to be able to return to work and we want him to get as much practice as possible at building these skills.
In a stroke of genius, Pinterest threw this beautiful link (http://www.dosmallthingswithlove.com/2015/04/husband-and-wife-meeting-printable-agenda.html) up at me a few weeks ago and based on a few weeks of practice it has transformed our Sunday night planning session for me. Sunday nights are now not about sitting and helping my husband recover from brain injury, but about appreciating each other, communicating and getting on the same page. It might seem silly to some, but for me this outline has really changed how I approach our life routines.
Everything laid out for our Sunday night meetings – just missing the big mugs of tea that usually accompany us.
Bold claim for the title, but really my blog post can probably be summarized with one sentence: it’s different for everyone.
We were told repeatedly that routine and lists and organization need to become priorities in our life to minimize the work Jason’s brain is doing just to get through each day. And so we’ve spent the last two years trying to refine and adapt our routines and coping mechanisms to make life easy. We aren’t the best at it, and despite the fact that I actually love routine I’ve learned it’s really hard to enforce when you also want to feel like you have a full life.
- Life routine. In general, I do not set us up for success in general routine. My work as a massage therapist and as a Norwex sales rep does not have the same schedule week to week and so my ability to help out around the house changes. I have, at various times, considered trying to find an office job or retail with set hours, just to make our life a bit more predictable but frankly my job and coworkers are often one of the things that keep me sane and happy.
- Lists. Lists are great. I am a super list maker. I can have lists on the fridge and in my dayplanner and my phone and the car. I make a ton of lists. But do they make sense to Jason? Is my writing even legible? Is he even checking them? Lists are only a great tool if you use them after making them, which is sometimes a challenge. One of our goals for 2017 is to work on using lists more efficiently.
- Meals. Despite always being a meal planner, meals are an area we have struggled quite a bit since the brain injury. The exhaustion and frustration that controlled much of our life early in this journey meant that by dinner time we had no ability to cook. Even as we started to get more disciplined with sleep and routine, my grocery list making or shopping often left us scrambling when we didn’t have the right ingredients. We’ve since found a pretty good solution that I’ll discuss in another post.
- Relationship. Brain injury stole a lot of our newlywed memories and experiences. We’ve had to rework how we live out our marriage so that it a)helps us both feel loved and b) doesn’t take all of Jason’s energy.
Over the next month or so I’m going to go into each of these topics in a bit more depth to explain what systems we use that seem to help us live out routine. Nothing is new or amazing, I basically just explore pinterest for hours to see what other people do, then try it at home and adapt it 8467 times as needed. My hope is that with this mini series of posts we will be able to help anyone see that a) Brain injuries may require life long problem solving and energy conservation, b) provide examples of systems that may work for others or may spark ideas for others. Every brain injury is different, every family is different so what works for us today, may not work for us in a few months let alone for a family with different challenges.