The ultimate preplanning meal planning strategy

Like I’ve said before I have always been a meal planner. For me, I really struggled to adapt to the differences between pre-brain injury meal planning and meal planning in the midst of exhaustion and grief. I nearly always missed ingredients that were crucial or got quantities wrong. Half the time meals that looked good on Saturday before grocery shopping were overwhelmingly difficult by Wednesday night after 7 clients. I just really wasn’t great at it and it meant we ate take out a lot.

I reworked my planning multiple times over the last two years and it pretty much always failed me. Now, just a few months ago we started a new system and I have to say we have had much more success. We moved into this house and were blessed with tons of storage space which is probably the issue that might be the most limiting for this system.

Our bin system, nearly fool proofized

Step 1: Once a week on Thursdays I take out all these bins and lay them out on our counter. And then I start planning. In theory, my planning includes looking at flyers for what is on sale as of Friday (when we grocery shop) and what our week looks like to choose time sensitive recipes. Sometimes that happens. But if not, my most lazy planning involves looking through our recipe binder and pinterest and printing off recipes for at least dinner (lunches are often leftovers and breakfasts often smoothies).

 

Step 2: I use a half sheet to write out what we will eat each day to keep myself organized and place the required recipes in each bin. We try to keep all the recipes in protective cover sheets so they survive cooking accidents.

 

Step 3: Then I go through every recipe and pull all pantry items that we have and place them in their respective bins. Based on what is in the bins and in my fridge I am able to create my shopping list for any other ingredients.

 

Step 4: After we shop on Friday we fill the bins with their items and place them back under the counter.

Each morning ourhome reminds us to check the bin so that we can confirm we know what the dinner plan is and that we have taken out any meat that needs to be defrosted*.

This system is somewhat brain intensive for organizing and getting used to, and I tend to be the one that does it most often in our house. The real energy saver comes when it’s time to cook and all ingredients are in one bin, ready to go. We have also had far fewer nights where recipes are missing ingredients since we started using this system, meaning we eat home cooked meals more often now than before. This system solves a lot of the problems we were having with meal planning and cooking at home. 

*Right now we are trying to add in a step where I add post it notes to each bin with what needs to be pulled out of the freezer for the next day’s dinner. It works well when I make time to do it.

 

 

Lists we love

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.

How we make life routines

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.

Practical tips to help your loved ones

Guess what? June is Canada’s Brain Injury Awareness month which is what lead to this blog’s creation last year. According to Brain Injury Canada “160,000 Canadians sustain brain injuries each year”, clearly an incredible number to consider when we look at the cost to individuals and our health care. In the last week and a half, literally 10 days, I have learned of 3 friends being affected by brain injuries. They each have different stories, and different prognosis’ but at the end of the day they have all been launched into a very hard season of their lives.

Jason’s two year anniversary of his injury is fast approaching so I’ve found myself replaying so much of that summer in my head. The friends that showed up, the ones that disappeared, the loneliness that seemed so pervasive and the shocking little joys that we experienced on good days. And so, thinking of each of these people, I wanted to write out a short list of how to help after a brain injury. This is based solely on our experience and stories I’ve heard from others we’ve met in this journey.

  1. Show up, and bring food. It’s funny how ridiculous it seems to spend time cooking when you’ve been launched into a life with brain injury. There are articles to read, calls to make, and a loved one to watch over – or if you live alone and have a brain injury all your energy is going to basic survival. The really basic stuff, like breathing. Bring ingredients or even better, simple meals to be reheated. The friends that showed up with food were literally the best that week. If possible, and it seems comfortable, stay to eat with your friends. I can not over state how scary and stressful the first few days are and if I was left alone with my brain (remember, I’m the non injured one!) I would become nauseous and unable to eat. I needed to have people around me to keep me from fixating on how scared I was.
  2. Show up, and stay. As the support person caring for Jason I had prescriptions to fill, calls to make, and a heck of a lot of wedding errands to sort out. Jason was still at risk of having seizures or deteriorating and so I had to ask friends and family to come and babysit. It was awkward, and I felt the need to entertain or put out a spread (to be fair, the spread was more of a “here’s all the types of tea, have fun” kind of thing). If you can offer to come over and sit that would make things so much easier. Also, if you choose to sit, listen to the recommendations from the doctor and support people. Don’t force your patient to get up and get moving, or carry out a conversation.
  3. Show up, and help. Cut the grass, drive the patient to doctors appointments, walk the dog, take the kids to the park. Similar to suggestion #1, the daily activities seem unimportant compared to learning about Traumatic Brain Injury and self care so these are great ways to help.
  4. Show up, and watch your words. This is a funny one. While desperate for friendship and kindness throughout this journey, some times we have ended up more hurt than anything when trying for connection. Don’t tell your friend you are glad it’s them and not you, if they were in a car accident avoid saying they look like they were “hit by a truck” (or even worse – that you feel like you’ve been hit by a truck!). The sentence that always upset me was “roll with the punches”. It just always seemed so insensitive. This is a also a great time to learn about the ring theory for grief – explained best in this article from the L.A. Times. Do not complain about how hard this is on YOU to the person with the brain injury.  And if you are reading this and you have a brain injury – I think it is completely acceptable to print this off, label the circles and post it on your door. God knows I nearly did!
  5. Show up, and hold space. This one veers slightly off practical and into the emotional, it’s going to require you to act like an adult even if it’s super uncomfortable. According to Heather Plett holding space is: “It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.” Not easy, very helpful. And this one is possible even if you are across the country. Reach out, call, send a message and just be okay with the response. I encourage you to read the whole article on holding space here.

I hope these ideas help you reach out to those around you with traumatic brain injuries. I have linked to other articles in these posts if none of my recommendations resonate for you.

10 Ways YOU Can Help!

10 Things People with a Brain Injury would like to hear

9 Things NOT to Say to Someone with a TBI

 

Criminal Injuries Compensation Board: The hearing

We submitted our application to the CICB around May 2015 and were granted a hearing in early December 2015. Jason spoke to his case manager intermittently throughout that time and he always seemed nice, but we were still afraid of the hearing.

We told few people about it, I had already heard from some people in TBI support groups that we shouldn’t be flaunting how lucky we were to be able to apply to CICB (it’s a funny sort of luck when you hang out in TBI world). Our parents knew and one set of friends, who we planned on celebrating with that evening regardless of the outcome.

We had the choice of meeting in Barrie or Toronto but because the detective on Jason’s case was based in Toronto we opted for that location. It meant an early morning train ride to the city and some added anxiety being back in the city where Jason was assaulted but our detective had treated us so kindly over the last year and a half we were happy to make life easy for him. We arrived at the CICB building ridiculously early , with tea and coffee in hand, which allowed us to get ourselves even more worked up and nervous.

Part of the stress lay with the fact that in general Jason and the detective were the only ones allowed to speak in the hearing. I feared things missing from our story because of Jason’s memory or pride. As soon as we entered the room the committee, two lovely people, chose to swear me in as well so that I could help with the parts he forgot. Already a prayer answered because they chose to be compassionate.

Because Jason has no memory of that night the detective spoke first, sharing his information and affirming that Jason was not the cause of the incident.  I am certain this would have been a wasted day if the detective hadn’t shown up and stood up for us. I can never explain to him how grateful we are. Following his statements, Jason and I took turns answering questions about the effect this has had on our life and why certain treatment decisions were made. I think in all we were in the room for less than the longest 40 minutes of my life. Despite what I read in various news articles we were always spoken to respectfully, we were given time to come up with articulate answers and clarify ourselves if emotion got in the way of our words.  Both members were kind when they questioned us. It was the loveliest possible conversation for the situation we were in.

After all the discussions were done we were asked to leave the room while the committee came to a decision. A funny quirk of the system, that I don’t think either Jason or I realized until we were in it, was that they still had to determine if Jason WAS a victim. Because the men that did this have not been caught and no charges have been laid, the first step was deciding if a crime had been committed against him. So we were happy, in the weirdest sort of way, to learn that they agreed he had been a victim of a crime and then they walked us through all their justifications for awarding certain amounts of money and not awarding other things. We did end up receiving some money to help pay medical bills but we had already decided that we would write a blog post about the compassionate side of CICB before we knew that. We were blown away by the kindness we were shown.

We write this post not to flaunt our “luck” but to offer a different perspective on the CICB. So much of what is out there vilifies the people on the committee and we want our story to offer some hope to those going through the process, there are some really extraordinary individuals involved with this committee and it can be a peaceful experience.

Criminal Injuries Compensation Board: The application

Sometime last year, when we had already spent thousands on medical care for Jason and were facing the reality of losing thousands in his income, we decided to submit an application to the Criminal Injuries Compensation Board (CICB). We had discussed the idea shortly after he was injured but pride, and I’ll admit laziness, got in the way. It wasn’t until we were 7 or 8 months into life with a traumatic brain injury that we decided we needed to ask for financial help.

It was a scary experience, most of the information available online suggested that asking for help from the CICB left victims re-victimized and embarrassed. The fear of the “hearing” with the CICB board was trumped only by the crushing desperation I felt filling out the paperwork. Weighing in at 15 pages this document requires describing the “incident” and revealing all the ways your life has been affected. Once you’ve torn your heart out to mail to them, you also need to include ALL your medical records, invoices, treatment notes, bills, insurance receipts, mileage records, and pay stubs.

A less brain injury friendly process I don’t think I could imagine. A less man friendly process would be hard. I think it’s fair to say both Jason and I barely survived the day we filled out that application. We worked on it for about 4 hours straight (sorry, OTs!) and then cried and had a nap followed by a drink.

Looking back, it’s another experience where I am so grateful that Jason is the man he is. It could not have been easy to hear my versions of how the injury had affected us – beyond the crappy pre wedding stress and long lost honeymoon, I had to detail the angry nights he couldn’t remember, the sadness I felt when he had to sleep all weekend (literally, awake for meals only) to recover from a week at work. He had to acknowledge the loss of friendships and skills at work, the changes in our relationship. If anything could make a 30 year old man feel like a failure I think it would be this application. We had already accumulated all the medical notes we needed but as we set about creating the binder to send in we made the mistake of reading his files. Facts we hadn’t been aware of became details to add to our nightmares – the fact that he had been unconscious in the ambulance, that the police had called in the Forensics team because they assumed this would be a homicide investigation, that there were 5 areas of bleeding instead of the 2 we’d known about. We survived and sent in our application, in all it was a full 3 inch binder of supporting documentation.

AND THEN…

We had to continue to send in paperwork any time Jason had appointments or had his disability extended. We were supposed to run our trips to Michigan for behavioural optometry by his case manager before leaving but we didn’t know that and so they could not be covered.

It was a terrible process, and yet even with that criticism I don’t know of an easier one – perhaps only having an online portal to upload files so that we don’t need to kill so many trees for every application. And fortunately the application and the fear of the process was the hardest part. Next week I’ll detail our experience with the actual hearts and souls of CICB but basically we were blessed to meet some very compassionate and kind people.

If you know of anyone that needs to apply to CICB please give them our information. Having lived through the process once we are happy to share our experience and I happen to LOVE organizing when my heart isn’t being ripped to shreds. If they don’t want to reach out to us as random strangers, please offer to help them. Whether acting as a scribe or driving them from medical office to medical office to pick up their files, this process can wear people down and you can be an amazing gift to them as they struggle with identity and fear post victimization.

Matrix Repatterning for brain injuries

Treatment type: Matrix Repatterning

How to find: http://matrixrepatterning.com/Pa_practitioners

Price: Often $100-250.00 an hour

Credentials: Look for someone listed on the Matrix Repatterning website, they will include the designation CMRP after their name and other designations

What is it? From Matrix Repatterning

“a form of manual (hands-on) therapy, which is applied to the deeper, denser parts of the body, such as the skeletal framework (bone) and the dense fibrous tissues (fascia) associated with the internal core structures.  Areas of injury and strain may be precisely located based on an alteration in the mechanical and electrical properties within these tissues.  Treatment involves the application of gentle pressure in order to release tissue tension, which can facilitate the restoration of muscle tone, flexibility, joint mobility and optimal biomechanical function.”

Notes from our treatment:

Matrix Repatterning is another hands on modality we sought out during Jason’s recovery. It was mentioned in Norman Doidge‘s book The Brain’s Way of Healing and we are lucky enough to live 25 minutes away from the founder of the technique. Parts of the treatment reminded us of osteopathy in it’s holistic view of Jason’s body and injuries and the gentle manipulation used to treat injuries. The most stunning part of the appointment for us was that Dr. George Roth (the founder) spent almost an hour assessing Jason’s gait, balance, reflexes and range of motion. 7 months into Jason’s recovery this was the first objective assessment that had been done and the first time his tracking issues were brought to our attention (which we would later understand with behavioural optometry).

Treatments were weekly and again Jason was often able to fall asleep on the table. As with osteopathy he usually enjoyed a deep, long sleep post treatment. Based on Jason’s assessments the goal of Matrix Repatterning for him was to help with healing in the brain which should in turn minimize the differences in his reflexes and tracking issues. Unfortunately with goals as broad as that and a limited budget for care we were unable to continue treatments long enough to be sure if they were making a difference. We’ve talked to others, and certainly read stories, of people that experience tremendous results and swear by Matrix Repatterning so again I encourage you to do your own research.

Online support groups post traumatic brain injury

We’re lucky we’re living this life in the age of the internet. Most of our helpful resources and advice have come from articles and information that we’ve found online, that I doubt I would have discovered without internet. Support groups for traumatic brain injuries and post concussion syndrome are flourishing on Facebook.

These groups can be very useful but come with a unique set of challenges. Here are some things to keep in mind while searching for advice online:

  • As we all know some TBI survivors have issues with memory, self regulation, or depression (among other things). This means some posts will be made again and again, some may be sad, some may be inappropriate. Have patience with those sharing their thoughts and feelings and try to remember where they are coming from. This is even more important if you are a caregiver speaking to those with TBI, we will NEVER really understand how they feel or the struggles they face and it is essential we do not come across as preachy or instructive. Be grateful for the stories they share with you and try to learn from everyone.
  • This is still the internet. Do not accept diagnosis’ from anyone, nor change medications or treatment plans without speaking to your team of medical professionals. Use the information shared in these groups to come up with questions for your doctor, or lead you to research new treatments or literature.
  • There are people that join these groups to try to take advantage of those with disabilities. Please do not ever give you personal or financial information out to anyone from these groups and don’t arrange to meet anyone in private.
  • Monitor your own posts. If you’ve had good success with a treatment or vitamin, feel free to share but do not offer false promises or prescriptions. For example you can say “Taking X supplement has reduced my headaches from a 9/10 pain, to 2/10. Here is a link to look into it”. Please don’t say “Taking X supplement has fixed my brain injury. It’s the only thing you need, start taking it now” .

With these ideas in mind Facebook, and other blogs and social media can offer support during this hard journey. Some great groups I’ve learned from on Facebook include TBI Tribe, Spouse of TBI Support,  and Closed Head Injury Support Group.

Brain Games

One of the occupational therapists Jason worked with encouraged him to check out Lumosity as a tool for working his brain at home.

There are mixed reviews from scientists about if programs such as Lumosity work at improving intelligence or if it’s just a matter of getting quicker and more efficient at their games. I have no insight other than, the OT told Jason to do it and it’s an affordable enough treatment that he continues to do it. In fact we looked into a few options for training his brain (why do a little when you can do a lot right?).

Lumosity has an app for iphone and Android. The free version has 3 games a day which has been enough for Jason’s needs/attention span. There is a paid option that unlocks more games every day but it just doesn’t seem worth it when it’s important to limit screen time etc post injury.

Elevate is set up similarly, with 3 games a day for free and more if you purchase the premium edition. Again we haven’t felt the need because the free edition has been awesome.

Lumosity games seem to focus on spatial reasoning and flexible thinking whereas Elevate has more games focusing on spelling, grammar and reading. 3 games on each every day has provided a very well rounded brain workout in our home! It’s a popular business and I’m sure there are many other companies with apps out there but these ones work for us. I think the important piece with using these tools is self regulation – if the screen time gives you headaches or other symptoms this might not be a great option for you. It’s also important not to overdo it – if you spend an hour playing on your phone that is still an hour you aren’t doing other things that may be beneficial for your care. Exercise, hands on tasks and rest are all other practical ways of helping your brain recover that should not be forgotten just because you have your phone in hand!

 

 

Lucky

Happy Thanksgiving! Today seems like a good day to revisit out story. Ours is not a normal story. It’s not the typical wedding and happily ever after story, on that everyone will agree. It’s not the typical traumatic brain injury story (at least not as imagined by most) because he was never in a coma, or a rehab center. We’re an anomaly through and through, and more often than that we find ourselves talking about how lucky we are.

Each time I prepare to write a post I have to pray that it comes across with all the gratitude and love that we have for this year. We certainly never expected to count ourselves lucky for these experiences but we can’t deny being unbelievably lucky as far as brain injuries go.

We are so lucky. We just happen to have a fantastic behavioural optometrist in our family that reached out to us when we were feeling abandoned and has already helped us understand and hope for a better year. He and his wife are lovely and we’ve had the chance to enjoy getting to know them better, a relationship I doubt would have flourished without this injury simply due to the distance.

We are so lucky. Our new doctor (Jason actually found a new doctor – lucky!) is friends with an occupational therapist that specializes in cognitive issues AND created Brain FX360.

I am so lucky. Despite my husband having multiple bleeds in his brain he came home with me. Despite being off work and lost friendships and skills he is a kind man. I speak to other spouses and am reminded of how really truly lucky I am that I get glimpses of the man I love every day. He doesn’t yell at me, or abuse me, he participates in his rehab and never shies away from trying something new to get better.

And now we have to count ourselves lucky that the Criminal Injury Compensation Board has set a date for a hearing. This one is harder to feel lucky about. A chance to relieve the worst experience in our life and have a numerical value assigned to our suffering? Not even in my top 100 things I wanted to experience in my life.

A few months ago I read the Ontario Ombudsman’s report on CICB and convinced myself it would be years before we even dealt with this process and frankly that was an easier solution than preparing to plead our case and ask for charity. It’s been hours of paperwork (so kind to someone with a TBI!) and with the maximum that can be paid out ($30 000.00) we would at most break even for the first 8 months of life with TBI.

So we’re working on mindset in our house lately and remembering how lucky it would be to have any extra money to put towards the debt we’ve accumulated while trying to find treatments. I tell myself every day that the amount they assign us won’t play a part in validating our experiences or inducing guilt for where we’re at. It’s still a big lofty goal that I’m struggling with but we remain undeniably lucky.