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

 

A note for caregivers

Often we won’t write about a subject or experience on here until we’ve made our own sort of peace with it, not out of a desire to be disingenuous but simply to protect ourselves in case people decide to go all internet troll and fight with us. It’s the way we need to do it for our our own hearts and minds, but perhaps does give the impression that we have it all figured out (or think we do!).

We don’t. Just to be clear. Nor do we think that we know all the answers. Sometimes we have periods of days or weeks where brain injury doesn’t seem to rule EVERY thought but it’s still there, surprising us all the time. Recently we had one of those golden periods where we were feeling hopeful and almost like we might be getting close to finding a routine that worked for us. And then it all fell apart.

We’ve got a big disability meeting coming up. We’re nearing my 27th birthday, the two year anniversary of Jason’s brain injury just after that, then our two year wedding anniversary. In our lives before brain injury we had planned on trying for kids this year, I would have been wrapping up my third year of osteo school, and so mother’s and father’s days hurt just a touch this year. Jason’s been trying to cut back on sleep, with the help and recommendations of a rehab psychologist, which has totally thrown off his morning routine. I took on more hours at work to help out with some renovations we’d like to do.

And so suddenly it was too much, and I spent last Friday afternoon crying at my friend’s kitchen table, drinking kombucha from a wine glass. It wasn’t any big sob fest or anything, just sad, shame filled tears. I couldn’t believe I was so overwhelmed two years in. When was I going to start acting like an adult? When was I going to get it together? Sure Jason was showing more symptoms again (trouble focusing, trouble prioritizing, trouble initiating) but wasn’t that all really my fault for counting on him? He has a brain injury, how the hell could I be angry at him? What type of awful wife would be angry at their husband for brain injury symptoms? When was I going to get my act together and be nice again?

I’ve hit those kinds of shame cycles a few times in the last two years but can’t remember any with clear details.  I’ve been reading Beth Moore’s Goodbye Insecurity and binging on Brene Brown’s books so maybe I was just more aware of the shame this time and able to articulate enough to reach out to my friend. Anyway, she had the most beautiful response that has been ringing in my ears and my mind all weekend:

“The thing about caregiving, is you are human”

Although I’ve been painfully, horribly aware that I am far from superhuman I hadn’t really processed that I am in fact human and allowed, and expected, to have feelings. It was SUCH a relief. I know for those that haven’t been in this position that will seem so silly, but for those of you that are beating yourself up during this care-taking challenge and don’t have a friend to help you guzzle kombucha and give you a reality check, let me tell you. You are human, you are doing well and you are allowed to cry.

 

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.