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.

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.

A little inspiration from Sarah Ramsden

I stumbled across Sarah Ramsden’s story on Facebook a couple of years ago when I was learning about Kombucha and fermented vegetables. She runs a very popular video series on Fermentation (Fearless Fermentation) that I’m always meaning to take to refine our system at home. I love learning and when I read that Sarah had to have brain surgery and then changed her life over the last few years I felt like I’d found someone that gets it. I have about a dozen of her blogs bookmarked to refer to on hard days because I love her insight on how life can change completely after a health concern. Seriously, if you are feeling like your world just doesn’t fit anymore, grab a tea and curl up with her blog. She talks about her own journey from loving the corporate and city life to moving across the country to find joy with less. For today I want to share specifically her blog post Unexpected Lessons From Taking Sick Leave. Sarah succeeds in giving words to the feelings Jason and I have had during his time off. Neither of us wants to say we are grateful for the brain injury or managing life while he is on disability, but we’ve learned some amazing things and been granted incredible opportunities along the way. I’ll sound like I’m stealing her words if I try to list our lessons, but I hope her blog can give you hope if you are in the midst of the painful days.

Review: Coping with Concussion and Mild Traumatic Brain Injury by Stohler and Hill

This was hands down the best book I have read about treatments for brain injuries. When I picked it up at my library I didn’t expect much, it was not a book I’d heard of before, I only picked it because our library has no other books about brain injuries. But then I started reading and I was blown away by it’s layout, clear language and thoroughness.

It can be found by it’s longer title, Coping with Concussion and Mild Traumatic Brain Injury: A Guide to Living with the Challenges Associated with Post Concussion Syndrome and Brain Trauma, and is written by Diane Roberts Stohler and Barbara Albers Hill. I think the language and thoroughness of this book may be overwhelming to those that have a brain injury but it is the perfect resource for any support person. 

The book begins by discussing the anatomy and physiology of the brain and a variety of brain injury terms and injuries. This section is probably the most clear and concise version I have ever read and should influence how health care practitioners start speaking to their patients. A real understanding of what’s going on under the skin can do wonders for friends and family members’ compassion.

The book continues by breaking down symptoms into physical, mental, and emotional. The authors list the widest scope of symptoms that I’ve ever found in one resource and break each down into how it looks/feels, typical interventions, alternative interventions and what can be done at home as interventions. I found the format easy to follow and makes it easy to come up for a plan for moving forward – whether it is questions to ask a doctor or behaviours and routines to start practicing at home. This book succeeds in making treatments seem accessible and giving even this jaded writer hope for those new to the brain injury world.

Wrapping up the authors continue to explore all aspects of brain injury by discussing what recovery can look like, how to live together post brain injury and what advances in medicine are on the rise for brain injuries.

This is an incredibly helpful book that navigates brain injuries from a clinical rehab point of view. Unlike my other favourite books it does not include sympathy or funny stories to help the support system understand how hard rehab is, but it is the perfect guidebook for coming up with a plan of action.

A beautiful post from 16 Petals of Blue Light

This post comes a bit late, but I stumbled across this post from 16 Petals of Blue Light Saturday night and it’s been on my mind ever since.

I have no issue with Mother’s Day and so I didn’t want to share this post yesterday and detract from my love for our mothers, mother figures and all my friends celebrating their first mother’s day with babies. I am glad we have a day to be thankful for our mothers and I hope everyone was rightfully spoiled yesterday.

This post from 16 Petals of Blue Light should not take away from Mother’s Day, but shares some beautiful insight on how we as caregiver’s feel. I am grateful to Jason’s mom, and all the motherly figures he was blessed with, for creating the man I fell in love with and I never want that message to be lost. But over the last 22 months I have often felt like a mother to Jason more than a friend or wife. It’s a hard fact of caregiving, I’m far from the only one that feels this way (as demonstrated with this beautiful blog post). We’re lucky to be working on a different dynamic now but I remain grateful for wonderful writers that let me know I’m not alone in this journey.

Review: Learning by Accident by Rosemary Rawlins

A few weeks ago I shared a touching blog post by Rosemary Rawlins and realized I never published my review of her book. Learning by Accident: A Caregiver’s True Story of Fear, Family and Hope is her touching real life story of life after her husband Hugh was injured while cycling.

Rosemary writes beautifully and chooses her words carefully, so that with every description of an experience my heart was aching right along with her. I started this book multiple times during the first year of Jason’s injury and had to put it down every time I got to the chapters about being in the hospital immediately following Hugh’s accident. The fear and sadness was written so enchantingly I couldn’t help but relive Jason’s incident. If you have ever wanted to step into someone else’s shoes and understand the fear of losing your love, give this book a read. Likewise, if you want to understand the frustration that can come when dealing with the legal system and a brain injury, immerse yourself in her stories on dealing with the driver that hit Hugh. Rosemary’s candor will give you insight into situations you hopefully never have to live through.

Rosemary and Hugh’s story includes many, many acts of kindness and love from friends and family. It’s inspiring and a beautiful story of community. Unfortunately, this was an area I couldn’t see our story and I probably wept as much for the lovely acts of their friends as I did for our loneliness during Jason’s recovery. I think (based on many conversations, but no real research to speak of) that many families going through brain injury recovery become isolated and so I found it really lovely to hear about friends stepping up and showing love in a really concrete way. The friends and family described in Rosemary’s book are to be admired. For those of you going through as a caregiver I’m sure it’s not at all passive aggressive to highlight some of the stories and hand out copies to your own friends and family!

Finally, as much as I’ve discussed Rosemary’s writing technique, she includes a lot of information on brain injury recovery in general. She describes therapies and symptoms succinctly in a very accessible way.

A new version of alone

I thought I wrote a review of Rosemary Rawlins’ book Learning By Accident but apparently that was all in my head. I’ll have a blog post coming soon about it – but for now, the short background to today’s link and blog post. Rosemary wrote her book after supporting her husband through his brain injury. It’s a touching story and really captures the overwhelming nature of trying to be a caregiver and maintain “real life”. Now she writes blog posts for brainline.org and I was always find them full of truth. Honestly when I read her posts I feel like I’m sitting with a best friend having a cup of tea.

The post I stumbled across today was titled What TBI Teaches Us About Endings and was Rosemary’s typical beautiful writing. Seriously, click the link and go absorb this woman’s wisdom. She and her husband were married for over two decades before he was hurt and I can only imagine how much there was to mourn when memories disappeared.

One of the hardest aspects of TBI to explain to others was how much I miss pre TBI Jason. Outsiders see how lucky I should feel to have Jason at all, or how similar he seems  when you meet him for a minute or two. More than once I’ve been told to look on the bright side or roll with the punches (which always seems particularly cruel considering we’re here due to an assault). And it’s a funny dynamic because I am SO happy to have Jason alive and I was SO sad that he was not the man I fell in love with. Memories have disappeared, inside jokes are dead. For a long time activities we loved to do (rock climbing,travelling) were limited due to the possible risk to his health. And it’s a strange kind of aloneness when you are having dinner across from a man that looks like the man you love but you don’t know how to make him laugh or carry a conversation anymore.

When I read Rosemary’s blog I’m glad we dealt with TBI so early in our relationship so that there was less to mourn and no children that had to learn to love their new dad. But there’s still a part of me that feels like it was a tragic start to our marriage, grieving pre TBI Jason, my best friend. I have no words to explain how lonely it felt going through two of our biggest days (his injury, our wedding) without him to talk to. Any attempt I’ve made (trust me, I’ve written and deleted about 15 versions while trying to write this post) cheapens our wedding and our marriage. Everyone has dealt with that grief of losing someone at some point in their lives, I just wasn’t aware that’s what I was dealing with. I felt selfish and bratty being sad when he was alive beside me.  I missed him so much it hurt and yet I was really frustrated by him being at home.  I loved him and was committed to our marriage but I didn’t really like him some days.

It’s  hard piece of TBI life for the survivor or caregiver and it took me months to find help, which for me was simply a matter of labeling the feelings. Once I knew a) what was going on and b) that it was okay, I started liking Jason a lot more. The two terms I found for these feelings were ambiguous loss and disenfranchised grief. Up until the point where I discovered those terms I had spent hours researching TBI, symptoms, solutions etc, completely focused on Jason’s piece in the puzzle. Likewise, emotionally, I only saw how he  had changed. One day, a friend brought up these concepts of loss and grief and suddenly I felt lighter. I had a piece in this puzzle too, people (maybe not my people, but PEOPLE!) had looked into how caregivers felt and thought and functioned. Our life didn’t have to be all about two alone people in a house anymore.  And also, because I knew feelings didn’t last forever, I was blessed to feel optimistic about our relationship again. Eventually I wouldn’t be so annoyed or alone. I was right too, at some point we liked each other again, and then somehow fun started coming back into our life. There was no date specifically to recall, it just developed as the grief and loss edged away. They still take over my heart some days but it’s rare now.

So for the caregiver’s be gentle with yourselves. It’s not an easy life you’ve been given and it’s okay to have unhappy days. To the friends of caregivers, I know these unhappy days and the sentiments of grief and loss are hard and awkward. Try to let it be okay for your friend. Look into ambiguous loss and disenfranchised grief and if you think they are effecting you please talk to someone. Try to remember the airplane oxygen theory – you need to care for yourself before you can care for anyone else and if you are beating yourself up over your feelings every day you are going to feel run down quickly.

Our Home – the app that helps

As I start to get back into writing I have a whole folder on my computer of articles I want to share and discuss and studies that are being published. Today though I want to start with discussing an app we found just before Christmas that has been a huge help.

We’ve discussed previously how post TBI initiation and memory can prove challenging and for a long time I felt like Jason’s mother constantly advising him on what he needed to do each day and when. It does not make for a good relationship when one is always in control and neither of us loved the arrangement. We have various lists and routines around the house that took some of the burden off of me, but weird one off tasks or phone calls were still falling through the cracks regularly. We needed something we could both access, when we were at home AND away from home and that we would both use. It’s a pretty tall order.

OurHome is an app that is free to download on itunes and Google Play and allows members of a household to share to do lists and grocery lists. I know there are tons of apps out there that sound similar but this one has the unique feature of awarding points (determined by you) for tasks and then those points can be redeemed for points (again, determined by you).

OurHome met our needs.

  1. We both needed to be able to access it, at home and away from home. This one is pretty obvious – download the app to each of your phones. Take your phone with you when you leave the house. OurHome allows you to set up a family account and you can each add tasks to each others lists, put in due dates and assign points. The app seems to automatically assign points in relation to the time it should take to complete the task but this can be changed to make important tasks more valuable. Being able to access  the app anytime and anywhere has meant fewer tasks get forgotten. We’ve all had that moment where you are at the gym and suddenly remember you need to take meat out for dinner right? Now I can actually write that down quickly and it actually happens when I get home.
  2. We needed to use the app. Here’s  the issue with pretty much any coping strategy that is suggested to those with TBI’s. They only work as well as you make them. Lists, phone alarms, pneumonic devices – they may all help but you need to do the work to use them. When Jason is already tired and struggling with cognitive skills he often won’t remember that he needs to check the list or he’ll swipe away his phone alarm without changing tasks. The possibility for these limitations is still there with OurHome but the incentive of having points and rewards really minimizes how often things are forgotten. As a family you set up your own rewards, for us things like getting a new tea or a no alarm day are extremely valuable and so take more points to achieve.
  3. We wanted to feel like a couple of adults again. It’s very hard to feel like one partner is the parent and one is a child in day to day life. When I presented this app to some other TBI families they brought up the fact that it would seem condescending to bribe your husband to do chores. I have to say, that is not the dynamic in our relationship and it probably has everything to do with how you approach the app as a family. Jason and I both use the app, we both have the ability to add and remove tasks and determine our own rewards. Rather than feeling like a manipulative tool it feels like a good way to keep our life on track and get some well deserved me-time/tea/treats/fun activities.