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.

 

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.

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.

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.

10 Ways YOU Can Help!

Uncomfortable with “feelings” talk? We’ve all been there. It doesn’t mean you need to feel (or act) like a jerk. Here’s 10 practical ways you can help a friend or family member with TBI. Seriously, anyone that did any of these in our first year was considered a super hero in my mind. Amy Zellmer has done a great job of explaining why these actions would be appreciated and when they are helpful to implement so read mindfully and then enjoy being someone’s superhero!

9 Things NOT to Say to Someone with a TBI

This is not my list but actually an article that started on brainline.org and has been shared with me by tons of friends and family wondering how accurate it is.

Have a peek at the 9 Things NOT to Say to Someone with a TBI.

The author of this article has done an exceptional job at outlining the worst statements we heard in Jason’s first year of life with a TBI. I highly encourage everyone to read this article and file it away in your brain for use around your loved ones.

 

Kids of TBI

When Jason switched to his new family physician one of the first things she said was that there was no way we could have children while he was in such an early recovery phase. As frustrating as it is to be told what we are allowed to do as adults I recognize the wisdom of this advice. I can only imagine how exhausted parents must feel when dealing with a spouse with TBI and children. I struggle to balance our life and we have no children and I control my own work schedule! There are some parents out there doing some amazing things. Recently a few posts about how to cope as a child in this situation have come across my desk and I wanted to share for those that find themselves in this position.

This beautiful letter was posted on Brainline by Janna Layde to kids like her with a parent with TBI.

Seven Truths – the ripple effect of TBI lists some of the realities that parents need to be aware of.

 

Teaching those with traumatic brain injuries

Sticking with this week’s theme of things I know nothing about….my heart goes out to those teachers that are going to have their life touched by traumatic brain injury in their kids this year. I think it’s really important that teachers are given information from parents about how their child shows fatigue and symptoms and what accommodations might work for them or have worked in the past. I know nothing about being a teacher but I was pleasantly surprised to find quite a few resources. Here are some of the best I looked at,

A Fact Sheet for School Professionals

Classroom Interventions

The Transition from Hospital to Community

Reintegration of Students with Traumatic Brain Injury