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.