Relationship Goals

If you ask Jason or I, we won’t lie to you, our relationship took a hit with the brain injury. Our roles changed, not just with me working out of the house and him being home on disability, but even our roles towards each other. I became very much like a parent, checking his daily schedule, reminding him of his tasks. The things we celebrated in that first year of marriage included his being accepted to Toronto Rehab and long term disability being approved, not necessarily things that newlyweds think they’ll be cheering for. The fact that Jason loved me through all of that, and never seemed to resent my bossy role is a testament to what a good and patient man he is. We were told early on we had a 90% chance of being separated by one year into the brain injury, and a 70% chance of divorcing from then on out.

Statistics like that are scary, and fortunately act as a great motivator for Jason and I. In the beginning we had to focus on recovery and surviving, and I don’t regret a minute of it. But now, as we seem to settle into more of a day to day routine we’ve decided to change things up. Over the last few months we’ve been trying to prioritize regaining our feelings of husband and wife, rather than roommates, or patient and caregiver. We literally find ourselves having to choose to be married every day rather than fall into other relationship dynamics. Romance for us is more about choosing to try in small ways, than some fancy dinner or big gesture.


And so we had to come up with a brain friendly way to love each other. Most of our strategies come down to clear communication. If the idea that your spouse should mind read fails in a regular relationship, it will definitely leave you disappointed when brain injury is a factor. There’s just no energy left for trying to sort out coded words or meanings. And so we make lists and read books and add our relationship into the schedule (actually, this is just what we are trying to do, we are by no means masters at this!).

Our love list: Hanging on our wall in our bedroom is a chart. This chart has 5 things we can each do to take care of ourselves (different for each of us, mine includes things like pray, go to the beach, for Jason it’s watch a movie or go for a walk with Willow). Below that is 5 things we can each do to love the other person. Again, different, mine involve things like kiss me hello, ask about my day; his include specific words of appreciation and kind reminders of our schedule. It’s not romantic in the traditional sense of the word I suppose, but I feel overwhelmed with gratitude whenever I know that Jason has taken the time to remind himself of the list and make an effort for me.

We also started the Bethke’s 31 day challenge and when that was too overwhelming decided we would stretch it out over a series of weeks with 3 love challenges a week. And I have to tell you, when Jason chooses to use some of his energy to show me love it lights me up. Again, these are actions we schedule into our week on Sunday so that we can plan and conserve energy as needed. 
Some other reading about relationships and TBI: http://www.darlingmagazine.org/do-we-need-new-love-songs/

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.

Ask the awkward questions

There’s this quote by Harriet Lerner and I aim to make it my life mantra.

 

“ If a person we love has found the courage to live through something, then we can find the courage to listen, to give our full attention, and to not back away from asking “Is there more you haven’t told me?”

 

I can’t explain the pain we’ve felt at various points in this journey when others want us to stop talking about day to day life with TBI.  It leaves us hurt and alone, it’s so hard to build a relationship if the biggest part of our life needs to stay off the table. Even since writing again and being authentic about our journey, it’s been interesting to watch the family gossip fly, all without anyone picking up the phone to see how we are.

So here is what I want to tell you, recognizing that while it is our truth it may not be everyone’s truth. All we want is for you to pick up the phone and check in (granted, I’d prefer a text, I pretty much refuse to answer my phone). Ask questions about what we are going through, ask about how we are really doing. You don’t have to have the perfect question or insight to offer, we just want connection and for you to sit with us as we stumble through our life. It also doesn’t have to be the only topic of conversation. TBI is a huge part of our life, but we also watch TV, read books, have quirky neighbours, and desperately want to hear about your life.

I know our story makes people vulnerable and anxious- if this could happen to Jason it could happen to anyone. Traumatic Brain Injuries are terrifying in their pervasiveness, and it can be so uncomfortable to acknowledge the loss of elements of your friend or family member. Please, don’t let that uncomfortableness stop you from reaching out and having a relationship. I know it’s  possible because we have made plenty of friends that do it routinely. So for us, now, as we move away from the shame that dominated our first year and a half of TBI, please ask the questions. We might be awkward or entirely terrible at answering them but we will try our best and at the very least we will have shared the experience of being completely baffled by this life.

How to Survive Christmas when a Loved One has a TBI (A very general guide based on our n=1 experience and a few conversations with others)

Holidays are hard. End point. Even if you don’t have a TBI holidays involve so much extra stuff and balancing of schedules, they aren’t easy. But since Jason’s TBI they have certainly become harder.

In the beginning, when we were too ashamed to explain to people what was going on we tried to tough out Christmas like we did pre-TBI. That year was full of fake smiles while out with family and friends, and tears and panic attacks while at home.

Our second Christmas we were moving just after the holidays, so I’m pretty sure we were just zombies through most of the festivities. I actually can’t remember.

This year, with more openness to friends and family, and more experience on our side we did better. So here are my tips based on very little experience getting it wrong and even less experience getting it right.

For families:

  1. No flashing lights. Please. They are frequently listed as problems for those with traumatic brain injuries and seizure disorders. As we saw at this year’s wedding, flashing lights do Jason in in about 2.5 seconds and he doesn’t even have a seizure disorder. They’re just too much. So please, if you want your loved one around for longer than a few breaths – turn them off.
  2. Low background noise. Concentrating on one conversation while family members all around him are having other conversations is super hard for Jason. In two hours of trying to concentrate in that type of environment he might use all the energy he would in a normal day. His ability to focus on conversation becomes even more reduced when there’s a catchy song or commercial in the background. So as much as you love your Christmas jingles – keep them quiet.
  3. Organize in advance. Gone are the days when a night out could be recovered from with a few extra hours of sleep. If you want your loved one at a dinner with tons of people, lots of noise, lots of brain work, and it’s going to go late, please make that plan in advance. It gives them time to store up energy, to make accommodations in their next few days to be gentle on themselves. Likewise, if you need them to bring a gift/ dish/ drink – plan it ahead of time. Going into a packed grocery store to search for ingredients and wait in line and battle conversations with the cashier and Christmas music and parking and, and, and just uses up energy that could be budgeted better if you give them the opportunity to plan ahead.

For those with TBI and their immediate family:

  1. Communicate. Seriously. This one is so hard, I know, I’ve been there. But families don’t know how to adapt if they don’t know what symptoms you are dealing with. I know this doesn’t guarantee it’s going to be pleasant or that you will be heard. But not speaking up guarantees you won’t be heard and can leave room for anger in the relationships. If you don’t want to say what you need, just start passive aggressively sharing this blog and let me speak for you! (Kidding. Please, give your family a chance to support you).
  2. Be kind to yourself. Take as much rest time as you can. When we were working with an Occupational Therapist in the first year she said having a schedule and routine beat out everything. So wake Jason up even if he’s tired because that’s the plan we agreed to. For us we’ve had to accommodate that. We try to stick to routine 80% of the time. But things like Christmas require so much more energy, and we want to see family, so we try to carve out extra hours for sleep. Where Jason usually sleep 9.5 -10 hours a night right now to manage symptoms, Between the 23-26 it was closer to 12-14 hours a day, broken up over naps and night time.

Our little twist. I try to speak mostly about TBI experiences that can resonate for others walking through this life. This paragraph is probably not an experience most people would enjoy but I loved. This year, at both Christmas Eve and Christmas day get togethers with our families, my parents and my parents in law sent Jason to sleep. My mom even sent me for a nap on Christmas day. I’m sure this would bother many people, I can even think of a time when it would have bothered me. But this small gesture spoke such kindness and understanding to us that my heart felt like it was being hugged. So often lately I find myself weary under the weight of being in charge of our life all the time, it was a beautiful gift to have someone else take control. But like I said, I don’t know that that is a universal feeling and so I would suggest caution to families that want to start telling their TBI loved ones what to do. Of course part of what made these gestures so beautiful was that it truly was what was needed by us.

 

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!

 

 

How much can you trust health care?

This is a personal post for me. As a registered massage therapist in Ontario I count myself among regulated health professionals and I like to think we are an ethical and intelligent group.

As a wife navigating traumatic brain injury recovery I have been frustrated and disappointed by health care professionals again and again.

So here’s my thoughts – there are a lot of great health care professionals out there. There is a lot of new research and understanding about traumatic brain injuries and post concussion syndrome out there. Not every health care professional has an understanding of traumatic brain injuries and even those that claim to understand it may be working with outdated data (for example the old concept of “the brain only recovers for 1 year post injury” vs. the emerging data about neuroplasticity).

When you work with someone you need to trust them. Be honest about symptoms, be honest about what is within your ability to do and afford for treatments. And then you need to trust yourself to make the decision to switch treatments if something isn’t sitting right.

When a doctor called Jason a wimp for having symptoms 7 months post treatment? We left. When a naturopathic doctor suggested I should just look on the bright side and stop worrying about the severity of his symptoms? Fired. A personal trainer that wasn’t concerned her workouts were sending Jason back to bed for 2-3 hours? Gone.

But we found replacements for each of those important parts of Jason’s recovery that are more well versed in TBI. It might be more expensive paying first appointment fees again and again, but the financial cost is nothing compared to the successes he’s had with his new team and their ability to assess changes in his symptoms well. I encourage you to do the legwork to find a team that is great as often as possible and don’t let words from uninformed practitioners, even when they have all the credentials in the world, discourage you during your recovery.

Essential oils and traumatic brain injury

As I’ve mentioned because of our crappy medical help early on in Jason’s recovery we sought treatments outside of the conventional medical fields. One of those options for daily help was aromatherapy, a concept I hadn’t really bought into before Jason’s injury. I ended up signing up with Young Living essential oils because I knew people that swore by them and I liked that I could order online (worst sales pitch for Young Living ever I am sure!) but really they have been great for us.

Articles like these helped convince us to give some a try:

http://livingtraditionally.com/essential-oils-and-brain-injuries-what-you-are-not-being-told/

http://aromatherapydoctor.com/2014/02/dr-anne-meyers-protocol-for-grant-virgin-traumatic-brain-injury-2012/

http://vividandbrave.com/how-essential-oils-helped-me-cope-with-my-traumatic-brain-injury/

Now I am not an aromatherapist, so I would hesitate to call what we did aromatherapy. We just used essential oils, based on articles and other people’s experiences to help with this time in our life. They were affordable and at least gave me the feeling that I was helping somehow. We chose a few ways to use essential oils in our life like:

-A blend of orange, lavender and cedarwood in our bedroom at night

-A blend of rosemary, vetiver and frankincense in Jason’s office and handcream when he’s working

-Spot treatments with frankincense and peace and calming during cognitive overload times to help with anxiety and stress. We also used Bach Flowers Rescue Remedy during high stress times with much success. Jason doesn’t really buy into natural options so it’s always pretty entertaining to watch him calm down after using them and then get a bit annoyed by their validity.

Sleep hygiene ideas

In my last post I discussed the sleep routine that works for us. Here are some ideas that work for others suffering from brain injuries:

  • avoid caffeinated drinks and treats – especially in the afternoon and evening
  • set the temperature in your room between 60-68 Fahrenheit (according to most research this is the ideal range for sleeping)
  •  ask your doctor about sleep aids (either prescription or natural remedies)
  • use a light designed to help with seasonal affective disorder for 15-30 minutes in the morning, the Litebook is often recommended by those with a TBI
  • wear glasses that limit the light your eyes take in before bed, similar to these cocoon low vision sunglasses
  • limit your bed use to sleep and sex
  • if you can’t sleep after a half hour get up and do something boring such as the dishes, do not get out your phone or try something fun. Literally try to bore yourself to sleep! Getting out of bed keeps you from associating it with stress.
  • get rid of all lights in your bedroom – some even have trouble sleeping if there is a little indicator light on. You can also try a sleep mask
  • a lot of people report improved sleep when they use ear plugs so that they can’t hear their partner or children making noise
  • some TBI survivors report improved sleep when they use a weighted blanket such as this. I’ve heard of people using blankets as heavy as 85 lbs but I think it is fairly individual what weight each person can tolerate or find enjoyable.
  • if possible open the window, most people find they sleep better with fresh air, but it must be a balance with all the other noise/light/temperature considerations
  • meditations before bed – I’ve heard Headspace is a popular app that you can use on your phone until you are able to do it on your own
  • keep a notepad beside your bed to record any pressing thoughts -that way you don’t need to focus on them as you are trying to sleep

For more advice check out the Sleep Foundation’s focus on bedrooms.

Our sleep routine

Today I’m going to write a bit about the sleep routine that works for us. It’s been guided by sleep research and our private OT and what Oldham07241587works for us. Take the bits that work for you. Tomorrow I’ll post additional sleep hygiene tips that we haven’t incorporated yet but that others have reported good results with.

The first thing to learn is that there is a lot of research proving that sticking with a sleep routine helps significantly. Going to bed and waking up at the same time everyday helps with your circadian rhythms and internal sleep clock.

8:30 p.m. Tidy the kitchen, make a magnesium drink (we use this kind) and sip it while we do a short yoga routine (6 poses suggested for balance and relaxation by Jason’s OT).

9:00 p.m. Take the dog out and put him to bed. Turn off devices and plug them in in the kitchen or tv room (not bedroom). Head to the bedroom and turn on the fan to keep the room a nice temperature and provide background noise. Put a few drops of our sleepy aromatherapy blend in the diffuser (lavender, cedarwood and orange essential oils found here) and turn it on. Set the alarm for 8:00 a.m. Free time to read real books (screen time can alter melatonin levels and mess up your sleep cycle).

10:00 p.m. Sleep time! Often we won’t even make it until 10 p.m. before we need to turn off the lights and go to sleep. I use a sleep mask to keep the room dark but still have an awful habit of needing cheesy sitcoms to fall asleep. Jason often listens to music to fall asleep and has found techno to help the most because of it’s repetitive nature. Our OT suggested that classical is too stimulating to try to sleep to.

We use one of these alarms that start brightening the room a half hour before it goes off to help with energy levels early in the day. It does seem to make a difference for Jason and he is often waking up before the alarm starts wailing.