Caregiver Week

Hey friends,

It’s caregiver week. I had so many blog posts planned for this week with links to great resources and tips. And then our life kind of went crazy – life in our hometown doesn’t fit anymore for many reasons. We need to move, we need to prepare our house to sell, I need to wrap up my business….it’s just work. And it’s just two months of work, but in that two months it is A LOT of work. And so when I sat down to write my blog posts, I had nothing left to give. No words of wisdom, no making links between resources. I’ve used up all my brain power and I’m going to spend the rest of caregiver week being kind to myself. In a couple of weeks I’m sure I’ll be right back here, writing up a storm because there is so much that needs to be said about life with a TBI. But for now I’m taking the general theme of caregiver week and caring for myself. I encourage each of you to do the same and to be gentle with your self talk while taking a break.

Treatments we’ve tried

A few weeks ago we spent some time outlining the traditional treatment options (OT, SLP, etc) that we pursued in Jason’s recovery.

Over the next few weeks we’re going to discuss some of the other treatments we’ve sought out such as osteopathy, Matrix repatterning and Naturopathic medicine. Of course we’ve already shared our story about how behavioural optometry has helped Jason and will continue to update how we see changes from that intervention.

It’s important to us to outline that not every treatment is right for every person and none of our stories should be taken as prescriptions or orders to seek out a new treatment. We’re lucky that I work in the health field and have called in favour after favour to get Jason seen by people I trust and refer to often. Within my practice I treat many individuals with traumatic brain injuries and we share stories and names of practitioners on a regular basis but that is no guarantee that results will be consistent. Every brain injury is different, every individual is coming into treatments at different levels of functioning and health and results will always vary. If a certain treatment story resonates with you I encourage you to read the links I include in every post and find a good fit for you. Geography and financial limitations will also come into play during your journey with TBI and you always need to make your own decisions that suit your lifestyle.

On the note of financials, there are a lot of studies that show that those with TBI often have to file for bankruptcy or are faced with financial troubles. In just over a year we’ve thrown about $40 000.00 at brain injury treatments (including lost income because that is part of recovery in my mind). No one, including us, can tell you what your financial investment should be in your brain or how you decide that. We’re gut reaction people, if research resonates with our story and the practitioner seems like a good fit that listens to both of us, we tend to try our hardest to afford the treatment. If a treatment doesn’t seem to change Jason’s quality of life within the first few sessions we will always discuss with the practitioner but then decide for ourselves when to stop treatments. We try our best to not regret our decisions but there’s never any clear answers.

I am sure you are doing your best with recovery and we only want to share our experiences to offer options. This remains a very individual journey so please make your own decisions with care and be gentle to yourself.

Lucky

Happy Thanksgiving! Today seems like a good day to revisit out story. Ours is not a normal story. It’s not the typical wedding and happily ever after story, on that everyone will agree. It’s not the typical traumatic brain injury story (at least not as imagined by most) because he was never in a coma, or a rehab center. We’re an anomaly through and through, and more often than that we find ourselves talking about how lucky we are.

Each time I prepare to write a post I have to pray that it comes across with all the gratitude and love that we have for this year. We certainly never expected to count ourselves lucky for these experiences but we can’t deny being unbelievably lucky as far as brain injuries go.

We are so lucky. We just happen to have a fantastic behavioural optometrist in our family that reached out to us when we were feeling abandoned and has already helped us understand and hope for a better year. He and his wife are lovely and we’ve had the chance to enjoy getting to know them better, a relationship I doubt would have flourished without this injury simply due to the distance.

We are so lucky. Our new doctor (Jason actually found a new doctor – lucky!) is friends with an occupational therapist that specializes in cognitive issues AND created Brain FX360.

I am so lucky. Despite my husband having multiple bleeds in his brain he came home with me. Despite being off work and lost friendships and skills he is a kind man. I speak to other spouses and am reminded of how really truly lucky I am that I get glimpses of the man I love every day. He doesn’t yell at me, or abuse me, he participates in his rehab and never shies away from trying something new to get better.

And now we have to count ourselves lucky that the Criminal Injury Compensation Board has set a date for a hearing. This one is harder to feel lucky about. A chance to relieve the worst experience in our life and have a numerical value assigned to our suffering? Not even in my top 100 things I wanted to experience in my life.

A few months ago I read the Ontario Ombudsman’s report on CICB and convinced myself it would be years before we even dealt with this process and frankly that was an easier solution than preparing to plead our case and ask for charity. It’s been hours of paperwork (so kind to someone with a TBI!) and with the maximum that can be paid out ($30 000.00) we would at most break even for the first 8 months of life with TBI.

So we’re working on mindset in our house lately and remembering how lucky it would be to have any extra money to put towards the debt we’ve accumulated while trying to find treatments. I tell myself every day that the amount they assign us won’t play a part in validating our experiences or inducing guilt for where we’re at. It’s still a big lofty goal that I’m struggling with but we remain undeniably lucky.

Happy birthday Husband!

Today marks my husband’s 31st birthday. This year we’ve been blessed to have 3 meals with small gatherings of friends and family to celebrate another year -and Sunday he’ll be sleeping all of them off.

I want to take a moment to brag about my husband. This past weekend I was asked how married life was treating us. I couldn’t help but start by saying how very lucky I am. Oldham07241527

He is brave beyond belief, he has faced every day of this journey head on. He lets me share his stories and our strategies for dealing with life post TBI without ever asking me to protect his feelings. He never hesitates to tell friends and family what he’s battling and has far more compassion for them than I do when they don’t get it.

He made the transition from travelling and working to staying home and concentrating on rehab look easy. There was never one day of anger or tears, just gratitude for the rehab options we’ve been granted. He gets out of bed every day, puts on clothes and does what he has to for his health.  He cleans and cooks so that I can work and never, ever brings up this change of roles against me.

He is amazingly kind. He’ll still take time to ask how others are doing or hold my hand when I’m having a bad day. He never makes me feel bad when my turn cooking dinner inevitably ends with ordering takeout.

Oldham07241540He’s a fantastically strong man and I am so happy to be celebrating him this year.  It’s easy on the bad days to get caught up in symptoms and forgotten tasks, a mistake I know I make more often than I’d like to admit. As a supporter I will never really understand how much energy it takes every day to keep being himself which just makes me more in awe of what he has accomplished this year.

Happy birthday Husband! I love you and respect you.

I need you

One of the hardest realities of life post TBI is the loneliness of it all. We miss out on big dinners and parties because it’s just too much stimulus. We had about 11 months of hermitting, just trying to get through life and when we were ready to venture out again, for the most part, people had already moved on in their life.

And so as adults, with some very real limitations on our ability to make commitments we are out there trying to make friends again. The joy of making new friendships is that they will learn to love us as we are now, with a 9 p.m. bedtime and a lack of nouns on bad days. They’ve probably seen one or both of cry as we talk about that first year of marriage. They learn our dog’s name in the same dinner date that they learn about Jason’s time at Toronto Rehab and so all these bits of our life are just us, and not a comparison to who we were before. It’s lovely and it’s weird and I have trouble putting it into words.

Then this blog called Amidst the Chaos came across my news feed and the first blog I read was I Need You More Than You Need Me. Our circumstances are completely different, where this author has moved and lives far away from friends and family we still live in our hometown with only a 7 minute commute to either set of parents. But the heart of her blog touched me, and I think it’s exactly how we feel. We need our new friends in a way they don’t need us. It feels so lovely to be welcomed into friend life again, I wish I could explain to them how very grateful I am for them to meet us where we’re at and support us along the way,

P.S. if you love how Christine writes on Amidst the Chaos read her posts on Lessons from the NICU.  We’ve lived through completely different medical issues but she sums up everything I’ve wanted to tell anyone that asks about those first few weeks of hell during Jason’s recovery.

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.

Sacrifices for sleep

Yesterday I wrote about the gains we’ve experienced by using Jason’s B batteries intentionally. Today I’ll talk about all the things we do to make recovery possible, no matter which batteries he is using.

Sleep became key in Jason’s first year of recovery – a fact that we didn’t fully understand until the OT we hired to work with us privately had us keep activity journals and made note of how many hours he seemed to sleep for us to have a good day. Early in our time with her she asked us to have Jason get 10 hours of sleep a night, plus an hour nap, plus an hour wind down time before bed.

Seems reasonable.
Until you do that math and realize that’s 12 HOURS in bed per day!

12 hours.

Do you know how much you can do in 12 hours?!?

Do you know how much my husband does in 12 hours? This was a man that slept maybe 6-7 hours a night if I made him. We were going to lose at least 5 hours of working time in Jason’s life per day. You know how people are usually saying they could get their to do list done if they had an extra hour or two in a day? WE WENT THE OTHER WAY. TIMES FIVE.

I say this not for sympathy, but so that if you are in this position, trying to decide if you can make your sleep requirement work for you, you know that we get it. We have been there and we hated it and that’s okay. The truth is you can’t afford not to meet your sleep requirement.

Here are some of the things Jason gave up for sleep:

  • serving on two volunteer community groups
  • website design for himself and family and volunteer groups
  • nights with the guys
  • late night television
  • going into work 5 days a week (an hour commute each way plus a full day in the office meant he was never home)
  • early morning workouts
  • dinners with friends that start after 6pm

Obviously I did not need to adapt Jason’s new sleep routine but for us it was important to have something normal in our relationship. So we decided to go to bed together and then I just wake up early and have the house to myself for a few hours in the morning. There were still changes

  • I couldn’t work late if I wanted dinner with my husband
  • I lost my workout buddy (Jason)
  • I had to take on more around the house because I had more hours in the day

If you’re faced with this decision I really encourage you to whine about it, and rant about it, and then make the changes and get your sleep. Even looking at our sacrifices listed out, it was still the smartest decision we made this year.

 

 

 

The things we say

iStock_000020873846_Small

Imagine you were the driver of the car pictured here. You’d probably be more than a little upset at that damage right?

Now imagine taking this car to the mechanic and having your mechanic take a look, ask about the accident and then say “ Well there’s that one patch of rust over the rear passenger tire, I can definitely fix that up and you can drive home.”

You’d probably be ….less than impressed right?

Imagine how you would rant to your friends and family about the ridiculous mechanic, how you’d describe the damage to your car, the sound at the impact, the tow truck that took your car away. Can you even imagine your irritation if these were among the replies:

 

“ I had a flat tire once too, it wasn’t that bad”

“ It probably just needs to go through the car wash”

“You knew you had to get a new car sometime anyway”

 

It would be a little ridiculous. It’s hard to even imagine people being that obtuse when presented with proof of a terrible accident. In fact if you had visible evidence of this damage I doubt you would ever hear those replies. When people can see the damage I find they are much more likely to accept it.

Unfortunately brain injuries are invisible (http://www.changedlivesnewjourneys.com/hidden-disability-after-brain-injury/) and we got variations of these replies constantly. Jason was bruised and bleeding in the first weeks after he was attacked but once those healed most people seemed to feel that his brain had healed too.

Within a few months Jason’s doctor was encouraging him to “man up” and get over the brain bleeds (FYI this was HORRIBLE and nothing can force brain recovery). He did grant some work from home days for Jason when what was really needed was time off and a rehab program.

Friends and even some family, often answered our stories about symptoms with statements like “I get tired too”, “you’re just getting older” or my absolute least favourite “just be happy you aren’t dead”.

I believe that each time people replied that way they were unaware of the effects of brain injuries and were trying to be positive. They thought we really did need them to offer upbeat responses. Unfortunately the reality is those answers pushed us away and made us feel like we were considered overly dramatic. We were struggling to get through each day and when we discovered we couldn’t be honest about our troubles we just felt more isolated.

It’s hard. I know it’s hard. And it’s easy to want to imagine that your friends and family aren’t hurting as much as they are. But speaking as someone that lived through these awkward conversations for months, it doesn’t help to minimize the struggles. The same way giving advice on fixing a flat tire doesn’t fix the truck.

***

Do analogies help you? Check out these links for similar conversations about invisible injuries

http://hyperboleandahalf.blogspot.ca/2013_05_01_archive.html  (the fish are dead analogy)

http://www.huffingtonpost.com/2014/11/13/mental-illness-physical-i_n_6145156.html 

Treatments do exist

 

We lived for 8.5 months with very little medical help. We were confused, depressed, frustrated, angry. I’d done research online and continued to be upset by our doctor choosing to make up his own timelines for my husband’s recovery and to ignore every bit of research that had been done in the last 15 years.

If you’re struggling with getting people to take your injury seriously – we get it. And sadly we aren’t the only ones! This is just one article trying to help brain injury survivors convince their peers about their injury http://synapse.org.au/get-the-facts/when-they-dont-believe-you-have-a-brain-injury-fact-sheet.aspx

Amazingly we fired our family doctor, found a new wonderful doctor and within weeks had our first meeting at Toronto Rehab.

It was without a doubt the best thing that happened to us in our year.

It started with the phone call advising Jason of his appointment, not only did the person on the phone double check that Jason understood everything that was said, but she also EMAILED to confirm the details and left a message on my phone so that I knew to check for the information.

When we got into the center the receptionist sat with Jason to make sure he understood the paperwork and let me know what was being filled out.

Our first meeting with an occupational therapist and a speech language pathologist was an hour long asking each of us about symptoms and advising us that WE WERE NORMAL!

Then we met with a physiologist who spent time showing us on a model brain where the bleeds were and what symptoms were common with those injuries. He talked us through their program and made sure we were ready to dedicate time to Jason’s recovery. He spent time with us.

The neurorehab program included 2 weeks of assessments and then almost 8 weeks of sessions (2 days a week) with an occupational therapist, a speech language pathologist and a social worker. Jason was also assessed by a physiotherapist but he had no need to have sessions with her. During our time at the program Jason was treated kindly by each person he met and no one ever shied away from questions about his expected outcomes, why some symptoms were occurring or emotional conversations about life at home. I was often included in the social working sessions and his other team members always made a point of letting me know if there were any changes to his schedule.

At one point Jason was examined by a neuropsychometrist to assess his abilities for return to work. Although the assessments were extremely taxing (honestly I think the testing is hard without a brain injury) Jason was really excited to have something concrete to show any changes and help plan his return to work. The neuropsychologist who reviews the assessments  took almost an hour out of her day to chat with me and ask about our home life and make sure that our needs were being met.

The two and a half months we had with Toronto Rehab was hard (the commute alone was tiring -traffic is the worst) but it was a relief to show up every day and know that finally there were people on our team.

I don’t write this to flaunt our good luck at finding an awesome team, although I do think someone needs to brag about Toronto Rehab’s awesome team, but to give you hope that there are people out there that know what they are doing. There are rehab programs and teams that understand brain injury and all the ways it can influence your life. You just need to keep asking for referrals and pleading your case. I know it isn’t as easy as it sounds but it is so completely worth it. Just keep trying until you find a team you fit with.

 

If you are in the GTA and looking for treatment with Toronto Rehab you must have your doctor refer you to the ABI Network (http://www.abinetwork.ca/). This referral system screens candidates and matches you with the best program in the area for your symptoms and injuries.

Links to Toronto Rehab Information sessions: http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education/Documents/TRI_Class_Living_with_Stroke_and_Brain_Injury_Workshop.pdf 

and

http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education/Documents/TRI_Class_Living_with_Stroke_and_Brain_Injury_Workshop.pdf

Keeping community

We’ve taken a significant financial hit over the last year, lost income and added expenses for treatments. We’ve also lost friends and times with family while Jason recovers and I try to hold our house together.

In a spectacularly cheesy way the best help we’ve received hasn’t been the money or discounts people give us because they know we’re struggling. The absolute best support has been when people sit with us and let us talk, and walk that line of letting us have normal conversations and respecting when we need to change the plan due to TBI. There is so much comfort in sitting with friends and family and having a community. Even better when these times were coupled with food because by the time we survived a whole day of living with TBI it was rare either of us had energy to cook.

It’s hard to sit with friends and family in the uncomfortable and hard times but it’s a lesson worth learning. Showing up and talking about the damage, or not talking but also not demeaning the experience, can really help. I love this article written by a local author about the people that show up http://www.durhamregion.com/opinion-story/5675189-neil-crone-writes-about-the-power-of-showing-up/.
It doesn’t have to be any big spectacular plan, just show up.