Navigating Our Caregiving Seas

It is a bittersweet moment when I recall trying to create normalcy out of something that didn’t even have normal as part of its description… “This is the Hospital Emergency Room calling – your husband has been in a car – oh I mean bike accident please call us…” My husband sustained a traumatic brain injury because of a cycling accident one fateful day in July 1997. No one ever wants to receive that call…  To help navigate this lonely and unknown journey, I used my research skills to find 73% of the practitioners that could help my husband in his recovery. I spoke to anyone who would listen (quite literally). Learning along the way to craft better questions to get the answers I needed as I connected the dots in providing the best care possible.   Fast forward to the Fall of 2017 after quite a year, I had bloodwork done it came back with thyroid being out of whack. I soon started on Thyroid medication, once moving to Ontario I was diagnosed with Hashimoto’s thyroiditis.  One chiropractor said (and I am glad he did), you know the medication won’t solve the problem. Those were words I needed to hear.  I recalled how I had used my research skills to help Donald now it was time to use them to help me on my new healthy healing journey. This was the first step in me standing up 4 ME. Using my aptitudes, abilities and newfound skills I now help to connect and empower other caregivers in the storms of caregiving.

Can one question change the course of one’s life? I think so. I still remember my mom saying, I want you kids in at least one physical activity every year.” So, as long as I can remember, I was in at least one scheduled physical  activity every year: ballet, baton, skating, downhill skiing, swimming lessons, and then there were all the unscheduled activities of playing in the neighborhood. When our family moved to the Deep Cove area of North Vancouver BC, it was my first foray into backyard swimming pool lessons. I didn’t like the instructor at all. I was so scared of the water, but you know, she was the first person in my four years of life who told me what colour my eyes were. I have never forgotten that and that is the positive impression I took away from that set of lessons. The following summer I started another set of swimming lessons with Mrs. James in her backyard pool program. I continued with Mrs. James’ swimming lessons for three summers. It took that long for me be able to put my head in the water and take my feet off the bottom of the pool at the same time. This equated to finally receiving my Pre Beginners Swim badge. That is the one and only swimming lesson badge I ever received in my life. I think two reasons I finally passed were my dad’s patience with me while we were swimming in local lakes on summer holidays and because we were moving to another city that fall.  Fast forward to a summer five years later, I was 13 in the summer between Grade 8 and Grade 9. My dad was helping with the start-up of the town’s swim club. He took my brother along, who was younger and much more athletic. I wondered why I wasn’t allowed to go as well. I asked “Why wasn’t I allowed to go to the swim practice?” That question changed my life in more than one way. You need to understand that I had always been very academically inclined and had done well in school. I excelled at 4-H and other community activities I was involved in, however the sports arena was very different for me. I was, more often than not, the last to be picked to join a team in school PE classes. My high marks in PE came from my attitude and participation, rather than having any athletic talent. My dad did take me along that day with my brother. Because our town didn’t have a pool yet, we went off for the swim practice in someone’s private pool: a small, rectangular house pool. I wasn’t able to swim even the width of the pool without being thoroughly winded. To give you a picture of this experience, when most people start swimming in a swim club they start at the grassroots, or even a bit higher, level. The Olympics would be the elite level and I started 1500 feet below the grassroots level. I still remember my first 100-metre freestyle race in the old Quesnel outdoor pool. My time was 2:00.02, which was last place by a landslide. When I would come home from swim meets and was showing my family my ribbons, my brother would ask (if, for example, my ribbon was a 4th place ribbon), “Were there four people swimming in the race?” My first swim meet I had no voice, because I had been cheering for most of the swim team. My dad, who was coaching, saw that no one was cheering for me when I was racing. He said to the team, “Rosalyn has been cheering for you guys ; you go and cheer her on.” It was at the pool where I learned some of life’s tough lessons. I had to deal with a friend’s death and tell someone for the first time someone had died. I learned some people cheer you on and others couldn’t care less, or attempt to walk all over you. I got my first taste for teaching/coaching in the pool. I had started out as a very weak swimmer and learning the technical aspects of swimming was tough for me, but by learning how to break down complex skills into manageable pieces, pressing through adversity and continuing to practice with my head held high, my physical coordination increased. I always have had an imagination and I wanted to do so many things: be an accountant, an optometrist, an architect, a nurse, a librarian and I am sure I am missing some. But, because of my newfound passion for recreation and aquatics, I applied to the University of Victoria for the BA in Human Performance program, which had a focus similar to recreation. I had to go through a physical and oral interview to be accepted. Never really being a runner, I made it through anyway, much to the surprise of another swim coach who had helped me once or twice. In my second year, I switched to teaching PE and again had to go through the whole interview process, complete with sport evaluations. PE teaching was a true challenge. I had never run hurdles, swung on uneven bars or for that matter, ever missed so many golf balls. In the end, I excited to discover I had passed a track and field activity class with a “D”. I didn’t really fit in swimming for the university , so I made the decision to leave and I swam with the city swim team and its younger kids for the following couple of years. However, I did play water polo that year with the university club team. My anticipation skills skyrocketed after playing in goal and seeing the overall game picture from that goal area. There was a huge learning curve for me as I navigated swimming, going to university and living away from home. This is where I looked at the clock and realized I needed eight hours ofsleep, but had to be up at 5:00 so I better aim to be in bed by 9:00,

I am a team player and find it so important to CONNECT with others to learn, to laugh, to cry and/or to come together as community. In community, we can EMPOWER each other through reaching out for help and likewise helping others and providing suggestions when asked. We can learn to advocate for ourselves and others to better NAVIGATE our life as a caregiver whether it feels like we are on a stormy sea or relaxing on a calm cool body of water.   What does it mean to CONNECT? C – CommunityO – OutreachN – NavigateN – NetworkE – Energy/Emotions/ Effect/EnmeshC – Coming TogetherT – Part of a team that thrives together   What does it mean to EMPOWER? E – Getting energizedM – MindfulP – Power of PossibilityO- Offering FeedbackW- WorthwhileE- Embracing enthusiasmR – Reaching out in the community   What does it mean to NAVIGATE? N – New opportunitiesA – Asking for help and likewise being willing to help othersV – Voyage – you are on an incredible journeyI – InitiateG – Go Google for new knowledge which will give me more “power”A – AdvocatingT – TogetherE- En route

As I was travelling on this often lonely and invisible caregiving journey, the focus was always on my husband and very few ever asked about me. I often felt as though my thoughts and feelings had to be swept under the rug. I remember a counselor once said, “So Rosalyn, what are you going to do if you don’t move out of Vancouver?” That had been a desire of mine, because up to that point it had been over five years living in BC’s lower mainland with nothing to show for that time. In that conversation, there was nothing said about my husband looking at different work options. I am a person too with wants and needs, emotions, questions and dreams. Feeling like I was being swept under the rug was hard to deal with as I realized I am important too and that feeling of being alone when another person was around was often hard to deal with.

I want to share with you the world through my eyes.   Most of us come into this world with the ability to see, to hear, to smell, to taste and to touch. However, there are those of us who may have one of our senses obstructed in one way or another or even more than one sense that does not work “quite right”. It is truly amazing what those who may not have one or only part of their senses can accomplish.  My story is a bit different. I came into the world three weeks late and weighed in under 6 lbs. I spent my first couple of days in an incubator. You wouldn’t know that by looking at me now! At the 3 month doctor appointment, he noticed something about my eyes and sent me on to an eye specialist who informed my parents “that he couldn’t tell them what I had because I had all my eye parts”. My mom has told me one of the scariest times for her was when I was so young and had to be put under anaesthesia so they could measure the pressure of my eyes. A new pair of glasses was the norm each year.  I remember the summer between grade 2 and 3, I had my first pair of photo gray (what we call transitional lenses now) to help with decreasing glare. I sat in front of the class from grade 1 to grade 3 and the start of grade 4.  Once we moved up north (7 hours north of Vancouver BC), I didn’t seem to have the same luxury and was seated where there was room. With parents who were active in the community, we were often volunteered whether it was to haul dirt to re-landscape the senior citizens home or selling horse racing programs with the Kiwanis club.  One fall day after graduating from university, I headed to the local government agent’s office to write my test for my learner’s driver’s license. I filled out forms and then proceeded to get the “Eye Test”. The next part was which “x” stands out? To me I could not see any “x” standing out. The Agent told me I was blind in my left eye (which I knew I was not). I was told I had to get a medical form signed by the eye doctor. I went to the eye appointment. At the beginning of the appointment, I asked would I be able to get my license and the doctor said I don’t know. Halfway through appointment I asked the same question and received the same answer. At the end of the appointment, I asked again, and this was his answer. He said that he wasn’t sure but thought if I got my license there might be a restriction for driving during the day. I said but I see better at night and his answer was it is the bright lights.  I took the form he had filled out and left his office. Once outside, I scanned the completed form and the space for a description. It said “Congenital aniridia / congenital cataracts.” I finally had an answer always knowing “there was something not quite right with eyes” but not knowing what. I had an answer. I called my parents to tell them the news and I had to spell it out to them. None of us had ever heard the word aniridia. This story is a snapshot of my life. Whether someone has aniridia, any other vision impairment or no vision impairment they have so much to bring to the table – their experiences, their likes and dislikes their abilities to create community and to be proud of what they can do using their talents and strengths.  A person is a person first and if they have a disability that is secondary.  

Have you ever felt like you have been giving, giving, giving with no support? I sure have! I reached back into my lifeguard training for this analogy and it has really helped me think about me. In Canada, a lifeguard is a trained professional who has passed their NLS -National Lifeguard service. They are the trained professionals. When the whistle blows, you as the lifeguard go in and you know you have someone right behind you – otherwise known as “they have your back.” When you have your Bronze Cross and you are in a lifeguarding role it’s a different mentality. If you want to save someone, you first need to make sure you are safe as you approach the person in distress. You most likely are on your own and there is no point having two people in distress. In this past year what I have learned is when I don’t have or don’t feel like I have any support – I need to look after myself vs putting myself all out there and emptying my emotional tank. I have learned I always need a reserve.

It wasn’t until January 1998 (the accident was July 14, 1997) that I finally “got into the saddle” and fully realized something was really very wrong and that he needed more help. To help me navigate this lonely and unknown journey, I used my research skills to find practitioners that could help my husband with his recovery. I spoke to anyone who would listen. I learned along the way to craft better questions to get the answers I needed as I connected the dots in providing the best care possible. Throughout the seven years from the accident to the court date, I managed my husband’s physical and mental recovery on a daily basis. During the court case, I realized I had sourced 73% of the medical professionals and practitioners that my husband saw to help him on his recovery journey. I was also always on the hunt for those who could help my husband. Caregivers are often backstage, working to help the star performers (the people who have sustained a traumatic brain injury) shine.    “The level of stress experienced by the family members of patients who have TBI is such that professional intervention is appropriate, even after 10-15 years after the injury occurred. It is not the severity of the injury, but the nature of the injuries, which determines the level of stress”. (Verhaeghe, S. 2005)

Did you know Snow White and the 7 Dwarfs are connected to brain injury? How you ask? Let me tell you As a spousal TBI caregiver, life changes, roles change, responsibilities mount.  It is a struggle to balance all these new roles which can include: Financier. Taxi driver. Walking & talking daily planner. Case manager Public relations person Provider Role model Garbage man Chief cook & bottle washer   I was feeling like Snow White, and I live with the 7 Dwarfs. …and VOILA!   The Snow White and the Seven Dwarfs checklist Is he or she: Sleepy Dopey Grumpy Bashful Happy Sneezy or Doc (telling you what to do or Mr. Fix IT)?   If you are a caregiver you likely have more information about your loved one than you realise. But what you do know is crucial for your loved one’s healing journey. Share your Snow White and the Seven Dwarfs checklist with your loved one’s interdisciplinary team.  As a spousal tbi caregiver, you too can use the checklist for your own wellbeing too! Do you notice that you or your loved one are: Predominantly one or more of the 7 Dwarfs? One of the 7 Dwarfs at the same time of day each day? Let me know if you try out the checklist and what you notice. I am excited to hear from you!

Oh boy!  Drake nailed it!  The journey really does teach us about a destination we want to reach but once we reach that destination have, we really arrived? Or are we on another journey to another destination? Do you consider your life a journey or just something to do?  Is it doing the same ole thing day in and day out, or is your life’s journey learning more about you, learning more about others around you, connecting with others around and hearing their stories? Do you know you have a story too? Your journey is your story. Even though we’re all on our own journeys we do have ways to connect on parts of our journey. Sometimes our journeys are exciting slaying dragons or sitting at king Arthur’s table. Sometimes that journey is standing at the kitchen sink washing dishes, doing the laundry, working at a 9-5 job trying to figure out how to make ends meet. In each part of your journey there are little gems of wisdom, little pieces of gold – what kind of wisdom and little pieces of gold have you collected through the years? I know if I look at myself, I continue to find little pieces of wisdom, little successes in little things each and every day. Sometimes I am much more aware of these gems than other days. If I look at my journey – regardless of my age, where I live or my surroundings – as an opportunity to learn, to share and to connect it continues to lead me on a path. As one of my favourite poems says: “There’s no thrill in easy sailing when the skies are clear and blue.  There’s no joy in merely doing things which anyone can do.  But there is some satisfaction that is mighty sweet to take,  when you reach a destination that you thought you’d never make.”-Edgar A. Guest, from the poem “Pluck”

I remember enjoying the sights and sounds in Ottawa in February 2023, I had to make a quick trip to the grocery store when we returned home. My purchase included a variety of greens for our daily breakfast smoothies, some sweet potatoes, some olives, and frozen shrimp. That will be $84 please – EGADS! This transaction got me thinking back to a time about 6 to 8 months after the cycling accident and not so “Mild” traumatic brain injury (How you put the word traumatic and mild as the adjectives for said injury is a post for another day!). At that time, money was tight, my husband was receiving $300/week “pay” from ICBC. In one month, he would receive $1200. Over half of that went to rent and the rest we were using for bills and life. But you know what? This didn’t stop us from helping others and putting ourselves out there. We met a wonderful family during this time, and you know who you are… It was also a time where learning to embrace a level of ambiguity came in. I spoke to anyone who would listen: Learning along the way to craft better questions to get the answers I needed as I connected the dots in finding resources and providing the best care possible for my husband. Are you a spousal caregiver of someone with a traumatic brain injury? Are you looking for resources for either yourself or your spouse? Do you or are you someone that has had a TBI/Concussion and looking for resources? Or are you someone looking for specific resources for whatever is happening in your life? Let’s connect and have a wonderful day!