When The Reality of a Brain Injury Hits Home

A Story for Brain Injury Awareness Month

“All I wanted was for my mother to get better, but I knew I was being too hard on her.  How do I find a balance between pushing her recovery while giving her space to breathe and just naturally heal?”

Exactly 3 months ago, the world changed.

I am a health care provider who works with brain injury survivors – whether it’s working on their rehabilitation goals, helping them find important resources, or supporting their journey as they navigate through uncharted territory.  I’ve had to provide comfort when meeting a brain injury survivor soon after their traumatic event.  I’ve helped brain injury survivors return to their activities of daily living, like putting their jackets on for the first time.  I’ve worked with brain injury survivors to meet their goal of going back to salsa dancing.  I’ve dedicated my career to helping brain injury survivors in all aspects of their life. But things panned out differently when it was my mother…

My mother is vibrant and active, 66 years young, and the main caregiver to my father who has a visual disability.  She’s quick on her toes and always ready to make quips about how I haven’t given her grandchildren yet.  On March 15, 2020, I received a call from my father that she had fallen to the ground and wasn’t able to get back up.  He couldn’t see what had happened, but he knew something was wrong. When I quickly arrived at their home and ran to her side, I knew immediately what had happened. I swiftly went through the signs of a stroke:

F – The left side of her face was drooping

A – She couldn’t raise her left arm

S – She was slurring her words

T – I had to act FAST, as time was of the essence, and immediately called 911.

Cases of COVID-19 were becoming more prominent, so when the paramedics arrived, they were donned in masks and gloves and went through the screening procedure.  My mother was transported to the hospital and got in quickly. 

Based on their questioning and deductive reasoning, it was determined that she must have had her stroke recently.  Although all of the preceding events were a blur, I mentioned that I recalled seeing a cup of coffee on the kitchen table, revealing that she must have woken up well enough to walk downstairs and make her morning coffee.  This was crucial information, as it determined that she was a candidate for TPA, the gold standard medical treatment to break up a blood clot and being able to receive it is dependent on how long ago the stroke occurred.

Since it was Sunday, there weren’t any neurologists on site, so one was teleconferenced from Ottawa.  Little did I know that this would only be the beginning of our medical system’s widespread use of virtual and telehealth care.  After some further questioning and additional imaging, the neurologist determined that my mother required specialized surgery to remove the clot in the carotid artery in her neck.  She needed to be transferred to a hospital that could perform the surgery and it needed to be done immediately.  If there’s anything I could be grateful for, it would be that she had a stroke on a Sunday.  The emergency department was quiet (for now…) and there was no traffic.  Four hours later, my mother’s surgery was done and she was recuperating in the intensive care unit (ICU).

The surgeon showed me images of what my mother’s carotid artery looked like before and after the surgery.  What an incredible sight.  Before the surgery, you could see a large clump at her neck, indicating where the blood clot resided, and that it was blocking blood flow to the right side of her brain.  After the surgery, it was like a tree of life had grown in the right side of her brain.  All of the blood vessels of her brain were being nourished with blood again – with life again.

My mother’s time in the ICU had its moments.  There were a couple of episodes when she had atrial fibrillation (irregular and rapid heart rate) and was at risk of having another stroke.  She was extremely tired and delirious, understandably so.  She had been through so much in less than 24 hours and her neighbour was a loud snorer.  Her ICU nurse mentioned that through her delirium, my mother was telling her that she wished I would have children soon.  At least some things hadn’t changed. 

What stood out to me the most, was how I could feel a sense of increased alertness within the ICU.  That weekend, they had just implemented the one visitor rule in the ICU.  I was thoroughly screened before entering the hospital.  There were whisperings among the staff about how they needed to review how to properly don their full personal protective equipment.  They were talking about how there would be a large influx of COVID-19 patients soon.  They sounded worried but fully prepared.

I felt awful that my father and my mother’s large family couldn’t visit her.  She’s the eldest of 10 siblings, with numerous nephews and nieces.  As my grandmother passed away just last year, she is the matriarch of our family now.  They were heartbroken to hear of this happening to her, especially since my grandmother had had a hemorrhagic stroke (bleeding in the brain) prior to her passing.

After only being in the ICU for 4 days, the stroke team conducted their assessments and made the decision to discharge her.  I had been listening to the news and the cases of COVID-19 were increasing.  There were fears that the ICUs would be overwhelmed.  I was partly glad that they were discharging her soon.  They deemed her medically stable and suggested that if I felt comfortable carrying out her rehabilitation, she would be better off at home.  She had higher-level balance issues, generalized weakness and fatigue.  I could do it.  I do this every day for my job.  I could do it, right?

Boy, did I not realize how different it would be…

It was difficult at first to separate my role as a health care provider and as a daughter.  I wanted my mother to do her daily exercises but felt discouraged when she said she didn’t want to do them because she was too tired.  I kept track of all of her medications, and easily became upset when she forgot to take a dose.  I wanted my mother to go on walks with me but felt irritated when she wanted to go back home after walking just one block.  All I wanted was for my mother to get better, but I knew I was being too hard on her.  How do I find a balance between pushing her recovery while giving her space to breathe and just naturally heal?

What kept going through my head was,

“The first 3 months is when the most recovery happens!  We need to take advantage of them!”

“If it doesn’t happen now, it’ll never happen!”

Of course, I should know that the brain is not hardwired.  It has the capacity to repair and rewire itself for many months and years after an illness or injury – as thoroughly addressed by Norman Doidge in The Brain’s Way of Healing.  This is called neuroplasticity.  Through experiences and changes in the environment, new connections can be formed to regain cognitive and motor functions that were lost in the injury.

All my mother wants, is to know that her daughter is there for her.  She wants moral support, with the occasional nudge to motivate her to do her exercises.  Of course, she appreciates my specific knowledge and skills in her situation, but I have to keep reminding myself that it has only been 3 months.  I need to show kindness and patience.  Be supportive and motivating.  Be present and forgiving.  It has only been 3 months.

The same could be said for all of us in our current situation.  Imagine if you were living in the middle of nowhere and came out to find out that we were in the midst of a pandemic.  A lot has changed around us, but who we are and what we want from others remain the same.  We want kindness and patience.  We want support and motivation.  We want those around us to be present and forgiving.  We are all going through turbulent times.

Through all of this, I have learned that,

If both my grandmother and my mother had a stroke, am I destined to have a stroke too? 

Not exactly, but a brain injury can happen to anyone.

Could my mother have had a stroke while she was walking down the stairs, or when she was holding her scalding cup of coffee?

Yes, because a brain injury can happen anywhere.

Can my mother have a life-threatening stroke at the same time as a pandemic? 

Of course, because a brain injury can happen anytime.

Will my mother ever stop asking me if I’ll have children soon? 

Probably not. 

It’s comforting to know that some things won’t change.