Today is National Family Caregiver Day!
We want to bring awareness to caregivers and the essential role they play in the lives of their loved ones. Caring for a family member with a brain tumour brings many challenges and rewards as Laurie shares in her experience as a caregiver.
It is early morning, our bedroom is dark and a strange and horrible noise jerks me from my deep sleep. My husband James is beside me and I realize the noise is coming from him. He’s moving in an odd fashion. The veil of slumber tells me maybe he has a muscle cramp so I roll over to try to comfort him. When I reach his hand I try to move it. It is rigid. I can’t get it to move. I’m fully awake now. Something is very, very wrong. I fumble to turn on the light. The sight before me seers its way to my brain. James’ eyes are rolled back and bugging out, his face is puffy and distorted, and his body is seizing uncontrollably. Panic set in immediately and I take him by the shoulders and start screaming his name over and over at the top of my lungs. The word rolls off my lips as a panicky screech in a way that when I hear myself, it’s like I’m having some out of body experience. The seizure finally ends and relief washes over me but is quickly swept away. James isn’t breathing. Within seconds, I’ve gone from quiet slumber to my husband cold, clammy, sweaty and not breathing. Somehow, I make it through the 911 call. At 11:00 pm the doctor tells me my husband has a brain tumour.
Hi, I’m Laurie, a wife and caregiver for my amazing husband James who was diagnosed with an oligodendroglioma in 2013. After undergoing surgery to remove the tumour, James suffered an acquired brain injury (ABI) causing issues with short term memory, word selection and orientation to date and time.
The day of James’ surgery I took a picture of him with his freshly shaved head and the little guidance dots stuck to it. To this day that picture makes me cry. It is the last picture I have of the man I married and of the last moments we had together as the people we were then. This experience has changed us both. I still love James with my whole heart and I’m exceptionally lucky he is now very similar to the man who was wheeled into surgery, but it has been a long road to get here.
The tumour ended up being bigger than anticipated and almost his entire left frontal lobe was removed. James’ brain did not tolerate the surgery well and no amount of steroids seemed to help and he couldn’t sleep which exacerbated the problem. He was given cognitive tests regularly and scored poorly. Whole conversations were had with him looking around rather blankly not realizing we were talking about him.
A doctor advised us he would never work again and may not be able to come home at all. I ultimately took him home because the hospital was not the right place for him, but there also wasn’t really any place that fit our situation. This was the start of the road to discovery. Finding “our people” in the friends, family and community resource or support people we could count on and the ones we couldn’t. It is also where me being a caregiver and an administrative assistant kind of become intertwined.
There is no way to sugar coat those first months and so I won’t try. They were exhausting for both of us constantly engaged in treatment and therapies. After a 12-week combined medical and stress leave (I also underwent surgery two weeks after James’), I was back to work full time. One of the difficult things to manage is the roller coaster of emotions that were and are at play all the time.
James was reasonably stable from the time chemo ended in Fall 2014 until Fall 2016 when another spot showed up on his MRI. It is a small spot that comes and goes on the MRI and is in an inoperable location. It may be tumour, it may be flare, it may be inflammation from the radiation. Wait and see is not a game I’m enjoying.
I find myself swinging between a lot of positive emotions like enormous gratitude for simple pleasures and the time I have with James. Then there is the negative like quite a lot of anger at the injustice of it all. As a caregiver, this road has changed me for better and for worse.
I was always a very type “A” person. I had my life planned out at age three (no kidding). Spoiler alert, it isn’t really going according to plan. I am now a more patient and flexible person when it comes to schedules and life. Each day used to be set far in advance whereas now it is play it by ear moment to moment. I am a better communicator because of all the tools and resources I have learned to rely on. I seize small pleasures and little moments with far more wonder than I used to because they can’t be taken for granted. Many of the down sides are borne of the extreme worry I seem unable to let go of. I can happily report that after the first two years the sight or sound of emergency sirens no longer makes me cry automatically and it is rare that the sound triggers a response now. I have a stomach that twists out of place when stressed and sometimes stress hives and weight gain from combined stress eating and lack of energy or enthusiasm for cooking. I remind myself regularly that it is unhealthy to lose oneself to caregiving and how important it is for both of us to be James’ wife first. My efforts in this area are still small but growing and very worth it.
Throughout the last five years, one thing has evolved that I wouldn’t change for anything. My husband had been and is my best friend and the love of my life. Watching James handle these set-backs with courage and acceptance has also made him my hero.
When I’m on that roller-coaster of emotion, or exhausted and I hit the low points what helps is knowing that no matter how frustrated or tired I am or how much I would wish him to be cancer and ABI free, he wishes for those things more than anyone else.
Neither of us dwells on that though because we try to focus on appreciating all the little moments we can with each other. It is in those moments that it is all worth it and I am happy to have this life with James and grateful for all the support workers that help with that.
“Communication is key! It is by far the most critical skill you can cultivate. You are your loved one’s advocate with all support personnel so the what, how and to whom you say things matters at all times (especially when good communication doesn’t always mean nice or happy). More importantly, is optimizing communication with your loved one. It isn’t an easy road. With or without an acquired brain injury as part of the journey, emotions WILL erupt making good communication an imperative.”
Find more tips and resources on how to take care of the caregiver on our website.