July 22nd is National Glioblastoma Awareness Day (#GBMDay) which honors the individuals who have lost their lives to or face a diagnosis of glioblastoma, a devastating deadly type of brain tumor. We honor GBM patients, families, and caregivers, as well as recognize the tireless work of researchers and medical providers. Let's raise awareness and the hope to find a cure for GBM.
Somethings wrong with Dad! The call came from my sister Sharon, Thanksgiving Day 2017. My dad, age 72, was a fabulous cook. He had been making a legendary Thanksgiving Day feast for my family in my parents’ tiny galley kitchen (where you couldn’t even spread your arms out all the way) for years. It was a culinary effort that defied the laws of physics.
But today for some reason, the mashed potatoes weren’t coming together the way he wanted them to, and he couldn’t understand why. The “why” was because they were not cooked. Normally, we would have joked about this for the rest of the day, and he would have taken some good old-fashioned family ribbing, but because this was so out of character, it became somewhat alarming.
That was when we learned he had been getting somewhat forgetful: losing his way, not sure of how to drive to appointments, unaware of how he actually arrived at a specific location. I was convinced he was showing the early signs of dementia because I am an estate planning/elder law attorney, and as we attorney’s know everything.
Fast forward to December, and we are sitting in the hospital after my Dad had a seizure, and the doctor is explaining to us that my Dad has inoperable brain cancer. It was the first time I ever heard the word “glioblastoma”. My dad had terminal cancer. While I had been giving clients advice and guidance around issues like this for themselves and their families for years, now it was my turn to see things from their perspective. Here is what I learned:
You will not see it coming:
My Dad was bullet proof. Sailed through prostate cancer without a care, drove himself to his radiation appointments, regular appointment with all his doctors before and after his annual trips to Florida. Of all the things I thought could happen to him, brain cancer was not on my list.
Each of you will struggle in your own way trying to deal with it:
Everyone responds to crisis differently, and it’s impossible for every family member to deal individually with every aspect of caregiving. For myself, my mom, and my two sisters, each one of us had a job that was suited to our skill set. Sharon was great at coordinating meds, my mom was great at being a rock of support for our Dad (her husband of 51 years), Lisa and I were great at getting him to appointments and reporting back to “his team”. Stay in your lane, and do what you do well. Recognize that everyone has a role to play, and don’t be critical of how they do it.
Time becomes your most precious commodity:
Extended family and friends will want to help and visit. Don’t be afraid to ask for help, and don’t be afraid to set boundaries. Remember, they are experiencing the same feelings of loss and grief, and they are also looking for ways to offer assistance, so let them. You will be so overwhelmed by the role of caregiver that you will need your own time to charge your batteries and take care of your own family. It’s a team effort.
Family dynamics will be magnified:
For the five months my Dad was sick, my family spent a LOT of time together. Dr’s appointments, waiting rooms, treatments rooms, home care, and through it all, I am blessed to say that not one cross word was exchanged, no punches were thrown. We are pretty easy going family by nature, and brought no issues to the table. In some cases, any and all family dynamics get magnified as relatives and friends see the time getting small. Prepare for this ahead of time and be prepared to walk away if need be. Emotions are on high alert, and in some cases, it’s best to say nothing at all, rather than start World War III over something that will last longer than a loved one’s illness.
If you can do it right, you will never have any regrets:
When you reflect on the time spent and the care provided to a loved one who had a terminal illness, it will always be a time that you will look back on with sadness. But if you can look back at the same time and say “we did everything we could to honor and respect the life of that loved one”, it can bring family together, and possibly help you learn a great deal about yourself and how you might want loved ones to care for you in a similar situation.
I miss my Dad every day, but knowing we did everything we could for him in his time need has created a bond between myself and my family that I will cherish for the rest of my life, and who knows, maybe he and I will get to discuss it again someday.