My personal disengagement plan – disconnecting before the disconnect
Posted Aug 07 2009 12:06pm
When my mother was initially diagnosed with terminal brain cancer, in a move that is very uncharacteristic of me, I chose not to Google the disease. I chose not to look up treatment information and survival statistics. The reasoning behind this, other than my complete lack of desire to face the truth, was that I felt like this would be giving in to the disease. Admitting it has taken over our lives. And my mother wouldn’t have it.
After a while, I couldn’t put it off any longer: I had to find out the survival rates, if only so I could make sure I knew how long I had with my mother, if we were lucky. For those of you who read my blog regularly, you already know that even if something is going to hurt me, once I get it in my head, I have to do it (such was the case with reading my mom’s blog several weeks after she died).
On the one hand, I had a couple coworkers whose fathers also had brain cancer, both of whom had outlived the 3 year statistic. On the other hand, I had all the information online that said survival rates are 3 years at best. While I’d like to say I’m an optimist, I’m not. Maybe a bit more nowadays, but generally speaking, I’m not. But I at least pretended to be with my mom.
I’m not sure exactly what it is that the doctors told her when she was initially diagnosed, but as far as survival rates were concerned, she did not share information with us. The surgeon was very upfront, however: He did tell us that there is no way to be sure the tumor was completely removed, and that it’s an aggressive form of cancer that would definitely grow back.
Thus began my personal disegagement.
Whenever I would see a bride/wedding/whatever with both parents, I would tell myself, “I won’t have that.” Now it’s something that can make me cry.
Whenever I would see a young woman with her mother and child, I would tell myself, “I won’t have that.” Now it’s something that can make me cry.
Whenever I would pass a grandmother with her grandchild, I would tell myself, “My kids won’t have that.” Now it’s something that can make me cry.
Whenever I would pass an elderly couple walking together, I would tell myself, “My parents won’t have that.” Now it’s something that can make me cry.
Whenever I would see my dad taking amazing care of my mom, with so much patience and love, I would tell myself, “I hope one day my dad finds someone to share his life with.” Now the thought of it can make me cry.
The worst, probably, was before she died, when I was already saying in my head “My mom died.” As if I were getting used to saying it and hearing it. Which, of course, made me feel incredibly guilty since she had not yet died, even if she was basically gone.
I haven’t discussed any of this with my family; I’m not sure if they had disengagement plans going on as well. I can only imagine my dad began “disengaging” before my mom had died, and my sisters probably did, too. My sister gave birth 2 or 3 days after my mom’s second brain surgery (tomorrow is my niece’s 1st birthday), so my mom’s absence as a hands-on grandparent was definitely felt by her when compred to my nephew’s birth and first years.
Though at least she got to have our mom at her wedding, and she got to have our mom teach her how to be a mom herself.
My dad had already been alone for quite a while before my mom died, if nothing more than the fact that she hadn’t been home for the two months leading up to her death. I don’t know if he had prepared himself ahead of time, but I do know how hard this was on him. My parents were best friends for a year before they ever became a couple, so I can only imagine how profound his personal loss was.
I have no idea how my grandparents prepared for the loss of their daughter. I am too scared to find out. As it is, my grandfather’s health hasn’t been great since my mom died, and surely his lack of will to really get better is directly related to the loss of my mother. The thought of losing him any time soon is something I am not even remotely prepared to deal with right now, regardless of the support I have.
And still, despite my long mental preperation (and I apologize if this offends anyone), I don’t feel like I was truly prepared. I still cry at the drop of a hat. Sometimes I am in situations where I look in from the outside and can’t believe that we are even dealing with circumstances that we shouldn’t even have to deal with.
My dad having a new girlfriend? That girlfriend having a family? Step siblings? The concept is totally foreign and beyond me. Don’t get me wrong – I want my dad to be happy, we all do. But the fact that we even need to think about him finding someone else is so ridiculous that I find it, at times, laughable.
I do know that my sister (the mother) feels similarly to me. She told me about a month ago that it doesn’t feel like our mom had died; It feels like she’s been on vacation. We’ve gone 3 months without seeing our mom, so it’s not hard to “deny” it has happened, even though it has. So I guess we’re still waiting for the other shoe to drop.
Posted in Brain Cancer, brain tumors, death and dying, Family cancer support, Glioblastoma Tagged: Brain Cancer, brain tumors, death and dying, Family cancer support, Glioblastoma, terminal cancer, things I'll miss out on, things she'll miss out on