Sunday, September 15, 2013

Brain games


It's funny how life has changed over the past six months. How my family has changed. How I have changed.

The "issues" and "problems" that seemed soooo important back then seem so insignificant now. I'm almost embarrassed that I shed tears to a friend about how lonely I felt after a breakup with a guy that was long overdue. How utterly silly now. How easily I gossiped about others not knowing their full situations or what might be going on in their lives. How petty was I. What made me feel then and what makes me feel now are worlds apart. And I'm still sorting them out in my own brain.

Sometimes, I feel sadness. Profound, helpless sadness as I help my mom do things that up until two months ago she could do for herself. Things I never thought I'd help her do - like eat and walk and go to the bathroom and remember names of people and what day it is and where she is. Sadness as I look around the common room of the skilled care facility where she now resides and see all the elderly people around her and think, "Why is MY mom here? She's the youngest one of the whole bunch!"

I see these people scoot around in their wheelchairs, bumping into walls or grabbing on to each other. Some cry for help or try to get up, only to have their seat monitors blare and aides come rushing. That happens all the time to my mom. In fact, she tries to get out of bed every night. She falls every night. The monitor goes off every night. Every night my dad gets a call that she fell out of bed. She thinks she has somewhere to go. She doesn't. She has nowhere to go but here.

Sometimes, I feel anger. That comes in waves. Dark, heated waves. Mostly, lately, I'm angry at the neurosurgeon who performed her surgery. Should I be? Probably not. After all, according to him, he saved her life. He repaired her ruptured aneurysm that he said was "paper thin" and would have eventually completely ruptured and surely caused death. The aneurysm was in a tough place, so he had to sacrifice an artery and rebuild a wall. He "wasn't sure" the effect it would have on what areas of the brain, or if the other arteries would compensate. He said we'd know better in three to four days.

I never saw him again. That's what makes me so angry. I know it's not his job to come back. I get that. He did what he was paid to do and that's it. But I want to go to him and ask him, "Did you know this was going to happen? Did you know that this COULD happen? Because you never said anything about this. You never SAID she might not be able to walk on her own again. You never SAID she would lose control of her bowels. You never SAID her memory would be so compromised she wouldn't know where she was or what year it is or what exactly the names of my children are. You never SAID she could potentially end up in a nursing home. You just said, "Time will tell."

WELL TIME ISN'T TELLING. You saved her life and that's what you do. But if you knew my mom, you'd know that she's the poster child for quality of life. Ask anyone she knows. Ask her oncologist who when she told him she was thinking of not doing another round of chemo said, 'I know you value quality of life. And when I feel that quality of life will be compromised, I'll tell you when it's time to stop fighting. It's not yet time.' Did you know this about her as you went into her brain and altered her whole life to save her life?"

Sometimes I feel utterly helpless. Helpless to help her. To think of things to stimulate her brain. Helpless in wishing I was smarter so I could know what parts of her brain were misfiring and what I could do to trigger them back in line. Helpless to get her to stay in bed because I don't want her to fall and end up back in the hospital. Helpless to watch my dad because I know he hates this even more than me because this is his wife. This is his life. And I cannot ever do enough or take away his sorrow or pain or frustration at this whole crazy ordeal.

And sometimes, every once in awhile, I feel happy. When I let go of my anger and sadness and helplessness and focus on right this minute and things are going well, I feel happy. Like the other night when I went to visit Mom. It was just the two of us. I had been reading up on the power of music and brain trauma patients and decided to put in the music from one of her favorite Broadway plays, Les Mis. It was as if she was transported somewhere - I could see it in her eyes. She REMEMBERED. She tapped along to some of the songs. She LISTENED. We talked about seeing the movie together and how she cried. SHE REMEMBERED.

In between songs we chatted - I listened to her nonsensical stories about people long gone doing things they never did and instead of correcting her just listened to her. We perused one of her puzzle books and took a walk. We talked about what color we would paint the room and then we straightened all the items on her bulletin board. We joked when she tried to pawn of her nightly meds on me and when she tried to get out of her chair I made her laugh and sit back down. I left that night feeling happy. But it didn't last long.

I miss my mom. I know there are many people who have lost their moms to death and the void is unfillable and I kind of get that. I'm just not sure how to deal with missing her so much when she's still physically here. She's not getting better. We don't know if she is going to get better. No one can tell us if she's going to get better. And I just want her better. Home and better. I think of the holidays coming up - Thanksgiving and Christmas - and I can't even face them. Those two holidays have been my mom's thing my entire life, and now I don't even think she'll be cognizant of the day. It's times when I think of these things that I want to bury my head under a pillow and make it all go away.

I am different now. I see things differently now. I feel things differently now. What mattered six months ago is wildly different than what matters now. Emotionally, I am exhausted. My whole family is emotionally exhausted. But we do this for her, because she deserves it. We do this for her, because she earned the right to be cared for and listened to and not given up on. We do this because we love her and she loves us and if the tables were turned she would be doing the same thing. So when I feel sad, or angry, or helpless, or even happy, I try to think of what my mom would do. What my mom would tell me. And she'd probably tell me to just deal with it.

So I do. I do it for her.


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