difficult conversations: driving

There are many difficult conversations to be had with a brain tumor patient. The one I've found the worst, so far, has been driving. I distinctly remember one day a feeling I had never felt before--damned if you do, damned if you don't. I thought I knew what that felt like, but until I had to talk to my mom about her driving I had been all wrong. Should I be the bad guy and keep her cooped up? Or should I put her (and other drivers) in harm's way and allow her to drive? She was an adult still, right? Who am I to tell her no?

Yeah, driving is essential to one's sense of autonomy. It was something more for my mom, though. She has always been fiercely independent. Single mom working two jobs to support us, I mean, it's a Lifetime movie. No handouts, no gimmes, no free lunches. Now she feels like a prisoner in her own home. The creeping paranoia fueled by the cancer led her to feel that "we" (my grandparents and myself) were trying to keep her boxed in. 

The options?

1. Take the keys, sell the car; do whatever it takes to keep her from driving. She's lost something like 75% of her peripheral vision, her concentration has dropped to near zero, and her memory is shot to hell. Sometimes she doesn't know where we are when I'm driving us down our own street.
2. Let her drive, wait until she gets in an accident to say "I told you so," and hope that no one else was hurt that might sue us and take everything.

If there are other caregivers reading this, here are some of the hoops we've jumped through that may or may not benefit you and your loved one:

• In-clinic tests. The brain tumor clinic at our cancer hospital offers a battery of neuro-cognitive tests, one of which is a driving test. From what I understand this involves simple tasks that are not overtly driving related. Instead, they measure vision, reaction time, short-term memory, etc
• Neuro-opthamologist. A neuro-opthamologist will be able to tell you exactly where any vision deficits appear in the field of vision. The visual field rules for driving vary by state, but the doctor will be able to explain it all for you.
• Driving programs. Our hospital has a two-stage driving rehabilitation program. It is a hospital-wide service that I imagine deals more with the elderly and those with traumatic injury to their limbs than brain tumor patients. The first stage is an in-office exam that includes simulated driving. If the patient passes these he or she moves on to a road exam. 
• DMV. You can anonymously contact the DMV, from what I'm told, and ask them to retest a driver. Sneaky? Yes. Might it save lives? It might.

Here is my mother's experience with the above: she failed miserably the initial driving test. It seemed clear to everyone but her that she probably wouldn't improve is she retested at a later date. The doctor, however, recommended the neuro-opthamologist. We had to wait over two months for our appointment, and after a few hours of testing the doctor explained that my mom had severe deficits in her field of vision. Rant: no one ever mentioned that her tumor was near/affecting any vision center of her brain. My neuroanatomy is a little rusty, so I figured her problems were in the memory centers. This was kind of a shock. She was, however, just legally able to drive, but with restrictions (not at night, not on highway). She referred us to the driving program in order to test in a practical manner her recommendation. And that's where we're at now, waiting for the appointment.

       
Luckily, lately my mother has taken to walking, so she grinds on me less and less about driving. But, she shouldn't be out walking at 6am in her mismatched pajamas. That's a whole other story. She also hid her car keys from me at some point in the last two weeks and seems to have forgotten where she hid them. The streets are safe(ish) for now.

I like this bit from a doctor quoted in an NYT article:
"I dreaded conversations about driving. Driving safety wasn’t something I could treat with a prescription or with how-to medical advice. It was a big messy issue that sprawled beyond the confines of the office to the realm of public safety."

Messy is the right word. Who gets the final say? Which is the lesser of evils? What can the patient do? Can doctors report patients to the DMV? From my limited research, it seems that doctor-patient confidentiality enters a bit of a gray area here. If the doctor believes that a third party might be endangered, a doctor may break that privilege. I believe protection for doctors, however, varies by state. So, like everything else when it comes to brain tumors, the answer is "eh, maybe, depends." 



Image: Rodgers Naylor's Untitled, 2010, link.