It has been two months since my mom ended the one-two punch of radiation and chemotherapy, and quite frankly, her progress has not been great. She is still experiencing many of the cognitive deficits that caused me to take her in for evaluation in the first place. In addition, the treatments left her fatigued and lethargic.
On Monday, we went to see her neuro-oncologist at the Mayo Clinic, Dr. Kurt Jaeckle. He is a wonderful doctor, and we’ve been very pleased with his care. I expressed to him my frustration with her lack of progress. She eats breakfast, sleeps, eat lunch, sleeps, eats dinner, and goes to bed. Her mail is unopened. Her newspapers are in a pile, unread. She has progressed from a wheelchair to a walker, but only uses it to go to meals.
He listened, and then gave us a name for it – lack of initiative. This is not the typical lack of initiative, where you can’t find the motivation to get to the gym. He described it as an inability to initiate action.
The naming of a thing is powerful. I felt like the clouds parted and I could see, clearly, her problem.
It’s like this: Imagine you are standing in your kitchen. You mentally run through the list of things that need to be done: start laundry (but wait, first I need to fold yesterday’s laundry so the basket is available), unload dishwasher (but first I need to clear the counter so the plastic containers can fully dry), pay bills (but first I need to check the bank account), etc. etc. You can see the myriad of things and sub-things that need to happen, and you get paralyzed trying to figure out where to start.
That’s what my mom’s life is like. All the time. She lacks the ability to formulate a plan and execute it. All the countless options of life circle her head like a disorganized flock of birds. It must be maddening.
And this condition doesn’t just apply to paying bills and doing laundry. If she is sitting, she can’t get her act together to stand up. Either the message doesn’t get from her brain to her legs, or she gets distracted somewhere in the middle. Her brain gets exhausted trying to process all of the inputs, so it short-circuits – hence the sleeping.
Dr. Jaeckle gave us a few options for addressing the lack of initiative, so hopefully we will see some progress in that area soon.
Cross your fingers. For her sake and for mine.