Key Grip

I feel like I have hold of a rope.  It is a slippery rope that no matter how firm my grip or strong my pull it keeps slipping between my tightly clenched hands.  Maybe a knot would help me hold, but I can’t loosen my grip enough to tie one for fear the rope will pick up deadly, unstoppable speed.  It may be that the rope would move at its own pace, like the trajectory of the waning moon, in spite of my gripping, and that my perception of slowing it is an illusion.  Still, love compels me to hold tight.

This evening Sherry held a spoonful of cranberry sauce in her right hand, her arm crossing over her body so that the cranberries were precariously hovering in space well to the left of her plate and of her placemat. 
“Put this where it goes.” she directed me.

Not sure what she meant, I asked, “Where do you want the cranberry sauce to go?”

“Where it goes!” she insisted.

“In your mouth?” I persisted.

She nodded.  I moved around to her right side from the chair where I was sitting to her left, took the spoon from her hand and put it in her mouth.

“I just don’t know what to do.” she confessed after swallowing the spoonful.  

I had cut up pieces of turkey and had small broccoli flowers on her plate.  I pointed out to her that she could eat them with her fingers.  She did that, dipping pieces of turkey in the small bowl of cranberry sauce on her plate.  When she was ready for her soup, I pointed to the soup spoon and she was able to pick it up and use it to feed herself some of the soup.  The tide of confusion appeared to ebb.

Sherry’s last radiation treatment was on Friday, November 27^th, as was her last round of Temador, the chemo drug she has been taking for over a month.  Her course of antibiotics for the diverticulitis was completed last night, and her dose of flagyl, again for the diverticulitis, was completed tonight.  She is being weaned from the steroids, down to 6 mg. a day from 8 mg.  This will continue for 6 days when she will reduce her doses to 4 mg. a day.  She will resume Avastin IV treatments on Wednesday, December 2^nd.    She will have a MRI in about 4 weeks, her first since diagnosis on September 15th.   Our oncologist cautioned us about a phenomenon he called pseudo-progression, which is to say that the first post radiation/chemo MRI can show that the glioblastoma tumors have grown when in fact bleeding around the tumors is causing the false reading.    It won’t be until subsequent MRIs are completed when a line can be drawn to determine rate of progression.

Who knows?  I do know that my daily assessment is functional and anecdotal.  While this may fly in the face of the empirical, it does frighten me to see Sherry’s increasing disorientation and her increasing inability to remember how to perform basic tasks.  The horror for Sherry is that she is fully aware of what she cannot do, and is deeply perplexed and frustrated by the confusion she feels.

I do know that I need to keep Sherry’s medications straight, and to monitor closely for a fever and high pulse rate in case the diverticulitis or some other infection should flare up.  Plus, I need to engage Sherry in activities she can do without confusion or frustration.  We can share poems, listen to tapes, watch DVDs, recall and share life stories, and I can learn from her vast store of literary and liturgical knowledge.  

I also know that I need to be where I am.  I am fully aware that hazards can await the caregiver.  I am also aware that should these turn out to be Sherry’s last days—and I am visualizing, hoping for the contrary—I want to be with her and do all that I can to improve the quality of those days.  This is not a burden, it is an honor.  Yup, I get tired, and yes I am not the prefect caregiver: at times being less patient than my better self would feign to be.  Fortunately, communication between us is clean and clear; we can quickly find higher ground.

Sherry trusts me completely.  She feels safe with me.  That is sacred ground, and I am learning of the unfathomable depth of love.