Rx Revision – STAT!

The ornery oncologist dryly reported that Mom’s biopsies showed her to have Stage 4 bladder cancer  and a touch of lymphoma.

Months, not years, he stated, and then, for good measure, added  … I’ll change the rehab orders to be for hospice.

Back at the nursing home, things shifted in subtle but serious ways… I was told Mom would no longer be receiving PT or other rehab measures because, um…well… She won’t be getting any better. Our goal now is for comfort, care and pain management.

But she’s not really in any pain, I said… I don’t think she needs pain management.

This is where my own humble opinion differed distinctly from the domineering doctor at the nursing home. Apparently, Mom told him earlier that she was in pain. But then again, Mom was also saying things about her dead brother, indicating there may have been a few marbles rolling off her table.  

At the time, I thought maybe Mom had turned on the familiar spigot of response to the doctor’s simple query – Are you in any pain?... It was a scene I’d witnessed many times; eager engagement with an active listener about her extensive medical history.   

But the doctor wasn’t really listening. He was telling Mom what he was going to do to/for her to manage her (non-existent) pain. After all, he aggressively explained, he was not only the Medical Director of this facility, but also a Pain Management Expert, as well as the Head of a private hospice company that he was passively promoting with the well labeled badge dangling from his neck. He was clearly a busy guy, but not too busy to prescribe a prescription for his “preferred” pain pill, methadone.

WAIT!! Isn’t that heroin?! She doesn’t have THAT kind of pain!, I thought to myself. But hey, he’s a big mucky-muck in the geriatric arena and pain management is his self-proclaimed jam… Surely he knows what he’s doing (Even if I don’t like his snarky manner).

Later, a nurse entered with Mom’s first dose of heroin methadone. She’d been sleeping for a while, so the nurse gave a quick yell, Nancy! Nancy! Time for you pill!

I don’t think she needs that, I offered (and wondered why she was yelling at my mother),

It’s ok, said the nurse, we give the lowest dose possible… see how small the pill is?

Granted, the pill was small, but I don’t think size matters when it comes to the power of a prescription pill.

So again I stated -I don’t think she needs that.

Well, this is what the doctor prescribed. You’ll have to speak with him to change the order.

Mom opened her eyes and quietly confessed that she was in fact experiencing some pain. Surrendering to the medical machine, I decided to let go and let God handle this one.

At lunch the next day, I was alarmed that Mom was still sleeping, but I was assured by the nurse that it would take some time for her to “adjust” to the methadone… that it’s “normal” for her to still be “resting”…

At dinner the following day, Mom’s plate was sitting in front of her untouched. I started with a big Hello Nancy Sunshine! and got nothing… I moved into a louder version of the same… nothing…. I gently shook her hand… nothing… I turned her head toward me and spoke loudly – Mom, can you hear me?

A barely audible and almost imperceptible, Yeah….

Who am I Mom?

Emily…

That’s right… Are you in pain Mom?... .

Nothing. She was out again. Completely out…  And her bed was wet.

Where the fuck is the nurse?! I screamed (in my head).

I was confounded by my first interaction with my doped up mother. I’d seen her on multiple meds in the hospital over the years, but never like this; in a matter of days, she’d seemingly gone from being a cancer patient who could talk and communicate, to being a cancer patient in the “active phase” of dying.

Once, on TV, I’d seen a show that detailed how some patients in surgery appear to be “under”, when in fact, they’re awake and fully aware of every cut the surgeon makes, proven by their recollections of  doctor conversations and music playing during the operation. A terrifying thought, I was sure this was happening to Mom on methadone; I feared she was in there, begging me to make them stop giving her this medicine that was robbing her of her last few days… days that she wanted to spend as conscious (but pain free) as possible…

My inner advocacy-alarm went off. 

On Sunday night, and with the weekend staff on duty, I found Mom lying unconscious in her bed, in a johnny and a “diaper”, with a full plate of dinner in front of her (none of which she could eat), and wet sheets. Again.

The hospice company triage nurse came to the nursing home within the hour and took her vitals. He explained that she was not yet “transitioning” (the technical term for active dying), but was, in fact, over medicated.

Can we switch her to something like OxyContin? I asked. (People like that stuff, don’t they?)

By Monday morning, the new med orders were in place – Super Tylenol 3x per day, and Oxcy as needed. I entered her room and found Mom sitting in a chair, cognizant of who I was, attempting to eat breakfast by herself, and able to engage in basic conversation. She was aware that she’d been drugged unconscious and said that she was only in pain if she moved.  

This was more like it…

By dinnertime, she was happily talking to dead people again, slightly mumbling, like a tipsy drunk. The nurse confirmed Mom had a “small dose” of Oxcy earlier, and I was satisfied that she was pain free. I was relieved, feeling she was back and thankful that I had trusted my gut.

There’s not a lot of fixing a fixer can do for a loved one in hospice, but being a watch dog over her meds proved to be one place I could insert myself effectively. I trusted my instinct that there’s a difference between being comatose, being semi-conscious, and being groggily awake. I knew that the comatose phase would come soon enough – and I would respect it for what it was when it arrived naturally – but there was no reason for Mom to be comatose when there was still time for her to actively engage with friends and family before dying.

In her remaining few weeks on earth, Mom was awake enough to say good bye to virtually everyone she’s ever loved. And, virtually pain free.