Do not resuscitate…

25 Jan

Wednesday December 25, 2013

For a highly organized person, I tend to lose things. My glasses get lost CONSTANTLY. Ask anyone.

After my Mom created her living trust, she wrote her will and named me as her healthcare agent in her Advance Healthcare Directive. All of this was notarized and placed in a binder with her name on the spine and the types of documents on the front cover. She gave me this binder back in 2007, since I was not just her healthcare agent, but her trustee and executor. When my husband and I split in 2011, he put it in a box among other documents for me. I then put the binder in my car, in the pocket behind the passenger seat, where it sat for two years. It was only last April that I finally found a home for this, and only because I gave my car to my Mom. It still amazes me that I could have lost this so easily.

It is now Wednesday morning and the skies are clear as we head back to the hospital. It’s Christmas day for the rest of the world, but for my siblings and me, this was just Wednesday.

I read the healthcare directive closely on the drive. I felt the weight of the importance of the job my mother entrusted to me push down on my chest with a heavy thud. I’d have to let my inner pit bull come out.

At least I wasn’t alone. Having Sandy and Greg there was truly a Godsend. My sister and I shared the enormous responsibility of removing our father’s life support and witnessing his death. We both knew where this outcome with Mom could lead and were prepared to ask the tough questions. For Greg, this was all too surreal. He was trying to understand it all, to make sense of it. We each supported the other.

The ICU scanned in the directive and we talked with the neurologist. Now, I’m not going to be all nice and fluffy about this doctor – she was so hyper-focused on the stroke that she couldn’t or wouldn’t see Mom as a whole person. Mom has over 20 years of high blood pressure, diabetes, high cholesterol, asthma, Crohn’s, and arthritis. In little over a week, she had also been diagnosed with atrial fibrillation and congestive heart failure. And on top of all that, she’s suffered multiple strokes. So when I ask the prognosis doctor, give me the full fucking picture. Don’t give me shit that “most families don’t ask this question so soon – most families want to see how the patient is going to recover”. Well, excuse me for not being most families here. When my Mom directed us to NOT PROLONG HER LIFE, I need to know at what point we are forced to make that decision.

Here’s the nasty bits people… What exactly does NOT PROLONG LIFE mean to you? If you have a stroke, are able to communicate, but cannot feed yourself, do you want to NOT prolong life? If you can’t communicate, can’t understand, but can feed yourself? What exactly are the parameters?

We felt we knew Mom’s parameters – a partial existence would not be okay with her. But the definition of “partial” had me wanting to make a pros and cons list. Second to dying from a stroke, her biggest fear was being left in a hallway in a nursing home. So yeah, we had some tough decisions to think through. And screw the politically sensitive people. I’ll ask the hard questions even if you don’t want to answer them. That’s my job.

I wanted an MRI that day since that test would tell us more about the extent of damage to the brain. The neurologist and the attending doctor recommended we wait a day or two to see if she has any clinical improvement, that we could be misled initially by the results. So I agreed, even though I worried about her being in this state, unable to recover fully.

There wouldn’t be any improvement. She continued to sleep, rousing only when we’d gently shake her, but her focus was minimal. She looked like she was in pain; her face would screw up and she’d wince. By late afternoon, she had lost the use of the right side of her body. We knew what was happening. What was going to happen. We didn’t talk about it. We just knew. Quiet looks, hugs, lots of crying.

With a heavy heart and a profound emptiness, I signed the DNR (do not resuscitate).

My brother’s husband Rod arrived that afternoon and helped Greg keep his focus. The reality of what was happening was way too much for any of us, and for Greg, a deeply empathetic soul, with his mother dying, this was just too fucking hard.

Throughout the day, in brief moments of wakefulness, Mom’s only response to every question was a rapid nod to her head.

“Mom, are you in pain?”

Nod. Nod. Nod.

“Do you want the lights off?”

Nod. Nod. Nod.

“Mom, do you want this to end?” – motioning to the machines and around the room.

Nod. Nod. Nod.

I crumpled in defeat. I’d been very strong inside her room, but to this I just burst into deep cries. My sister had to remind me that Mom either didn’t know what we were saying or was unable to give us the proper response since the part of her brain controlling motor function was damaged.

I stood again at Mom’s side. “Do you want some lima beans sweetheart?”

Nod. Nod. Nod.

I rolled my eyes and calmed down. A little. She hated lima beans.

Thursday December 26, 2013

By Thursday, she stopped responding to us altogether. No more squeezing our hand with her left one. No more ability to rouse her from sleep. That’s when I insisted we get the MRI. We needed to know the extent of the damage. That evening, our worst fears came true. Mom had developed a bleed in her brain. The damage would be irreversible.

We had no choice any more. The decision was now out of our hands. The blood thinner that was supposed to prevent the clots had the unfortunate and all too morbid consequence of causing blood to pool in her cerebellum.

Within minutes of stopping the Heparin line, she went into respiratory arrest. I was just outside her room, talking with a family member, when I was called back into the room urgently. In three strides, I was back in the room, just as the nurses asked everyone to leave. They had called Code.

I was at my Mom’s side within seconds witnessing her violent reaction to the respiratory arrest. Her body jerked upward on the bed and she tried valiantly to breathe. The nurse’s called out for CPR. I shouted out “DNR.”

The nurse’s in the ICU department change daily. These ones didn’t know us – a quick check in her chart confirmed the DNR flag.

Mom died that night. She took a final pained breath and then a final exhale. And for approximately 40 seconds, we thought she was dead – until she took another pained and dramatic breath and her heart started beating slowly.

It was too much to bear witness to. We wouldn’t leave the ICU that night. Sandy and I stayed bedside. Greg and his husband Rod tried to get rest on the main surgery couches. Rock rested in the ICU waiting room.

We started her Dilaudid (an alternative to Morphine) right then. She was no longer on any life support. No IV lines keeping her hydrated. No medications for her many conditions. It was now a matter of time.

Our biggest fear now was that Mom would lie helpless for days or even weeks, her body struggling, while her heart and lungs slowly failed her.

Wine tasting - Nov 2011

Wine tasting – Nov 2011


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