As my sister and I sat in my mom’s room today at the Hospice Care Center, it occurred to me that we were waiting on death. And what’s even worse is that in our case, death is late.
You see, I had a conversation with the hospice social worker yesterday that’s been turning over in my mind ever since. She reassured me that whatever emotions my sister and I are experiencing right now, they had to be considered perfectly normal because the situation we’re currently in is a relatively new problem facing modern medicine. Not enough people have gone through what we’re experiencing for anyone to have been able to form a professional opinion on what exactly constitutes a “normal” reaction.
Back on October of 2013 (October 18th, to be exact) I took my mom to the emergency room with severe fatigue, nausea/vomiting, and cold sweats. Most people wouldn’t rush their mother to the emergency room with these symptoms but it’s a little different for my mom. Those are her classic symptoms of a heart attack. We know this because she’s had more than a few.
My mom is the proud owner of numerous stents and a double bypass (they wanted to do more than just two bypasses but there were so many stents already in place that it wasn’t possible). She’s also had several strokes and a bout with pancreatitis so severe that she was in renal failure. She also has severe degenerative disc disease with spinal cord encroachment at three levels and she’s a type II diabetic.
On October 20th we met a cardiac electrophysiologist that I’ll call Dr. X. He was pompous and condescending and told us, in very matter-of-fact terms, exactly what needed to be done to save our mother. Two separate ablation procedures done several weeks apart because she was too weak to tolerate both sides of the heart being done close together, and a pacemaker with defibrillator placed in between the two ablation procedures. We were given the regular risks of surgery, infection, risks of anesthesia and all that. We asked about the large bulge on the right side of her abdomen but was told it was nothing more than belly fat.
She nearly died during the first ablation procedure. But we were told she’d get stronger once the ablation procedure began to eliminate the atrial fibrillation. So we soldiered on.
She survived the pacemaker/defibrillator procedure only to have a wire pull loose so that she had to be taken back into surgery the next day. She barely made it through that procedure.
From there she was sent to inpatient physical rehabilitation where she continued to slowly decline for the next 41 days. A chest x-ray revealed a collapsed lung from all the fluid in her pleural cavity. So back to the hospital we went (but to a different hospital this time – we were learning by now).
The next doctor we met we’ll call Dr. S. He was different. He wanted to meet with us face to face. He was direct, to the point, and told us our mother had a severe pleural effusion and abdominal ascites (a build up of fluid in the abdominal cavity). The top three candidates that could cause this were cancer, liver failure, and heart failure. But the heart had already been addressed. He told us they’d continue to run tests and he called in a lung specialist to drain the fluid from around her lung to see if they could find cancer cells. But we were told that whatever it was, it had to be in an advanced stage to cause that kind of fluid accumulation.
Later we’d make morbid jokes about what an enormous understatement that was.
They found no cancer in the fluid they drained.
From there we were moved to their sister hospital. Numerous tests resumed until she finally underwent exploratory surgery looking for cancer somewhere, anywhere, in the abdominal cavity.
They found none.
Then, in early February (nearly four months after that first emergency room visit), someone said, “We need to look at the heart again.” The heart everyone thought had been taken care of by the pompous Dr. X.
What they found was an ejection fraction of 30% combined with pulmonary hypertension combined with constrictive pericarditis combined with severe congestive heart failure and mind-boggling atrial fibrillation. And based on the amount of fluid that was in her abdomen and around her lung, these conditions had been there for a long while. Long before we noticed the large bulge in my mother’s abdomen that was dismissed as abdominal fat. Oh yes, these conditions were present well before her emergency room visit in October.
What they found was that our mother was dying – that she had been dying for months. That a pacemaker and a defibrillator was put in her chest with no mention to us about the severity of her heart disease and that her quality of life, if there was any quality of life to be had, would be severely limited. That in a few months time my mother would probably need 24 hour care and assistance with all basic activities of daily living.
No choices, no options, were given to us. The option to die a natural death was never even mentioned.
We cried and bemoaned the injustice of it all. She went through a couple more weeks of inpatient physical therapy and was released to an assisted living facility where she would continue to receive outpatient physical therapy. But that never happened. My mother’s condition was so severe that a mere four days after we moved her into assisted living, I was making an appointment to meet with a hospice nurse.
Yep, it was that fast.
We signed forms and talked about the possible outcomes. My mother shocked me by asking for a DNR (a Do Not Resuscitate order). She was a geriatric nurse for over 30 years, so she knew exactly what she was asking for. And I didn’t protest the DNR. But when she started talking about turning off her defibrillator, I threw on the brakes. I said, “Mom, you really need to think about this. A DNR is one thing, turning off that machine is another. This isn’t a decision you make on the spur of the moment.” She agreed to wait.
I got a call at 4:28 just two mornings later. My mother’s defibrillator had fired between 38 and 40 times and was continuing to fire. It fired 47 times before it was over.
Some say getting hit by an internal defibrillator is a lot like being kicked in the chest by a mule. Others say it’s like getting hit in the chest by a baseball bat.
My mom said it was like both – 47 times in a row. I didn’t try to talk her out of turning it off a second time.
The medications to keep my mom’s pain and anxiety under control, combined with the process of death itself, have her completely confused. When she is awake she’s begging to go home, her chin quivers, and her eyes fill with tears. But her condition is so severe and her medications so powerful it’s just not something we could manage at home. Some folks with hospice say she has a few days, others a couple of weeks, others say it could be months – the pacemaker is still working, after all. Most of the time she knows who we are, though we see her searching our faces to be sure more often than not.
And so I’ll get up tomorrow morning and take my daughter to school. Somewhere in the morning my sister and I will text each other to see who’s going to pick up breakfast before we meet each other back at the Hospice Center.
And we’ll sit and wait again tomorrow. I started this post thinking we were spending our days waiting for the Angel of Death, but I think I was wrong. We’re waiting on an Angel of Mercy.