[dek-eyd; Brit. also duh-keyd] – noun
1. a period of ten years: the three decades from 1776 to 1806.
2. a period of ten years beginning with a year whose last digit is zero: the decade of the 1980s.
3. a group, set, or series of ten.
One decade ago today, I lost my mother.
Some days, it seems like only yesterday. I can vividly remember sitting alone in the wee hours of the morning in the corner of her ICU room, staring blankly at the monitors over her head as I had done all day every day for 5 weeks. I was like one of the fixtures in her room. I’d forgotten what it was like to go home and shower. Or sleep. The nurses went about their business as if I was invisible.
That night, the monitors showed that Mom’s oxygen saturation was much too low, her heart was beating too slowly, her body temperature was way below normal. Even her blood pressure was eerily low, which was odd for someone who had battled malignant hypertension most of her life. I was afraid to touch her or go near her, so I just sat in the corner, waiting.
All the signs of a body letting go of life were there, but I still clung to hope.
As the hours passed, I watched as the numbers on the monitor dropped lower and lower. An alarm sounded. A voice on the hospital intercom called “Code Blue, ICU,” and doctors and nurses rushed into the room. I was quickly ushered out of the ICU, and sat on a gurney next to the locked door waiting for the outcome.
As Mom’s only child, I had no siblings to call on for support. Instead, I called a dear friend who came and sat on the gurney with me to await the inevitable. Your true friends are the ones who will come to the hospital at all hours of the morning and wait with you while your mother dies.
This wasn’t the first time Mom had coded. But I was pretty sure it would be the last. She was in terrible shape. After 5 weeks of decline due to Acute Respiratory Distress Syndrome (ARDS), something from which very few people recover, it was unlikely that she would survive much longer… despite the bizarre optimism of the doctors.
Mom had entered the hospital at the end of June for what was supposed to be a routine back surgery. This was the surgery that would “cure” her spinal problems and allow her to live a normal life.
Unfortunately, this would not be the case. The surgery was a bust and required a second surgery in less than a week to “fix” what had been done the first time. Two surgeries in a week was not a good thing for a 60 year-old woman who had smoked most of her life (and had undiagnosed Chronic Obstructive Pulmonary Disease). She developed pneumonia within two days of the 2nd surgery, and was moved to ICU. She was intubated and put in a drug-induced coma. A day or so later, I received the diagnosis of ARDS.
“I’m sorry… what? She has what?”
I had never heard of ARDS, but this strange, new doctor rolled it off his tongue like he said it everyday.
“40% chance of survial? You’ve got to be joking. She was fine 3 days ago.”
He wasn’t joking.
Thanks to my uncle in Hawaii and the internet, I became educated about ARDS quickly. What the doctor had neglected to tell me was that very few hospitals – or doctors – in the country at that time were capable of treating ARDS patients, and this wasn’t one of them.
But even if she had been in one of those rare, special hospitals that could treat such acute patients, her chances of survival would still have been slim. ARDS is a killer. You can’t breathe; your lungs are covered with so much fiber that even a ventilator can’t always push air into them. Sepsis fills your blood with bacteria. Your organs fail, one after the next. ARDS doesn’t discriminate between young or old, healthy or sickly… it hits fast and hard and takes no prisoners. It decimates lives; even those who do recover are never, ever the same. And those who helplessly watch their loved ones suffer with ARDS often need treatment themselves, afterwards.
It is an understatement to say that ARDS is an ugly way to die.
(The exact cause of ARDS is not known, but it is thought to be the result of a direct physical or toxic injury to the lungs.)
Despite the constant whizzing and whirring of the ventilator, my mother had suffered severe hypoxia (very low oxygen saturation) several times during her battle with ARDS. A brain scan a few days earlier revealed little, if any, activity, and the coma was no longer drug-induced. Her lifeless eyes were taped shut so they would not dry out. I knew my mother wanted to live… but not like this. She once told me that if she was ever diagnosed with Alzheimer’s Disease, she would kill herself. “No, you won’t,” I joked. “You won’t remember to do it.” It was funny at the time.
Mom had a living will, but not a DNR. I prayed that I wouldn’t be the one to decide if she should live or die. Thankfully, I was not.
The nurse opened the locked ICU door and gave me the bad news. My friend and I walked into her room to say goodbye. I had already said goodbye to her so many times during the past 5 weeks, but that was just the paranoia of leaving the room of someone who might die at any moment. This time would be the last.
Mom’s many tubes and wires had been disconnected from the machines, but had to remain in her body because “the coroner might want to investigate.” Coroners typically investigate cases of possible hospital negligence.
Mom looked oddly peaceful now. We guessed it was because she had finally stopped fighting. She was done suffering.
The rest is a blur. I do remember being asked if I wanted an autopsy, and I believe I said something like “Absolutely.” There might have been expletives, but I was probably too exhausted to say them out loud.
I didn’t want to cause Mom any more suffering, but I needed to know what the hell had happened to her.
The hospital did indeed pay for an autopsy, the results of which I received several weeks later. Many things had been misdiagnosed, including a hiatal hernia for which she had been receiving treatment, but which was actually a very severe case of clogged arteries in her heart. As the autopsy doctor put it, “She was a heart attack waiting to happen.” And not a good candidate for surgery.
On Mom’s death certificate, the official causes of death are listed as cardiac arrest (immediate cause), due to acidosis, due to possible aspiration pneumonia, due to nosocomial pneumonia. Nowhere on the death certificate is ARDS mentioned.
The coroner chose not to investigate.
On her 60th birthday, my mother said – very matter-of-factly – that she was going to die that year. Was it a self-fulfilling prophecy? Maybe, but I don’t think so.
I will only say that to this day, I firmly believe it was medical negligence that killed my mother.
I also find it fitting that the hospital where she died is now closed and scheduled for demolition. I hope to be there to take pictures and throw the first rock.
Some days, it seems like only yesterday. But other days, it feels like so much time has passed. So many things have happened – changed – in the decade since she’s been gone. The nightmare of her passing feels almost like a lifetime ago.
My mother never got to meet my husband, whom I met 8 months after she died. She would have liked him. He’s oddly like her in so many ways.
She never got to meet her only grandchild. She wanted a granddaughter so much. My daughter and I talk about “Grandma Judy, up in heaven,” but of course, that doesn’t mean much to a 5 year-old. What she does know is that Mommy cries sometimes, and she does all that a little girl can do: offers hugs and kisses “to make Mommy feel better.”
I suppose it’s somewhat comforting to imagine that Mom can still see us from wherever she is now, although I don’t really think so. After she died, people would ask me, “Can you feel your mother with you now?” No. I don’t. Not once. Hopefully that’s a good thing, and she has moved on to a better place… a place where backs don’t hurt and you can always breathe easy. I do hope to see her again, someday.
Mom and I were very close, and the loss of her has left a hole in my life. I’ve tried for ten years to fill it with other things, other people. But some days – like today – I still feel it there: a big, gaping void where my heart hurts.
I hope you are resting in peace, Mom. I still miss you. Time has eased the pain, but it still hurts like hell sometimes. Perhaps in another decade…
If you know someone who has been diagnosed with ARDS, you can find support at the ARDS Support Center and The ARDS Foundation. I did. The treatment of ARDS has come a long way in the past 10 years, but it still has a long way to go.
Definition of the word “decade” from Dictionary.com.