Wednesday, July 27, 2011

Still Missing You, Mom... One Decade Later


dec·ade
[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.

Copyright © by Elizabeth O'Neal

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16 comments:

Lisa Wallen Logsdon said...

This was hard for me to read because I lost my mom just a little over a year ago. So, I guess it will still be hard in ten!

I thank God that my mother got to see not only her grandchildren but her two great grandchildren. My dad didn't get to see his great grandchildren and my daughter laments about that often!

Lovely post about your mom!

Gini said...

My thoughts turn to you today, Elizabeth and how well I know that missing your mom inside our heart. It can be one year, or a decade and we will still miss our mom's as if it were yesterday. Prayers and hugs to you and your little one, Elizabeth.

Carol said...

Very touching, thank you for sharing her and your experience and your pain.

Prayers for you that some day the pain will not be so intense and that you yourself will find a bit of peace.

Kate Foote said...

Dear Elizabeth,

This is more than a beautiful memorial to your mother, it is a testament to the love and devotion of her daughter. I, too, know what it is to sit, alone, in a hospital room and watch helplessly as my mother's body released itself, organ by organ, from it's fragile hold on life. It is so painful, and yet it is a privilege as well.

It doesn't matter that her physical self appeared not to be functioning, her spirit and her love for you was there, and she knew that you would not allow her to die alone.

I think that everyone, when that time comes, will need another human being to help them as they die. I so hope that one of my children will be with me.

My mother has been gone for over two decades now - but there are times, moments of clarity, when I can speak to her and truly feel that she hears. In a few days it will have been two years since my sister, Mary, and my dearest friend ever, suddenly died. A sudden, unexpected death is a shock to your whole body and your whole psyche. I am sixty-five years old, Mary was a few days shy of seventy; yet as we go about living we tend to push aside the reality that the older we are, the nearer death is. Perhaps that is why I have been so gut-shot over Mary's death.

But death is inevitable and mourning and grief will naturally follow. It hurts, yes, but how tragic it would be if we lost a mother, or a sister, and felt no pain.

And we go on...

Blessings,
Kate

moultriecreek said...

Last month was the 30th anniversary of my mom's death and I am now the age she was when she was diagnosed with cervical cancer. I still find myself reaching for the phone to pass on some tidbit I think she would find amusing. Your article touched that empty spot and reminded me once again that I'm not the only one who has gone through this.

Susan Clark (Nolichucky Roots) said...

So many of us share your pain, Elizabeth. Even after 12 years there are days I scream (usually inside, but every once in a while aloud) my anger and loss. I suspect those feelings will never completely vanish, especially when it seems clear that human factors played a part.

I knew nothing of ARDS. Thank you for sharing your story and the information.

Debi Austen said...

What a beautiful, beautiful tribute to your mother. My heart aches for you! Thank you for sharing your story with us.

Family Curator said...

Elizabeth, Thank you for the reminder that we won't forget the people we love, even if it hurts like nothing else we have ever known. - denise

Kathy Reed said...

I was so touched by this post and could identify with many parts of it. I also love that you got comments from some of the bloggers I've grown to care about. Take care.

Elizabeth O'Neal said...

Many, many thanks to all of you for your very sweet and comforting comments. I think I need to sit with them for a few more days, as they feel kind of like a big group hug. I didn't expect to be hit so hard emotionally yesterday, but I was, and the life was mostly sucked out of me by the end of the day. We all know what a toll crying takes on a body.

A few months after my mother died, I found a support group online (in Yahoo, I think) for daughters who had lost their mothers. I don't remember the official group name, but we occasionally called ourselves "The Dead Moms Club. Strangely, sometimes tasteless sarcasm helps with the pain. Anyway, from your comments, it seems that this club is still alive and well out there, despite not being organized anymore.

I was thinking of @Gini and @Denise and @Elyse yesterday as I wrote this, almost hoping you all wouldn't see it because I didn't want to upset you. I'm sorry to have to welcome you as new initiates to "The Club." As the long-time members have noted, life goes on, but the sadness of missing a mother never truly goes away.

I wish you all peace and comforting thoughts, as you have given them to me. {{{Group hug!}}}

Debbie Blanton McCoy said...

Wow, I'm sitting here with tears in my eyes. What a beautiful tribute to your mother. My mother passed away 20 years ago this month with cancer. The hole in my heart is still there.

Anonymous said...

So touching! 23 years ago my father took his last earthly breath. A lot of similar things took place in his death as well. I also requested an autopsy---and similar results.

Becky said...

I have this huge lump in my throat and tears in my eyes as I have just finished reading your post. Having just lost my mother in February - and from what I believe to be diagnosis of something minor that wasn't - and the resulting treatment that killed her - and watching her die a little at a time while spending two weeks in the hospital with her every day - I feel your pain. It hurts so bad. And I wonder if the painful memories will ever go away...

Cindy Bergeron Scherwinski said...

Thank you for allowing me to share this place in your heart: your pain, the love and the deep sense of loss is so personal that I cannot help but feel privileged to have you share this with the world.

I know that someday, I will begin my life's journey without my mother. I will count on my friends who have gone before me to help me find my way.

Please throw a second stone on behalf of your friends who love you.

Linda Gartz said...

I'm coming a few weeks late to this post, Elisabeth, but I'm coming to it on the 15th anniversary of my mom's death -- from peritoneal, sometimes thought of as "extra ovarian-ovarian" cancer -- meaning ovarian cancer outside the ovaries. My mom was almost 78. I thought THAT was too young. You lost your way too early. She died in my home under hospice and the care of my brother and me. She was misdiagnosed for months! Very hard. Your poignant recounting of what happened to your mom struck a nerve. We hear all the time about the "frivolous lawsuits" (a phrase, btw, created by PR agencies to denigrate anyone who seeks restitution when doctors and hospitals screw up), but how many millions of families never can even fight against medical malpractice. It costs a fortune to bring a lawsuit, and unless you're pretty sure to win, no PI attorney wants it. Thousands of wonderful doctors out there, but mistakes are made and those who make them should be punished. The losses cause such anguish. Thank you for sharing this painful story and your love for your mom.

The Path Traveled said...

When I read this post today so many things flashed back in my mind. I sat with my mother as she drew her last breath, 13 years ago. It still seems like yesterday and the hole in my heart will never close. She died from IPF... Idiopathic PULMONARY fibrosis. Her doctors told us those words only eight months before she died. Without the internet I would have never known there were thousands of people with IPF. I am sorry for your loss and wish I had words to tell you different. The only thing I can tell you is that we have to go one with our life, its what they would want.