Somebody That I Used to Know

Since Alana Concetta’s death, I’ve felt unable to write. Yet life reminds me in so many ways that she wanted me to write. She encouraged me to write about her battles with mental illness and how I coped. She thought I could be a voice of hope in a world where too many parents ignore their child’s mental illness because they think it’s a reflection on their parenting.

She wrote “The stigma of mental illness is alive and well.”

But I have resisted writing and this resistance has made my grief even worse. Writing about my feelings helps me acknowledge and process them. Keeping them inside has made me feel like the proverbial elephant sitting on my chest.

It’s hard to breathe.

I keep them inside for fear my feelings will be used against me and used against Alana. But as the months pass, I keep going back to the fact that I raised my children in a family of secrets, of things we didn’t say and things we didn’t acknowledge. I took Nora Ephron’s advice late in life to “be the heroine in your story, not the victim.”

I left my marriage and New Hampshire after my ex husband kicked the kitchen island down and pinned me to a wall and told me I should consider myself lucky he took his anger out on the kitchen island rather than my face.

I decided I no longer wanted to be a victim.

But still I find myself eating my feelings and swallowing my words. I fear what my divorce lawyer might say when we end up in court again because my ex intends to drag this out until there is nothing left to fight over. I worry that my words will be used against me when Alana’s boyfriend finally goes to trial for her death. I ache at the thought I will hurt my remaining daughter with my words.

But I can’t keep it inside any longer.

Depression is a medical disease with a high mortality rate. Being hospitalized for depression is like being in an Intensive care unit as the person’s life hangs in the balance. These are the words Alana Concetta‘s psychiatrist at the Brattleboro Retreat told me and listening to these words gave me two more years with her.

I wish I could have had another fifty.

Instead she is dead and I don’t know how and I have accepted I never will. Two medical examiners have weighed in, both admit she was beaten, strangled, and had a lethal dose of heroin in her system. One states she died of strangulation, the other a heroin overdose.

Where the heroin came from is anyone’s guess.

The day she died, I went to her boyfriend’s house, at his request,  to pick her up. She was face down on the floor, her dog, Baxter, next to her. She was the last person I performed CPR on.

The part I struggle with is that we were working so hard on her mental illness. Taking classes with NAMI (National Alliance for the Mentally Ill). Understanding that her unreliability was a symptom of her illness rather than a lack of consideration. Figuring out that her reluctance to make plans wasn’t flakiness but rather an acknowledgement on her part that sometimes she didn’t know from day to day whether she could get out of bed and participate.

I understand all of that now.

Since my daughter’s death, depression is my constant companion. Anxiety and stress visit on a regular basis. I never know when something will trigger me to tears or despair.

My mental health is dependent on medications, exercise, yoga, and keeping busy.

See, if you keep busy it is harder to dwell on the pain.

Since Alana’s death I feel her pain. I feel the strength it takes to get out of bed each day and go on with my life. I understand how hard life was for her.

She was so much stronger than any of us gave her credit for her.

And so I will try to write to honor her and her struggles. Try to feel my feelings and speak my words. Let people know that having a child with mental illness isn’t something to be covered up and ignored.

It’s the least I can do.

.

I Will Love You For A Thousand Years And A Thousand More

Always a smile.

I am a writer unable to write since the death of my daughter. As much as I try to force the words to come, they are so interlaced with pain and grief that they stick on my fingers and won’t pass through a keyboard. It’s hard to type with eyes overflowing with tears. I wanted to write about a subject Alana always felt I should write about to remember her on the day my world changed and she died, but I can’t. Instead I’ll remember her by the words she wrote, and I read, at her Celebration of Life. Someday I hope I can write again, but for now I rely on her, like I did so much when she was alive.

Alana loved our family and that love extended past our nuclear family and encompassed all of the Maynes clan. In describing our family relationships, she said, “We’re not like, Oh, they’re my cousins. We’re more like technically we’re cousins but we were all kind of raised together, took family vacations together, tortured and traumatized each other. Just consider my cousins my younger sisters and brothers, that’s easier. Plus when I have kids they’ll be aunts and uncles, not whatever you call cousins.”

And she loved her sister, Sarah.  When someone complimented a hat she wore and asked where she got it, she said “My sister actually made it…special..just for me..” and she wrote, “Sarah’s gifts are always so coveted that I find myself getting quite territorial over them. Get your own awesome sister, people. Mine’s taken.”

When we moved to South Carolina she wrote: “Things that excite me about moving: 1) Being able to hug my Sarah whenever I want. 2) Big whirlpool bath tub. 3) Finally having high ceilings so I can jump up and down on my bed!”

She said “the hardest part of moving isn’t the packing or the goodbyes or coordinating traveling with 4 pets. It’s resisting popping all of the bubble wrap.

She thought personal space was a term coined by people who hated cuddling and the high point of her day was “the moment you walk in the door and your dogs make you feel like a rock star just for coming home.”

She loved her dogs, Pippin Pablo Escabar and Baxter Rodriguez and children. “Have a new found respect for those of you with daughters. I just spent a half hour getting a ponytail to hold up with a tiara and another half hour explaining why even though the dog is technically large enough to be a horse, we cannot buy him a saddle and ride him. Even though, it is an awesome idea and difficult to argue with the logic.”

Alana didn’t feel the same way about some adults, though, as she did with children. “Some days you’ll move mountains and change the world, other days you’ll be thankful to not pop off at idiots. Little victories,” she wrote.

She was an avid observer of the world. One day she saw a mother tell her young daughter in the check-out line, “You’re driving me crazy. Do you see anyone else dancing in line?” The little girl turned around to see if anyone else was dancing and Alana busted out running man and started rapping, “It’s tricky.” She wrote, “Don’t let other people dictate when you dance, kids.”

And she tried to hard to look for the best in people. “Just when I’m ready to get frustrated the universe reminds me in a two minute walk you can change someone’s perspectives.”

She excelled at the sarcastic comeback.

“A date told her, ‘I underestimated you girl. I thought you’d be all make up and shoes. Shoot, she replied, You do know what happened to the last man that underestimated me. She paused, Neither do the police. Turning compliments into awkward silences for 25 years,” she wrote.

She had a more difficult time figuring out the southern mindset:

“At work someone asked, You got a husband?
Nope.
You got a gun?
Nope.
Well, maybe you’ll find one down here.
Oh yeah! There are gun shops EVERYWHERE! I’m just waiting on my bonus.
*awkward silence*
She meant a husband not a gun, huh? For the record, this is a totally acceptable conversation to have in the South.”

One day at a gas station she overheard two guys talking about her and described the conversation.That ain’t her real hair! Hey, girl, that your real hair?
Yep. Wanna give it a tug?
Shit, come grab this girl’s hair, B! You thought she was rocking a weave!
So glad I rocked the natural curls today.

And as much as she tried, Southern men puzzled her. “So far every conversation has consisted of the following: Can I see your tattoos? What does that one mean? It gets hot here in July and August, did you know that? Where’s your husband/boyfriend?
Yes, look. It gets hot everywhere in the summer. I’m one of those independent Yankee women you’re mom warned you about, run.
I’m struggling with all the small talk.”

She wrote, “I am practicing being kind over being right.”

And she practiced gratitude. For those of you who don’t know, she struggled with mental illness and that informed a lot of the last few years of our lives together. One day she wrote:

“Jehovah’s Witness came by this morning and instead of talking of the evils of pornography or drinking we spoke of mental illnesses. This amazing woman has an adult daughter with bipolar and we shared the heartache and struggles of loving someone who suffers daily from a disease many people don’t understand.
I am so blessed to have Renee Maynes as my mother and support system. She’s taught me that I’m deserving of the love, patience, and the understanding she’s given me.
There’s no magic wand or quick fix for mental illness. There’s a lot of tough work, trial and error, moments of doubt and sorrow, but it’s so worth it.
Today I’m grateful for those who’ve opened their hearts to me and supported me when I wasn’t capable of thinking clearly.
I’ll end with this: the stigma of mental illnesses is alive and well. A lot of people will judge or brush you off. Call you dramatic or tell you to suck it up. Love those people. Educate them. Be patient with them. An open dialogue is the only way to change hearts and minds.”

Alana worked hard to conquer her demons and be a better person.

“Today I’m grateful for mistakes. The big ones, the small ones, the ones that set into motion a series of events that ultimately make you stronger, wiser, and more compassionate. It’s easy to get caught up in judging yourself based on the mistakes you’ve made, but enlightenment comes from embracing them and seeing their importance.
Love to all my mistake makers today!”

And I don’t know if she actually wrote this, but it was in her notes and sums up how Alana lived.

“So, there were two choices: I could close myself off, resign myself to the fact that the world is an imperfect place and I could carry my hurt like a security blanket. Or, I could forgive myself. I could decide that loving people isn’t a weakness and trusting people isn’t a flaw. I could decide when others wrong me that’s a reflection on them, not me. That’s the beauty of it. Something that could have damaged me and made me bitter ended up opening my heart in ways I never knew. So, yes, I believe there’s always a choice.”

And when Alana was faced with the choice to be happy or be sad. Well, you know the one she made.

It’s only fitting I close with the toast she gave at her sister’s wedding. She was so happy to finally, as she put it, have the brother she always wanted in Dorri and so thrilled that her sister had found the man of her dreams. That night, under a warm SC sun, she stood in front of the crowd and said this:

“Here’s to life’s worries. Because in life you only have two things to worry about: Whether you’re well or sick. If you’re well you have nothing to worry about, but if you’re sick you only have two things to worry about: Whether you’re going to get better or die. If you’re going to get better you have nothing to worry about, but if you’re going to die you only have two things to worry about: Whether you’re going up or down. If you’re going up you have nothing to worry about, but if you’re going down at least all your friends will be waiting there for you!”

Until we meet again, I miss her today and ever day.

The Fairness of Life

Khaleesi of our dog pack

Khaleesi of our dog pack

When I was 16, my  mother told  me that life wasn’t fair. Until that point I’d understood the lessons learned growing up poor but, at some point at least, I thought the scales would balance out and occasionally the good things in life would come my way.

My mother made it clear that was not to be.

Still, I went on to live a good life with ups and downs, joys and sorrows, and though luck always went to someone else, I was okay with that.

Until my daughter’s death.

Words can’t contain the enormity of the hole left behind by a child’s death. As a writer, I’ve spent the days since October 20, 2014 searching for the ones that will comfort me late at night when I lie in bed trying to find sleep instead of heartache. I haven’t found them yet.

In my parent’s grief group I hear the stories of other mothers and fathers who, too, struggle to get through each day while mourning the loss of their child. We talk about the boxes of belongings we can’t bear to part with. The items of clothing and jewelry we wear in a vain attempt to keep our dead child close. And then, the ones who have survived this pain the longest tell us it will never go away, but it will change.

Some day, they say, the smiles will outnumber the tears.

While I wait for that change to come, I remind  myself of the 27 years I had with her. Her exuberance for life. Her love of her family. The way she adored her dogs. How her smile brightened a room. How her tears could break your heart.  Her persistence. Her love of chocolate and Starbucks and Sonic. Her ability to be both wise and foolish in the same instant. Her transition into a woman who had been disappointed and had her heart broken more than a few times, but kept trying.

In my mind, I knew the adult she would turn out to be. I’ll never see that played out.

Life is unfair like that.

But  I also had 27 years to love her and that was worth every bit of pain I’ve suffered since her death. Maybe life isn’t so unfair after all.

A Farewell to Dad

He wasn’t the best father, but he was my father.  When my sister called and asked me to accompany her and my brother to his deathbed, I went, even though I hadn’t spoken to my dad in 22 years. I did it, I thought, for my siblings. Turns out I really did it for me.

Our family picture after the death of my oldest brother, Rod.

Our family picture after the death of my oldest brother, Rod.

When we entered the room where my dad lay dying, he looked exactly like his father had 22 years before. His head, covered with silvery gray hair, was thrown back on the pillow, his mouth gaped open, and harsh, irregular breathing filled the room.  Though the nurses said he could hear us, he was unresponsive.

Unlike my grandfather, who died at home in his living room, my father began his death in an intensive medical care unit. Outside the unit a sign warned us to wear masks due to a flu outbreak.  He was on contact precautions so before we entered his room we added gowns and gloves to the masks that covered our faces. The constant beep of monitors and the intrusion of nurses to empty his catheter, titrate his medications, and turn and position him widened the space between us and him.

It was hard to break that space.

The death of a parent, even a parent that never embraced the traditional role and remained more of a Peter Pan man-child than a King Triton type of dad, is hard. When it’s a father you’ve only seen from a distance for the past 22 years, one you’ve ducked down grocery store aisles to avoid and maintained at least a one room separation from at family gatherings,  it’s a little harder.

In Al-Anon they say one can detach with love or detach with dynamite. I’d always seen my choice, dynamite, as irrevocable.  As I smoothed his hair, wrapped his hand around mine, and reminisced about our shared past, I realized I was wrong.

Even though it was too late to repair the damage done to our relationship, it wasn’t too late to remember the good times we once shared.

In the time we spent alone, I played him the songs we knew together and the ones I’d grown to love since then. Kenny Chesney sang “Boys of Summer” in the background and I talked about fall in New Hampshire, football games my older brother played in, and towns we had rivalries with. Willie Nelson crooned “Always on my Mind” while I told him about the toast  my youngest gave at her sister’s wedding and how it reminded me of him. Craig Morgan sang “Almost Home” as I retold stories of the friends and family that had predeceased him. Over and over, I told him it was okay to let go.

But, he hung on.

The palliative care nurse practitioner said he wouldn’t survive once they stopped the medications, but the medications stopped and he didn’t. Then they said the ambulance ride to the hospice might kill him. One last road trip, I murmured as the stretcher rolled into the Florida sun and bumped up into the ambulance, yet still he hung on.  We can keep him pain-free, they said at the hospice, but it might hasten his death. It doesn’t matter, we told them, yet in spite of the pain and anti anxiety medicine, he breathed on. We sat by his bedside and laughed, prayed, told stories, cried. We watched him take one agonizing breath after another and we held our breath each time they stopped. But he kept breathing.

It wasn’t until late the second night, with all of his children around his bed, that he opened his eyes, took one last breath, and died.

My clearest memory of childhood is my father’s lectures at the dinner table. He’d tell us look around this table, these are the only people you can trust. These are the only people who love you unconditionally and will love you even if you grow up to be a murderer, a rapist, or a thief. For years I joked about his low expectations for us instead of focusing on the other part, how much he loved us and how much he wanted us to love and look out for each other.

Perhaps he hung on to make sure we’d learned the lessons he’d taught us. Even me, the daughter who had ignored him for 22 years.

If we get to make our own heaven, I have no doubt he’s in a place where the Jameson flows freely and the stories and laughter never stop and he is surrounded by people who love him.

He wasn’t the best father, but he was my father, and, in the end, I loved him still.

Broken Hearts and Resilience

The recent death of George Jones had me listening to “He Stopped Loving Her Today” and thinking about people who can’t bounce back from a broken heart.  Those unhappy souls who, following the death of a loved one or a failed relationship, turn to unhealthy coping behaviors, such as alcohol or drug abuse and sometimes progress to suicide, intentional or not. “Whiskey Lullaby” by Brad Paisley tells the tale of a spurned lover, “We watched him drink his pain away a little at a time, but he never could get drunk enough to get her off his mind until the night he put that bottle to his head and pulled the trigger and finally drank away her memory.”  Country star Mindy McCready died of a self-inflicted gunshot wound on her front porch a month after the man she called her “soul mate” shot himself on the same porch. Love can kill.

English: Broken heart sewn back together

English: Broken heart sewn back together (Photo credit: Wikipedia). Some broken hearts can’t be fixed.

Most of us who suffer a broken heart go through a period of intense mourning, but few of us plunge into a devastating tailspin from which we can’t recover. Why? In psychological terms, it’s called resilience, and it refers to the quality that allows us to be knocked down by life but return, sometimes even stronger.  Though it’s romantic to think our broken heart is a reason to give up and sink into depression, it’s not a healthy coping response. Believing we can mend and learn from the experience is.

And maybe that’s the difference between those who survive a broken heart and those who don’t. The survivors mourn the loss, remember the good times, and know that at some point there will be better times.

Who Gets to Decide to Withhold CPR?

I’m not sure what I’d do if a patient collapsed in front of me and the administrator said, “No CPR. It’s our policy.” Since I’ve been a nurse, I’ve heard of slow codes, where the unspoken agreement is that if the person stops breathing the staff will purposely react as slowly as possible to give the person a chance to die, but I’ve never participated in one. The decision to either be resuscitated or be a DNR (do not resuscitate) is a personal one and the slow code takes that decision away from the individual. That goes against my philosophy of nursing.

English: CPR training

English: CPR training (Photo credit: Wikipedia)

Today’s news involves a nurse who did, in fact, stand by and refuse to do CPR when a patient went down. The facts seem simple. A woman collapsed in the dining room of an independent living facility. A nurse called 911 to report the incident. The 911 dispatcher asked the nurse to start CPR. The nurse refused, stating it was against company policy.

The 911 dispatcher didn’t give up. She asked the nurse to find someone who would start CPR, asking “Is there anybody that’s willing to help this lady and not let her die?” Again the nurse said no. The dispatcher continued to plead, as if the provision of CPR was the only surefire way to prevent this woman’s death.

Seven minutes 16 seconds later, emergency personnel arrived. The woman had no pulse and was not breathing. They started CPR.  The 87-year-old woman was declared dead at the hospital.

This has upset a lot of people. Upset some to the point that the police are trying to figure out if they can charge the nurse with a crime. The belief is that CPR would have saved this woman and the absence of CPR caused her death, and that’s not entirely correct.

According to Dr. Robert Shmerling in a post entitled, CPR: Less Effective Than You Might Think

“As opposed to many medical myths, researchers have reliable data concerning the success rates of CPR (without the use of automatic defibrillators) in a variety of settings:

  • 2% to 30% effectiveness when administered outside of the hospital
  • 6% to 15% for hospitalized patients
  • Less than 5% for elderly victims with multiple medical problems”

Another study that looked at out of hospital cardiac arrests found that successful resuscitation decreased with age. 40 and 50 year olds had a 10% chance of a successful resuscitation while patients over 80 only had a 3.3% survival rate.

No magic bullets here. There is no guarantee that CPR would have prevented this woman’s death. If she’d survived, there’s no guarantee of the quality of life she’d enjoy afterwards.

In this case, the independent living facility (not assisted living, not a nursing home, not a rehabilitation unit) maintains the residents are advised that in the event of a medical emergency staff members will call emergency services, but not provide CPR.  Employees are told the same thing.

The dead woman’s daughter said, “I don’t believe if CPR were done it would’ve helped or changed the result. This is not about my mother or me, this is about the policy of the facility, and we understood the policy, and I agree with what was done.”

Which brings me back to the original question. If the woman collapsed in front of me and, as a condition of living in the facility she’d agreed the staff wouldn’t perform CPR, would I have stood by and done nothing? With an underlying belief that the patient gets to make the decisions, I very well might have.