The Weight.

My blog has been quiet lately. I haven’t found myself in the correct headspace to actually write. I would start a post and then just abandon it because the words sounded choppy and there was no connection to it. My innermost voices have been a symphony of different emotions, one jockeying harder than the others to be heard, only to leave me unable to hear myself over the chaos. I shouldn’t write if I can’t clearly have a finely tuned point, right?

Absolutely wrong. It dawned on me tonight, somewhere between making the Dutch Apple pie and the pumpkin loaf, that this is the most spot on moment to get all the things churning in my brain out. I cannot be alone in feeling that I am.

Being a healthcare worker is hard, on its best day. Even during the moments that one feels accomplished, there is a stream of sadness that constantly ebbs along. Did you lose a patient today? Did you feel the pain of someone’s terminal diagnosis? Did you tell a patient you would see them tomorrow knowing full well you wouldn’t? It comes with the gig. We knew that for the Everest like highs, there would be dark bitter lows. But, nothing could have ever prepared us for all of this.

Covid.

Take a look at your fellow nurses and doctors.. do they seem a little more tired to you? Do they seem more stoic? Our smiles are still there but, perhaps the twinkle in our eyes has faded a bit. We are exhausted. In every way exhaustion could manifest itself, we are.

Each day brings a tidal wave of emotions from tears of joy to tears of sadness. Anger that this is occurring to confusion at those that don’t want to recognize the ferocity and the magnitude of what’s happening. It’s so simple. Wear a mask. Stay home. Wash your hands. But, for us, it’s not simple. A special mask, face shield, gown, gloves and then, to top off all of that call mom we’re still coming home peeling off our clotheswant to recognize the ferocity and the magnitude of what’s happening. It’s so simple. Wear a mask. Stay home. Wash your hands. But, for us, it’s not simple. A special mask, face shield, gown, gloves and then, to top off all of that call mom we’re still coming home peeling off our clothes i’m praying that nothing has leached on anywhere so that we could do something that’s out of our worst nightmares. Bringing it home to the ones that we love. It just becomes this a vicious cycle of questioning and doubting and worrying and praying.

But, then I see those that think this is all a joke. Those that won’t let a pandemic dampen their partying. A mask, to them, has become the literal hill they choose to die on. I am afraid to go home to my family and they gather in the hopes of proving everyone wrong. That’s disrespectful to their families. That’s a slap in the face to those of us that work so hard to heal and keep safe.

Now, I have to admit, as a hospice nurse, I’ve taken some pretty big hits lately. There have been been some pretty significant deaths. People I’ve had for a very long time and they’ve taken a spot in my heart. People who I fought to keep on hospice because I knew it was the best thing for them. People whose death makes me stop and reflect on my own life and the things that I am doing. I think I’ve cried more in the past week about patient deaths than I have in the past years doing what I do. I was talking it over with a fellow nurse and she said that yes we all might need boundaries, but boundary sometimes prevent us from being that nurse.

I found myself becoming more of a hermit, of sorts. Not just because of Covid, but because I’m tired. I never knew that emotional exhaustion was so powerful. That literally, every cell in my being is crying out for a recharge. My mind never wanted to accept that sometimes, the weight of the world really does feel like it falls on nurses.

I don’t care what kind of nurse you are, or, what kind of practice you have. We are the gate keepers. We are the truth tellers. We are the touchstones. We are the ones who have to summon strength in order to project it out for someone who needs it. We have to be the smile behind the tears. We are the peace keepers, putting our own struggles to the side and finding that delicate line in order to try to cultivate harmony. We are the advocates, forgetting all else in the process, and championing for those we served.

Our hearts are also broken. I don’t know of a time when we have been more terrified. Emotions, like terror and worry, carry weight and that weight is heavy upon us. I might be able to shed my mask in my gown at the end of a visit, but, is there a way to shed my worry?

Ironically, I couldn’t see myself ever doing anything but being a nurse or being in the healthcare field. Yes, we still smile. Yes, we try to lighten the burden as much as possible But, we are tired. We long for a day one the best medicine we could give was a hug. When the expressions on our face echoed what was in our hearts, but, in this day, that reflection just isn’t visible anymore. I can only hope that some kernel of emotion is shown through her eyes. That’s all we have left.

Sometimes, we feel like sacrificial lambs. Just because we are essential, finding ourselves doing things and going places that no one else wants to go, does not mean that we should be taken for granted. We are not just another piece of protective equipment that is disposable.

Nursing is hard. Caregiving is hard. Have our backs while we lead the charge into this nightmare no one could have imagined.

Check on your healthcare providers. Just because we are carrying the impossible load doesn’t mean it isn’t weighing hard upon us.

No Angel

“It takes a special person to be a nurse and it takes an angel to be a hospice nurse”

I am no angel

I will not always know the perfect thing to say

I will not always be on point

I am not perfect nor am I an angel, but here is what I am

I will be a fighter for my patients and their families

I will be tenacious in my search for answers and solutions that bring comfort and peace

I will be their most outspoken advocate and put my reputation on the line in the blink of an eye

I will be the shoulder if they need one to cry on

I will be the ear if they need one to vent to

I will listen to their pain and worries to help lighten their burdens

I will be the the hand that they didn’t know they were seeking to hold onto.

I will be their calm in the midst of the chaos

I will be their clarity as they traverse the seas of uncertainty.

When things seem darkest, I pray it will be my light that illuminates their journeys.

When they look up, with tear soaked faces, grasping for answers and feeling helpless, let it be my eyes they meet so that their fears are vanquished.

Each family becomes my own.

I am your caregiver

I am your confidante

I am your champion.

I will cry with you

I will wipe the tears

I am not an angel and don’t have wings but my arms will envelop you and guide you in your journey

When emotions run wild and there is stomach hurting laughter amid your sadness, my laughter will mix with yours

I am your aide.

I am your nurse.

And I am humbled and honored to walk alongside you during the most raw moments of your life.

I Understand

“Helen,” she said, as she wiped away her tears, “I hope you never have to experience this. I hope you never have to feel what it feels like to be making a decision that could be ending someone’s life.” Her mom had just literally passed, the room still felt like full of her presence. My smile was soft and I held her hand, while she poured out her grief. What she didn’t know is that the feeling she was talking about.. that feeling of being the cruelest decision maker… I know it. Far too well. Not as a nurse, but, more profoundly as a daughter.

My parents were of the moment. They didn’t believe in life insurance. They didn’t believe in wills and estates. It was the mixture of a deeply held Greek belief that you just don’t talk about those things and the idea that who cares – I will be dead, kind of philosophy. For all of my Greekness, that’s not a belief I hold to.

My dad passed many years ago. He was 57. Never smoked, didn’t eat meat – hell, he didn’t even drink coffee. He started getting headaches. He started acting strange. By the time he finally went to the doctor and she sent him for an MRI, his malignant brain tumor was the size of a grapefruit. Glioblastoma stage 4. He lived a year. I was about 23 or so – not a nurse yet. I didn’t feel it was my place to talk to my parents about decisions and code status. With my mom, however, everything was different.

My mom’s health was never great. To be honest, it was a surprise that my dad passed first. She never took care of herself. Her health fell very low on the list of priorities. I remember distinctly walking into her home one day and she had cyanotic lips. I ran to a drug store and bought a pulse ox. I should rewind and let you in on the fact that I was in my mid 30s and had been a nurse for years. Her saturation was in the 70s and frantic, I found the sleep apnea machine that she had but was covered in a layer of dust. She didn’t even want to put it on. She. Was. Stubborn.

My brothers and I tried to talk to her about drafting a will. Time would later show that she passed about a year later. That talk went so well that we all left in a rage. The year was spent with her in and out of multiple medical facilities. She refused to have any of the talks. Maybe it was hopeful optimism on her past thinking she would magically get better. That talk of the negative would make it become real. The only information I could ever gather was when she would off the cuff say “I don’t ever want them sticking any damn tubes down my throat.” That’s it.

The night she passed, I cannot say that I was anticipating it. But, life is so good at throwing us those curveballs laced in lessons. She was in an Acute care rehabilitation facility. When my son and I came for our daily visit, she mentioned something about her oxygen dropping the night before. But, I didn’t want to be -that- nurse so, we just hung out for a while. She was laughing and joking. Thanksgiving was about a week away and we were hopeful she would be home. Easter had been spent with her in the hospital and she kept ranting how she didn’t want to spend another holiday as a patient. Well, the cruelest irony is that she got her wish, but, not at all in the way she anticipated.

The timeline for that upcoming evening and night has moments of blazing clarity and others that are almost like looking through a pair of fuzzy glasses. The first call came around 7pm. The nurse stated that they were having issues with her pulse ox. It was in the 70s, but they couldn’t understand because she was still coherent. Triaging in my head, I asked if they tried the pulse ox on the ears. What were her other vitals? Chest X-ray? Labs? They let me speak with her and she sounded sleepy. I was a single mom at that time, so, I gathered my son and headed over.

Even as I walked into her room that night, I did not think I would walk out an orphan. She was still not breathing correctly. But, I kept thinking some Lasix and steroids – maybe an antibiotic and she would be ok. Maybe I had that same thought of not thinking the bad would make it not come. Not so.

The Lasix has been given. So had the steroids and antibiotics. She was on a bipap and yet not at all improving. I talked with her a bit. I think she sensed something because she looked up at me and asked me if she was dying. Talk about searing pain. I looked down at her and told her that I honestly didn’t know. She started giving me her blessing… telling me that no matter where life took me and whatever decisions I made, she would be looking down and bestowing her blessing. My tears fell down onto hers. She was coming to terms.

Apparently, earlier in the day, the nurse had come in talking about the problems the night before. My mom refused to sign a form but stated she never wanted tubes down her throat. Hours later, the doctor took me aside and explained what I dreaded hearing. She would need intubated or she would die. Somewhere there was a shunt. They didn’t know how or why but without a tube, she would die. He explained that they could make her comfortable. He explained that because of all of her other issues, if we put a tube that she might never come off of it. The idea of my mom waking up with a tube, knowing she made this one thing clear, crushed me.

I have never felt my hand shake harder. My heart was pounding so loudly I heard it in my ears. That bright pink form on an old brown clipboard with a half broken clip. The pen felt like it was covered in razors in my hands. I do not honestly remember how many times I tried to sign. The blob of black ink on the form where my signature was required grew larger. My eyes were sealed tight and my teeth clenched as I finally signed. Comfort measures. No tubes.

My mom did pass that night. I was lucky enough to be there. I held her hand and whispered how much I loved her as she took one last breath.

After she passed, a few of the nurses came to comfort me. They told me how impressed they were with my decision. So many people verbalize how they don’t want certain things but, when the moment of crisis hits, families find it hard to follow through. I couldn’t live with myself if I had not followed through. That disappointment was something I don’t think I could live with. What I did not think of at the time was what I would have to live with – the feeling of responsibility of ending my mom’s life.

It crosses my mind daily. 7 years later and I still cry about it like I am attempting to find the courage to sign the form. Therapy hasn’t made it go away, but, it has dulled the ache a bit.

Maybe I am a hospice nurse because I know that pain.

But, I do know the pain.

I know the feeling.

The pain.

The guilt.

The fear.

The confusion.

The agony.

I understand, my dears.

I might not always tell you..

But,

I understand…..

What Makes You Great

Was recently chatting with a good friend. Like most of my friends, she is also a nurse. A long time ago in a land far away, we worked together on an inpatient step down unit. Laughs came so hard we both soon had tears streaming down our faces. Consider myself so fortunate that I have been lucky enough to work with such great nurses.

Of course, that got me wondering – what really is a great nurse? Do they walk right out of nursing school, brains filled with words like homeostasis, prepared to be movers and shakers of the hospital? Or, are they the scared newbies, frightened to volunteer the answer for fear they will sound unintelligent?

The secret is, there is no real magical formula. The making of a nurse isn’t found in a textbook or identified in evidence based research. It is something intangeable that lives far beneath the surface. Quantifying it isn’t possible.

A myth that needs to be extinguished is that a great nurse is one that is perfect. A great nurse is perfectly imperfect. Mistakes are many but lessons are far more. If you find me a nurse that has never made a mistake, I will also then show you my tiara as Miss America – in other words, neither exists.

Once, I hung 3mg on IV Unasyn instead of 1.5mg. In the era of paper charting and non scanning, I just saw the patient’s name and the medicine and up it went. When I realized my mistake, you would have thought I had singlehandedly ended someone’s life. I ugly cried. For a long time. Will never forget the older nurse who pulled me aside and reassured me that this mistake just made me a better nurse. So many years later, I cannot express how right she was.

We are human. We make mistakes. We never want to make them, but, they do. No nurse ever ever wants to harm a patient. There was a NICU RN who accidentally dropped a preemie, which resulted in terrible brain injuries. The knee jerk reaction is to judge her or him. Oh my God! How could that happen? The reality is, nursing doesn’t happen in a perfect world or NCLEX world, it happens in the real world. While my heart breaks for that family, knowing what I do about the overwhelming majority of nurses, I am just crushed on his/her behalf. The guilt. The regret. The endless reliving that moment over and over….

Would you like it if your whole career was boiled down to a few seconds and your life forever judged by them?

The truth is…. great nurses make mistakes

We sometimes forget to introduce ourselves

We sometimes are late giving you medications

We sometimes open a pill bottle and spill them.

We often cannot pronounce the names of medications.

We do not know all of the answers but are often scared to say we don’t know.

When we do say we don’t know, understand that it is a formidable act of courage

If we drop pills or get our gloves stuck to tape or stumble over words, we put our scrub pants on one leg at a time, so understand we are human also.

Nurses love what we do. Confidently, I can say that the overwhelming majority of us do not do this for a paycheck. We do it because it is our soul’s calling.

We put our hearts into nursing.

We put our souls into nursing.

We did this before the pandemic and before all of the hero talk. We will still be doing it long after the talk disappears.

Great nurses have failed out of nursing school
Great nurses have bombed the NCLEX
Great nurses have made a med error
Great nurses have said the wrong thing
Great nurses have dropped a cup of pills
Great nurses have forgotten to chart
Great nurses have taken a moment to collect themselves mid shift
Great nurses have squeaked out of nursing school.
Great nurses have asked endless questions
Great nurses don’t have all of the answers
Great nurses have their ADN
Great nurses have their LPN
Great nurses have their BSN
Great nurses have their MSN
Great nurses have had to retake certification exams
Great nurses have sobbed at the end of a shift

Great nurses have thought of quitting
Great nurses have questioned their roles

Nurses treat their fellow humans with kindness.

It’s time humans treated nurses with kindness.

In other words…..
Great nurses are HUMAN

Not 9, But 99

She was the type of old lady I want to be. She was sassy and opinionated. Mostly confused but, had moments of crystal lucidity. Her eyes were set on a fellow resident and no amount of reasoning could dissuade her that this was going to be her boyfriend. She loved Diet Coke, but, fountain only please… Her accomplishments were many in life during a time when such fetes were limited to those with an Adam’s apple.

Gold hoops were always glimmering from her ears. A former hairdresser, the hairdo was never in question. Sometimes she loved me and other days she would look at me, questioning loudly “What in the hell are you doing here?”

We shared chocolate bars and man stories. She always told me that while other parts might not work, her eyes never stopped. As her mind allowed, we talked about trash reality tv. She was my patient for a long time. Far longer than is usual for hospice. I had a nickname for her, only know to me, Kitty.

Just as Medicare requirements dictate, we had several team meetings and the talks of discharge would go round and round. But, just as the time would grow closer, something wildly unexpected would occur and discharge became a non possibility.

As rapidly as her descent was, her resurrection was equally as fast. Non responsive for days, she would just open her eyes as if she never skipped a beat. To say that this made me feel clueless would be an understatement. Just as I prepared family, boom, she was roaring right back.

I had begun to accept my lack of knowledge and power. Just as discharge talk began, the crisis began. Making sure to prepare family just in case, I found myself disbelieving they words I was uttering to them. Guiding them through the journey of end of life, I was expecting to receive calls daily that she had sat up and was demanding food.

This time was different. There was a little nagging voice urging me to keep my eyes open. There was gurgling. There was lack of waking up. My comforting and preparation of her daughter continued, even though I still felt beyond skeptical. The motteling. The fever. And yet, she had bounced back before.

Her preacher came and along with the daughter said some prayers. I had asked him to go today… nagging feeling. My phone rang as I was with another patient and noting the number, my thought was that I probably had forgotten my stethoscope there – pretty typical.

“Helen… it happened”

“What happened?”

She

Was

Gone

With my best attempts as hiding my shock failing, I wrapped up my visit and headed over to pronounce. Even still, I half expected to walk in and a deep sleep to have been misread as an eternal sleep.

But, she was no longer.

Her face peaceful. Her life lived her way. Her journey traveled her way. Her death beyond question on her terms.

There were moments it felt she had 99 lives. That ended today.

As my heart continues to swell with gratitude which express as tears from my eyes, I cannot believe my good luck.

Her 99 lives have given such profound meaning to my one.

The Cry

It was a particularly hard day in the middle of a particularly hard few weeks. Nothing was going the way I wanted it to. I had snoozed then alarm one too many times and missed the small sliver of free time in the morning that I could exercise before work. I had forgotten to charge and sync my laptop the night before. Attempting to eat healthy, I packed some watermelon in my lunch. Mind you the lid didn’t seal correctly on the container and even before I could start my car, I had a shirt soaked with watermelon juice.

Driving to my patient’s house, I was too annoyed to listen to anything. The state of the world is absolute chaos. Basic humanity has been shoved aside for hatred wrapped in a packet labeled politics. Common sense exists only in the imagination, it seems. I glanced in the rear view mirror – the eyes that looked back at me reflected sadness and fear. My stress levels have become like an active volcano.. unable to be contained, lava flowing uncontrollably. It’s no wonder all I seem to notice are grey hairs sprouting like angry weeds or small little lines on my face where once it was smooth.

That first visit wasn’t bad. It took a lot longer than I expected. I tried to chart in the house (part of my new plan of maximizing time) but, since I had a low battery and laptop not synced that was not an option. After I finished and en route to the next patient, I pulled over since my laptop could get a charge in the car and I actually had signal to hop on the VPN.

Most of my visits are quite rural and these were no exception. The area was alive in shades of green- from the leaves on the trees to the crunchy yellowish green of the weeds since the ground was pleading for a good rainfall. With the laptop up and the familiar clicking of the keys, charting had begun. As I was mindlessly blazing through a narrative, charting came to a screeching halt because try as I was, I could not recall a word I needed to find. This happens more often than I care to admit. Exasperated, my frustration and exhaustion converged and with a thunderclap, the emotional eruption emerged.

I started crying.

I cried for the word that I could not recall

I cried for all of the minor mishaps that made me feel like I was failing

I cried for all of the situations in my personal life that rendered me powerless

I cried for my ALS patient, who despite every attempt, was becoming riddled with pressure ulcers.

I cried for the patient plagued with cancer, who through tears of his own, told me his wife of 62 years was his reason for breathing.

I cried for the night crazy state of the world, riddled with virus but truly suffering from ignorance

I cried for the mom, who raised a son on her own, but wouldn’t be able to see him married because her time on this earth was dwindling

I cried for my fellow nurses, who exhausted and frustrated continue to show up day in and day out because giving up just doesn’t exist.

I cried for those whom staying home was not an option yet who cannot pay their bills with their paycheck.

I cried for the situations that I desperately wish I could change yet am powerless

I cried for the families that wished for 5 more minutes

I cried for my mom, who never got to see my son grow to be a high school graduate.

I cried because I often feel helpless and inadequate as a caregiver.

I cried because I so desperately wish I could be all that patients and families need me to be

I cried because I wished I could calm the racing of my mind.

I cried

I just cried.

When it all stopped and I could take a deep breath, I drove to my next visit.

And as I pulled into the driveway and my sweet patient’s wife came out to greet me, a smile crossed my face.

“Helen…. I am so happy to see you,” she sang out.

My heart was full of joy.

I just smiled.

Mean Girl

There are things that irritate the heck out of me. Stubbing my toe in the middle of the night. Finding a box of snacks and realizing someone has finished the last one. Sneezing in the middle of putting my mascara on and then looking like a skunk. How much time to you have because I have like a million more. But, there is one…. one that really scalds

Nurse stereotypes.

The sweet young nurse, with scrubs too tight and make up perfect, just waiting for a doctor’s attention. The crabby older nurse that has worked way too many night shifts. Catty, loud and mean cliques of nurses that act like immature high schoolers. There is something that really bothers me about them all… that, sadly, there is an underlying foundation of truth to them all. Sure, they get exacerbated by stage and screen, but that kernel of truth still exists? How do I know? Well, other than actually being a nurse, I know because I was a mean girl.

It’s not something I am proud of. It won’t find its way to my resume under accomplishments. Certainly won’t win me nurse if the year, but, if I am going to be brutally honest, it is true.

Sure, I could try to make excuses for it by saying I was having difficult life circumstances, but, that does not excuse poor behavior. It was a group of us. I cannot say that we did it intentionally, but, looking back, it’s as clear as day… We gossiped. We talked about people behind their backs. We were not always welcoming to new people. Saying all of those things almost makes me sick to my stomach. I am not that girl. But, it’s easy to get caught up in something like this.

You see your coworkers more than you see your own family. You are in the middle of critically important situations where life hangs in the balance. You bond. Sadly, sometimes, that happens at the exclusion of others. “What? Did you see what she did? Oh my God! I would never do that”. That, right there is silent nurse bullying. That undercurrent of judgement then leaks out into other situations. Pretty soon, the cracks in terra firma appear and divisions become evident.

It sucks being the new person on a unit. You have to learn the style of nursing. You need to remember codes and passwords. You are worried about making a good impression. Not to mention, you have to find out where the safe bathrooms are and if you will get your head ripped off for having a drink on the desk. The last thing that is needed in that situation is an icy response from your new coworkers. The snotty and gossipy atmosphere just perpetuates loneliness and feelings of inferiority.

Karma always pays back, however. I left that hospital and began a whole different type of nursing in a new unit. Not knowing anyone, I was scared and lonely. The mean girls in this place were legit. I mean, I never stood a chance. Many evenings, I found myself driving home in tears not only because of how work made me feel, but, at the sad realization that life was reflecting how I was back to me. This job didn’t last long because I was totally miserable. The unit lost a nurse and a nurse lost her confidence. There are no winners.

Do I still love gossip? Yes. Sometimes, I find myself talking behind someone’s back and I later feel like I have betrayed them and myself. We cannot stop this cycle of nurse on nurse malice unless it is all exposed and taken out of the shadows. It happens. It is wrong. Let’s fix it. It costs life saving nurses and that’s a price too high to pay.

Be open and kind to new employees.

Try not to get caught up in a rumor mill.

Think about your actions- if others find out would you be embarrassed and would they be hurt?

No one has to “earn their keep” or prove themselves.

Be inclusive and not exclusive. Both take the same amount of energy.

It took a role reversal to realize my own actions. If anyone had been effected by my mean girl ways, I am sorry. This is my mea culpa. Truly, I wish I could take it all back. Unable to do so, I can only try to be better. I know better, so I am working on being better.

Nursing is such an emotionally exhausting profession. We put our hearts and souls on the line every shift. Our patients take precedent above our own selves. If our patients are really our priority, catty mean and unkind behaviors hurt them the most. It costs nurses. It steals self confidence. It renders a strong unit incapable.

Be kind. Celebrate our differences because our strength lies in those. In this crazy world, having each other’s backs isn’t just at a negotiating table. It’s every day, every interaction, both visible and invisible.

We are kind, empathetic and forgiving to our patients.

Let’s be that way with each other.

Take Two

I always try to prepare myself for a new admission. Reading over the notes and reports, a plan starts to take shape in mind, even before I have my first visit. Plenty of times, almost as if it were habit, autopilot kicks in. CHF? Oxygen, morphine, diuretics, meds to increase the strength of the heart’s contraction…. you get it. Try as I might, I can’t seem to avoid doing that. But, there is one diagnosis where all of the above becomes untrue. One that makes me slow down and causes my heart to quicken….

Glioblastoma. For my non medical friends, it’s one of the nastiest cancers you can be unlucky enough to be diagnosed with. A brain cancer, which is often diagnosed in the more difficult to cure stages, because that’s when symptoms begin to arise. Median survival time: 12 months, if you are lucky. The chemotherapy is awful and the surgeries are brutal. The pressure on the brain causes swelling which lead to seizures. It is so gut wrentching because despite advancements with other cancers, glioblastoma remains so lethal. Personally, reading it as an admitting diagnosis takes my breath away because it is what claimed the life of my father.

It was my first real experience with cancer. My first bitter taste of mortality. My dad had been the type to never get sick. He never smoked… he drank alcohol only on days that don’t end in y (which is to say never)… he was a pescatarian (only ate fish) and he was active. He started with headaches. Then, odd behaviors. Not too long after, an MRI revealed the orange sized tumor in his brain. 14 months later, as we were helping him back to bed, he began to have a seizure… it just so happened that my mom, my brothers and I were there. He seemed to look at each of us as his body writhed and took his last breath. The sound of my scream from that moment is often so loud, that I have to wonder if it is just in my memory.

She was a kind woman, with the most honest eyes..and her admitting diagnosis was glioblastoma. As I continued to skim over the information, it was clear that she was pretty healthy before this silent invader. Just like dad. These similarities would present themselves so many times… Could it be that it was coincidence…?

It’s the family and loved ones.. the journey they are taking.. The feelings that are unspoken but seem to come bounding back as if it were not 17 years ago, but rather yesterday. Of course, my heart aches for the patient. But, as I have only been a caregiver/family member in this situation, the true bond of understanding cements my relationship with the families.

The feelings of helplessness as your loved one suffers. The hope – that never seems to dissipate of a remission. The prayers that the end will be peaceful. Moments where the feelings overwhelm and feel as if they have engulfed your entire existence. Waking up in a panic because you actually slept and were afraid of missing a moment. The role reversal… from cared to caregiver.. from being reassured to reassuring…from broken to shattered.

My sweet lady had an amazing family. She was so loved and not for a second could she doubt it. From all the beautiful flowers, to the overflowing glass bowl of candy, family never let her forget that she was foremost in their hearts. For a good while, things remained slow and the symptoms minimal. The uncertainty on their faces.. as if to be scouring my own looking for answers. Ones I didn’t have… when would it happen? How? God never clues me in on those.

Each sting of heartbreak. Each sigh of relief. Each feeling of guilt because although you don’t want the patient to pass, you know there will be a resolution. We crave order.. when we see that living becomes more painful than our own loss, letting go becomes our prayer.

My patient’s body began to betray her. Medications were being adjusted often. It was one such moment that again caught me off guard. Calling the pharmacy for a refill, the pharmacy tech asked for the birthday. As I voiced out the day, month and year, I froze. Her birthday … day, month… year… my father’s birthday. Exactly the same.

Her final journey was peaceful… her amazing family kept vigil. With each day, I would try to explain how this was just like labor… you could have a plan but so does the universe, so expect the unexpected. Mornings I would wake and scan my phone to see if she passed over night. I found myself lost in the memories. Lost in those feelings… the bitter battle of wanting her suffering to end and the guilt that blankets the soul. Have walked in their shoes. Those feelings. The ones that would cause me to cry silently after my visits.

When time drew near, my visits lasted longer. I found myself not wanting to leave. I held her hand and would brush her bangs off her face. Would sit with family and silently will them strength and peace, as their journey was one I had already traversed. Praying quietly that her end would be soft and silent.

It eventually came… it was soft and silent. Fighting back tears there were so many memories breaking through the dam in my mind. Seeing them cry… knowing the hollowness they felt as they surrounded her bed. All I could think of was my dad.

As I pronounced…looking for chest to rise, feeling for the river like flow of her veins.. listening for the familiar song in the chest… but, she was without all. “What is the official time, Helen?” It was 1308. Only when I sat down to fill out forms did my heart race again… 1308. The exact time someone else’s death… my dad’s.

A Change of Thought.

I am a proud hospice nurse. I love what I do. But, I find myself dreading my answer when people ask me about what I do. Typically, the responses involve some sort of “oh” and the loss of eye contact as they look down. “I couldn’t ever do what you do” “I don’t know how you do it” are usually the next words that float out. But, recently, a statement that I have heard repeatedly caused me to reframe responses, as well as my own thinking.

I had just finished working and was still in my scrubs and name badge. Stopping by a pharmacy, I needed to just pick up a few things and would be on my way home. My scrubs betrayed my wish for anonymity. In the era of Covid, some see scrubs and are compelled to ask what you do. Today, a fresh faced clerk who at first glance seemed to so innocent in the path of life, that I found it hard to believe that she had ever experienced pain or heartbreak.

After the customary greeting, this young lady asked how I spent my days. “I am a hospice nurse,” I started and as I tried to continue, she interjected, “ that is so awful for you! How can you do that? It’s so depressing! I would never do that! It just chips away at your happiness, I bet!”

It took me a minute to answer because I had never had anyone react that particular way. Her face, a mix of sympathy and confusion, seemed to be hungry for my answer. “Well, I am sure your job can be hard, too” I responded. “Death is a natural part of life. It’s a subject most like to avoid, but, avoiding it won’t make it go away.” She went on to tell me how sorry she was that I was a hospice nurse, as if being one was forced upon me. That the thought that I chose this was almost unfathomable. I almost wanted to reach beyond the plexiglas and hug her because she seemed so sad for me.

“You know, I chose this area of nursing. Hospice has been such a life changing experience for me, in all the best ways.” My answer stunned her and she asked for clarification. “I have seen the best and the worst in humanity. I have seen love in the purest of forms. I have held the hands of the most amazing people and helped them pass with dignity.” I felt like I was talking her ear off, but, each time I stopped, she would ask for more details.

Hospice has allowed me to spread my wings, as a nurse. It has given me confidence in my nursing abilities. It has taught me to always trust my gut instinct. Those moments when time is screaming for me to move on, but, something is making me stay. We often talk about the miracle of birth, but, being present for someone’s transition is equally as awe inspiring. To be here one second and gone the next, that still overwhelms my mind.

I never knew real empathy until I chose hospice. There are families that can be so overwhelming and frustrating. They have taught me that patience has no limit. My eyes have seen love that is so palpable it crosses time and space. Forgiveness, that was not granted for entire lifetimes, be uttered with more feeling and sincerity. The bedside reunions. The promises of love “until we meet again”.

No doubt there are difficult moments. Moments I have questioned my own sanity for being a hospice nurse. Those moments are microscopic in comparison to the gifts that hospice has brought me. To be present when a family feels their world is turning upside down and you provide the comfort they need, is a feeling words could never do justice for.

My checkout at the pharmacy took a bit longer than I had anticipated. I was just hoping that my words were like seeds and a few might fall perfectly, blooming a new understanding in this curious girl. I gathered my purchases and thanked her. I could tell I had given her an awful lot to think about. I didn’t think much of it until a few days later, when I returned to the pharmacy.

As soon as I walked in, I heard her yelling for me. I smiled and walked over, thinking she was just being friendly. “I have to tell you,” she started, “I thought a lot about what you said. My uncle is pretty sick and I had a long talk with my aunt about hospice. She was against it at first, but, I kept on. They are making the call tomorrow.” Overwhelmed, I found my eyes getting teary. Another person who will be able to spend their last days comfortable and in a manner of their choosing. Knowing that fills my soul with gladness. That very moment is the single biggest gift hospice gives.

What Next?

No matter how prepared you try to be, you never are. All of the education – explaining about how the body will change, what medications will be used and how each symptom will be managed – prepares only minimally. But, we still put so much effort into the preparation of -the- moment.

The progression towards death, particularly the last stretch, is very much like the march towards birth. You can take the classes and buy the books, you can watch the videos and make a plan, but, when it happens, it’s more often than not, a complete shock. Plans get tossed aside and predictions made are invalidated. For anyone that has been through labor, some echoed reminders occur in the labor towards the end.

She had been sick on and off with cancer for many years. Each round of chemo was going to be the cure. When the chemo and radiation just got to be too much, she knew it was time to labor towards her forever. Her transition was peaceful and calm. The room so quiet that it was like you could hear the soul leaving her body – like that warm breeze that is so calming on a hot day. Her son, not much older than my own, looked up and asked, “ Now what…. where has she gone?”

It’s Valhalla… it’s Heaven… it’s the great gathering spot of all the souls… so many believe in so many different things. In order to try and wrap our minds around the unfathomable, we have all thought of what happens when we are no longer of this world. Will my departed loved ones appear only to my eyes in those last moments and help me transition to that next space? Will there be angels who guide my being up a staircase? Will there be that moment when I am dead, like in the movie Ghost, when I am yelling at the mortal, not believing I am quite dead, but, they cannot hear me? The truth is, my friends, I just don’t know.

It’s hard for me to accept that our souls only get one go around. Maybe they are redeposited into unborn babies and that act of labor into this world erases our memories of a past life to make way for new memories. Those strong feelings that we get of deja vu, where we remember an experience or a face, but don’t know when and where… maybe those are memories that have leaked through. I don’t know… the only thing I am not sure of is that I can guide you towards that great end, but, I don’t know what lies on the other side.

I grew up in a very religious Greek Orthodox household with firm beliefs in Heaven and Hell. Been a good person? Heaven’s gates open up inviting you in. Been not so good? Well, things might just get a bit hot for you. As I have had years and experiences pass, I can’t imagine that’s exactly what it’s like. If it is, then I will certainly be surprised. I think you will meet up with that being that you deem as God…. whether it be Jesus or Allah or Buddha. Maybe that’s when you can get the answers that plague you all of your life. Maybe that’s when we will all have that amazing “Aha” moment when it all will make sense.

What’s lacking for me in all of the “traditional” views of the afterlife is the idea that once one dies, they are just gone. I can’t accept that. When someone is dying, we tell families to keep talking to them because hearing is the last sense to go. But, no one knows when it goes. Can they still hear us? Years later? Does my mom hear me when I mutter about how she never wrote her recipes down or the fact that she passed down forehead wrinkles (We used to call them the Naw, girl wrinkles because they are the ones you make when you say that). I know she does. I have no doubt.

I have been thinking about my mom a lot the past few days. Been sort of having a one way internal dialogue with her. She passed almost 6 years ago. But, the past few days, I felt lost and hungry for advice so I kept returning to that on going internal chat. Eager to just chit chat, I called a friend to just take my mind off of things. She is pregnant with her second girl and bemoaning how she feels bigger with this baby than with her first. I asked if they decided on a name… and I almost dropped the phone… She is naming this baby my mom’s name. My friend didn’t know my mom or her name. Nor is the name a common name at all. I hung up the phone and cried. As I was wiping up my tears, this beautiful green and blue butterfly landed on my driver’s side mirror. Blue and green were my mom’s favorite colors. That’s no coincidence. They still feel and hear us.

I am not sure how you feel, but, it brings me such comfort to know that this destination we are all headed to isn’t the final stop. Whatever you might believe and however your beliefs drive you, we can all agree that our loved ones might disappear from our eyes but never from our lives. They are all around us – leaving little messages for us to find when we need them the most. It takes away some of the bitterness of their deaths and helps me fear death less. Keep your hearts and eyes open, friends. You never know who just might be sending you a message.