A Mixed Bag

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As I often do, I found myself thinking about things I could blog about tonight…

Should I talk about the lady with dementia who responds to basically no one and nothing but responded to a chocolate doughnut I brought her?

Or would it be better to blog about the man, whose wife is clearly passing, who looked at me and said that needed to have a get together for all of us who helped care for his wife?

The patient who has every cat I have ever known beaten because it seems that just when I think she is passing, she manages to pull a rabbit out of a hat?

I think I’ll just talk about time…

In my line of work, time is priceless.  How much time?  How long? When? Patients and families always find themselves asking me questions about time… In a lot of ways, patients have lost grip on everything else and only their slight hold on time remains.

No one knows for certain how many grains of sand remain in anyone’s hourglass.  Not even the most experienced hospice professional can be sure of when a patient will pass.  There are clues.  There are signs.  There are hallmarks that I can base my estimate on, but, at the end of the day, it remains an uncertain estimate.  Just as every body lives differently, every body dies differently.  There is also that undeniable role that the human spirit plays…

No one knows for sure how one’s personality influences their passing.  From experience, I can say that one’s personality is fused into different stills of their passing.  Were you a feisty person?  Typically, they are the ones that fight on… even when fighting is a lost cause.. they still fight on.  Were you a fixer?  They are the ones that wait.. or try to.. until everything is resolved..  Were you one that hated to make your family sad?  They are the ones that pass when a family has left the room.

I wish I could so provide the clarity and foresight that patients and families seek.  But, I often find myself wondering what does it really matter?  If you knew you were dying tomorrow and were already sick, what would it matter?  If you were not sick, I am sure it would matter greatly as there would be things to take care of.  But, if you are already ill, why not just relish what time you have left? Devour each second as if another would never exist.

Our lives are a series of seconds… a collage of choices… a mountain of memories.  Seconds become decades in the blink of an eye.  Allow yourself to be present in the here and now.  Time will always be there… just marching along. Counting the minutes or hours is akin to wasting them.  Enjoy this second… this moment.. this present.

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Boundaries

They tell us to create boundaries in order to protect ourselves.  Try to limit how much of yourself you give.  When a nurse works in a hospital, it’s a little easier to do this.  You see your patients for a shift or two and then it’s on to the next crew.  But, when you see the same roster of patients… week after week… you hear their fears, you witness their sorrows.. you dry their tears as you hold back your own… you delight in the small things that make them smile… that smile.. more treasured than the rarest jewel.

Maybe I am a bad nurse, but, I can’t seem to always put up those boundaries.  So, let me explain that.  Don’t misunderstand and think that I am at their homes every night, having dinner with their families and catching up.  No, they need their space and so do I.  But, the boundaries that I don’t know how to put up are the boundaries of the heart and mind.

How can I not care for you?  How can I not worry for you?  I catch myself wondering sometimes if you are ok.  How much of your last meal did you eat?  Are you hurting?  Are you getting the right medications?  Are you alone?  Are you sad?  Are you afraid?

The area of hospice is a difficult one.. it is an eruption of fears and regrets, joys and sorrows.. frustrations and passions.  Sometimes, the words that are spoken are ones that even their closest family members do not hear.  I am the secret keeper.  I become the one that tries to make even the smallest wishes possible, so that one may pass without lingering thoughts.  It isn’t always possible, but, damned if I am not going to try.

The fate that caused hospice nurse and patient to meet sets the stage for an intertwined tapestry of lives.  They do not guard their hearts and minds from me.  I believe that I would be giving less than the me they deserve if I did so.  There are moments where it does become difficult, but, remembering that I am the one guiding their forever journey makes me understand that what happens is just as much about me as it is about them.  sunset-hands-love-woman.jpg

Rituals

People often ask often how I cope with seeing so much death… After all, the purpose of my job is to prepare people so that they have a peaceful and pain free passage.  For the vast majority of the patients, death is almost a welcomed event.  While leaving loved ones behind is not always the easiest, by the time death arrives, if I have done my job as best as I can, my patient and family are ready for this transition.

Even in the cases that death is viewed as almost like that anticipated friend that comes to help you escape, it still always has a bit of a sting.  It’s almost unfair for me to say that it is painful for me because I always think about the loss that the loved ones feel.  But, even if I’ve known the patient for one day, one month, one year – that patient always leaves their own impression into my canvas.  Perhaps it is because as I told someone very dear to me today, that in our patients, we see ourselves.  Even if it is just a tiny flicker, somewhere in that patient, we see a familiar fire…. we see ourselves.

So, with each passing, I mourn… the loss of the person.. the loss of that spirit… the loss of that mirror reflecting back at me.  I mourn the loss of the woman who held on until her daughter told her it was ok to go… that she had provided her with the one thing she needed to survive without her mom… strength.  I worry if they pass calmly.  Some people say that death is like birth, but backwards.  Birth seems pretty traumatic for those little babies and I would hate to have that happen to these dear souls.

So, dear patients, I fight your fights with you… I do feel your struggles and triumphs.  I can sense so many things about you because your essences has blossomed a beautiful vine in my heart.  As I have held your hands and felt them go from warm to cool, know that this is a journey that wasn’t taken alone.

And when the journey ends and my heart alternates between being happy you are at peace and sad that you are no longer here, know that I, too have my own little way of celebrating your life.  This may sound silly to some, but, I light a fire. The papers and notes that were taken during our journey together become the starter kindling for that fire.  As the fire grows and fills the room with light and warmth, my thoughts dance back to the wonderful memories I have made with that sweet patient.  And as the tongues of flame die down, a prayers of celebration and gratitude fill my heart.  Happy journeys my friend..

Sometimes, when the flames have passed and it’s time to close the glass doors of the fireplace.. for just that split second, it’s almost as if I see that reflection there… that reflection of me… of that patient… of that mirror…

Reasons

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I often find that there are many “convenient” phrases that people like to use when they don’t know what to say…

It’s God’s plan

Everything comes full circle.

Everything happens for a reason…

Now, I do have to admit that, the everything happens for a reason one, I use a lot.  I HATE when people use it when someone dies.  It’s such bullshit.  But, for events that happen in one’s life, I do believe to be true… and today, life taught me how right it is..

I was supposed to take my old lady bus trip to NYC with a friend of mine today.  Super excited to go, spend some great girl time with my friend, see some great sights and hunt for knock off Louis Vuitton purse (am totally guilty of this).  Well, last night, my friend texted me alerting me to the fact that NYC was suppose to get 6 inches of snow and be bitter cold today.  Ummmm, if I was in a cozy Broadway theater, maybe, but sight seeing and tracking down my replicas (sounds better than cheap imitations) would not be fun if I was going to become a snowbeast.  Trip cancelled.  Or, postponed.  Those Louis bags won’t be safe for very long.

Anyway, so, here I be… my son has guitar lessons on Saturday.  I honestly dread the drive, but, I drive alllll week, so what’s another 30 minutes in the car.  Normally, his lessons are at noon, but, for some odd reason, they were at 3:30 today.  Initially, I thought they were at 3, so I kept yapping at him and he corrected me (that -never-happens…).  We left at a decent time (see above about never happening) and after a coffee stop (shout out to Dunkin), we were on our way.  Then, of course my gas light starts flashing.  Alex: “Mom, we stopped for coffee, we cannot stop for gas..”  Me: “Ok, Alex, whatever you say” (knowing that I didn’t want to get out in the cold (he had all the cold weather gear on and I hate all that stuff so I wore a sweater as it was freezing and snowing).  We get off on the required exit and as I am pulling off, I remembered there was a gas station right there.  SCORE!  I pull in and hand him the card to pump gas and begrudgingly, he gets out to do it.  Mother of the year here, folks.  Anyway, just as he is getting out, I hear this car horn beeping non stop.  I see the man pumping gas in front of us kind of do that from side to side open mouth head turn that one does when something unbelievable just happened.  I hear Alex go “MOM”.  Hello Mom instincts on high. As I jumped out of my car, I saw an SUV pull into the gas station.  Front end completely destroyed.  A woman hops out of the driver’s seat – sobbing and yelling about her daughter.  I tossed Alex my phone and ran over to see what was going on.  Out of the car right now is stumbling a teenager… blood streaming down her face.  She is confused and not talking.  Add now nursing instincts kicking into high gear – she’s bleeding from the head, she must have hit her head.. concussion… she is disoriented.. concussion.. she might have hit her neck.. neck injury.. she’s got a massive deep gash on her forehead and the blood is streaming down her face kind of like a fresh stream in the springtime.  Guiding her over to the back bumper, I yelled for Alex to bring me supplies from the back of my trunk.  Being a hospice nurse, my trunk is full of things that I just might need when I make a visit.  I am yelling for things that he should bring me and he is just as calm and collected as he can be bringing them over.  At this point, other people have started to come over.  I started motioning to the one lady that I have the girl and she should go after the mom, who is walking around crying hysterically.  None of the airbags went off, so I was thinking the mom might be hurt, too, even though I saw no evidence of blood.  It’s funny how a whole group of strangers banded together to help this mother and daughter out.  Someone brought a blanket, another person brought bags to help clean up the garbage from the mess I was making with supplies to help the girl and another person was trying to calm the justifiably hysterical mom.  No one knew anyone else.  We all however, knew what we needed to do.  Long of the short is that mom and daughter were just running errands when mom lost control on an ice patch and hit a utility pole at about 60 miles an hour.  She is very lucky that the daughter only had that laceration on her head.  As I am sopping up her blood with gauze, someone yelled at me about gloves.  Sorry, but, that was the last thing on my mind.  A girl was bleeding and in distress, I am not going to stop and put on gloves.  Anyway, the ambulance finally came.  Both mom and daughter were taken to the hospital.  I’ve been thinking about them non stop.  As I was cleaning up the young girl, she mouthed out thank you….

I wasn’t supposed to even be in my state today.  I wasn’t supposed to take my son to his lessons.  I shouldn’t have let my gas tank run so low that the light went off (I know.. I Russian Roulette it pretty often).  How is it that a nurse with ICU experience and a trunk full of supplies is right there when an accident happens?  I could have had my old job where I didn’t have a trunk full of supplies.  Someone put me on a path different than the one I thought I was going to take today.  Everything happens for a reason…..

The Problem With Caring

While I’ve thought of blogging a lot the past few days, it’s been so busy that I haven’t had the chance.  Hospice has really become something that I feel really passionate about.  As much as the bosses say that you have to have boundaries, how does one have boundaries when they are dealing with folks whose boundaries have been shattered?  The moments where people come to terms with their own fate, those are moments that really have zero boundaries.  To be able to be that nurse that they need, I can’t really worry about things like boundaries.

I think that people teach you their boundaries the first time you meet them.  I always know how things will mesh with a patient and their family within the first 5 minutes of meeting.  Sometimes, the air is so thick with tension – often fear, sometimes anger, sometimes defeat, that I get that I need to sort of become a backseat driver and allow them to guide how things will progress.  Then, of course there are the wonderful folks who greet me at the door and before I can even utter my name I am engulfed in the most thankful embrace.  In that hug, most of the time, I can almost hear that family member let out a giant sigh of relief.  Its as if a bad situation suddenly became a bit more manageable.

Of course with hospice, my time with patient is often pretty limited.  I love to savor every moment that I have with them and their families.  I want to hear the story of how my patient met their spouse.  I want to feel their excitement as they tell me about how they surprised their kids with a trip to Disney.  Bring me in.  Help me feel like a surrogate member of your family, who is there to drive the bus to that final breath.

The turnover seems to come in spurts.  Sometimes, I won’t have a death for a few weeks, but then, others I am busy looking for labels for the manila folders that I keep (ok, I am a little ocd) in order to stay organized.  Not wanting to waste a folder simply because I would have already used my trusty label maker to make the last resident’s name.  As I pulled that person’s name off of the folder, I realied that the madjesty of life is never fully appreciated.  In some ways, we are all like that piece of tape.  Sometimes, everyone is worried that we will become that last piece of tape, just pulled off and discarded.  Maybe in some grand galactic scheme of things we are just tiny grains of sand. But, each of us has a purpose and a path – even the tiniest of ripples in the ocean water joins with larger movements and becomes a wave.  Therefore, we are all important and should be valued.  We each have our own destiny.  That destiny impacts the entire universe.

The Problem With Caring

While I’ve thought of blogging a lot the past few days, it’s been so busy that I haven’t had the chance.  Hospice has really become something that I feel really passionate about.  As much as the bosses say that you have to have boundaries, how does one have boundaries when they are dealing with folks whose boundaries have been shattered?  The moments where people come to terms with their own fate, those are moments that really have zero boundaries.  To be able to be that nurse that they need, I can’t really worry about things like boundaries.

I think that people teach you their boundaries the first time you meet them.  I always know how things will mesh with a patient and their family within the first 5 minutes of meeting.  Sometimes, the air is so thick with tension – often fear, sometimes anger, sometimes defeat, that I get that I need to sort of become a backseat driver and allow them to guide how things will progress.  Then, of course there are the wonderful folks who greet me at the door and before I can even utter my name I am engulfed in the most thankful embrace.  In that hug, most of the time, I can almost hear that family member let out a giant sigh of relief.  Its as if a bad situation suddenly became a bit more manageable.

Of course with hospice, my time with patient is often pretty limited.  I love to savor every moment that I have with them and their families.  I want to hear the story of how my patient met their spouse.  I want to feel their excitement as they tell me about how they surprised their kids with a trip to Disney.  Bring me in.  Help me feel like a surrogate member of your family, who is there to drive the bus to that final breath.

The turnover seems to come in spurts.  Sometimes, I won’t have a death for a few weeks, but then, others I am busy looking for labels for the manila folders that I keep (ok, I am a little ocd) in order to stay organized.  Not wanting to waste a folder simply because I would have already used my trusty label maker to make the last resident’s name.  As I pulled that person’s name off of the folder, I realied that the madjesty of life is never fully appreciated.  In some ways, we are all like that piece of tape.  Sometimes, everyone is worried that we will become that last piece of tape, just pulled off and discarded.  Maybe in some grand galactic scheme of things we are just tiny grains of sand. But, each of us has a purpose and a path – even the tiniest of ripples in the ocean water joins with larger movements and becomes a wave.  Therefore, we are all important and should be valued.  We each have our own destiny.  That destiny impacts the entire universe.

A gut is not always a bad thing

Intuition.  A sense.  A feeling.  Gut instinct.  God’s way of talking to you.  The Universe trying to point you in the right direction.  Nurses are particularly keen to this sort of thing.  For the most part, we can probably eye a patient up and get a sense of things to come.  That’s part of the whole nursing package.

It’s not always something that is spot on though.  For example, there was a patient admitted to hospice last week that I thought for sure would be on hospice for an extended period of time.  Found out yesterday that he sadly has already passed away.  To say that I was a little shocked would be an understatement.

But, then there are moments, that inuition is spot on.  Without revealing too much, had a patient not doing so well.  Heading over to make a visit to her on Friday because even though she had already been seen for the week, I just felt like I had to see her again.  Her decline was rapid.  Even as I was sitting in the parking lot of her facility, a fellow hospice nurse was telling me that I really didn’t have to make that visit.  “She’s already been seen… no need for you to go..”  I could have just left, but, something was pulling at me to go see her.. Can’t explain… just a feeling.  Sadly, she passed away today.

When one of our patients pass, we all are notified.  Today, when the notice went out, the nurse I had been talking with on Friday said, “Boy, thank goodness you went and made your visit on Friday.”  I told her that I just felt like I had to… and she, one of the most experienced nurses I know said “You will make a fine hospice nurse”.  One of the best compliments I could have heard because I am still a bit nervous about it all..

I can’t explain what it is… I can’t explain how it works.  It just is.  It’s one of life’s mysteries… My kids would sure love an explanation because it’s typically what makes me call them out when they are lying.  It’s not anything I have control over.  I observe, I watch and I listen to what that little voice tells me.  Personally, I do feel it is God talking.  Whatever it is, I am thankful for it every day.