The Least and The Most

I once read something that said that the rich stay rich by never giving anything away.  Does that mean that the poor remain poor by giving everything away?  Is generosity a trait that is only possessed by those with less?  I’ve thought about this a lot… It seems that those with the least are more apt to give more. But, why?

The most adorable elderly woman offered me some of her cup of ice cream today.  Her worldly possessions were so few.  She is living out her days in a facility, her clothing obviously second hand and her only access to food is what she is given.  Yet, as she smiled at me with biggest toothless grin, she lifted up her white plastic spoon and offered me a few bites.  She seemed so disappointed when I told her that I was ok.  My friend with her disheveled white hair and trembling hands was more upset with my rejection of her food than she was with the cup load of pills that her nurse brought in.  While I was not there to visit her as she is not a hospice patient, she became the subject of my thoughts.  Why is it that when you have nothing it is everything that you want to give?

His apartment was so sparse.  It was in a neighborhood that even during the day most would be scared.  The furniture consisted of a cot and two of those hard plastic chairs that could normally be found on a porch.  The windows were so old that as the wind blew, the whistling melody echoed.  He had become a hospice patient because for years he was unable to pay for his medications and his condition deteriorated to an irreversible state.  The irony is that now that he is in hospice, all of his medications are paid for.  His long hair was tied in a pony tail as he sat shirtless on his makeshift bed.  

As I sat on the cold chair, I noticed a small kitten eating from a worn plastic container on the windowsill.  The matching plastic container was filled with water, which the kitten enjoyed soon after.  The patient started telling us about how neighborhood kids found sport in tossing rocks at the numerous stray cats.  His stories were stopped only by his need to catch his elusive breath.  He talked about how he doctored multiple cats back to health because they would come to his window crying.  The heartbreaking part was that he admitted that there were times he would forego buying food for himself in order to be able to provide for all of the homeless pets.  “At least I have a roof over my head, ” he said nodding his head, “my belly might grumble, but it does it indoors.  They have no food and no shelter.  I can go a night here or there without food.”

Perhaps it is because those with little know what it is like to have nothing and they want no one else to feel that way.  It was like a video I recently saw… a man was conducting a social experiment and gave a homeless man $500.  He stealthily followed and captured his moves on video.  Fully expecting the man to go to the liquor store and buy mass amounts of alcohol, the cynical man was speechless when he saw the events.  The homeless man went and bought food, drinks and shirts for his fellow homeless folk.  He literally spent all of the given money taking care of others.  People talk about charity and write a check, but charity is what this man with nothing actually did.  If you have nothing, you can’t miss what you do not know about, but, you do know the pain of not having.  It’s just so ironic and painfully beautiful that those with nothing are willing to give everything.

The birds and the eel

It’s funny how life comes full circle.  Think about a young child – we love to take them to the zoo or to the aquarium in order to be amazed with what they can see.  We feed them to make sure they don’t make a mess.  We toilet them to make sure that they go.  Songs are sung to comfort them.  Sometimes, a bear or a blanket become the safest and most comforting things.  With all of those descriptions, one would think that I was really into pediatrics.  Sadly, I’m not.  What I have described are the exact things done and given to the elderly in many facilities.

Some facilities are nicer than others.  There are activities, outings, a low patient to caregiver ratio, the halls are decorated and they don’t feel so clinical.  As I was typing, I realized that those are some of the same things that I would look for if I was investigating a preschool for my child.  Will they be mean to my loved one?  Will they be able to watch over them when I cannot to ensure that they don’t get hurt?  Will they be able to continually stimulate their mind or will they get plopped in front of a tv?  See what I mean?  Very similar concerns.

This one Cadillac of facilities has several fish tanks with gorgeous fish.  There are floor to ceiling bird cages with all sorts of delightful birds.  There is a massive aquarium with the largest eel I have ever seen.  Now, to me, that eel is what nightmares are made of.  But, if I think about it from an elderly person’s point of view, it’s something that they can see, it’s large and bright and maybe they get lost in thoughts of freedom, just like that eel swimming so freely.

Sometimes, as I am assessing a patient, our eyes meet and it’s almost like I am pulled into their world.  Perhaps it’s my own worries and fears, but, it feels like I lose my breath thinking of the frustration and anguish they must feel.  Their bodies have betrayed them.  Those once nimble fingers that threaded needles are now bulky and awkward.  The feet that once held them up for hours as they worked in the mills now collapse with the slightest weight.  The loss of dignity.  The loss of identity.  The loss of control.  The loss of humanity.  The thought is searingly bad.

I guess that’s maybe why certain facilities have the things they do.  The ability to express themselves is gone.  Locked in a body that is steadily falling apart, perhaps the fish and birds grasp their attention enough to forget about their world for even just a moment.  Distraction.  Just as a toddler is distracted when they are in the midst of a tantrum, so too are their counterparts.  I guess the circle of life really is just that… a circle.  Keep them safe, keep them distracted and keep them….

I Wouldn’t… Would you?

Everyone talks about the benefits of a long life.  You get to see your children and your grandchildren grow and flourish.  But, is there such a thing as too long of a life?  I do believe there is.  Imagine seeing those around you disappear… You would be the only one of your siblings still alive… Your circle of friends has dissolved… Funerals are your opportunity to socialize because it seems that you attend them on a regular basis.. Get the idea?

There has to be a sweet spot… the length of life that allows you to fulfill all that you’ve wanted, but not so long as it would feel like death forgot you.  Living life depends on what one qualifies a fulfilling life to be.  Would being unable to complete daily activities be considered living?  Would you be happy with moving into a facility because it would be unsafe for you to live at home?  What about losing loved ones – spouses, children, siblings and friends?  Would you want to be the last one standing?

A patient who was over 100 years old looked at me today and said that he “just keeps living.”  With no local family and a declining level of cognition, he doesn’t really know how his life is right now.  There is not much that he can do for himself.  I found myself wondering, especially with his comment, is he really living?

If the days just blend away and you are unaware is that considered a life?  Some of my patients are so declined that they are almost waiting around for death to remember them.  A patient today told me that she was seeing “angels with horns”… Whatever the visions she was seeing, it was almost like her unconscious self was just calling her season of change to come.

People say that there is no beauty in death.  Think about the trees… they are arguably their most beautiful when the leaves are actually dying and falling to the ground.  The death of the leaves gives us such a glorious kaleidoscope of colors that causes us to step back and marvel at the beauty of their last chapter.  I am learning that this also happens for people.  The beauty lies in a life lived.  The beauty lies in the completion of a life cycle.  The beauty lies in their pain and agony of waiting for death to be gone.

A Few Days

Would think that a few days away and I would be able to not think about work.  That’s the thing about nursing though – there is always something… that takes you right back into your work world.  Not that these past days have been any sort of vacation, but, other times, I would be able to keep the lid on the vase of my work thoughts somewhat closed.  I find myself getting lost in memories of faces, reminders of details and then drawn back in.  I guess hospice will be just like that for me.

Was talking with a fellow nurse who I have known for years, but, lost touch with.  We worked together for a good while and spent a few moments catching up.  She told me about her hospice experiences.  “I couldn’t get away from it”, she said “I would go home and cry every time I had a death”.  Her hospice career lasted 6 months.  It was a great experience, but not one that she would ever be able to resume.

I happened to be at my former hospital unit a few days ago.  My husband was with me and saw all of my past coworkers.  Everyone was enthusiastically asking me how I liked my new job.  I am pretty certain that I said “It’s ok”, or “I am getting used to it” as my stock answer.  My husband, who is so sweet, told me that if I was so uncertain of the new position then I should head back to the hospital.

The problem is, I am uncertain.  It’s an entirely different nursing experience.  I can feel my heart still beat out of control when I think about how I will react to my first death.  Having been a hospital nurse for so long, it’s such a different perspective.  I did not always think about death, because I was too busy doing everything in my power to prevent patients from slipping to the other side.  It was a duel with death, but, it always seemed that if I thought too much of it, that I would be giving it some sort of advantage.  Now, it’s all I think about.  How will I help a patient face it?  Will I support the family in the right way?  The path of thought is different….

I’m not thinking about being on the winning end of the death battle.  I’m thinking about how I can help my patient courageously transition into the unknown.  Will I be strong enough to help them?  Can I honestly be that guide for someone who is still trying to keep one foot in this world and one foot in the other?  People say that death is just a season of one’s life.  Would have to say that I do believe that for most people, it would be the winter of their lives.

Normally, I would try to bottle up these types of feelings … stuff them away until the cork of the bottle precariously held on.  I keep mentioning how I am next to patients and families helping them face the unknown future.  My big secret is that they are also next to me as I face uncertainty.  It’s something that I fear.  They just don’t know that they are, while my role is so clearly defined to them.  The question I still don’t have the answer to is, who is carrying who to a better place?

Among The Thorns

There are people ailing everywhere.  In the rich part of town, in the poor part of town, in the city, in the country… you get it.. Everywhere! People are also able to stay in their homes for longer periods of time when they are ill.  Medical professionals travel to them and provide the best care possible.

Over the past couple of days, I have traveled to a more rural part of town and to the grittiest area of the scariest neighborhood.  Walking into a run down apartment building, with graffiti on the front door and what looked to be years worth of dirt on the floor, I was not sure what to expect.  Still orienting, was super glad to have another nurse with me.  I’m not normally scared of places like that.. When I was 18 and a know it all, I moved to NYC and lived in an apartment building that wasn’t far off in appearance from the one I was walking into today.  The subway tiled white portico heavily spider webbed in grime and debris.  The hallway walls were once white but have since grown to be a yellowish color from years of cigarette smoke.  Apartment doors were missing numbers and a few looked like they had been attacked by hungry beavers… shards of wood left in the place of a once sturdy door.  Luckily, our destination was on the first floor because the steps leading up looked to be straight out of a haunted house.

We were greeted by our patient.  You see, not all hospice patients are laying in bed and on their last breath.  Cheerful and pleasant, he invited us in and motioned for us to sit in the two plastic lawn chairs.  As my preceptor did her assessment, I began looking around the room.  It was a tiny little place.  Most decent closets are bigger than the living room was.  The patient’s glasses reflected the two sources of light in the room – the TV and a string of Christmas light surrounding some Native American art.  There were no doors separating the rooms and I could see through the makeshift curtain that a tiny kitchenette and the bathroom could be found on the other side.  The air in the room was heavy with the smell of cigarettes – so heavy it felt like it made its way into your pores.  Hey.. I guess if you are on hospice, there’s no reason to worry about the dangers of smoking.

As the patient talked, I was struck by the kindness of this man.  He spoke of taking care of neighborhood stray cats – he would put out food and water.  You could almost feel his sadness as he told us stories of people being evicted and they would just toss out their cats.  This man, who had really nothing, was feeding these poor animals.  This man, who didn’t have enough money to pay for his medical care, was taking what he could to help the animals.  His sadness was halted abruptly when the topic of conversation switched to his grandson.

His face lit up as he talked about babysitting the little toddler.  The child and pap would dance and eat Popsicles together.  He talked about seeing the little guy grow up and how great of a man he would be.  As if he had a crystal ball, he knew that his grandson would go to college and that he was trying to put away what he could for it.  In that moment, sitting in that tiny apartment in what most consider the worst part of town, I realized that people who have so little material possessions are the first to want to share them.  It’s almost as if compassion and sharing diminish with the more we get.  This man really had nothing, but was giving everything.

He knew his prognosis, yet, he was worried about those around him.  He worried about who would take care of his cats and all the strays.  He worried about how his girlfriend would survive without him.  Not once did the talk about himself.  Not once did he try to illicit sympathy for where he was living or for the road that he was walking.  He didn’t miss things because he had never had them.  The more we have, the more dependent we become on things for happiness.  The more we have, the less we give.  It is sometimes the poorest people who are the most generous and the happiest.

As we got into the car, the other nurse was complaining about how she had to get home to change her clothes because they were pungent with the smell of old smoke and a thick musky odor.  Crazy as it may sound, I wasn’t so much in a rush because the smell was of a man who reminded me that being generous isn’t about how much you have but rather your willingness to give.


That Smile

The day began really early today… Much earlier than I would like.  The coffee didn’t have a chance to even make it to my gut before we were on our way.  We were going to see a patient… younger who had been diagnosed with ALS.  As typical for me, I was full of nervous anticipation.  It’s a good thing that the nurse I was with was a morning chatterbox because her ongoing conversation kept my mind from wandering.  It was a long ride to get to the patient’s house, but we had to get there before her partner left for work because he wanted to be there with her.

Her smile caught me from the moment I entered her house.  She has lost use of her fingers… able to just have very gross movements of her arms and legs.  Her thumb was the only finger she could really use and that was used to give a thumbs up when she agreed with something.  To try and quantify the vortex of emotions that engulfed me would be futile.  I’m not even sure such words exist in any language.

My heart broke for her as she tried to communicate, sometimes without much success.  As the disease was ravaging her body, she was losing the ability to control any of her own shell.  A far cry from being heavy, it took 3 people to help move her.  I kept putting myself in her shoes.  How would I feel if words no longer were able to exit my mouth?  Would I want to be around if I could not reach for my own glass of water?  I am sure that she has her moments of faltering when no one is around, but, at that moment she was brave and full of joy.

That smile… her laugh that sounded like it was rattling her soul.  We teased her about causing trouble and doing the shimmy shake to avoid pressure sores and she would close her eyes and laugh.  It’s hard to fathom that 3 months ago, she was just like me.  She could walk and talk.  The decline was so rapid that not her nor her partner have had any time to process it all.  Would anyone be there for me if I couldn’t wipe my nose or have another spoonful of food?  Yet, like her knight in shining armor, he saved his maiden from the toils of her condition.  He has to feel helpless because he can do nothing to stop the deterioration of his love, but, aside from leaving for work, he was ever present.

Are we really more than just our bodies?  With so much emphasis on our physical appearance, can our souls be just as important?  This sweet woman gave me the gift of understanding that it is so.  Her mental capacities are totally intact.  She is staring down the tunnel of the unknown and doing so with that smile.  It’s my job to get her to that end of the tunnel with empathy, compassion and dignity.  That’s the least I could do to thank her for that smile…..

Day One

Nervous anticipation, fear, uneasiness, sadness and an eagerness to learn the ropes.  I’d say all of those things smooshed together is exactly how I felt this morning.  That feeling of uncertainty because I don’t know what I am doing is almost overwhelming.  Sure, I can assess a patient – but, I look for signs of life and not signs of impending death.  Guess, what?  That’s how the cookie is going to crumble from now on.

The patients today were all very sweet and kind… some older, some not so old.  All pleasant and happy to see their usual RN (I was kind of an added bonus.. a little tagalong.. Kept having to say “I’m a new hospice nurse, but, an old nurse in general”).  I wasn’t sure how to really introduce myself or what I should and shouldn’t say.  I let the usual RN take the lead.  Some had family around… some were in a nursing home.  Some could talk… some could not.  One was actively dying… I don’t imagine that she will make it through this evening.  She was staring off… like those about to pass do… What was she seeing?  Do you see whatever awaits us in the afterlife as you are dying so that you aren’t fearful?

I’m not sure the answer to that question and I don’t know that any of us, with any degree of certainty, will be able to correctly answer it.  I would love to imagine that it is that way.  Her daughter was next to her.. telling her that she would be ok and that it was ok for her to let go.  Flashbacks flooded my mind, because about 4 years ago, I was doing the same.. not as a nurse, but as a daughter.

I don’t know how people do it.. How they are able to compartmentalize things… How they are able to not bring their own personal experiences into things.  I can tell ya’ll right now that it is not that way for me.  The rich tapestry of experiences that I have had will play into being a hospice nurse.  In a lot of ways, I know that it might make me a better one because I will be able to understand the feelings, be they good or bad, that my patients and families are experiencing.

So, my first real day as a labor and delivery nurse of death is complete.  Life is such a fleeting idea.  It sounds cliche but this makes me want to hug my loved ones harder.  It makes me want to not give up.  I don’t just think hospice nursing will make me a better nurse, but, it will make me a better person.

The Night Before

The new journey starts tomorrow.. Exciting first line, right?  Catchy… Well, it’s true.  Tomorrow my career really takes a totally different turn.  You see, for the past close to 10 years, I have been a nurse.  I’ve been a med surg nurse, I’ve been a step down nurse, I’ve been an ICU nurse and finally, I was a perianesthisa nurse.  Tomorrow, that kind of nursing is gone.  You see, all this time, I’ve been trying to save lives.  Starting tomorrow, I’ll be helping lives let go.

Hospice nursing wasn’t always something I was interested in.  Anyone who knows me knows that I loved being the nurse at the head of the bed when something was going south.  Analyzing the heart rhythm, making snap decisions about what meds to give and thinking quickly in order to try to save that precious soul that was in trouble.  I still do get that jolt of adrenaline thinking about it.  How am I going to go from the nurse that dueled with death to the nurse that holds the hand of a person who is willingly making that journey?  The truth is…. even I don’t know.

My favorite aspect of nursing was always the patient interaction.  I loved working nights when the patient’s needed bathing because I could spend time with them and just let them open up to me.  The stories I have heard, the laughs I have had and the tears that we have shared.  There is nothing like being that support for a person in their darkest hours.  My nursing practice always included actually sitting on my patient’s beds, holding their hands and actually trying not to speak but to listen.

In my mind, that’s what will be the part of hospice nursing that will suit my nursing the best.  Just listening… to patients, to families and to coworkers.  This could be the path that leads me to my more precise calling.  Nursing is and always will be my calling, but, maybe hospice nursing will be my particular niche.  I do wonder, however, how a girl who is scared of death can help guide others along that journey towards it?

It’s kind of like being a reverse labor and delivery nurse.  They take a pregnant woman on a journey to birth and I take someone on the reverse journey.  A labor and delivery nurse cannot tell her patient exactly what the journey of parenthood will be like.  In the same vein, I cannot tell a dying patient what and how to expect this passage will go.  I have no doubt that it will test my fortitude, my emotional and mental boundaries and my capacity to always want to heal.  Perhaps though, healing is exactly what I will be a part of.

Not all of us will be lucky enough to die exactly how we would like to.  Hospice patients are given that benefit.  They choose to pass at home.  They can choose to be surrounded by loved ones in their final moments.  That is something that will not be the same for the vast majority of the population.  These folks have decided that they have come to terms with their illnesses and choose to have a quality of life rather than a longer quantity.  The only word I can use to describe that is brave.

So, come on this road with me.  Hear the lessons I learn and feel the emotions that I do.  This blog will be candid.. it will be raw and it will be emotional.  This is one nurse’s journey into the unknown…..