WISDOM

The hospice nurse and I met “Nicholas” today.  He is thirty years old and has suffered from Cerebral Palsy his entire life.  He was diagnosed at nine months of age.  He is only sixty-nine pounds and gets his nutrition through a feeding tube.  Nicholas was discharged home from the hospital today.  He has several infections that the typical medication techniques are no longer working. 

Nicholas’s parents, “Sid” and "Norene”, are totally devoted to their son.  They have no other children and have the ability to give their son all that he needs.  They have attendant care through the county and state which helps them get much needed respite. 

Nicholas has been in a recent decline to where he is becoming a bit weaker and sleeping more.  The antibiotic treatment no longer is working.  Our hospice medical director believes Nicholas may only have a few weeks to live.  His parents have very strong spiritual beliefs along with an excellent support network of family and friends. 

Seeing Nicholas for the first time, I immediately saw his beautiful heart; along with a wise old soul.  I truly believe he knows the answers to what it is all about.  He is non-verbal, but when one speaks to him, he so truly and deeply listens.  When we were filling out a Physician’s Order for Life Sustaining Treatment (POLST) form; Sid and Norene would ask their son each of the questions that the form asks.  Nicholas was agreeable to having no extraordinary treatment.  With that option there are two choices of treatment; Selective Treatment or Comfort Care.  Hospice is Comfort Care although we do treat for symptom control and comfort.  Nicholas strongly chose Comfort Care; using his communication technique.  That strong answer told me that he is right where he needs to be.  Hospice’s goal is always to follow the patient’s wishes.  There is no right or wrong answers when it comes to these difficult choices.  I truly believe that Nicholas is one of the most insightful and strongest one around. 

WISDOM

He has lived with Cerebral Palsy his entire life

as was diagnosed weeks before his first birthday.

His parents loved him that much more,

knowing how special his life could be.

 

They surrounded their life around his care.

They gathered plentiful help to keep him strong;

caregivers, therapists, doctors and aides.

Their son thrived under such amazing support.

 

He understands English, but is unable to talk.

He will listen, though, so carefully to your words.

He communicates so clearly with his eyes;

shifting them left for “yes” and right for “no”.

 

He is thirty years old and oh, so very small.

He is under seventy pounds;

but I immediately saw his heart and his depth.

He is truly an amazing, wise old soul.

 

There are no logical answers to

“Why does he have to suffer so?”

We spoke about he being a teacher

as he is educating us all on how to live.

 

There was a poster in his bedroom.

It so describes what keeps him strong.

I believe it is his motto; his driving force;

where boldly displayed it simply states;

         “Never, never quit.”

 

NO MATTER WHAT

  

“John”, seventy, suffers from lung cancer that has spread to his bones.  He underwent a clinical trial four months ago and has been in a slow decline since that time.  John lives about five hundred miles from his youngest daughter, “Kelly”.  John knew his health was slowly winning the battle and wanted to see his daughter while he still was able to care for himself. 

 

After driving about two hundred miles, John became so weak that he could drive no further.  Kelly drove down to pick up her dad and brought him to her home that same day.  Since he has been in Kelly’s home, John has become weaker and needing more and more help with his daily needs. 

 

Kelly has had some recent drama in her life, but sees life events as random experiences.  She has an amazing, positive attitude about life.  Her major focus is about her dad and his needs.  Kelly said that she and her dad have always been close.  It is that unconditional love that is helping both of them to get through some difficult times. 

NO MATTER WHAT 

  

He was driving up to visit her. 

An eight hour drive at most. 

Halfway there, he could go no further. 

She made sure he got there safe. 

 

Her primary focus is on her dad. 

He’s been sick for way too long. 

He came up to visit for a while, 

but now it is for the time he has left. 

 

She spoke about losing her home 

in a major forest fire just three weeks ago. 

She lost everything she owned, 

but sees it as a positive event in her life. 

 

“My home did not have a downstairs bedroom. 

This new rental home has just that. 

This fire may have been a blessing 

as now my dad can stay here in comfort.” 

 

She has just started chemotherapy treatments 

as suffers from metastatic cancer herself. 

“God must believe I am strong 

         in order to handle these things.” 

 

She doesn’t focus on her or her dad’s cancer. 

She sees it as a random life event. 

She has had a lot of drama these past few weeks, 

but her primary focus is to unconditionally love her dad 

         no matter what. 

 

CHECKLIST

 

 “Jennifer”, thirty-nine, was admitted to hospice today.  Jennifer was diagnosed with lung cancer two years ago.  She stopped her last chemotherapy and radiation one week ago as her cancer was continuing to grow.  There are no further treatment options for her.  Jennifer lives with her husband and four young children all under the age of eleven. 

Jennifer has been fighting her disease the best way she knows how.  Her philosophy is “Do all that you need to do to succeed”.  She likely met hospice eligibility a few weeks ago, but told her physician, “I will only go onto hospice when I am imminent.”   Reality hit Jennifer three weeks ago when she suddenly became short of breath.  Along with the struggle to breathe, she also became so very weak.  It was then when the reality of her status and prognosis became real to her. 

We all want control in our lives and want to do, what we need to do to feel that power.  Jennifer made a list of all that she felt she needed to do before she dies.  I so admired Jennifer as she told her truth.  She let us know so clearly what she needed and how she thinks.  It so directs our hospice staff down the path to where we truly can help patients and families. 

Being so young, here biggest worry is her four children.  Speaking to them so honestly has given Jennifer the courage to let go when her time comes.  I felt so honored to have met her.  Jennifer is an amazing individual with a huge heart and loving soul.   I wish her all the best. 

ADDENDUM:  Jennifer died two days after our Admission Visit.  I do not think Jennifer was surprised as instinctively she knew.  All of the rest of us were totally surprised.  She definitely did it her way, which is the most perfect way of all.

CHECKLIST

 

She was diagnosed two years ago.

Radiation and chemotherapy to no avail.

The cancer has now metastasized.

No more treatment to be done.

 

She is not yet even forty years old.

Four young children in the home.

A husband who is devoted and by her side.

She had not been even close to letting go.

 

Three weeks ago, all that changed.

She made up a personal checklist

listing all that she needed to do

before her time here on Earth was done.

 

She hadn’t yet told her parents,

even though it has been two years.

She was trying so hard to protect them;

“In our Asian culture, cancer is taboo.”

 

She spoke to her parents last weekend.

She’s not quite sure how much they heard.

She then gathered her four children around,

telling them directly that “Mommy is ill.”

 

This morning she checked off her last task.

She wrote down all of her passwords;

giving her husband the completed list

easing his access into her accounts.

 

She so knew what she needed to do.

She accomplished all of that and more.

She spoke of a strong sense of relief,

“I am now truly ready to go.

         I am at peace.”

 

MANY TEARS

"John", eighty-four, was diagnosed with Bile Duct Cancer two years ago.  He underwent radiation treatment which helped him for a while.  Two weeks ago, he caught an infection which brought him to the hospital.  The hospital treated the infection to no avail.  John became septic.  He started to have difficulty swallowing and was eating very little.  The doctors discharged him home to hospice.

John and his family are from Pakistan.  When the hospice nurse and I walked into their home, we were surrounded by fifteen family members.  About a third of them spoke English, while the others did not.  Two of John's sons were the primary contacts for hospice, although only the youngest son was fluent in English.  The eldest son knew a few words and could probably make out a gist of what we all were saying.  

Many of the family members; adult and children; were tearful as all are starting to realize the seriousness of John's disease.  The eldest son sat near his father, who was in the hospital bed.  It was obvious how observant he was in trying to grasp the conversation.

When he walked me out to the front porch, I was so surprised by his response, but then felt so honored and humbled as he trusted me enough to know that I would understand.  What a beautiful gift he gave me.  It was so rewarding and I felt so honored.  Hospice work allows me to witness pure life.  Thank you really does not capture the appreciation of how it so deeply makes me feel.  But then, thank you all.  

MANY TEARS

Many tears flowed today

as he just returned home.

His hospitalization left him weak.

They all know it won't be long.

Of all the family members there;

only a few spoke fluent English.

I tried to easily explain the hospice program

while giving them comfort and support.

The two sons were the primary contacts;

although only one completely understood.

The eldest son knew only a few English words;

but I so hoped he knew how much we cared.

I spoke to the young children about their emotions.

I said that there are no rules.

It never is easy to say goodbye.

Just allow whatever feelings to come.

The eldest son walked me outside to the porch.

He closed the front door behind him.

He started to say a few words;

of which sadly I could not understand.

Suddenly he burst into tears.

He no longer had any words.

I hugged him and held him tight.,

while softly saying it was okay.

His tears showed me his true heart

for a father he loved so much.

Communication between us

suddenly became so clear

         simply because

                        he cried.

GRANDMA

 

 

GRANDMA

 

“Reggie”, eighty-five, suffered from heart disease.  He was widowed and lives alone in a senior apartment.  He has multiple family members residing locally.  All were so devoted to him and to each other.  It is an amazing, supportive and loving family.  

Grandpa Reggie has been in a recent decline these past few weeks to where he is eating so little and sleeping a lot more.  Family said that he is becoming so much weaker as well.  Being aware of his increasing needs, two of his daughters and three adult grandchildren all were rotating checking in on him throughout each day. 

This morning his granddaughter found him lying right inside the front door of his apartment.  He was unresponsive while lying there.  She called for an ambulance and Grandpa spent most of the day in the Emergency Room. 

Reggie’s heart was failing.  The doctor recommended that he discharge home with hospice coming in.  The hospice nurse and I went out this afternoon to admit Reggie to our program.  Throughout our visit, Grandpa was lying asleep on the couch nearby. 

The hospice nurse and I spoke about the end-of-life process and what to expect.  Grandpa would talk now and then while appearing asleep.  I spoke about how patients at times may have one foot in Heaven, while the other foot is still here on Earth.  The granddaughters strongly felt that Grandpa was talking to Grandma. 

It gave the granddaughters a sense of peace.  They are sad that he won’t be around much longer, but felt happy that he again will be with Grandma.  She has come to escort him home.

GRANDMA

 He’s become so much weaker

these past two to tree weeks.

Family members check in on him daily.

to make sure he is doing alright.

 

This morning they found him down

right inside the apartment’s front door.

He was confused and so terribly weak.

The ER recommended home with hospice.

 

He has been sleeping so much more

while eating so very little.

He has recently told his family,

“I am ready.  I am at peace; I’m tired.”

 

We went out this afternoon to admit him to hospice.

We met his two granddaughters, who loved him so.

He was asleep on the couch next to us.

Not aware at all of why we were there.

 

Suddenly he started to say some words.

His eyes were closed and we couldn’t understand.

Grandma, his wife, died four years ago.

The two granddaughters believed he was talking to her.

 

Immediately I felt a soft presence embracing my soul.

I truly believe they saw her through me

when one granddaughter, assuredly said,

“You so remind me of my Grandma.”

 

Grandma was nearby to escort him home.

To help him tell the family, “Goodbye”.

She came through me, I so believe,

to comfort her family and to tenderly again

         tell Grandpa “Hello”.