PURE LOVE

“Stephanie”, sixty-six, was diagnosed with Alzheimer’s Disease eight years ago.  She lives with her husband, “Stan”.  As Stephanie’s needs increased, Stan retired early in order to take care of her.  Funds are limited, but Stan does not want her to be anywhere else but home.   They cannot afford caregivers, but so do need help.  

Stephanie no longer speaks, but mumbles words.  Her words make no sense, but Stan so lovingly knows what she needs or wants.  It is so beautiful at how attentive he is to her.  His primary focus is caring for her.  His soft words to her, along with his gentle touching her to help, is so amazing. 

When speaking with him about Stephanie, I got goosebumps as could so deeply feel his love for her.  They live in a small one-bedroom apartment without out much glitter, but I so strongly believe they are millionaires when it comes to love and devotion. 

Stephanie doesn’t quality for hospice, but we will make sure her doctor gives us a Palliative Care referral for the needed support.  I wish our agency could offer more.  Stan does appreciate any help that comes along.  Blessings to him for always. 

ADDENDUM: A few days after this visit, I went back with our nurse to admit Stephanie to our Palliative Care program. 

PURE LOVE

 

He called on us to make a visit.

He wanted to hear all about hospice.

He knows he needs much more help.

“Please, what can you do for us?”

 

She was diagnosed with Alzheimer’s Disease

when she was only fifty-eight.

Her disease has progressed dramatically

over the course of these past eight years.

 

Her gait is so wobbly; she needs him by her side.

She no longer speaks, but mumbles.

Her confusion continues to increase,

but he lovingly still knows what she needs.

 

They have four children; who don’t help much.

One is estranged; another committed suicide;

while two others “just don’t understand”.

The two of them are so truly alone.

 

Recently he’s been to the Emergency Room twice

as his stress and anxiety has intensified.

They can’t afford hired caregivers;

while he strongly opposes putting her in a home.

 

When I asked him, “What keeps you going?”

He answered softly with such pure love,

that came from the deepest part of his heart,

“My will,

               My love.”

 

 

BUT THEN

The hospice nurse and I went out to admit, “Terri”, fifty-eight years old.  Terri was diagnosed just five months ago with Brain Cancer.  Terri lives with “Luke”, her husband, on their twenty-seven-acre ranch.  They live on a long dirt road surrounded by so many trees.  It is so relaxing and beautiful. 

Terri and Luke are both very spiritual.  They look at life in a calm, realistic manner.  Terri has accepted her status and poor prognosis.  It is her strong belief about afterlife that gives her comfort.  She will talk so beautifully about her beliefs, but now and then, will have normal questions about her terminal journey and afterlife.  

Terri has recently been receiving chemotherapy on a routine basis.  She takes it five days in a row and then will abstain for twenty-two days.  Then it all begins again.  Terri says that the side effects have been “horrific”.  She softly added, “The side effects are worse than the illness.”  She has chosen to stop her chemotherapy as wants comfort not discomfort. 

Terri has had to go on disability from her job because of her illness.  She was a case manager for mentally ill adults.  She jokingly said her job title was, “Domestic Goddess”.  She and her husband have worked hard their entire life.  She has earned her beautiful home, along with having a wonderful family.  Terri shared, “We have all of this that I won’t be able to enjoy any of it for long”.  

She, like most of us, is struggling with the reality of her fate.  We all are logical beings and look for logical answers of which there are none.  I know she will find a way to do it Terri’s way; the best way to go for her. 

BUT THEN

 

She lived her first fifty-eight years

completely healthy and strong.

She kept herself in good shape;

walking, biking, along with some yoga.

 

Then, surprisingly, just five months ago,

everything dramatically changed

as she was diagnosed with brain cancer,

which drastically altered her life.

 

She is so realistic about it all though.

She’ll talk calmly about her weight loss;

the side effects of chemotherapy;

losing all of her blonde hair.

 

But then; she’ll point to the photos around;

their seven children and seventeen grandchildren.

She’ll look out the side kitchen window

where their five horses are grazing on their land.

 

She has strong spiritual beliefs, which comforts her.

She knows she is going to a better place soon.

But then, “What is this all about?

               Why is it happening to me?”

 

The cancer is slowly winning the fight.

She has no appetite and has lost a lot of weight.

She is now having seizures on a daily basis

while becoming weaker and needing more sleep.

 

She has common doubts that arise at times.

She has many questions with no answers to be found.

But then, all deeply know she will embrace her journey fully;

as she will peacefully, as always, do it totally her way.

 

NORMAL

Grief is a powerful emotion.  It is tremendously deep and never easy to ignore.  Each one of us grieves differently from others.  We also grieve differently with each loss.  We immediately think of death when thinking about what folks are grieving about.  There are other losses besides death that we all do experience.  For example, our best friend moves away; a parent’s divorce, the selling of your childhood home. 

Emotions quite often come unexpectantly.  So many think that there is a “normal” or correct way to grieve.  Quite often, patients and families feel they are doing it all wrong.  I will share with them, “There is no right or wrong way to grieve.  Feel what you need to feel and know it is called “normal” and then, process it in a way that works for you.”  That, also, is such a personalized emotion for each of us. 

I believe grief would be so much easier if we had a ten-step listing of what steps to take.  Unfortunately, there is no such guideline.  I meet so many amazing people during the course of my work day.  I am never surprised, but then also, have a sense of admiration when experiencing one of those moments.  They do come frequently.  So, is that normal?  I don’t think normal can really be defined as we are all individuals and are feelings are just as individual and personal. 

Maybe normal is to be where you are, without hurting anyone.  Feel what you need to feel; accept it; find your supports and move on.  Supports are often family and friends, but also for some; gardening, journaling, reaching out…..   I so believe all of this, although personalized, is one hundred percent normal for each of us.

NORMAL

 

What is normal?

Can it be clearly defined?

We hear words like regular or standard.

What do those words really mean?

 

I meet so many wonderful patients;

so many remarkable families;

whereby, I am seldom surprised

as all are grieving such an amazing loss.

 

But then, each person is so different

regarding their feelings of such a profound loss.

Emotions run so deep; they are so powerful;

almost impossible to ignore.

 

She is almost ninety years old.

She’s been independent for all those years.

But now, her heart is wearing out;

impacting her tremendously.

 

She has accepted her situation as clearly said,

“I am ready to let go.

I’ve had a very good life.

               I know my family will be okay”.

 

I am not astounded by her words,

while I so admire her strength.

She touches me deeply,

               but then, I am not at all surprised.

 

Is this normal?

Yes, to her,

               it truly is.

 

 

TO LET GO

“Theresa,” sixty-eight years old, was diagnosed with leukemia ten years ago.  She went through radiation and chemotherapy at that time.  Over the past ten years, she had been managing quite well.  All that changed about four weeks ago.  Her cancer returned with vengeance.  Five days ago, she was hospitalized due to slurred words and confusion. 

She was discharged home today from the hospital.  It was then when we were called.  Theresa is now bedridden, eating and drinking very little and sleeping most of the time.  She is very frail due to extreme weakness.  

The hospice nurse and I met with the patient’s husband, “Jim”, and several other family members in the kitchen.  We explained hospice support and philosophy.  The patient wasn’t involved as she was asleep in the hospital bed in a spare bedroom.  When Jim, the hospice nurse and I walked into her room, she was awake.  After I introduced myself, she immediately started talking to me.  I felt that we spiritually connected as the conversation was so focused on just the two of us. 

She has such amazing insight while wanting my truth.   There really aren’t many clear answers when asking questions about dying.  Theresa words expressed her beautiful soul.  In the end, maybe that is what it is all about.

TO LET GO 

 

I have made a lot of condolence calls

during the course of my hospice career.

I offer comfort and support to the family

as grief is mighty and remarkably strong.

 

I am not surprised when I hear;

“He left at the perfect time.

She knew the best time to let go.

He waited for our anniversary to come.”

 

He came onto hospice in the summer.

He wanted to live to the next calendar year

as his wife’s benefits would be so much more.

Surprisingly to us, he died four hours into the new year.

 

He wanted to be by his son’s side

when it was his time to say “Goodbye”.

He sat by the hospital bed giving him permission to go.

Ten minutes later he was gone.

 

She was diagnosed ten years ago

while managing quite well;

although this past month has been difficult,

as her disease is now in control.

 

She is aware at times with some confusion,

while not eating or drinking much at all.

She is bedridden due to extreme weakness.

It likely won’t be much too long.

 

She said to me, “I am getting ready to die”.

I then asked, “How is it that you know?”

Which brought her question,

“Do you know when it will be?”

 

“When your time is near, you will clearly know”.                             

At the perfect time, be it day or be it night,

you will deeply be aware, that this is my time;

my sacred time; my hallowed time;

               to just simply let go.