ST CHARLES

“John”, eighty-six, suffers from end stage cardiac disease. John was admitted to the hospital yesterday with shortness of breath. John told his doctors that he is done with any further treatment and wants to have comfort measures only. It was then John’s doctor made a referral to hospice.

John lives with “Nellie”, his wife of sixty-two years. It is so obvious how much John loves Nellie. John said that he had no fear about dying as has strong Catholic beliefs of God and the afterlife. He knows that he will be okay. John’s only concern is about Nellie. I told John that we will make sure that Nellie will be okay as hospice follows for thirteen months afterwards. John gave me a big smile and squeezed my hand.

John and Nellie have three sons, of which two live out of state. Charles, their youngest son, lives with his parents and is the primary caregiver for both. Charles owns his own mailbox business and took a day off today to meet with us. Charles knows his mother can no longer care for his dad and, with help from the hospital and hospice, we are transferring him to a skilled nursing facility today.

The nurse and I initially met Charles alone out in the hallway. Charles gave both of us a “heads-up” about his mother’s outbursts. When we walked into the hospital room, Nellie immediately got up and stalked out of the room while sarcastically telling Charles, ”It is obvious how you don’t care what I think.” The nurse and I explained our hospice program to Charles and John, while Nellie stayed sitting outside in the hallway.

When it came time to sign the admission paperwork, Charles and I walked outside to find a sitting area. When Nellie saw us, she immediately got up and followed us to a small conference room. I started to educate Charles about the paperwork and where we needed his signature. Each item I explained, Nellie would complain with sarcasm and paranoia. Hospice is totally covered by one’s insurance. With Nellie’s short term memory, she would forget our conversation within minutes, thinking we were selling her some unneeded insurance.

I later asked Charles how he handles his mother’s wrath along with his dad’s declining health. Charles answered, “One day at a time. One moment at a time.” I told him what a beautiful job he is doing, It was then that I called him St. Charles. He seemed surprised, but then just glowed.

Caregivers do not know what a challenge it can be. Also, most are not aware of what a difference and impact they are making on a loved one’s life. When it is time for a caregiver to cross over, I know they will jump to the head of the line. My heart aches for Nellie and her stressful perception of her life. Fortunately she has a strong family who will continue to love and care for her. I wish her and her family peace.


ST. CHARLES
　
　

His aging parents are both struggling.
His dad with his body; his mom with her mind.
His heart is not working as it should.
Her confusion is causing paranoia and anger.

She just doesn’t quite understand
that she can no longer care for him.
He needs a lot more help now
so they are moving him to a facility today.

Her angry outbursts roll off her son’s back.
He knows it is not his mom inside.
He stays calm and listens quietly.
He has the patience of a saint.

He worries about his dad.
He knows he doesn’t have long to live.
He tries hard to focus on both of their needs.
Dementia only allows her to look at herself.

He’ll continue to be a dutiful son.
He’ll continue to do what he needs to do. 
He’ll calmly do the right thing for both parents
with patience, compassion, tolerance and love.
         St. Charles. 

YOLO HOSPICE

I was asked by our Human Resources Director today, to write a poem about hospice from the perspective of the employees. I grabbed a pad of paper and then asked her what led her to hospice. I then walked around the office jotting notes, while interviewing several nurses, a home health aide, two office workers and other staff. Hospice is a unique group of people who can talk about death and dying easily.

As a hospice worker, I am very selective to whom I talk to about my work as one never knows how unsettling it can be to others. It is so supportive to talk with co-workers as they understand the language. I have tried to figure out what brought me to hospice as many of us do. No one really has a clear answer. The similarity between us is that we all are drawn to this work. It is a calling. It is a privilege. It is such a blessing. The rewards are so amazing.

This poem was a group effort by our entire hospice team. In addition, one can change the title to any hospice of their choosing and it would be an accurate description of that staff as well. This is sacred work and is respected by those in the field of death and dying.

Folks continue to thank us for being there for them, but it is us who need to say “Thank You”. Thank you for allowing us into your home, sharing something as intimate as dying and telling us we made a difference in your life today. It doesn’t get any better than that.


YOLO HOSPICE
　

Hospice is more than a building.
Hospice is more than an agency.
Its foundation is the people inside
who make it run so smoothly.

If you ask what keeps them going,
their answers are as unique as they are.
None of them have chosen hospice,
as hospice has chosen each one of them.

Life experiences have directed their path.
“It is so natural to be here”.
“A massage for my soul.”
“It didn’t bring me here, but it keeps me here.”

You will hear honor, privilege, connection.
“It touches a deeper place in my soul”.
“Treating the whole family holistically  
at the most vulnerable time in people’s lives.”

A diverse group of chosen people
who receive tremendous rewards just knowing
that they made a difference in someone’s life today;
easing a transition towards a peaceful death.

Yolo Hospice. 

PRAYING

“Ken”, forty-eight, was hospitalized four days ago due to confusion and weakness. Ken suffers from liver and kidney failure. Ken has been divorced for years and has no children. Ken is close to his mother and siblings, who all are nearby and supportive to him.

Ken lives on one of two homes on his mother’s sixteen acres. His mother, “Alice”, lives in the other home. The doctor told Ken and Alice yesterday that there is nothing more to be done. Alice shared that she heard the doctor say, “He is dying. Take him home.” No matter how gently or kindly the doctor said it, I am sure that as a mother, Alice only heard the word, “dying”.

Alice has been a Seventh Day Adventist her entire life. She said that between 1-2AM this morning, she prayed to let her son live. She said that when she came to the hospital this morning and saw Ken, he was much more alert. She knows her prayers were answered as Ken said he started to feel better between 1-2AM.

Both Ken and Alice will fluctuate between “I am dying vs. I am living”. Ken wants hospice, but doesn’t believe he is dying. Alice wants to respect Ken’s decision for CPR, but then feels he needs to come home and let nature run its natural course.

None of us know how we would feel in any situation until we are faced with that situation. Denial is a huge part of the grieving process. It lets one cope using baby steps. The doctor’s news yesterday came so unexpected to Ken and Alice. The grieving process can be such an up and down, roller coaster ride. Hopefully time and prayer will help Ken and Alice through these upcoming days and weeks in order for them to each find their peace.


PRAYING

　
She’s been faithful all of her life.
Her strong beliefs have always saved her.
When tough times come her way,
she will always turn to prayer.

Yesterday, they were told he was terminal.
The last thing they expected to hear.
His kidneys and liver are failing.
There is no more to be done.

She prayed to God early this morning.
She prayed to let him live.
She knows her prayers were answered
as today he is much more alert.

Confusion impairs his judgment,
although he knows what’s going on.
He wants hospice and readily signed on,
adding, “It’s not my time to die.”

She agrees with him having CPR,
although knows it would be futile.
No more hospitalizations, no life supports.
Let him die a natural death at home.

She’s being a loving mother.
She wants her son to live.
Up and down, back and forth;
conflicted between grueling choices.

She prayed to God this morning.
She’ll pray to him again.
I pray her faith will sustain her
as she slowly learns to let him go.

A FIGHTER

“Josie, fifty-five was diagnosed with breast cancer five years ago. Her cancer has now spread to her brain. Josie lives with her fourth husband, “James”. Josie has a daughter from a previous marriage who will be visiting in a few days. Her daughter lives in another state and will be staying for a few weeks to help out and support her mother.

Josie’s doctor made a hospice referral as Josie’s treatments were no longer working. Josie was having intravenous treatments. Hospice’s philosophy is not curative, but comfort care. The hospice nurse and I went out to meet Josie and James. We wanted to inform Josie and James about our program as well as assess if they were ready to come onto hospice. We knew Josie had intravenous fluids today, but did not know if she had planned on continuing that treatment.

While the nurse and I sat in Josie and James living room, we discussed the hospice program. I asked Josie if she wanted full treatment or if she wanted nature to take its natural course. There is no right or wrong answer to this question. We want to support Josie with any decision she needs to make.

I was explaining “Full Code”, (having everything done to keep one alive) versus “Do Not Resuscitate” (letting the disease take its natural course). Josie paused in thought for a moment and said that the treatment’s effects were only lasting for one day. She then suddenly burst into tears, collapsed into her husband’s arms” and told him that she was tired of fighting. He held her so lovingly and said he understood. You could see that both of their hearts were breaking.

I felt so humbled and honored to have witnessed such an intimate and loving moment. Afterwards I commended Josie on speaking her truth to James. Most people are not able to be so direct with their emotions. I told her that it will help James to know what she wants.

This is a perfect example of why I do what I do. I am so blessed every day in my work. I will continue to do this amazing work until I can’t. Families and patients do the hard work, we don’t. It is truly an honor to walk along side of them.


A FIGHTER
　

She’s struggled through life.
Times have been rough.
Addictions, divorces, poverty.
Tremendous burdens to overcome.

In her forties, she met her soul mate.
They’ve been together eleven years.
You can see the sparkle in both their eyes;
their devotion to the other.

Five years ago her cancer struck.
She fought it as best as she could.
The cancer now has spread to her brain.
Pain and nausea, her daily companions.

We asked her about her treatment.
She said that today was the last.
It is no longer working for her.
A sudden realization of what was to come.

She needed to tell him.
She needed him to understand.
It was time for her to let go.
She collapsed in his arms and cried.

“I am tired. I am ready.
         I can’t do this anymore.
                  I am done. I am so sorry”.

A fighter. 

TWO MEN AWAKE

The hospice nurse and I admitted two elderly gentlemen to hospice today. There were several similarities between these two families. Both men suffer from end stage cardiac disease, have family close by to help and the wife is the primary caregiver. In addition, both men do most of their sleeping during the daylight hours.

“Nick”, eighty-eight, was just discharged from the hospital after a five day stay. He came home on oxygen as was easily short of breath with any exertion. Nick’s wife, “Melanie”, is fifteen years younger than him, is in good health and physically able to manage Nick’s higher level of need. Although, during the visit, she was so exhausted, saying she hadn’t had much sleep for several days.

Nick gets anxious once the sun goes down as it is a reminder that nighttime is coming and he will, as his usual, struggle to get to sleep. Nick dozes off for a few hours and then wakes up for several more hours and then dozes off again. Melanie says that any sleeping medication they have tried doesn’t work at all. She is hoping hospice has an answer for her.

The second visit of the day was with “Cliff” and his wife, “Jan”. Cliff is able to ambulate slowly using a cane, but has had some recent falls and cannot be left alone. Cliff and Jan are both eighty years old, although Jan looks so much younger than her stated age. She and Cliff had been extremely active their entire life. While Cliff’s energy has subsided, Jan still has a lot of get-up-and-go.

Both Jan and Cliff take life as it comes without much worry. Cliff has no fears about dying saying, “When it is my time, I will go readily to see Jesus”. The couple are both very direct and matter-of-fact. Jan, too, shared Cliff’s challenging sleeping pattern of being awake at night and asleep during most of the day. She described it so perfectly. I told Jan that I was going to borrow (steal) her phrase as it was so well expressed.

One doesn’t realize the impact of being a caregiver until they have personal experience doing it. When the patient does not allow the caregiver to get enough sleep, that job is a thousand fold more difficult. I know that when it is a caregiver’s time to cross over, they will jump to the head of the line. I am so humbled and grateful for all the caregivers out there for the selfless and amazing work that they do.


TWO MEN AWAKE
　

“Sundowners” is a term we often hear
when one is elderly, sick or confused.
One struggles with sleeping at night,
triggering drowsiness during the day.

Caregivers strive to keep up
as their body clock is in a different zone.
The world’s activities are in the daylight hours
while most things slow down and stop at night.

He’s been home only a few days.
He gets anxious once the sun goes down.
He worries about not being able to sleep,
which keeps him awake for hours.

She wants to be able to care for him,
but is getting exhausted needing her own sleep.
She’s trying to keep him awake during the day,
hoping a nighttime sleeping pill might help.

He, on the other hand, is awake most of the night,
falling asleep right before dawn.
He arises early afternoon
ready to face his day.

She told us about his sleeping habits.
He, too, is struggling during the night.
She was able to describe it so perfectly saying,
“He sleeps most of the day
             and then he naps at night.” 

"DON'T HUG ME"

“Pete, sixty-seven years old, suffers from Non-Hodgkin’s lymphoma. Pete was diagnosed four years ago. Three months ago, he started to become weaker and having increased pain. Pete’s biggest complaint is his itching. Tumors just randomly pop up under his skin causing him pain and itching.

Pete lives with his wife of fourteen years, “Laurie”. Laurie is the caregiver of the family. She is the one that family members call when needing support. Laurie is so focused on Pete’s needs, she is getting overwhelmed. She is fearful of making a mistake regarding his medications and care.

Laurie had wanted Pete to come onto hospice several weeks ago so she could have the twenty-four hour support. Pete agreed to meet with us, although was not ready to stop any treatment. He was still hoping for a cure. Hospice is not a curative program, but patients always have the right to choose whatever treatment option that fits them best.

Pete still wants blood transfusions and IVs to prevent dehydration. In addition, there is a new chemotherapy treatment that he wants to pursue. We encouraged Pete to make decisions based on his needs. Education is powerful and we were glad that we were able to inform Pete and Laurie about our program.

During the visit, Laurie started to share all of the losses she has suffered. Pete’s brother, her sister, her best friend, her son, two aunts and her dog have all died within the past three years. Many of the deaths were just weeks apart not giving Laurie or Pete time to grieve. Laurie says she is “stuffing” her feelings down as, for now, she needs to focus on Pete’s needs.

Laurie says her friends want to comfort her and that is what makes her cry the most. Her friends want to hug her and she always says, “Don’t hug me.” She added that she cannot let her tears show as she is afraid she will totally lose control. Laurie likely will grieve the loss of so many, once Pete has died. It will be then that she will need the support of those she won’t allow in now.

As the nurse and I were leaving the home, I teased Laurie and we gave each other an “air hug”. She laughed as knows that in time, the true and genuine hugs her friends will give her, will be the best medicine of all.


“DON’T HUG ME”

　
She doesn’t want to be hugged.
She doesn’t want to break down.
She’s been holding so much in.
It is much too scary to let it out now.

She has suffered from so many losses.
More than most could ever imagine.
Her son. her sister, her best friend and more;
all within these past three years.

Her close friends want to hug her.
They want to give her support,
but she keeps them arm’s length away.
She’s afraid she’ll break down and cry.

She can’t cry now.
She has way too much to do.
She needs focus; she needs control.
But most of all, she needs to help him.

When all is over and done,
she says she’ll let her support in.
But for now in order to cope,
all she can say is,
         “Don’t hug me.” 

A QUIET GUY

“John”, seventy-one, was on hospice for only one day. John suffered from esophageal cancer. John lived with “Denise”, his wife of forty-eight years. They have one son, “Seth”, who lives about two hours away. On Monday when the hospice nurse and I went out to admit John to hospice, we knew he was into his dying process. John had stopped eating several days ago. He slept through most of the visit. When he did awaken, he only said a few words and then fell back asleep.

Denise and Seth both were aware that John’s time was close. Seth was staying with his parents for a few days before he was to return home. Denise was very open, honest and direct with her emotions. She would talk very factual about John’s dying. Her strong spiritual support helped her cope. Seth would not sit with us at the kitchen table even though his mother asked him to. Seth would keep saying that he had one more thing to do first. During the entire visit, Seth kept himself busy doing laundry, checking on his dad or some other task.

Denise shared how she wished John and Seth were not so stoic with their emotions. I talked about how often men want to fix things and can feel so helpless because they can’t fix cancer. Many men will do tasks to show their grief. I added that Seth was a perfect example of how some men, or even women, may grieve. He was showing his emotions by tasks, not words.

Seth’s birthday was one week away. Seth and his father shared a joy of hunting. John had ordered a classic gun for his son for his upcoming birthday. The gun was delivered on Tuesday evening, the day after we admitted John to hospice. John died quietly hours later.

Denise shared that she knew that John waited until the gun was delivered before he left. She added that he also waited for she and Seth to leave his room. She said that John was protecting his family. She added. “John’s last gift to us was passing as peacefully as he did.” The way he died, gave her and Seth peace. Over the years, John had been showing his emotions with actions; never words.

We all speak constantly as body language is very revealing. What a gift they gave each other. She and Seth giving John permission to go and John dying the way he did. The only thing Denise and Seth wanted was for John to do things his way. John did; quietly.


A QUIET GUY

He was a quiet guy;
an unassuming, stoic man.
Silently doing what needed to be done.
His family foremost on his mind.

Even in his dying,
his wife and son came first.
Making sure all tasks were complete,
before he chose to let go.

She always hoped he would open up one day;
share his feelings so she would understand.
But she loved and accepted him as he was,
showing emotions with his actions; not his words.

“The two of us will be okay.
If you need to go home, go home.”
They knew he worried so much about them,
so they gave him permission to be on his way.

She said his final gift to them was serenity.
“He passed so peacefully, so gently.”
He died the way he always lived.
         Until the end of time,
                  a quiet guy.