Remembering our Dad…

Eulogy of Carmen J. DiPipi by David DiPipi

For those of you who knew my Dad well, there’s a good chance you probably heard him say how fortunate he was to grow up poor. You see, Dad was born and raised during the height of the great depression. He would often tell stories that I can barely grasp today—how times where so tough, that my Grandparents would sometimes go to bed hungry just so my Dad, Uncle Louie, and Aunt Mary could eat. But he always said that because of this, he was able to truly appreciate everything that life had to offer. This appreciation for life and all its gifts is something that grew with more fervor and intensity as my Dad aged through his 81 years. This is just one of the many lessons and legacies my Dad passes on, and it’s because of this lesson that I appreciate so much the opportunity to eulogize the man that meant so much to me, my family, and our friends.

Dad loved to tell stories, and I loved to listen them. Even at a young age of 7 or 8, Dad was industrious and did whatever he could to help his family through those hard times. Dad would tend the goats that were kept by the family and shine shoes on Main Street, always giving whatever he earned to my Grandmother to help provide. After graduating high school, Dad enlisted in the United States Air Force and served our country during the Korean War. After the war, realizing the opportunities that a higher education would provide, Dad somehow managed to hold down a full time job, while at the same time enroll at the University of Scranton, where in 1958 he became the first of our family to graduate from college, earning his bachelors of science degree in accounting. 

Shortly after graduating from the University, Dad met the woman who he fell head over heels in love with, and would ultimately marry – my mother Grace. Dad was absolutely crazy about my Mom. Celebrating almost 49 years of marriage, I really don’t think a day went by where my Dad didn’t tell my mother how much he loved her or how beautiful she is. Though in some ways they’re complete opposites, my Dad and Mom made the perfect team. My Dad did everything slow, where my Mom does everything fast, my Dad was always very methodical, where my Mom is more spontaneous. But the two of them together bestowed a perfectly balanced formula to provide my sister and I a rock solid foundation to continue to build our families upon. A foundation made up of our faith in God, the importance of family and friends, our love for one another, to always be humble; to conduct oneself with the highest morale and ethical standards, to work honest and hard, and to appreciate all that life has to offer. 

Dad was an avid golfer, especially enjoying the camaraderie and good times had with fellow golfers and friends while playing with the Pine Hills Senior Golf League. Dad loved music and electronics—often using his love of both to make CDs for his friends and family. Even at the age of 81, he could usually be found surfing the Internet on his laptop or listening to his favorite songs on his IPOD. He couldn’t wait to plant his garden every spring, and he was passionate about Penn Sate football. In fact, the only time FOX news wasn’t being broadcast on the TV is when there was a Penn State game playing. 

However, Dad’s first priority was always with his family and friends. He was always there to lend a helping hand—whether it was to help someone prepare their taxes, build a deck, visit someone in a nursing home, or just be there to have someone to talk to, Dad could always be counted upon. His world revolved around his family. He would never pass up the opportunity to brag about his grandchildren Elise, Nick, Christian, or Maria. Nor would he pass up the chance to sing the praises of my mother’s cooking or the exceptional care she gave him. For that matter, he wouldn’t pass up the opportunity to brag about his son-in-law Cliff, daughter-in-law Karen, or my sister and me. His family meant everything to him.

I know it sounds odd to hear the phrase “beautiful death”, but that’s just what my father experienced this past Sunday. Our family never left Dad’s bedside during his stay at hospice. In Dad’s last hours, as we gathered around his bed, he was able to tell each one of us a personal message that we’ll never forget. Our Sunday morning started out with our family in Dad’s hospice room watching Sunday Mass on TV. Dad’s condition was quickly deteriorating, when my sister stated that the time is coming closer. We remembered what Dr. Sebastienelli said earlier that morning, about an old wives tale of opening the window a crack to allow the sole to go to heaven, so we tearfully cracked open the window. My mother remembered how my father admired the recital of Our Lord’s Prayer during Joe Paterno’s own funeral, and as we held my father, we recited the Our Father. By the time we finished Dad took his last breath.

The North Star is described as a bright, prominent star fixed in the heavens that can be seen wherever one may venture or travel, thus providing a reliable means of navigating unknown territories. Dad, you always were, and you always will be our North Star. You’ve always provided the guidance to navigate through life’s challenges, and you’ve always taught us to just do the right thing. You were a kind and gentle man. We were blessed to have you in our lives. We’ll continue to live life using the lessons you’ve taught us. 

We love you Dad.

It Takes a Special Person

By Mickey Ryan, CRNP

Often, while their loved one is dying here in the inpatient unit, or even after they’ve passed away, a family member will thank me and say something like, “…it takes a special person to do this work.” Today the husband of a dying woman said, “You must be a very strong person to work here.” This couple has been together since they were 15 years old, and are now in their late 60’s! Imagine the loss he is facing.

I always answer in pretty much the same way, “…thank you; the truth is that I get so much back…”

Today, I decided to think about what it really is that I get back! Here are a few highlights:

• Exhaustion—was the first thing that popped into my mind, so I have to acknowledge that this is true and can be challenging.

• Wonder—that grieving people can look outside of their own sadness and find the energy to show appreciation.

• Humility—from witnessing the end, or beginning, of the ‘circle of life’; a mysterious process that is completely out of our hands.

• Gratitude—for the opportunity to care for people who, after living an entire life, whether it was 5 days or 95 years, are spending their final days in the place where I work.

• Hope—for humanity; because here in the inpatient unit, love is what sustains our patients, families, pets, plants, and staff, and there is plenty to go around.

• Weight gain—from enjoying all the food that people send and bring in.

Hospice work is difficult, and rewarding, in so many ways, and I am beginning to understand what a gift this opportunity has been for me.

Ave Maria

By Linda Forte

My father was a little Italian man. All of 5 foot 2. But he was strong as an ox. I remember when he was in the nursing home, in later stages of Alzheimer’s disease. He no could longer recognize any of us—except for his wife Irene.

His eyes would light up when he saw her.

My dad couldn’t really speak at this point. Occasionally he would say “yeah,” or come out with angry “hey,” when you pushed down his baseball cap. But that was rare.

Although he knew some Italian, I never heard him speak it as I was growing up. But when he was in bed at the  home if you ask him “Come stai?,” he would reply, “Bene. Come stai?” However, strangely enough, he could sing.

His repertoire was one line of O Sole Mio, or a few words of his favorite, Ave Maria. This song had significance for him in more ways than one. You see, my father had a little sister he loved that I never met. Her name was Maria.

Maria was my mother’s best friend. When she was 18 she was diagnosed with leukemia and died a few months later. I don’t think my father ever recovered from that loss. I know that he turned his back on God that day. Although my mom’s family was religious, and my grandfather used to go to church every Sunday, my father—not so much.

He complained about several things with the church, and had a “bah, humbug” attitude when we talked about going. I would actually have to sneak out of the house on Sunday mornings and walk up to the church by myself.

One thing I remember clearly during this period when my father could not speak. He was in very bad pain one day. Though he was incapable of sitting or standing up on his own, we actually couldn’t even keep him in his bed. He flailed about an kept sliding out of his bed and my husband (also strong as an ox) would gently lift him up and put him back. Finally the nursing staff at the home took him to the emergency room. He was very distraught and uncomfortable but we didn’t know what was wrong. As it turns out he had a very bad urinary infection. It must have been giving him a lot of pain that he couldn’t express.

I remember trying to comfort him in the emergency room. And then I said “Let’s say a prayer, dad.” He put his hands together and he recited the whole “Our Father” prayer with me, as tears were streaming down my face. I couldn’t believe it. But it really was like a balm to my soul. My father recovered from his infection, and he lived several years after that incident. He passed in 2010. But I will always remember him singing Ave Maria and think about how he is now with his sweet sister, Maria.

Author’s note: I posted this story on August 2, 2013. The next day I drove two hours north to visit my 90-year-old mother. We were in the car, en route to my sisters house. We had never talked much about Maria, but I asked my mother how old Maria was, in relation to her. She said “She was a little younger than me. She died in the summer—on August 2, 1943.”

“August 2—well, that was yesterday. That means she died 70 years ago yesterday!” I said. I didn’t say anything more, or about writing this post entry. But I realized that I had written it on the 70th anniversary of her death, to the day.

Here’s thinking of you, Maria. Say “Hi” to Dad.

Alzheimer’s Antics

By Linda Forte     

Alzheimer’s is a serious disease. But it is important to acknowledge some of the humorous times and remember that this is still a vital time of life for those experiencing it, so don’t be afraid to laugh a little and love a lot.

Dad loved bananas more than anybody I know. As his Alzheimer’s progressed, he would eat so many of them that my mom only would buy a few at a time. He used to hide them in the oddest places. We would find them in a sock drawer, under the bed, or in the microwave. Occasionally we would just know they were there after they started to turn black and smell a bit! To this day—every time I see bananas—I think fondly of dad.

A funny time I remember was when my dad had become verbally uncommunicative, and his dinner manners were suffering. My husband and I were sitting at the table with my parents. Dad was using his fork to take potatoes directly out of the serving platter to eat them. My mom said, “Bill—don’t do that. Take what you want and put it in your own plate.”

My dad slowly took his fork, turned it upside down, and put it on my husband’s forearm with a little smile. My husband stopped eating and looked back at him and we all burst out laughing.

Traditionally, on Thanksgiving, my mother would bake a ham. She also made lots of pies, candied sweet potatoes, etc., and continues this tradition through her 90th year. The refrigerator would get quite full!

I remember one Thanksgiving, before my dad moved to a nursing home—that he was trying his best to help my mom. She asked him to put her whole, beautifully baked and garnished Hawaiian ham outside in the cooler on this cold Thanksgiving morning. Well, he got the “cold” and the “ham” right. But somehow missed the “cooler” part.

Needless to say—when breakfast was ready, we couldn’t find the ham.

My mother said, “Bill! Where did you put the ham?”

He said, “What ham?”

We searched outside and in the basement. I was the one to finally find it—inside an old filing cabinet in the garage. We all enjoyed a good laugh. It was much more fun than our holiday Easter egg hunts.

Small Moments for Compassion

By Andy Probolus, MD, FAAFP

I try more and more to be aware for the small moments during the course of clinical work that can be moments for providing compassionate presence to another. Our attention is automatically on the patients who stand at the center of care we provide. What cannot be lost however is the presence brought to the other caregivers. Finding a way to help them be calmer, more relaxed and positive about the care they are providing can have a multiplicative effect on the compassion we are able to create, especially in institutional settings such as hospitals and nursing homes. Helping to care for caregivers, paid and unpaid is a big part of what I feel hospice and palliative medicine brings to the culture of medicine.

So some of the small ways to provide these moments:

1. Simple undivided attention and listening

2. Awareness and acknowledgment of the difficulties involved in caregiving

3. Gently re-framing situations when things start to turn negative

4. Bearing witness to suffering and moral distress, especially when it is unmodifiable

Beyond just amplifying the effects of our compassion, these techniques soften caregivers and gives them an invitation to act different. This works even with the most notoriously difficult group to influence, physicians! Never underestimate the power of these moments to change someone’s day and reinvigorate the care they provide.

Faith and Death

By Mary Chory

On July 13 and on August 28, 2013, it was 40 years since my 21 year old brother and my Mom died 6 weeks apart. It was the summer of 1973 when my big Irish family of 7, shockingly, became a family of 5. So here we were—Dad, myself and 3 sisters, aged 10, 14 and 17, floating on a rudderless ship. Not only was he grieving, but he knew he had to return to work, on the night shift, leaving his young daughters to fend for themselves.

Raised in a Catholic household and having gone to 13 years of Catholic school, I did not question why these things had happened.

Looking back now I think I was afraid to question what was happening. Several weeks before I had spent my 19th birthday in Ireland with my Mom. It was a wonderful trip and we were happy to share our stories with the my 3 younger sisters and my Dad. We were all enjoying the summer—and then everything changed.

Fast forward—we were planning for the 2nd funeral in 6 weeks. My Mom’s nephew who was studying for the priesthood had a conversation with my Dad about God and faith. It did not go well. My cousin resides in California and we did not see him often. Many years later when visiting my cousin in California he asked me if my Dad had ever gone back to Mass or reconnected to his faith. I was curious about why he would ask this question. He said in the summer of ’73 my Dad had said he no longer believed in God, would not go to Mass any longer and that no good God would take his son and the mother of his 4 daughters.

This came as a shock to me as my dad never exhibited this behavior to any of his children—but 25 years later it sure made sense that he would be angry with God and the situation in which he had found himself. In front of his children he was able to continue to work through his pain, continuing to go to Mass, kneel on a dining room chair to pray and be a positive presence for his family. I am grateful that I did not witness my Dad’s anger and fear because it allowed me to draw on my strong faith and use prayer to find the strength to assist my Dad in any way that I could and finish college.

My Dad will be 95 in September and he continues to inspire me. My Dad has been visiting me this past week and today we went to Mass together. Every day and every conversation I have with him is special. I have missed my Mom and my brother for 40 years now but feel so blessed when I hear my grown children talk how great their GPa is and how much they love him. Somehow I think my Mom is smiling down on all of us!

And She Sang…

By Mickey Ryan, CRNP

Almost 100 years old and as frail as a whisper, she came to the inpatient unit for relief of pain, caused by skin breakdown the likes of which none of us had ever seen.

Her hip bone could be visualized without the benefit of X-Rays. She just didn’t have any tissue covering it any more. And that was only one of her wounds. She had end-stage dementia and had not wanted to eat or leave her bed. Her son, who was her caregiver and knew how to cajole her into doing things she would have rather not done, was having surgery. So he left her in the care of his daughter, who despite her best efforts could not convince the patient to eat or get up. She thought she was doing the right thing by respecting her grandmother’s wishes, not understanding the potential consequences.

The skin breakdown happened so fast, the poor family could not believe it. Admission to the hospital ensued, then hospice. None of this mattered to the patient. She blamed no one, had no anger. She gave thanks to God, over and over again, and to her nurses, even as the wound specialist changed her dressings. She grimaced and moaned with pain, then smiled and asked us if we were alright, if we had eaten!

And she sang. Lying there, like a little helpless bird, she sang, and we joined in. And this made us all feel better. She passed a few days later.

We talk about her with smiles and tears, and are amazed that such a tremendous spirit could have been contained in such a tiny, emaciated, broken-down body. I wonder if she knows what an impression she left with us.

Hospice is Still Special

By Kristina Newport, M.D.

When socializing with fellow young physicians, most of whom are not in palliative medicine, I am reminded, in Hospice and Palliative Medicine, I have the unique opportunity to share time and attention with my patients. We reflect on “the old days” of medicine, where physicians had long standing relationships with their patients which allowed them to more easily direct medical decision-making which was appropriate for the individual patient. I often tell others I chose this field because it is the closest thing to that particular kind of medicine, where we can still do ‘the right thing’ for patients, most of the time. That although many parts of hospice are very rigid (eg. 6 month prognosis, palliative goals only) we still have significant freedom to adjust the plan of care to meet the needs of our individual patients.

My friends envy the extended visits I have with patients where I learn about their family and friends and, by doing so, also learn about their goals and fears. The time I am permitted to invest in my patients allows me to find out who the person is and then work to match the medicine to their needs. My colleagues often talk about the opposite—how their job is to make the people fit the medicine. We’ve marveled over this golden part of medicine where, at least as they die, hospice provides patients what they really need to live well.

Most of us practicing in this field recognize this could not continue indefinitely. With increasing complexity of hospice patients, an aging population and less options for debilitated patients with poor social supports, it was inevitable that the growing cost of hospice would catch someone’s eye and become a target for cutbacks. We’ve seen necessary layoffs and closings of hospices across the country. Last month this became a personal reality when the hospice I work for was shaken by a downsizing where we lost 19 valued colleagues. We consolidated our two hospice units into one with a loss of four beds. This was made necessary by the increased scrutiny and decreased payments we have received for the care we provide. We now pick apart each component of the GIP stay to be sure patients meet criteria. We second-guess enrollment of patients whose prognoses are in question even when their symptom burden clearly demands hospice support. Our ability to ‘do the right thing, because it is the right thing to do’ has gotten more limited as we rely more heavily on benevolence funds to provide care for patients for whom insurance does not cover the bill. Increasingly, the feeling that I, too, force my patients to fit into the mold of medicine is creeping up on me.

On the day our agency announced the consolidation, I was caring for a young woman in our inpatient center. During her stay she had been very verbal about her appreciation for the way the hospice team cared for her and worked together to provide comprehensive care. She felt a level of respect and humanity she had not felt anywhere else in her long experience with medicine both personally and professionally. When she read about the changes in the news paper the next day and sensed the grief we were all feeling she was appalled  hospice would cut back like other areas of medicine. She made it a point to tell us,

“No matter whether you get lumped in with the rest of medicine, you are still special. What you do here is still special. That needs to be recognized.”

I’ve chosen to believe her. Because if I didn’t, it would be hard to continue to do what we do, knowing we now have one hand tied behind our backs. What we do is special. The people in this field are special. As financial resources continue to change, the field will be forced to change as well. What will not change is that there will always be caring nurses, physicians, counselors, and friends who recognize the value of meeting patients where they are and maximizing their lives as they live with serious illness. Seemingly, hospice and palliative medicine is unique in the way we still place value on time and attention to the person. We cannot lose this focus. The way we deliver the care may change. The setting in which we deliver the care may change. I am hopeful the commitment to care will not.

So where do we go with all of our compassion and commitment? I’m grateful to inspired leaders who lead us in the right direction where we can apply these skills. Grateful for the thoughts of leaders in the field like David Casarett, MD, MA who proposes an alternate method of delivering palliative care at home which does not force patients to give up curative treatments or have a prognosis of 6 months in order to get the care they need. And the work of CAPC and Diane Meier MD FACP who argue for expansion of palliative medicine instead of the limitation of it. And organizations like NHPCO’s Hospice Action Network who advocate for policies to ensure the best care for patients and families facing the end of life. Their recent activity at Capitol Hill aims to help maintain the quality care we deliver.

Because the care we deliver is still special. And the needs of our patients don’t always fit into a mold. Let’s not forget that.

The Privilege of Being There

By Mickey Ryan, CRNP

After starting my job in the IPU, I would read the obituaries of patients I had cared for, and feel guilty about not having known more about who they had been, their accomplishments, etc, when they were well, or at least less severely ill. But the more I thought about it, the more I realized I couldn’t possibly know this about all the IPU patients, and it’s OK.

When my father was diagnosed with cancer, I told him that he was still him, not a disease. Of course, I did know him when he was well. But even so, as the cancer progressed, he became less and less like himself, no matter how much I wished it wasn’t happening.

So I’ve accepted that my place in our patients’ lives is at this time, when their disease process is obliterating their ability to be who they had been; when they’re having trouble breathing, or are overtaken by pain and debility, when they no longer want to eat, or have withdrawn from everyone and everything they ever knew; when they no longer even slightly resemble their former selves. I am a witness to the transition from their life-long experience of reality to whatever lies ahead. My job in this time is to help their journey be as smooth as possible, to minimize their suffering, as they step through a door which is currently closed to me but will some day be open, and to help their loved ones see and value the experience, rather than running from it. So I listen to the stories, admire the family photos, but focus on how their dying process is going. And I rarely read the obituaries.

As my husband said so comfortingly when we went to the funeral of a 5-year-old child who died in my IPU after being here for seven days, and I told him with some regret and bewilderment that I only knew the child for a week, yet felt so connected: “Yes,” he said, “but it was probably the most important week of his life.”

The takeaway messages for me are:

1. I can only be in people’s lives when the opportunity presents itself, but I can always strive to be someone they’re glad to have met. This applies to every day life—not just hospice!

2. Dying is not cold hands & feet, mottling, delirium, cachexia, agonal respirations, pain, anxiety, or regret. It is a phase, a turning point, a threshold, and the inevitable result of having been given the gift of life.

The Master Gardener

Marla Legere wanted to share these words and beautiful poem with readers of Walking on Sacred Ground.

We often ask so much of ourselves and others as our lives unfold. We push so hard and expect so much… but like the rose, true beauty cannot be hurried. We must be patient with our tender humanity and realize that something truly miraculous is taking place within. That God, the master gardener is at work.

It is so beautifully said in this lovely poem by Mark Coleman… “we open fully only to warmth and light”… and most importantly that ” a flower cannot be opened with a hammer”.

If you would grow to your best self
Be patient, not demanding
Accepting, not condemning
Nurturing, not withholding
Self-marveling, not belittling
Gently guiding,
Not pushing and punishing.
For you are more sensitive
Than you know
Mankind is tough as war
Yet delicate as flowers
We can endure agonies
But we open fully 
Only to warmth and light.
And our need to grow 
Is fragile as a fragrance
Dispersed by storms of will
To return only when
Those storms are still.
So accept, respect
Attend your sensitivity
A flower cannot be opened
With a hammer.

–Mark Coleman

Hospice Reflections

Words from a Hospice Colleague…

While working for hospice, I had written these thoughts in my journal about 2 years ago and just recently was reflecting upon the entry.

Hospice has been the most meaningful and fulfilling path along my nursing profession and I only hope to have the privilege to once again work in the field…

What strength lies in the moment one accepts they’re dying and can find peace in the thought of the unknown mystery of the journey that lies ahead. I am so fortunate to care for individuals with such strength. I am in awe of their passion and their fight and love for this life. In all the bad in this world, they still want to live. And when told when they won’t for much longer, they live anyway and while doing so, find the strength to die.

I am so thankful for this path in my life and the unexplainable breath it is feverishly breathing into my soul. It is an honor to cry with these men and women who are walking such a bold journey and doing so with much beauty and grace. Like a dance to a song not yet heard but having all the steps entwined in their soul…

Marygrace, thank you for this site and the sharing of your journeys and experiences. I appreciate your wisdom and heart and the strength to share the difficult moments. When working alongside you in hospice, you always were filled with a unique and humbling compassion for all those in your presence…including your colleagues, which is deeply treasured in this area of medicine…and since I never got to tell you before I left…thank you for all that you do for the patients, families and staff each and every day.

–Rachel

In Remembrance…

by Mary Joan

It was eight years ago this Thanksgiving that my husband Joe received the news of ”small cell lung cancer.” We had five months that became the gift that I treasure.

Joe was a retired Lt. Col. in the Army, an engineer, father of our seven children, Irish stamp expert, proud grandfather of 13 grandchildren and a friend to hundreds of folks all over the world because of his philatelic involvement.

He was a busy person, but in those five months we were focused completely on each other and they are the gifts I remember.

When Joe was dying, we talked about what it might be like. I gave him the image of our little girl, Maureen, who had died at five years old, running to meet him and taking him by the hand to heaven.

I keep that image forever in my heart.

Holy Ground

Holy ground. I walk across it every time I make an end of life visit. I have felt the holy stepping on lush carpets. I have felt the holy tripping over dogs. I have felt the holy in the tiny confines of a trailer waiting with a new widow for the funeral director to show. Each time I leave I take with me an experience that both drains me and yet gives me the desire to live and love every moment I have. With my children. With my friends. With my pony—with whatever each day brings…

Joanne Mannix

The Words to Heal

A story by Mickey Ryan, CRNP

On January 3rd of 2003, I received a call from my sister in Philadelphia that it looked as if our mom had a stroke. My sister found her in her apartment, slumped over on the couch, lethargic, her speech garbled, so my sister (of course) called 911. Our mom was taken to the ER of a neighborhood hospital, where the CT scanner was not working. My sister was told to wait in the first ER while our mom was taken to a nearby hospital for a brain scan. When she returned to the ER where my sister waited, she was intubated, on a ventilator, and comatose, and it was confirmed that she had suffered a massive stroke.

Our mom had a beautifully-written living will that she and our dad had completed together, years earlier. Our brother arrived the next morning from Tennessee, living will in hand. When our mom showed no signs of waking, and her repeat CT scans looked worse, we tried to talk with her neurologist about stopping the life-support measures. The neurologist was reluctant to “give up”, as he called it, despite the fact that Mom could not breathe on her own, swallow, interact, or maintain an adequate blood pressure without medication. My brother confronted him with Mom’s living will whenever he did rounds, but the physician preferred to avoid the conversation. With the help of an ICU resident who supported us and acted as a liaison, and after talking with our other brother in California, we made the agonizing decision to withdraw the life support measures. Mom died comfortably 24 hours after being extubated, with us at her side. 

Even though this all made sense at the time, for the next seven years I struggled with our decision. Did we cheat our mom out of a chance to recover? Should we have waited longer? Was this really our decision to make? What if…

Had I understood then what I know now, since working for hospice for the past 3 years and learning a new language, I would not have struggled as I did. Our mom had been declining since our father died 7 years earlier. She had chronic, incurable illnesses including depression, hypertension, TIA’s, and vascular changes in her brain. She had a gait disorder due to the brain changes, which caused her to be sedentary, and early dementia. She was losing interest in her favorite things and her appetite was diminishing, as was her quality of life. Her medications were more of a burden to her than anything, which is why she stopped taking them. She had made her end-of-life wishes known, and our job was to give these wishes a voice and to honor them. The stroke was her terminal event, her repeat scans showed no chance of meaningful recovery, and more aggressive interventions would only have prolonged her dying, not her life. Framing this event with these words has made it crystal clear to me that we did the right thing, and now instead of agonizing over the decisions we made, I feel proud that we stood together and acted based on our love for Mom. 

So, I offer this story in recognition of another in a long list of priceless gifts I have received during my time with hospice—the words to help heal myself, and to help others feel at peace when faced with making such terribly painful decisions.

Words to Live By

A friend of mine sent me this…beautiful words to live by.

When despair grows in me

and I wake in the middle of the night at the least sound

in fear of what my life and my children’s lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought of grief.

I come into the presence of still water.

And I feel above me the day-blind stars

waiting for their light. For a time

I rest in the grace of the world, and am free.

–Wendell Berry, from Selected Poems

The Story: Calming the Storm

By Kristina Newport MD, Hospice & Community Care

I’m awakened by a 5:30am text from my medical director: the inpatient unit may need to evacuate due to water damage. Please go there as soon as you can.

Upon arrival, the front hall of our typically peaceful inpatient unit is filled with firefighters. They responded to the fire bells that went off at 4am, when a pipe exploded, flooding the front hall, workroom and 2nd wing of our three wing unit.

I headed into the room of a 38 year old woman who I will call Natalie. She had come in the night before for imminent death. She had a four year history of breast cancer that now had spread to the brain causing increased intracranial pressure and herniation despite whole brain radiation therapy, Mannitol and steroids.

Her mother met me at the door of the dark room, angry and anxious. Disappointed that she had agreed to bring her daughter to this place that promised a peaceful death. Instead she found chaos and a threat of evacuation on one of the coldest days Lancaster county has seen in decades.

I knelt on the floor beside the couch where the mother had spent the night. That’s when the story unfolded. She began with the initial diagnosis and the need for neoadjuvant therapy to shrink the tumor before it could be resected. Then the chemo. Then radiation. The emergent intubation when ‘we almost lost her.’

The year of remission.

And the time when, a year ago, Natalie got short of breath and was found to have multiple metastases in her lungs. She faced a decision of whether or not to pursue palliative treatment. Natalie said there was no question because her children, who were 3 and 6 years old. She wanted as much time as possible with them, so that they “would remember her.”

Despite illness and debility, she spent the following year getting q 3week chemotherapy treatments and making those valuable memories with her children. She volunteered in her their classrooms and took them on outings every chance she got.

One week before she died, she lost her vision and her ability to walk. She insisted, though, that she accompany the family to her older son’s basketball practice. She sat in the bleachers, smiling persistently. Her mother asked her, why are you smiling like that? She said, “I can’t see whether he is looking at me or not, so I’ll just keep smiling. That way when he looks at me he knows I’m happy to be here with him.” That would be her last basketball game. And she knew it.

On the night before she left home, her oldest son seemed to sense her decline. He lay down in bed with his grandmother and said “I just don’t want to be alone tonight.”

As our hour together progressed, the sun slowly rose outside the patio doors, with white light reflecting off the snow onto the mother’s tear lined face. While firemen, electricians, plumbers, CEOs, insurance adjusters and hospice staff swirled around the halls, Natalie’s mother quietly finished the story. Telling me that her daughter was the most amazing mother, and person, she had ever known, but that Natalie was finished. And she knew it. Natalie gracefully instructed family to ‘Let me go,’ and asked her brother to come care for the boys.

While we talked, Natalie lay, quietly, in a comfortable bed with quiet respirations. Her mother quietly showered her love and respect over the whole room. Somehow, by the time I walked over to examine Natalie, the room was warmer, and brighter and calmer. Although no medications were administered, and I had spoken very few words.

The story had created a shared blanket of warmth and calm that covered all three of us. Sometimes I forget the power of the story.

“Being” at the Hospice Bedside

By Marygrace Lomboy

I sometimes have to remind myself that not every moment at the bedside means “doing” something for my patient approaching end of life. Having worked as a nurse for many years, I finally understand that “being with” is just as important as the “doing for.” It is so important to just “be” at the bedside with your loved one. Those times are the most precious that you will stay with you. Many opportunities to share may be missed if we busy ourselves and not pause to spend some quality time with our loved one.

Here are some tips on how to just “Be” at the bedside…

• If your loved one can no longer respond verbally, you should still talk softly to them, as they still may hear you.

• Avoid talking “about” your loved one as if they are not present. Even if they are not responsive, try to include them as part of the conversation.

• Avoid loud noises, excessive external stimuli or other distractions. This may cause your loved one to become anxious.

• Gentle touch to let your loved one know you are present. Recognize that sometimes physical touch may cause distress.

• Slip your hand under your loved one’s hand with your palm up. This will allow your loved one to hold your hand without causing any stress in joints or position.

• Play soft soothing music which can enhance a calm environment for you and your loved one.

• Feel free to share favorite memories with your loved one, read a book, or pray quietly.

• If your loved one is reporting seeing loved ones who have dies, allow them to talk openly about their experience. Be accepting of what they are experiencing.

• Be open—many opportunities for growth, peace and healing may be unfolded. Leave nothing unsaid that you feel is important for bringing you and your loved one peace and comfort. Often, saying “goodbye” can be an important part of closure for you and your loved one.

Remember that it’s OK to just “be” and be quiet. A calm presence is such a beautiful gift for your loved one.

Caregivers: the Real Heroes

By Marygrace Lomboy

I often refer to the caregivers that I work along side every day as true heroes. They selflessly give of themselves to care for a seriously ill or dying loved one without any reward, gain or recognition. They often have sleepless nights, caring for a loved one who’s needs are far greater than every imagined. The daily routine of feeding, bathing, turning, repositioning, toileting, etc, is probably one of the hardest things most people will every do, often times thrown into this role without much warning or training. It is physically, emotionally and spiritually taxing. Heroism usually involves acts of courage. It takes lots of courage to watch helplessly as your loved one functionally declines, can no longer get out of bed and become totally dependent. It also takes courage to put your career, privacy, plans for the future and personal lives on hold while being a caregiver.

I do have to admit, after witnessing these “heroes” day after day—I have come to believe in the greatness of humanity. How everyday people can reach down deep into themselves and find the strength and the stamina to do this work. I believe this work is carried out by the way of  unconditional love that a person has for another. There is no ego, just love. People taking care of each other—to see it in action is such a beautiful thing to witness.

As it turns out, I don’t have to look very hard for the heroes in my life—I see them everyday and I’m truly inspired.

Thanksgiving

By Marygrace Lomboy, CRNP   

As I look back on our last Thanksgiving, I can recall the anxiety and sadness I felt as this was the first Thanksgiving without my Dad. Every year, our family would gather at my house, some years as many as 18 of us—and the celebration of just being together would start the night before the big turkey day. We would sit around my kitchen table until after midnight, tell stories, share pictures of past holidays and play games with the kids. The wine would flow and the laughter in the house was deafening. Would we still be able to do this without my Dad? Who would make the cranberry sauce? (That was my Dad’s job I got him to do every year—with much supervision, as my Dad didn’t know how to boil water!) There was going to be an empty seat at the head of our table…and I wasn’t sure how we were going to get through this. The tears would start each time I glanced at my dining room table dressed up for the big day.

We did get through Thanksgiving, but things were a bit different. It was more reflective and a bit quieter, but with deeper gratitude. The empty chair at the head of the table remained the empty chair. I left it open for someone to sit in it, but no one sat there. It remained empty. I think that chair was symbolic that Dad was still with us through our dinner. It was OK that it was empty. We gave thanks for what we had—especially for each other. We lit a candle in my Dad’s honor and shared memories from past Thanksgivings. It had been a tough year and we got through it and from it—we shared a deeper gratitude for each family member.  There were some tears that day, but there was also some laughter. I know that my Dad would have wanted it that way. He loved the family together, loved the laughter and would have wanted us to celebrate together with much love and thanksgiving for so many blessings.     

The holidays can be an especially difficult time of year after the loss of a loved one. When everyone around you is celebrating and happy, you may be feeling pain and sadness. Much anxiety may be felt leading up to a holiday, which may be actually worse than the day itself. 

Here are some tips to make it through those tough days… 

• That “empty chair”… do you keep it at the table, or do you remove it? I kept it there and felt that it was right for my family. There is no right or wrong answer to this—go with what your heart is telling you.

• Don’t over schedule yourself. Have some quiet times to ground yourself prior to the actual holiday. Set realistic goals for yourself.

• You don’t always have to do things the way you’ve always done them. Establish new traditions. This doesn’t mean you are throwing away the old ones—you may go back to them when you are ready to. 

• Address the “elephant in the room,” by acknowledging your loved one and including that person somehow in your holiday gathering. Lighting a candle, making a toast in his or her honor, or sharing memories or funny stories. It may be difficult to start this conversation, but will be very healing. 

• Give thanks for what you had and what you still have…stop and take a moment to think about what you are thankful for: your health, family, loved ones, etc.

• Most of all, embrace and remember that you had the love of a wonderful person, whose legacies of love and memories will be in your heart always. 

Rest

By Marygrace Lomboy, CRNP   

Finding time to rest…time for renewal out of our busy lives is essential. I’m writing this post as I’m in the White Mountains, New Hampshire hiking with my family. It’s easy to find rest and relaxation here amongst the crystal clear lake and soaring mountains overhead. What is more difficult is when I get back to reality and find myself going a million miles a minute and at times, not able to catch my breath. I recently purchased a personal wrist fitness tracker to monitor my daily sleep cycles and activity. It was a literal wakeup call when I found just how little sleep I was getting and how little I was moving on a daily basis. We have become an overworked, overstressed and exhausted society. The body needs sleep—the brain needs to regenerate itself. Setting aside a regular time for rest is a practice that has become undervalued and looked upon negatively in today’s culture. Our workplace praises those who work a 60 hour work week. We are obsessed with getting things done as quickly as possible: 15 minute abs, 1 hour photo, 30 minute meals…

This brings me to remembering all of the caregivers who make it a priority to care for their loved one who may be bedridden, dealing with a chronic illness or dealing with end of life. Caregiving is physically and emotionally demanding, often with no breaks or help day after day with the potential for sleepless nights. Respite care provided by a professional caregiver or a relative or volunteer often gives the caregiver a well-deserved chance to rest and recharge. I often encourage the caregivers that I encounter to take the help from friends, church groups, volunteers or family members who offer to help. Without rest periods, caregivers may experience increased stress, resentment and depression. Respite will help to have the caregivers renew their energy, avoid isolation and decreased stress.

Rest does require patience and setting aside time for yourself for renewal. It is spiritual as well as physical. It is a mental break. It is looking around and actually taking in your surroundings and becoming present. It is noticing your breath and being kind to yourself.