The last few weeks

Posted July 16, 2014 by hpccr
Categories: awareness, caregiving, dementia, end of life, hospice

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by Joel Saperstein, loving husband and caregiver

Editor’s note: Several weeks ago, I received a letter in the mail from Mr. Saperstein.  It was a beautiful testimonial to his late wife who passed away under our care.  You can read their love story and his letter here.  Then, not much later, I received another letter  from him describing the daily caretaking routine with his beloved Marsha as her disease progressed.  He eloquently captures the beauty and heartbreak of caring for a loved one with dementia and Alzheimer’s.

hummingbird soloThe last few weeks of Marsha’s life was a moving, heartbreaking learning experience for me.  Her dementia / Alzheimer’s had taken complete control of her mind and body.  Even so, she searched for beauty everywhere.

I would prop her up onto three pillows.  She would watch with child-like fascination as the sun’s golden ribbons streamed through the window and settled on the bed cover.  She reached out to touch the light.  “It is beautiful,” she would say.  Everything we encountered every day was new and magical to her.  Hummingbirds darting around the feeder brought a smile to her face.  Ants running up and down the fencepost were accepted as just part of life, and shouldn’t be hurt.  Every part of nature was new and wondrous.  It was like discovering life for the very first time.

Her circulation was failing, and she was chilled.  Her hands were cold.  I would take and hold her hands to keep them warm.  She would look directly into my eyes.  I would look into her watery, green eyes.  Her eyes used to glisten below her beautiful red hair.  She would force herself to stroke my face.  “You are beautiful,” she would say.  Then wide-eyed, frightened, she would stare into a void.  “They are coming for me.  They want me to go with them,” she would say.  “Do you want to go with them?” I asked.  “No,” she said.  “Then you don’t have to go,” I assured her.  Satisfied with what I said, she lay back, closed her eyes and was at peace.  Still holding her hands, I stayed with her and let her sleep.

Saints among us

Posted July 10, 2014 by hpccr
Categories: awareness, end of life, hospice, Levine & Dickson Hospice House, Levine & Dickson Hospice House at Southminster, volunteering

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by Andrea Powell, HPCCR Marketing Manager

saints1-400x256Folks, saints walk among us every day in the hospice industry.  Selfless, loving saints.  Everyone involved with a hospice organization, it seems, has responded to an internal calling; has acquiesced to a higher authority and made a conscious decision to give of their truest self.

Our volunteers fall into this category.  They help patients and families because they adamantly care.  They don’t show up because they get paid or because they think they’ll score a job.  Our volunteers understand the life-changing experience that is hospice and they want to be a part of it any way they can.

I have a few very good examples to illustrate my point.

At our hospice house in Huntersville, Levine & Dickson Hospice House – Huntersville, we had a young dad (only 40 years old) who was under our care.  He had two young children and wanted to leave memories for them; tangible ways to be a part of their lives since he would not be there to witness them grow up.  Two wonderful and dedicated volunteers helped him 1) record the book “Good Night Moon” so that his children would never forget the sound of his voice, 2) write cards to them so that they would always have him “present” for momentous occasions, and 3) take prints of his hands (and those of his children) so that they could have a framed, visual reminder of his love for them.  These amazing volunteers spent a week helping the father with these small, but incredibly precious tasks.  Their actions soothed the mind and heart of a dying dad.  For the children, however, these irreplaceable mementos will undoubtedly become beloved treasures.

At our hospice house in south Charlotte, Levine & Dickson Hospice House at Southminster, we occasionally have volunteers bring dinner for the families and visitors who are keeping vigil over their loved ones under our care.  A few weeks ago, dinner was provided by a young mom of two (with another on the way!) who not only cooked a beautiful meal, but left this note as well:

My name is Jen and I am a 33-year old mother of two little girls, ages 4 and 2 and am also pregnant with a baby boy, who is due in October.  In case you were wondering why I made dinner tonight, I wanted you to know it is truly for one simple reason: because I wanted you to know that someone is worrying and caring for you.

I lost my dad to colorectal cancer six years ago after a long battle.  I know that when you are caring for a loved one who is ill, you have probably spent a lot of time worrying, you’ve likely spoken with countless doctors, and spent a lot of time researching all kinds of things.  I also know that there are a lot of days that caregivers survive on vending machine food, if any food at all.  So for dinner I have made one of my family recipes — we are Italian and this was one of my Dad’s favorites.  Today would have been his 79th birthday, so please enjoy and thank you for allowing me the opportunity to provide you with some food that I hope brings you some physical energy and maybe even some comfort, because again, this was made just for you.

I wish you and your family the best.

See what I’m talking about?  Saints.  Saints who whole-heartedly support the mission of hospice care.  Our volunteers understand what’s important to a patient at end of life.  They also know the heartbreak that loved ones and family members feel when they’re watching someone special slip away to an unknown place.  And rather than just say, “Wow, I’m sad for them”, they ask a completely selfless question which is, “What can I do to help?”

All I can say is that, daily, I am blown away by the stories I hear about volunteers touching the lives of those we serve.  I am profoundly grateful to these saints for heeding that higher call.  They nurture and love to the nth degree.  And, ultimately, they sustain us.

Walking into the fire

Posted July 2, 2014 by hpccr
Categories: awareness, end of life, hospice, volunteering

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by Bill Hamelau, HPCCR pet therapy volunteer

rowdy2

Rowdy, volunteer extraordinaire

After five years as pet therapy volunteers, my dog Rowdy and I are going to take a break.  When I shared that decision with Elise Hurst, my staff liaison for those five years, she was very understanding and empathetic as usual.  I explained that the last six months were particularly difficult having experienced the deaths of four of the five patients assigned to us.  One might assume that after five years, you would become “accustomed” to losing your patients but the fact is, you do not.  When one of your patients dies, a piece of yourself also dies.

I got involved in pet therapy for hospice for two reasons.  The first was the belief that my incredibly loving Portuguese Water Dog, Rowdy, could bring joy into patients’ lives.  This turned out to be true as I witnessed the smiles of patients and heard so many times, “You made my day.”  They were, of course, referring to Rowdy.

The second reason I became involved was much more selfish.  I wanted to see if I could overcome a life-long “problem” of becoming emotionally devastated upon the deaths of friends, family, and associates and their family members as well.  I knew my reactions bordered on the irrational and I would literally fall to pieces each time this happened.  I decided that I needed to walk right into the white hot heat of the fire itself and, to say the least, it has been so helpful.  My pet therapy work with hospice has given me such a deeper understanding of death and the dying process.  Being given the honor and privilege of  interacting  on an ongoing basis with these precious and wonderful hospice patients at their end of life has been a rare and special gift.   Through their poise, dignity, grace, humor, and tears each one became a teacher and I, the student.  I am so grateful.

We at HPCCR express our deep appreciation to Bill and Rowdy for making the days of many patients and families brighter by their joyful presence.  We sincerely hope they will be back as volunteers after their break and that we will have the privilege of reading about more of their hospice adventures!

Why I get up every morning

Posted June 26, 2014 by hpccr
Categories: awareness, end of life, hospice, Levine & Dickson Hospice House, palliative

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by Colin F. Nolan, UNC School of Medicine Class of 2015

good-morningMy hospice experience came as a timely reminder of why I even got into this business in the first place.  I had a feeling that I would probably learn more about the differences between hospice and palliative care.  I could have guessed that I would dabble in the tangled intersection of government-funded insurance and end-of-life hardships.  I didn’t expect those two days to jog my memory and dust off an experience I had long before I had even signed up to take the MCAT.

My mom has been a hospice nurse for nearly fifteen years.  My dad was laid off in the early 2000s and she went back to work to help put four kids through catholic high school while my dad searched for stable employment.  At first she cleaned houses, babysat, and did odd jobs, all the while working to renew her nursing license.  Upon passing the test, she landed a job on the palliative care unit at a local hospital.  She later transitioned to work at a local hospice home.  She routinely put in 12-hour shifts, five days a week, taking care of dying patients and their families.  I often wondered how she got up in the morning to do that each day.

My latest experience in palliative medicine and hospice (at Hospice & Palliative Care Charlotte Region) called to mind a memory of when I shadowed a physician that worked at the hospice home my mom worked at.  At the time I was contemplating whether or not to pursue medical school after graduating from college.  Why I felt that shadowing a hospice doc was a good idea I don’t know, but I did it anyway.  Admittedly, I probably didn’t know what I was getting myself into.  (I knew what my mom’s days were like but she did an exceptional job dealing with the downsides of her line of work on her own.  So I really didn’t know.)  When I shadowed, I saw first-hand what a dying person looked like.  I remember seeing the nurses care not just for the patient, but for the family members too.  I will always remember the way the whole hospice team worked to let the patient find peace with dignity, while at the same time tending to inconsolable and sometimes volatile family dynamics, all in the confines of a space that aspired to offer the comfort and tranquility one might experience at home.

I know it takes a special type of person to work in palliative medicine or hospice because my mom is a special type of person.

I have a lot of respect for the work that these special types of people do day in and day out.  I think back to the meeting I sat in on within minutes of arriving to Golden LivingCenter, on day one of my hospice experience.  (As an aside, it never ceases to amaze me how my white coat, albeit above the knee, allows me — a stranger– unfettered access into the most private and vulnerable moments of people’s lives.)  I sat and listened to the son of a very ill woman vent his frustrations with the system to a nurse practitioner. He had quit his job to take care of his mom and help with her transition from hospital to skilled nursing facility, and so forth.  He was strapped for cash, and due to loopholes in paperwork, was now being charged for several days of care his mother received at Golden LivingCenter.  He had no idea how he was going to afford it.  His mother’s care had been left to him to supervise, as his other siblings were either unable or uninterested.  The NP was able to reassure him that it would be alright and that the patient was so lucky to have a son like him looking after her.  I swallowed hard as the grown man started tearing up, and the NP rubbed his shoulder as she reassured him.  Again, I was struck by how caring for the patient is only the beginning of what these people have to handle as part of being a palliative or hospice care specialist.

A patient had expired minutes prior to my arrival to an inpatient hospice unit on day two of my hospice experience.  A few hours later, my NP who I was shadowing, pulled me aside and told me what was about to take place.  I huddled with her into the patient’s room, lights dimmed, with the rest of the hospice team.  In all, there were about twelve or thirteen of us in the room, in addition to the patient’s three family members.  The chaplain said a few words about the patient, who was positioned under the covers in her bed, with flowers and a prayer shawl placed neatly on her.  The emphasis was on the peaceful passing that she experienced, with her loved ones at her bedside.  We bowed our heads in prayer in the flicker of the electronic candles several nurses were holding.  I stole a glance at the room.  Here were all these people, surrounding three strangers and their dead loved one, only a short time after she had finally passed.  It was humbling.  It was humbling to be there in that sacred moment—to be considered part of a team, if only as a shadow, with the opportunity to affect the lives of people in that way.

In that moment I saw why all of those special people get up every morning to do what they do.  We lifted our heads at the end of the prayer.  The family exchanged hugs with the chaplain and the nurses that cared for them and their loved one.  The son then cleared his throat and thanked the hospice team up and down for how they took care of his mom in her final days, and how they helped ease what was, of course, a painful process for him and his family.

During a time where the focus is so much on what I plan to do — what I will specialize in, where I will match, when I will get my application together, and who will write my letters of recommendation — it was refreshing to have a few days that so succinctly showed me why, I too, am getting up every morning to do what I do.

Thank you for that.

The humble hero

Posted June 19, 2014 by hpccr
Categories: awareness, cosmetology, end of life, hospice, Hospice & Palliative Care Lincoln County, spiritual care, Veterans, volunteering

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by Walt Windley, Hospice & Palliative Care Lincoln County Chaplain

Jim Kelly pic

Dr. Jim Kelly, the dental miracle worker

Bestselling author and award winner Jodi Picoult writes in her novel Second Glances that “[h]eroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving.  Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s.  And maybe that one act could lead someone to rescue you right back.”

If you ask Dr. Jim Kelly, he would tell you that he is certainly no hero; in fact, he would probably describe himself as a Gastonia “good ole boy” who loves hunting, fishing, and yes, working with teeth.  For those who know him, they are quick to point out a humble man of deep faith who loves in really big and generous ways.  He kind of fell into the profession, following in the footsteps of his grandfather, father, and older brother — graduating from UNC dental school and coming back to the place where his roots grew strong in a local family-owned practice.  Today, he and his wife carry on the tradition in a new shiny building with the same warm smile and Southern hospitality that has so long defined his family name.

His relationship started with hospice about a year ago.  Some would call it an accident, but Dr. Kelly would say his sense of adventure has led him to moments like this.  A local Veteran under hospice services lost an incredible amount of weight rather quickly.  He was primarily bed-bound and was no longer able to leave his home.  His appeal for new dentures had been rejected since the patient was under hospice and “would be dying anyway.”  This patient grew weaker every day and found himself only able to eat extremely soft foods.  He told me that his great wish would be to enjoy a juicy steak one last time — something that seems insignificant to most of us who pull up to any restaurant whenever we get the craving and order at our heart’s delight.  In comes Dr. Jim.  He agreed to see the patient in his home and figured out a plan to grant this final wish, in between the swapping of stories about motorcycles and service to country.  Over a series of a couple of visits, Dr. Kelly would completely grind down and realign this patient’s dentures.  Weeks before he died, a large steak was delivered from Longhorn Steakhouse and completely devoured!

This single experience was enough to get Dr. Kelly hooked.  He would invest in the tools to create his own mobile clinic of sorts, eager to help other hospice patients that may need assistance.  And maybe the best gift of all — he has offered all of his services completely free of charge.  Dr. Kelly has made a significant investment in community and people, seeking to untangle the lives of those in front of him.   And he would say his life has found a deeper sense of meaning and understanding in the process.

There was that patient in an assisted living community whose dentures could be dated back to the 1950’s.  Dr. Jim stepped in to answer the call, working tirelessly with the patient to give him a new smile that became his deepest joy.  He convinced a local lab to donate their time and services as well.  And when the patient needed more than could be offered in the community, Dr. Kelly would help arrange for the patient to be brought into his office and bring in staff early one morning to address all of his needs.  He realized in a man who many had forgotten that his life was worthy of respect and love.

And finally, there is the family to whom he will always be known as “the angel brought from God”.  The patient was an elderly woman with three daughters who served as primary caregivers.  This patient desperately needed to have her dentures realigned but the family feared that she would not survive the transport to the office as she grew increasingly weak.  Dr. Jim agreed to make a visit.  During that first encounter, the patient was nervous; she’d never taken out her dentures in the presence of a man.  Dr. Kelly offered a loving presence, simply engaging in conversation while building rapport.  He visited several times before he even got around to working on her teeth, realizing that socialization was an equally important gift.  The patient did eventually pass away, but she passed away a very happy woman.  She had a freshly aligned set of teeth and enjoyed a marathon of all of her favorite foods during her last weeks.  For her daughters, seeing their mom, who had turned away food time and time again, finally ask for something to eat was simply a miracle.  Their tears spoke volumes, having found some peace in the most unlikely of places.

Dr. Jim hasn’t leapt over any tall buildings, and he certainly hasn’t stopped any flying bullets.  But he has taken the time to listen, to love, and to serve in ways that have left us speechless, all while maintaining his sense of humility and faith.  A valuable relationship has been formed in Gaston County that has rich potential to redefine the ways we think about community.  Never has the power of a smile had more meaning.

In an ideal world. . .

Posted June 12, 2014 by hpccr
Categories: advance directives, advocacy, awareness, education, end of life, hospice

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by Andrea Powell, HPCCR Marketing Manager

health care planningI rarely wish for time to speed up and the future to get here faster (disclaimer: I don’t count certain phases that my kids go through when they are driving me bonkers).  I work in hospice; if nothing else, I’ve learned that we need to cherish every day as it happens.  But I read an article by a physician the other day and it made me wish that we, as a society, could fast forward immediately to the world that she was describing.

The article was written by Dr. Susan Block who is the Chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber and Brigham and Womens Hospital and Co-Director of the Harvard Medical School Center for Palliative Care.  You can read the full version of her article here.  But in a nutshell, she talks about how advances in medicine have created a culture in which we depend on, and trust, our health care system to make us all better (which, as we know, is not necessarily a good thing).  Hundreds of years ago, death was accepted as a part of life’s cycle.  Now, because illness can be managed so well, it almost comes as a shock when we are faced with the reality of losing someone we love or faced with our own end.  In today’s society, death has become much harder to handle.

Dr. Block says we start too late — talking, thinking, and acknowledging death.  She asks us, “What would happen if we acknowledge that people die, shared our best available prognostic information, and supported patients in thinking about death and what kind of path to follow as health deteriorates?”

So here’s the health care system Dr. Block proposes in her article.  It’s one where all patients have to designate health care proxies when enrolling in health insurance (it forces us to at least start thinking about end of life, and at a much earlier age).  A system where physicians who care for chronically ill or terminal patients would be trained in having discussions with their patients about goals of care and end-of-life decisions (and ideally, these discussions would translate to open dialogue in other medical fields as well).  And then, after these discussions happened, there would be a way to document the patient’s wishes and create standards that would be used as indicators for good care (medical records wouldn’t be complete without the information gleaned from these important conversations).

It sounds so simple, really.  I wish it could be.  But the reality is, we have a considerable road ahead to travel until we can reach this new health care state.  There are political agendas to bridge, costs to consider, biases to overcome, and stereotypes to break, among other factors.  But until then, we can do our part to create a world where this new type of health care system would not only be accepted, but embraced.

So I’m still going to cherish every day.  But, at the same time, I’m going to do what I can to educate as many people as possible about the benefits of end-of-life care planning.  So that Dr. Block’s ideal health care system can become a reality.  Ideally, in my lifetime.

Hospice is much more than I thought

Posted June 4, 2014 by hpccr
Categories: awareness, education, end of life, hospice, Levine & Dickson Hospice House

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by Aaron Casp, UNC School of Medicine class of 2015

hospicetreeMy initial preconceptions of people under hospice care were that they would be totally bedbound, and their entire life would be encompassed by their disease.  I had assumed that they would be depressed and basically nonfunctional.  Because of this, I initially cringed at the idea of visiting these patients because I was not sure how the idea of terminal illness and death would look when it was personified in an actual patient.  However, I am very glad that I had this opportunity to not only dispel my previous notions, but also to demystify the hospice care process and force me to become more comfortable with facing a terminal patient.

Before the Hospice & Palliative Care Charlotte Region care team meeting at the start of the day, I had assumed that the hospice employees were comprised of nurses and nursing assistants only.  The depth and breadth of expertise within the hospice team went far beyond that; each patient had a CNA, a nurse, a social worker, volunteer coordinator, as well as an attending physician.  All of these people had input and were able to make care change suggestions to improve not only the patients’ medical comfort, but also various aspects of their lives.  Each team member plays an intimate role in providing care and services for the patient, coordinating services, and assuming many of the complex tasks to navigate through the difficult end-of-life transition.  But I never knew how difficult that transition might be for the actual hospice staff as well.

All of the team members had been working for hospice for several years, and were very used to the process.  I assumed that they would be somewhat numb to the deaths, and approach it from a very detached, clinical standpoint.  However, it became abundantly clear that the staff members were extremely close to their patients, and knew detailed information about their lives and families.  The patients were almost treated as part of the hospice team’s family.  As a result, updates for a patient’s decline or notifications that someone was near death were met with more emotion than I had expected.  The hospice staff updated each other and laughed during the interdisciplinary meeting, and it began to feel equally therapeutic and work-related.  Sharing stories and discussing cases at these meetings in an informal manner seem to lighten the burden for many of them, which I think is absolutely necessary when dealing with such an emotionally heavy topic.  This commiseration and camaraderie all happened before we began seeing patients for the day, but was extremely thorough and surprisingly helpful for logistical purposes.  It ensured that all the moving parts of the hospice care team were on the same page and had the same overall approach to an individual patient.

When we began actually seeing patients, it was surprising to me how many of them were going about their lives. They seemed to have moved beyond simply ruminating about their disease, and were now operating with quality of life as the primary outcome.  I initially thought they would be anxious or depressed. While there might have been some component of that, many of them were actually at peace with their terminal prognosis and living relatively comfortably with their illness.  Of course a few patients, especially those in the inpatient unit, were seriously ill, but their family members were calm and extremely grateful for the care they were receiving.  Even during the most difficult time imaginable for these families, they were prepared and glad to know that their loved one was receiving comforting treatment.  They were very appreciative of the support they were receiving and glad that they could concentrate on spending the last moments with their loved ones.  The patients I met were all very comfortable with the fact that they were expected to die within a week or so, making the goals of care very clear and aligned between the doctor and patient.

Overall, my hospice experience made me realize that these services extend far beyond just the medical aspects of dying.  The team members work hard to ensure that the patients have everything they need in order to have a good death.  This, in turn, allows the patients to move beyond just dealing with their terminal disease, but to spend their final time with loved ones in relative comfort.  These services are important for patients and families, and accomplish much more than I had ever thought previously.


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