Fate, coincidence, and an ALS clinic

Posted August 27, 2015 by hpccr
Categories: advance directives, advocacy, awareness, caregiving, hospice, Hospice & Palliative Care Charlotte Region

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by Andrea Powell, HPCCR Marketing Manager

Wes and sandra leconte

Sandra and Wes Bobbitt, September 2011, two months after diagnosis

There were two patients that day.  I could have been assigned to either one but (as far as I’m concerned) fate intervened.  And that’s how I met Wes and Sandra Bobbitt.

A few weeks ago, my coworker Heather, an HPCCR Education & Resource Manager, asked if I would like to join her at the ALS clinic in Charlotte to shadow a patient.  As I have a slight connection to ALS (which I will explain later), I quickly agreed.  We met there early on a Friday morning, both of us a little nervous and not knowing what to expect. Which is probably a good thing.  Going in blindly, without preconceived notions, is like giving an artist a blank canvas — you have no idea what the final outcome will be, and while the process to get there will be layered and complicated, you know it will be genuinely real.  That’s how it was for me, anyway.

Even though my emotions were admittedly all over the place, it was an unforgettable experience.  The day was both heartbreaking and heartwarming, with a little bit of massive coincidence thrown in for good measure.  And I was only there for four hours.

Two patients had agreed to be shadowed.  One of the patients was under the care of HPCCR and the other was under the care of a different hospice.  Heather, whose job is to stay current with the competition, went with the patient not under our care.  I  joined Wes Bobbitt and his wife, Sandra, for the first half of what would prove to be a very long day for them, indeed.

The ALS clinic is a brilliant concept.  I’d never really thought about it, but it’s very daunting for patients with this disease to get out and about.  So twice a quarter, the Carolinas Neuromuscular Disease/ALS-MDA Center holds a day-long clinic where patients can see the entire ALS team at once.  Throughout the day, they’ll meet with the nurse, doctor, pulmonologist, social worker, occupational therapist, speech therapist, the person who adjusts their wheelchair, the person who will talk to them about insurance, the person who will help them with augmentative communications (ways to communicate other than speaking), and a nutritionist.  They will arrive at 8am and can potentially be there until 4 or 5pm.  That’s a very exhausting day, but you’re packing in over a month’s worth of appointments.

“My” patient, Wes Bobbitt, was diagnosed with ALS in July 2011. Wheelchair bound, his disease has progressed to the point where he can no longer move his legs, breathe on his own, or swallow food or liquids.  He has limited movement with his arms and neck, but can still nod his head and use his hands to communicate (in a limited capacity) with an iPad.  Nevertheless Wes is cheerful, friendly, and maintains a great sense of humor.  Not to mention, he’s a very good sport for allowing a complete stranger to shadow him to multiple meetings with medical professionals who are discussing very personal issues.

I watched as they weighed Wes and took his vitals.  I listened as the nurse asked his wife, Sandra, about his symptoms and how he’s been doing since his last visit.  I joined them as they visited the ALS doctor, the social worker, and the pulmonologist.  I hung out with them in the clinic lobby (where they talked to the wheelchair guru about the tweaks needed to make Wes more comfortable) as they waited for their turn to visit each of these individuals.  I talked to Sandra and asked questions.  I observed.  And I learned.

ALS is a terrible disease.  It robs the body’s ability to function yet leaves the mind intact.  ALS moves slowly with some patients and like a rocket with others.  The patient that my colleague Heather followed was diagnosed over ten years ago and is still talking and breathing on his own.  Wesley was unable to eat or drink after just three years.

One of the most profound and tragic symptoms of the disease, in my opinion, is the loss of communication between patient and loved ones.  There’s an inherent change in the relationship dynamic simply because it becomes so much harder to “talk”.  Wesley must depend solely on his iPad to communicate and as his body grows weaker, his ability to use the device slows as well.  And now, given the effort it takes to type letters onto the screen, Wes is relegated to communicating only his most basic needs — requests to move his head position, to take his medications, or to let Sandra know whether he is too warm or cold.  I asked Sandra if they have actual “conversations” anymore.  She replied that she mostly talks and he listens, a substantial and heartbreaking contrast, I would imagine, from when their marriage began 35 years ago.

Sandra has kept her full-time job; she acknowledges that staying busy helps her not get too overwhelmed by stress.  They need caregivers in place, though, to cover the hours when Sandra is not at home.  When Wes first started needing help, friends from church would come over, bring a meal, and watch a movie with him.  As his disease progressed, however, Sandra realized they needed nurses.  They also decided to bring in hospice.

Unlike some families, the Bobbitts were not scared of the hospice concept and were not resistant when the social worker at the clinic first broached the topic.  Sandra’s aunt was under hospice care for two years and her mother was also very briefly under hospice care before she died.  So Sandra and Wes understand the value that the hospice care team brings to the patient and the patient’s family.  Indeed, the HPCCR care team has been an immense help to them since Wes came under care in February.  Their nurse comes once a week and their nursing assistant comes twice a week to help with bathing and other tasks.  They also receive regular visits from a social worker, and the hospice physician comes once a month as well.  All of Wes’ medications are now provided through hospice; that alone is a major convenience.

At the same time, Wes and Sandra are under no illusions; they know what the future will eventually bring.  Advance directives are in place and they are even working with a writer to help with Wes’ obituary.  But in the meantime, they are making the most of their time together, and with their two children.  Their daughter is getting married this fall and Wes plans to “walk” her down the aisle.  A huge fan of Phish, Wes is currently trying to talk his daughter into a father-daughter dance to one of the bands’ songs.  (I told you he has a sense of humor.  Thinking his daughter will go along with this plan also speaks to his optimism!)

Now we come to my connection to this disease.  Unfortunately, my sister’s father-in-law, Roger, passed away in January from Primary Lateral Sclerosis (PLS), a very slow-moving form of ALS.  Roger lived with it for over 25 years.  I knew him for the last ten of those years and I saw how difficult it was — for him, his wife, his children, and his friends.  Roger had great support, though, from some amazing caregivers, from friends, and from his church.  The very church, in fact, where Wes and Sandra’s daughter will be getting married this fall.  That was the first coincidence I uncovered.  Turns out Wes and Sandra knew Roger and are still friends with Roger’s wife, Dianne.  The talented writer who helped write Roger’s obituary is the same man helping Wes and Sandra.  He’s got quite the job ahead of him because Wes has had a full life.

The photo of my nephew's baptism taken by Wes

The photo of my nephew’s baptism taken by Wes at Myers Park United Methodist Church

By trade, Wes is a photographer.  He worked for years at the Charlotte Observer, but is also an accomplished travel photographer.  And then there are the weddings, corporate events, and church pageants he attended, the fruits of which round out his portfolio.  The walls of his church, Myers Park United Methodist, are lined with his beautiful work.  There’s one piece in particular on those walls, though, that is special to my family.  In one final fantastic coincidence, Wes was the photographer at my nephew’s baptism over eight years ago.  He took a gorgeous photo of my infant nephew staring into the eyes of Dr. Howell, the senior pastor of the church.  This cherished image hangs in Myers Park United Methodist Church just as it does in my sister’s house — it’s one of the first photos you see, in fact, as you walk through her front door.

There were two patients that day — for me and my coworker.  But there were many, many more patients at the ALS clinic that Friday morning.  I was struck by the camaraderie among those families; all in various stages parceled out by this unforgiving disease, but living through it together, supporting each other.  I was struck by Sandra and Wes Bobbitt, strong in the face of challenge, living life with optimism and grace.  And then I think of my nephew’s face, the innocence in it on his christening day, perfectly captured by Wes in that photograph.  It made me realize something.  We start this life out, never knowing where we’ll be led and what obstacles will lay in our path.  But our attitude, how we face those obstacles, determines our happiness.  The families I saw that day had chosen to pour their energy into living their lives the best way they know how.

It’s a humbling lesson that I could not have learned without fate and a little bit of coincidence.

Blown away

Posted August 20, 2015 by hpccr
Categories: awareness, hospice, Hospice & Palliative Care Charlotte Region

Tags: , ,

by Andrea Powell, HPCCR Marketing Manager

Video_CameraI have been simply blown away this week.

We have been filming the past few days here at HPCCR because we were asked to create a couple of videos for training and marketing purposes.  So we invited some employees to come and speak on camera about what they do and how they make a difference.  You know, I’m not really sure what I was expecting.  But after two days of intense listening, I do know that those expectations were absolutely left in the dust.

The folks we interviewed ran the gamut from nurses and nursing assistants to social workers, chaplains, and grief counselors.  We asked them all very similar questions about their jobs and looked forward to what they’d say.  What I truly loved about this experience is that we got such different answers; we heard wonderfully varied perspectives and were offered personal experiences and philosophies.  Those of us listening got teary eyed occasionally, but we also laughed, and a few of us downright sobbed.  It was at some times emotional and raw, but it was at all times 100% honest and 110% passionate.

Interestingly, there was one question that was answered practically the same way each time by our interviewees.  That was when we asked them what they wished people knew about hospice care.  Without hesitation, they all said they wished that everyone understood that hospice is not a death sentence.  That asking for hospice does not mean the patient has given up.  They want folks to know that choosing hospice means choosing quality of life and enjoying that life right up until the end.  With the help of hospice, it’s not only possible but inevitable.

Our employees were so earnest about their feelings; it was a life sermon and we were the witnesses.  Everything they said was meaningful and beautiful, ringing with wisdom, practicality, and hope.  Man, I just wish you could have heard them.

Luckily you will.  But first we have to go through the footage and make the excruciating decision about what must be included and what we’ll have to put away for another day.  I honestly wish we could use every word.  Rest assured, though, you will be blown away by the final product.  Just like I was by the dedication, passion, and love I heard come straight from the heart of each person we interviewed.

The stories speak for themselves

Posted August 12, 2015 by hpccr
Categories: awareness, dementia, hospice

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by Andrea Powell, HPCCR Marketing Manager

tiny piano appA while back I shared a few stories from our social workers who have been successfully connecting with dementia patients by using applications they’ve downloaded onto their iPads.  These patients, normally unresponsive, have surprised the social workers and especially their family members by interacting and showing interest in what the iPad apps have to offer.  Here are a few more stories to warm your heart.

From Lesley:

I used my iPad to pull up the main street of East Aurora, NY for a resident in memory care.  He was born there and had a big smile as he watched the video.  For another resident, I used my iPad to pull up a video of New York City taxi cabs because he told me that’s how he used to get around when he lived there.  He laughed at the video saying, “That’s how they drive!  Nothing like New York City!”

From Tanya:

I have an elderly female patient who has significant cognitive and communication deficits.  She sleeps over 20 hours a day and is lethargic when awake.  She used to play the piano and organ at her church, but she has a hearing deficit now so playing music is not very beneficial.  But when I open the Tiny Piano application on my iPad, she becomes awake and animated.  She touches the keys with her usually unused hands; playing this small piano brings her such joy as evidenced by the nonstop smile on her face. But she’s also getting range of motion to her hands and fingers, which is an added benefit.

It is so gratifying to be able to touch the lives of these patients and to watch the excited faces of their loved ones as they observe the interaction.  We relish these opportunities to restore quality of life to patients.  Most of them don’t have the ability to tell us how much they enjoy these visits from our social workers, but their faces (and these stories) do it for them.

Heartfelt gift

Posted August 5, 2015 by hpccr
Categories: awareness, end of life, hospice, Hospice & Palliative Care Lincoln County, Levine & Dickson Hospice House

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by Andrea Powell, HPCCR Marketing Manager

heart painting for LDHH-HThe painting hangs on the wall at Levine & Dickson Hospice House – Huntersville, a beautiful reminder that love has a constant presence in this special place.  Perhaps it’s an homage to the hearts of the patients who were blessed to call LDHH-H their last home.  Or maybe it captures the kind hearts of the staff who so gently and passionately care for the patients and families inhabiting the rooms.  Most likely, it’s both of these things.

We have Gini Sellers, a Kindergarten teacher at Lincoln Charter School, to thank for the painting.  That’s because a while back, one of Gini’s fellow Kindergarten teachers was going through the process of getting her mother admitted to a local hospice house.  When visiting her mom, this teacher was struck by a painting of hearts she saw there; hearts that were all different sizes, shapes, and colors.  She came back to work and told her coworkers about it and the image stuck in Gini’s mind.

Soon enough, Gini found herself in a similar situation.  Her mother-in-law was diagnosed with pancreatic cancer and came under the care of Hospice & Palliative Care Lincoln County in November last year.  When her symptoms could no longer be managed at her home, Gini’s mother-in-law was moved to Levine & Dickson Hospice House – Huntersville.  She passed away there about a week later.

Gini told me that they were expecting the hospice house experience to be terrible; they were frightened of every implication it held.  Instead, she found herself surprised at almost every turn.  She was touched that the staff members were just as concerned about her family’s needs as they were about her mother in law’s.  She was shocked at how hands-on the doctors were.  She was not expecting the environment to be so comfortable and she certainly didn’t think that she would describe the experience as positive.  But it truly was.

Through it all, Gini remembered that heart painting her coworker had told her about.  And an idea began to form.

All of the grade levels at Lincoln Charter School are required to complete a certain number of community service hours each year; the Kindergarten classes must complete five.  Gini thought that creating a heart painting (like the one she’d heard about) for LDHH-H would be the perfect service project to cross off that requirement.

heart painting hanging_LDHH

The heart painting hanging on the wall at LDHH-H

Hearts were drawn on a large canvas and children began painting, choosing the heart they wanted and the color they wished to paint it.  More and more hearts were added as the previous ones dried, creating a multi-layered (and extremely bright) effect.  All 66 Kindergarten students and their three teachers participated in the project.  The art teacher helped add the finishing touches.

The result is a beautiful, happy collage of color and texture with an all-encompassing, all-important theme — love.  It’s the sentiment Gini and her family felt at Levine & Dickson Hospice House – Huntersville, it’s the emotion that drove the creation of this beautiful piece of art, and it’s the strongest feeling we have for those we hold dear.  And this painting portrays exactly where we hold those precious ones — in our hearts.

Special thanks to Gini Sellers and the students at Lincoln Charter School for creating this beautiful painting for LDHH-H.  It is truly a special gift and is most appreciated!

In my experience. . . then and now

Posted July 29, 2015 by hpccr
Categories: advance directives, caregiving, dementia, end of life, hospice, Hospice & Palliative Care Charlotte Region, palliative

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Editor’s note: Every month, a medical student from UNC spends a two-day rotation with HPCCR.  They come on a Wednesday, attend an interdisciplinary team meeting, then accompany a clinician on a patient visit.  On Thursday, they spend the day at one of our inpatient units.  Many of them send us their reflections after the rotation is over.  The insightful reflection below was written by a student who was happy to have it published but wished to remain anonymous.

Past-Present-and-Future-signsIn my experience, palliative care and hospice includes caring for the family and guiding them as an essential part of caring for the needs of the patient.  Under good circumstances, loved ones are usually the real caregivers and, especially for those patients whose mind is slipping, the people in charge.  The patients I tended to on my day were memory care patients who were no longer able to direct their own care, thus making the responsibility fall to their family.

The families I met already had their loved ones in a care home.  They had likely already been through the tough conversations and turmoil that comes from recognizing the course of these diseases.  Their faces were weary and practical. I’ve seen these faces before when my own relatives were dying of slow diseases.  In my experience, the highest hurdle for a family is coming to terms with the situation, from an emotional perspective, to make decisions.

It’s such a closed-in, deeply personal process that I had always been curious how other families handled it.  I remember how front-loaded the deaths I’d seen were.  All the talks with family and staff, the home deliveries, and the plans for how to proceed gave a sense of purpose and structure to my family.  I get that same sense of purpose and structure from these families.

The services provided to these families by the Hospice & Palliative Care Charlotte Region staff are not unlike those of a somber mountaineering guide.  A group of people are going on a trip together and the guide provides logistical support and tries to keep people out of trouble.  Ironically for these patients’ journeys, the ostensibly heroic interventions are the ones usually avoided or counseled against.

The focus of most of the family meetings was really about establishing a relationship with the team and making sure wishes about care were followed.  I was impressed by how matter-of-fact everyone was. In some ways the hard conversations had already been had before these meetings took place and I really saw what it is like for this process to go smoothly.  The care team did a great job of helping them articulate what they wanted on paper without pushing them.  The particular families we were with mainly required explanation of what the forms meant, but had clear ideas about what they wanted for their ill relatives and what the relative would want for themselves.

I noticed how carefully the families were counseled about options they have, what to expect, the role of team, and who they can contact.  Emotions in these moments were muted, more expressed in pauses and silence, a healthy respect for the weight of the situation.  There is a certain stoic camaraderie between the team and the family that emerges in these conversations that is more familiar and realistic to me than the idealized hyper-empathy that sometimes feels expected.  I was glad to be part of the team for that brief time and to gain further understanding of how to help and support these patients and their families.

Removing the line

Posted July 16, 2015 by hpccr
Categories: advance directives, awareness, end of life, hospice, palliative

Tags: , , ,

by Andrea Powell, HPCCR Marketing Manager

draw-the-lineI read an article today that perfectly illustrates an important point that hospice organizations always try to drive home: hospice care is about what the patient wants.  It’s glaringly obvious when you read this insightful piece that sometimes what the patient wants might be completely unexpected and furthermore, might be in conflict with what the physician wants for that patient.  The truly compassionate doctor, however, will bypass their own judgments and opinions and do everything possible to accommodate the patient’s wishes.

The author, a hospice and palliative care physician, tells the story of “Ms. Weatherby”, a 57-year old hospital patient whose lungs had stopped working due to various diseases.  Ms. Weatherby was intubated, meaning she had a tube inserted into her throat and down her trachea, to help her breathe.  To say that intubation is uncomfortable, both physically and mentally, is an understatement.  But there was more.  She also had a feeding tube (through her nose) and a myriad of other tubes to help her with other daily functions.

Now, if this were me, I’d be miserable.  But apparently Ms. Weatherby was in fantastic spirits, very positive, and had her laptop open along with blank journals surrounding her, ready for her pen, so that she could communicate with her family and friends.

After several days in the hospital, the doctors were able to take the breathing tube out for a short period of time.  Ms. Weatherby was asked if, when her lungs weakened again, she would want the tube reinserted.  Her response?  An unequivocal yes.

Ms. Weatherby’s other doctors were incredulous.  They simply couldn’t understand her decision to be drastically uncomfortable during the brief amount of time she had remaining.  But her hospice physician wrote something in the article that resonated in its simplicity and virtue.  She said, “When advanced life support becomes comfort care, where do we draw the line?  Based upon what I learned from Ms. Weatherby, I would argue that palliative care begins by removing the line.”

So simple.  So profound.  So right.

Apparently, Ms. Weatherby had important work in front of her yet to be finished.  She had a broken family at odds with each other and she wanted to fix that break before she died.  That was much more important than the discomfort in her lungs and the fact that the rest of her frail body was slowly shutting down.  So in the short time she had left, she chose to be kept alive with all that medical technology had to offer, taking pure delight in very simple comforts — the ability to brush her teeth, warm socks on her cold feet, and communicating with the people she loved.  For her, that was enough.

I think the last thing any of us would want before we die is to be criticized for the final decisions we make.  Honoring last requests, no questions asked, is a very basic right as far as I’m concerned.  Ms. Weatherby’s hospice physician would maybe not make the same decisions if placed in that particular scenario, but she unfailingly honored her patient’s wishes.  She removed her judgments and biases from the equation.  And thus, she removed the line.

Growing pains

Posted July 9, 2015 by hpccr
Categories: awareness, careers, caregiving, cosmetology, hospice

Tags: , , , ,

by Andrea Powell, HPCCR Marketing Manager

growing painsDo you remember when you were a kid and you’d wake up in the middle of the night and your leg would be aching?  Just this dull pain that you couldn’t ignore and that wouldn’t go away?  You were convinced something was really wrong.  But then your mom or dad would tell you, “Nothing to worry about.  Those are just growing pains.”  I still don’t know if that’s really what those pains were, but I can tell you it made me a little queasy to think that I could actually feel my body growing in real-time.  It was fine for my legs to grow longer.  I just didn’t need to know exactly when it was happening.

At HPCCR, we know when growth is happening.  And even though growth (for a hospice organization) is great, it can still create challenges.  Let’s look at the pluses: Growth means that more people are learning about hospice (Yay!  We’re doing our job!) and that more people are benefiting from the substantial advantages end-of-life care has to offer.  Growth means that we’re doing things right.

But the challenges are nothing to sneeze at.  An increase in census means more work for our staff — RNs, NAs, social workers, and all the rest of our clinicians have more patients to cover, administrative staff have more billing issues to handle and more paperwork to process, and more volunteers are needed to meet families’ needs.  We certainly don’t want our staff and volunteers to get burned out.  So what’s the solution?

We find more people.  Exceptional people.

Right now we are actively recruiting RNs.  In fact, we will be holding a job fair next week so that we can find amazing nurses who want a rewarding, flexible job with great hours and lots of autonomy.  Are you a compassionate registered nurse looking for something truly meaningful?  Do you know someone who is?  Then come to our career fair at our uptown office (1420 East 7th Street, Charlotte) on Thursday, July 16 from 2pm until 7pm.  We’ve got all kinds of positions to fill, from case management to admissions to after hours.

If you’re interested, you’ll need to fill out an application (by July 14) on our website (http://www.hpccr.org/careers/job-postings).  Just click on the link that says “RN CAREER FAIR July 16” and then click another link at the very bottom of that page to create your application.  Then come to our office on the 16th.  But come prepared!  Our HR representatives will be conducting some on-the-spot interviews and you’ll want to knock their socks off, right?

And here’s another thing we desperately need: volunteer cosmetologists.  We only have two right now for all of our patients in Charlotte and that’s simply not enough.  Every single one of our patients deserves to feel good and look great.  And they certainly shouldn’t have to wait for that to happen because there are no cosmetologists to visit them.  So if you are a whiz with a comb or brush, or if you routinely make people look fantastic for a living, please get in touch with us.  Your heart will split wide open (in the best possible way) upon seeing the joy you can bring to a woman’s face when she feels beautiful again.

Kids are happy when their growing pains subside.  But as challenging as our growing pains may be, we kind of relish them.  Because, let’s face it, our growth means that we’re helping people in a critical way.  We are offering comfort and relief to patients and families all over North and South Carolina.  We are doing what we’re meant to do — supporting tired caregivers, soothing anxious souls, letting our shoulders get wet with tears of both joy and sadness.  We are filling our hearts with purpose and love.  Our census grows and our spirits soar from knowledge that WE ARE MAKING A DIFFERENCE at the end of life.

We’re growing.  Don’t you want to join us?

 

If you are interested in working for HPCCR, fill out an application and join us at our career fair at 1420 East 7th Street on July 16.  If you are a cosmetologist and would like to volunteer, please call Elise Hurst, Director of Volunteer Services, at 704.375.0100.  


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