A lovely bench

Posted September 30, 2015 by hpccr
Categories: awareness, end of life, hospice, Levine & Dickson Hospice House at Southminster

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by Andrea Powell, HPCCR Marketing Manager

Kapustin benchA lovely bench sits in the courtyard of Levine & Dickson Hospice House at Southminster honoring the memory of a beloved husband, father, and grandfather. Rafael Kapustin came to the hospice house in September of last year and spent his final days with us, finally free of the pain that had plagued him for so long.

Residents of Miami, Rafael and his wife Sara came to Charlotte so that Rafael could participate in a trial at the Levine Cancer Institute. They chose Charlotte because their son Andrew lives here with his lovely wife and beautiful children, all of whom would be able to visit Rafael and Sara as often as they’d like.

So from April until September 2014, Rafael endured the treatment. He spent quality time with his family and he followed the trial protocol.  He relished in the proximity to loved ones and gave every last family member memories to forever treasure.  More importantly, he was able to achieve an important life goal he had set upon entering treatment: witnessing the bar mitzvahs of his twin grandsons, which he joyfully did just one month before he died.  At the end of September, however, with his pain escalating, he opted for comfort care.  Upon the recommendation of his doctor, he came to Levine & Dickson Hospice House at Southminster.

Rafael spent a restful week there with his family. He had welcome relief from his pain and passed away peacefully after many visits from friends and loved ones. His family was so appreciative of his week there that they purchased a bench in his memory and placed it in the courtyard. Just last week, almost a year exactly after his death, his family gathered once more at Levine & Dickson Hospice House at Southminster for a dedication service. The service was full of wisdom and warmth, qualities that Rafael always embodied and that his family truly cherished.

A lovely bench sits in the courtyard of Levine & Dickson Hospice House at Southminster.  And  thanks to the Kapustin family, it will offer a peaceful and welcoming spot for loved ones for years to come.

For information about making a gift to HPCCR in memory of a loved one, contact our Development department at 704.375.0100.

Tickling the insides

Posted September 24, 2015 by hpccr
Categories: cancer, dementia, long-term care, volunteering

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by Andrea Powell, HPCCR Marketing Manager

Irene Deberry_Sardis Oaks

Irene Deberry

It doesn’t matter how old you are, there’s just something about a birthday cupcake that will tickle your insides and make you smile.  Oh sure, there are people who profess to hate their birthdays.  But I simply can’t believe that the act of blowing out a candle that sits atop a delicious and perfectly proportioned tiny cake could make someone actually mad.

And because at HPCCR we know the simple joy that a cupcake can bring on one’s natal anniversary, we try to make sure our patients feel loved on their day.  Case in point: back in July, our volunteer department was able to procure a dozen cupcakes to celebrate the birthday of Irene Deberry, one of our patients living at a skilled nursing facility.  Irene was turning 90, a huge milestone by anyone’s account, and her family was coming into town to help her celebrate.  Because Irene is a woman definitely worth celebrating.

Irene was a fiercely independent, southern woman who lived alone until she fell and broke her arm in March last year.  Her injury required surgery and while they were inserting the breathing tube for the general anesthesia, they discovered a mass in her throat.  A cancer diagnosis soon followed, along with some worsening symptoms of dementia.  Knowing that she could no longer live at home, Irene was moved to Sardis Oaks skilled nursing facility, where she currently resides.

In March, after having quickly diagnosed Irene’s cancer, the doctors gave her a feeding tube so that she wouldn’t have to swallow food.  But that didn’t seem to sit well with Irene — she lost weight and was not happy.  She was so hungry that she ended up taking food off of the nurse’s cart.  After conversations with Irene’s family and her doctors, it was agreed that they would remove the feeding tube and let her eat solid food.

Irene hasn’t looked back.  She’s gained some weight back and is certainly happier.  And when presented with cupcakes by her hospice team on the day before her birthday, she did not hesitate.  Nor did she decline them the next day when her family arrived and more cupcakes were passed around.

Those cupcakes were a celebration of Irene’s birthday, sure.  But they were more than that.  They were a celebration of her life and her ability to still enjoy it, despite dementia and a terminal illness.  It was a celebration of making her wishes known so that she could enjoy tiny, delicious cakes to acknowledge the day she was born.  And when you look at that face, you just know that those cupcakes tickled her insides all the way down.

Special thanks to the HPCCR volunteer department (especially Crystal England) as well as Dan Morris, Irene’s social worker and Jonnie Waldo, Irene’s loving companionship volunteer.  They had a party for Irene at Sardis Oaks the day before her birthday, complete with said cupcakes, flowers, and cards.  Irene could certainly feel the love!  

Don’t worry, we’ve planned your Saturday

Posted September 17, 2015 by hpccr
Categories: fundraising, hospice, Hospice & Palliative Care Lake Norman, special events

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by Andrea Powell, HPCCR Marketing Manger

September is always a busy month here at HPCCR.  As you know, we just had our Hit the Brixx 10K / 5K last weekend.  (And we just missed the cooler weather!  Thanks to everyone who braved the humidity!)  Well, we’re doubling up on events this weekend because, you know, we like to give you a choice when it comes to supporting our organization.

This weekend, you can either shoot guns (safely) or eat appetizers and drink wine.  Or do both.  Your call.

Bull Shooters Logo_30First up is the Shoot For Joy sporting clay fundraiser, an event hosted by the Mecklenburg Bull Shooters.  It starts at 7:30am on Saturday morning.  You can shoot clay targets during the morning session, take a break for lunch (and a raffle!) and then shoot again during the afternoon session.  You can go solo or as a team and all shooting levels are welcome!  For more info, visit the event page on our website.
400x400 BV Taste of Birkdale FB-POSTYour other option is our annual Taste of Birkdale, which supports Hospice & Palliative Care Lake Norman.  It starts in the afternoon on Saturday (3pm) and you get to sample entrées from some of Birkdale’s best restaurants and wine from Total Wine.  After you’ve enjoyed those delectable treats, you can feast your eyes on fall’s latest must-haves during the fashion show that starts at 5pm at the fountain.  This evening never disappoints.  Check out the Taste of Birkdale page on our website for all the details.

So there you have it.  We’ve planned your weekend for you.  You’re welcome.

For more information about these or any events contact Nancy Cole, Director of Special Events, at colen@hpccr.org or call 704.375.0100.

On the road to Lincolnton (another great clinic story)

Posted September 10, 2015 by hpccr
Categories: awareness, cancer, caregiving, Hospice & Palliative Care Lincoln County, Levine & Dickson Hospice House, palliative

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by Andrea Powell, HPCCR Marketing Manager

(L) Amy Atwell, nurse liaison, and Jessica Hill, nurse practitioner

Amy Atwell (l), nurse liaison, and Jessica Hill, nurse practitioner

I’ve worked in many different companies — a bank, a telecommunications firm, a branding agency — but none of these places afforded me the vast and varied experiences like the ones I’ve had working for a hospice organization.  I’ve been in patient homes, in long-term care communities, clinics, and in hospice houses and I’ve traveled through numerous counties in North and South Carolina to meet families and collect stories.  The opportunities are seemingly everywhere.  That’s not surprising when you take into account the outstanding care we offer our patients; they are usually more than happy to share their experiences with us.

So that’s how I found myself on the road to Lincolnton a few weeks ago, ready to once again put on my listening ears and take notes.  We recently started holding a palliative care clinic at Hospice & Palliative Care Lincoln County (HPCLC) and it was high time for me to check it out.

I’d been to the palliative clinic at Levine & Dickson Hospice House – Huntersville a couple of times before I visited this clinic at HPCLC.  Both experiences were completely eye-opening and wonderfully educational.  But one was very different from the other.  The patients and families I sat with at the hospice house received advice and counseling about maintaining quality of life and accessing support; in Lincolnton, the patients were concerned with quality of life too, but the discussions rotated more around symptom management.  (Disclosure: At LDHH-H, the patients I observed had dementia while the patients in Lincolnton were cancer patients — very different situations and goals of care.)  So, from my observations, the clinic in Lincolnton felt more like a traditional “doctor’s visit” while the clinic at LDHH-H felt more like a counseling session.

There was one thing, though, that both clinics had in common: the clinicians were out-of-this-world fantastic.  In Lincolnton, I met Amy Atwell, nurse liaison, and Jessica Hill, nurse practitioner.  They were both utterly charming and approachable — qualities that (I believe) are crucial for interacting with chronically sick patients.  And what’s more important, it was so very apparent that Amy and Jessica care deeply about their patients.  They do not offer mere lip service; everything they say comes from a blend of engaged mind and passionate heart.  They are both intentional and well-meaning in their actions and the counsel they offer.

I watched them interact with two patients that day.  Both patients were women, both had cancer.  The process was the same with each  —  Amy, the nurse liaison, spoke with the patient first and Jessica would follow up.  Amy counted and documented medications, asked about pain levels, and took vitals.  She asked about their eating habits, took their weight, and made sure they understood the timing of their pain medications.  Obviously very familiar with her patients, she joked with them, was sympathetic, delightfully “bossy”, and wholeheartedly supportive.

Jessica (the NP) would come in after Amy was finished.  She asked more questions of her patients, probing a little deeper into their mental state.  She asked about their anxiety levels, and how their pain was affecting them.  The first patient she saw, Deborah, was still receiving radiation; Jessica gave her tips on how to deal with the side effects.  (“Radiation loves protein,” I heard her say.  Who knew?)  She was able to explain what happens to the body during treatment in a way that made complete sense, using layman’s terms that even I could understand.  Jessica praised Deborah for accomplishments that she’s made since she started coming to the clinic two months ago — staying on top of her pain, and making good food and lifestyle choices.

HPCLC patient Kim with her son, Steven

HPCLC patient Kim with her son, Steven

The second patient that day, Kim, was a true “success” story.  Several months ago, the pain and nausea from her disease and treatment were so bad that she literally couldn’t get out of bed.  But since starting her visits to the clinic in April, her pain and symptoms are under control, she’s been able to eat, and has even gained a few pounds.  When Amy and Jessica saw her, they both had nothing but compliments — Kim had recently cut and colored her hair and, on that day, she had even put on makeup. (Another disclosure: Kim knew she was going to be observed and potentially photographed so she came prepared!)

Kim will be facing a detailed surgery soon and, understandably, had some concerns (I believe the words “dreading it” were used) over what would be happening.  Jessica calmly walked her through the steps of the procedure (again using terms that everyone in the room understood) and I watched as Kim visibly relaxed.  Jessica has an unbelievable knack for explanation.  She doesn’t sugarcoat but she doesn’t make it sound scary either.  She seems to sense the emotions that her patients will experience before they do and, as such, she tailors her words to compensate for those potential fears.  It’s a ministry of sorts that is extremely inspiring to witness.

Kim came to the clinic with her son, Steven.  Steven is Kim’s primary caregiver, sharing his mother’s journey and all the ups and downs that come with cancer treatment.  They both could not say enough good things about the HPCLC clinic and their interactions with Amy and Jessica.  They told me that coming to the clinic is so different from other doctor appointments.  I heard, “They don’t talk down to us here,” and “They spend as much time with us as we need.”

The mindsets and attitudes are just different here, born from a true desire to help combined with personal experience and perspective.  Jessica’s own father has cancer so she has been on both sides of the stethoscope.  She inherently understands the fear of watching a loved one fight this awful disease yet she also has the medical background and the clinical ears to assimilate information.  She acknowledges, though, that assuming the “loved one” role is often much harder than the “nurse practitioner” role.  Therefore, her empathy for her patients is real; her motivation to offer peace of mind is completely true and one hundred percent earnest.

I walked away from our Lincolnton office once again completely impressed with the staff members who work for this organization.  Like so many others I’ve had the fortune to observe, compassion, care, and concern simply radiate from the faces of Amy Atwell and Jessica Hill.  That, along with their dynamic personalities, goes a long way toward disproving the stereotype that “going to the doctor” is stressful and awful.  They had their patients laughing and smiling, a welcome relief (I would imagine) from dealing with cancer day in and day out.  It was truly a sight to behold and an experience that I won’t soon forget.

I’m telling you what.  You just don’t have days like that when you work at a bank.

September stress relievers

Posted September 1, 2015 by hpccr
Categories: awareness, cycling, Hit the Brixx, hospice, Kids Path, Levine & Dickson Hospice House, Pedal The Park

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by Andrea Powell, HPCCR Marketing Manager

It’s September 1st which means we are looking right down the barrel at Labor Day, the official “end” of summer.  And so begins the days of desperately wearing our white shoes and toting our white purses one last time before we have to pack them away for another nine months.  And listening (once again) to our children bemoan the cruelty of homework.  (Seriously?  Talk to me again when you start college!)  And unwillingly becoming slaves (once again) to their forgotten project deadlines, their inability to remember upcoming tests, and their inherent lack of concern over the stress these aforementioned things cause us.

You know what’s a great stress reducer?  Exercise.

Pedal_the_Park_logo_Tshirt10And we’ve got great exercise options!  If a fun, scenic biking challenge is what you’re looking for, come join us on Labor Day (Monday, September 7) for Pedal The Park.  It boasts two different rides — 30-mile and 60-mile — leaving from Levine & Dickson Hospice House – Huntersville.  Both self-paced rides meander through Mecklenburg and surrounding counties on well-marked courses.  And you’ll have a delicious buffet waiting for you when you finish.

Pedal The Park registration begins at 8am.  The 60-mile ride starts at 9am, and the 30-miler at 9:30.  And there’s even a short family fun ride at 10am.  So you can’t complain that you have limited options.  Visit our page at racesonline.com to register!

HTB2015-NANCYIf Pedaling The Park’s not your thing, you can Hit the Brixx instead.  Meet us at the uptown location of Brixx Pizza (225 E. 6th St.) on Saturday, September 12 for a 10K and / or a 5K.  The 10K starts at 7:45am and the 5K begins at 9am, perfectly timed so you over-achievers can do both races if you so choose.  And the best part?  The pizza and beer waiting for you at the finish line.  It is, without a doubt, the most fun after-race celebration in town!  You can register for Hit the Brixx at http://runforyourlife.com/brixx10k5k/.

So join us for either or both of these events!  We can’t promise that doing so will make your kids more responsible about homework, tests, and projects but after all the physically demanding stress relief we’re providing, you just might throw away those boarding school brochures.  At least until next year.

Proceeds from Pedal The Park benefit Levine & Dickson Hospice House – Huntersville and proceeds from Hit The Brixx benefit Kids Path®, our pediatric program.  For more information, contact Nancy Cole, Director of Special Events at colen@hpccr.org or call 704.375.0100.

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.


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