Archive for the ‘spiritual care’ category

Going “home”

March 17, 2016

by Andrea Powell, HPCCR Marketing Manager

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Zahyra Alvarez

What is home to you? Is it where you were born? Where you grew up? Or where you’ve lived the longest?

Or is home less of a place and more of a concept? Home could be wherever your spouse is. Or your children. Or your beloved pooch.

But it can be more complicated than that. Because often, it’s a combination of those things — places and people. That’s certainly the case for one of our patients, Zahyra Alvarez.

Zahyra was born in Honduras but came to the United States over 20 years ago with her husband and two children. They originally settled in California but they made their way to North Carolina and that’s where they’ve stayed.

Zahyra is 57 years old and Charlotte is home now. She lives with her daughter, Paola, and two adorable grandchildren. Her son is nearby in Salisbury and her sister is just up the road in Hendersonville.

But so many of her family are still in Honduras, including her mom whose 85th birthday is on Saturday. Zahyra is one of nine children (five girls, four boys) raised by this strong woman. NINE children and she did it all on her own. Not surprisingly, there will be a big birthday celebration to honor the matron of the family. In Honduras, of course.

Zahyra hasn’t been back to visit in almost two years, but she didn’t want to miss the festivities. It would be the first time in a while that all nine siblings would be together with their mother.

Making the trip is easier said than done, especially as a hospice patient. She recovered fairly well after recently having a kidney removed but her strength has been compromised. And she managed to catch pneumonia last week.

Then there’s the expense.

Flying internationally has never been cheap and when you have medical costs on top of everything else, money doesn’t exactly pop up from beneath couch cushions. Zahyra mentioned to her social worker, Allison, that she was planning to sell some crafts she’d made (she’s extremely creative) to raise money for airfare. But Allison had a better idea.

Allison suggested that HPCCR use the family fund to cover the cost of the tickets. The family fund is a reserve of money (funded largely by employee participation) used to help patients cover a particular cost that is extremely important. In the past we’ve used it for various reasons — winter clothing, a suit for a funeral, appliances, or bug extermination.

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Zahyra’s daughter and eight-month-old granddaughter

This time we’re using it for tickets. Zahyra is leaving tomorrow, along with her sister, to fly to Honduras for two weeks to celebrate her mother’s birthday and spend time with her family. HPCCR is sending her “home”.

I use the quotations intentionally. Because after speaking with Zahyra, she made it clear that North Carolina is her physical home; she loves it here and told me that she doesn’t necessarily miss Honduras. But I can tell the old saying holds true for her: home is where the heart is. And here’s the rub. Her heart is with her family, but her family is in two separate places.

So she’s leaving home for “home”. Leaving her children and grandchildren in Charlotte for her mother and siblings in Honduras. And she’s doing it with a smile on her face and one of the most positive attitudes I’ve seen in any HPCCR patient.

When I asked Zahyra how she felt about everything coming together the way it did she told me, “Nothing is coincidence. I have angels because God has sent me a lot of them.” Many of those angels are in her hospice care team, the individuals who are making sure she’s in the best shape possible to travel. And certainly one of them is her social worker Allison, who erased the worry of raising money for two tickets to Central America.

As for the rest of the angels? May they stay close to Zahyra in every place she calls “home”, all the way until she reaches her heavenly one.

 

 

 

Common values, common mission

June 30, 2015

by Carol Anne Lawler, HPCCR Faith Community Educator

summer campProgressive Baptist Church on West Avenue in Charlotte is a true friend of our organization.  Their pastor, affectionately called Pastor Mack, invited me to speak at their Wednesday night Bible study earlier this year.  I clearly remember the evening, as it had just begun to snow, and they wouldn’t even consider canceling the meeting!  They also hosted a “lunch ‘n’ learn” for us in March, a community-wide seminar entitled “What Hospice Can Do for You”, and one of the seminar’s participants recently became a hospice volunteer.

Just yesterday, I happened to be in the neighborhood, so I thought I’d stop by and say hello.  Precious, Pastor Mack’s daughter, church administrator, and now camp director, invited me next door to the recreation center, and I was most surprised at what I saw.  Progressive Baptist has opened its doors to the community and has organized a camp for 125 children, ages 4 to 17, Monday-Friday from 9am-5 pm for all nine weeks of the summer!  Although the cost to attend the camp is minimal, the skills the children are learning will be with them for a lifetime.

This week’s theme is selfishness.  They are learning what it is, how to minimize it, and how to cultivate generosity.  In addition to instruction, playing games, and participating in classes, they also receive breakfast, lunch, and snacks.  The children of west Charlotte are being well-taken care of by this caring faith community.

Hospice & Palliative Care Charlotte Region is proud to have an association with Progressive Baptist Church.  They remind us of the importance of living out one’s values in thought, word, and deed.  From the beginning of life to life’s end, Progressive Baptist believes in making a difference among the lives around them and also understands the importance of compassionate end-of-life care.

Our mutual relationship reminds me of what drives Hospice & Palliative Care Charlotte Region.  Among our core values: we hold the delivery of quality compassionate patient and client services as our highest calling; we act with integrity and dependability, and follow through in all aspects of our work.  Our relationship with Progressive Baptist Church deepens our own mission and values and continues to highlight the importance of a shared partnership that affects those we are privileged to serve.

“Thank you” goes both ways

February 25, 2015

by Andrea Powell, HPCCR Marketing Manager

thank you 2014At Hospice & Palliative Care Charlotte Region, we get thank you notes every day.  They are beautiful, heartfelt expressions of gratitude, written by loved ones, and reading them makes our job a whole lot easier.  I’ve said before that caring for patients at end of life is a calling for our clinicians, but that’s not to say it doesn’t take a toll emotionally.  We have hearts.  We get attached to patients too.  And saying goodbye isn’t easy for us either.  But reading these notes keeps us going.  The words on the paper make us realize that what we do is special.  Meaningful.  And always appreciated.  Here are just a few tidbits:

From a niece: “I did not have a positive experience with hospice care during the loss of my father in Virginia and was somewhat skeptical about hospice care here for my aunt.  I am so glad our doctor referred my aunt to HPCCR.”

From a daughter: “This was our first experience with hospice and we were very impressed with the care and comfort given to our mother.  Attention was paid to every detail for her and the family.  You were honest with us and made helpful suggestions.”

From a family: “Thank you for helping our family through the most difficult time of gradually and painfully parting with the most gentle husband and loving father.  Each member of your team has been kind, supportive, and thoughtful every step of the way while providing only excellent care.”

From a husband: “Without you, we could not have made it with so few scars.  You showed us the way and provided the knowledge and caring services.”

From a daughter: “You are helping us to get through this difficult time in our lives, watching and loving our precious mother as her health declines and she slips away from knowing us and remembering her own vibrant life of 97 years.”

From a husband: “The feeling of confidence which you instilled came not only with supplies and medication, but with the sense that your very personal attention and true understanding of the total situation was always only a phone call away.”

From a son: “I got to spend every second of the last week of my mother’s life with her because of all of you and that is a gift I can never repay.  So I hope ‘thank you’ is enough.”

These notes show gratitude to us, but what these precious, grieving family members don’t realize is that we should be thanking them.  Because these notes remind us why we do what we do.  They refuel our capacity to offer love when our compassion tanks run low.  Their words demonstrate the faith and trust that was given to us; they boost our spirits and renew our dedication to our mission on a daily basis.  You really can’t put a price on that.

The power of a single red rose

December 17, 2014

by Andrea Powell, HPCCR Marketing Manager

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The single Polaroid from their first wedding

These days, when you hear about someone getting married at 18, you immediately start to calculate the odds.  You ask, “What’s your bet that they’ll make it longer than a few years?”  Let’s be honest, it’s pretty rare.  I mean, you’re technically still a child at 18, right?  I know a lot of 18-year olds who can’t make decisions about dinner plans, much less a life partner.

But then you hear about a couple like Henrietta and Ian Hart.  They got married 45 years ago when Henrietta was just 18.  And it’s gone so well, they decided to do it again.

Here’s why.  Henrietta Hart has been living with cancer under hospice care since October.  She was doing well until a little before Thanksgiving; at that point, the decline seemed to speed up a little.  So Ian decided to make a grand gesture, a declaration of his abiding and true love for her.  He re-proposed.

You’ll need a little back story to help you understand the significance of his proposal.  (But this is also the best part of their love story, so of course I was going to share it anyway.)

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The early days of their marriage

Over 45 years ago, when Henrietta met Ian, she was dating someone else.  As Ian got to know her, he was understandably smitten and he began to woo Henrietta in earnest.  One day, during the course of his wooing, Ian gave Henrietta a single red rose.  Well, the boyfriend was not pleased, to say the least.  He was not going to let some newcomer barge in and steal his girlfriend.  So he went out and bought a dozen red roses to dramatically present to his beloved.  A nice gesture, yes, but ultimately ineffective.  Not too long after that, Henrietta and Ian eloped by getting married at the courthouse.  A single Polaroid is all they have to commemorate that romantic day.

Back to present day.  A couple of weeks before Thanksgiving, Henrietta was returning to her room from the bathroom when she came upon a completely unexpected scene.  A single red rose (of course) sat in a vase next to her bed and Ian was standing there, decked out in a suit.  He sweetly asked her to marry him again.  Henrietta, of course, said yes.  They began making plans to have the ceremony at their home on the Saturday before Thanksgiving, which just happened to be the 45th anniversary of their first “walk down the aisle”.

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The bride and groom today

The big day came.  With their son and grandsons in attendance along with Henrietta’s sister and niece (who made a surprise visit), and a few other close friends to round off the guest list, the ceremony began.  Henrietta and Ian, both elegantly dressed, read personally written vows to each other as a Hospice & Palliative Care Charlotte Region chaplain officiated.  Their words were touchingly beautiful and sincere.  Ian, in fact, was overcome with tears as he read his vows to his bride, “When we were married, no one thought we’d make it.  We became one and made a beautiful life together.  We had a family.  Now we celebrate, renewing the vows we said 45 years ago today.  I love you so much and I thank you for everything our lives have been.”

I wish I could have been there for this amazing ceremony, but I was at least fortunate enough to see a small part that was filmed.  You won’t be surprised to know that it was hard to hear the couple’s words over the sniffling of the wedding guests who were completely awash in the profound and poignant emotions of the moment.

Because this is true love, folks.

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“You may now kiss the bride.”

We don’t know how much time Henrietta and Ian have left with each other.  But, from what I understand, a new medication that the hospice nurse suggested is greatly helping with Henrietta’s pain, giving her back a bit of an appetite, and infusing her with some much-needed energy.  Right now, she’s simply looking forward to spending the holidays with her loving husband and the rest of her family.

As Ian said, no one thought they would make it.  But they did; they beat the odds.  Their long and great love story is living proof that wedding vows can indeed be upheld, that love does remain “through sickness and in health”.  And even though illness will take eventually take Henrietta away from Ian, his love for her will ultimately win the battle.  As Henrietta’s ex-boyfriend learned so long ago, single red rose will beat a dozen every time.

 

“I’m with Santa”

December 9, 2014

by Andrea Powell, HPCCR Marketing Manager

Courtesy of the Christmas Elf

Poinsettias courtesy of the Christmas Elf

Want to hear a story to get your “Awwwwww!” factor going and to get you in the holiday spirit?  Of course you do!  (Like you have a choice.)

Here goes.  Last week at Levine & Dickson Hospice House at Southminster, we had a visitor.  He showed up unannounced with a bunch of beautiful red poinsettias.  The folks at the front desk assumed he was visiting a loved one, so they asked him who he was with.  His answer?  “I’m with Santa!”

This gem of a man then continued to bring in more stunning plants and, along with the last ones, offered a card to the staff.  It said, “Thank you for what you do every day.  It makes a difference.  Blessings and warm wishes, the Christmas Elf”.  Then he left, never giving his name and taking his generous anonymity with him.  Another important piece of information?  He also brought doughnuts.  If he wasn’t beloved because of the poinsettias, he gained “mythical” status by leaving those little circles of happiness!

Yes, the holidays are a crazy time of year for everyone.  In the frantic rush of shopping, baking, and attending events, we often forget the best (and most important) aspects of these last few weeks of December: offering kindness, grace, and love to others; recognizing the beauty of a selfless act; and showing appreciation for the people who truly touch our souls.

Well, Mr. Christmas Elf, we can’t tell you how much we appreciated your selfless act.  You have touched us all, no doubt about it.   “With Santa” or not, kind sir, I’m pretty sure your name (whatever it may be) has been written in permanent ink on the big man’s “NICE” list!  We sincerely thank you.

 

The note from the Christmas Elf

The note from the Christmas Elf

 

 

Celebrating end-of-life care in November

November 25, 2014

by Andrea Powell, HPCCR Marketing Manager

After October, which is awash in glorious shades of pink to recognize breast cancer, we come to the month of November, which most of us associate with the beginning of the holiday season. But that’s not all November has to offer. It’s also the month when we acknowledge an important (and often overlooked) service in our community: end-of-life care.

Brooklyn and her brother, Nathan

November is National Hospice Month. Hospice is comfort-oriented care for individuals at end of life (typically with a prognosis of six months or less) who are no longer seeking curative treatment. When we picture hospice patients, we often think of men and women who are our grandparents’ age. But this is not always the case. Brooklyn Cockerline is a perfect example.

On the day that I visited Brooklyn in her hometown of Lincolnton, she was a little under the weather. Thanks to congestion in her chest, breathing was a little more difficult than normal. But you couldn’t tell that she felt unwell at all. In fact, there was a beautiful, joyous smile on her face which became even more pronounced once she got settled in her mother’s lap for our interview.

Brooklyn just turned six years old in October. Typical six-year olds would be running around the house, talking non-stop and getting into everything. Unfortunately, Brooklyn can’t walk and she can’t talk. But she is a most wonderful blessing to her family and everyone who meets her.

Brooklyn was infected with congenital CMV (Congenital cytomegalovirus infection) while in the womb. Her mother, Alicia, contracted the infection while pregnant and unknowingly passed the virus onto her daughter. At the time, Alicia was working for a day care where CMV is a fairly common infection (between 50 and 80% of Americans will have had it by the time they are 40 years old). But for unborn children, the infection is much more serious. It keeps the baby’s brain from developing fully and leads to seizures, low birth weight, hearing loss, and vision impairment.

When she was seventeen weeks pregnant, Alicia learned that Brooklyn had developed congenital CMV. Despite outside pressure to terminate the pregnancy, Alicia and her husband refused to give up on their daughter; Brooklyn ultimately made her appearance at 35 weeks, about a month early.

Alicia and her husband did not know what to expect when Brooklyn was born. But she surprised them. Her birth weight was very normal and she was breathing on her own immediately.

That’s not to say, though, that Brooklyn and her family have had it easy. She’s had seizures throughout her short life which have caused untold damage to her brain and nervous system. She gets sick extremely easily; a seemingly simple cold can turn into an extended hospital stay if not treated immediately. Fortunately, Brooklyn has Dr. Benton in her corner, a wonderful physician who, two years ago, asked Brooklyn’s parents a simple but life-changing question, “Have you thought about hospice care?”

To any parent, it’s a completely terrifying question. But hospice care for children, for the most part, is different than hospice for adults. It is typically harder to know what path an illness might take in a child and prognosis is much more difficult. Dr. Benton was talking about Kids Path®, the pediatric program of Hospice & Palliative Care Charlotte Region (HPCCR) that provides care to children who are living with a serious illness or condition. Kids Path offers physical, emotional, and spiritual care with the goal of enhancing the quality of life for children and their families. For most of the children in the Kids Path program, their illness continues for much longer than the typical six months that is generally associated with hospice care.

In Brooklyn’s case, her Kids Path team consists of a physician, nurse, and social worker who work alongside Dr. Benton to care for her every need. She also has access to a chaplain, an in-home aide, and a volunteer whenever she or her family feel the need for those services.

Having such a diverse and well-rounded team at their disposal has created an almost house call-like situation for Brooklyn’s family. “All I have to do is make a phone call and someone comes out to check on Brooklyn,” explains Alicia. “We don’t have to take her into an office where she risks picking up other germs or infections.”

Brooklyn’s social worker helps her play with the iPad

Brooklyn’s nurse, Cyndi Jo, visits once a week to take assess her health, review her medications, collect labs, and discuss her plan of care. Her social worker, Candace, comes every other week to provide emotional support to the entire family and to interact with Brooklyn. She uses an iPad, along with other therapeutic interventions, to engage her young patient, and also includes fun activities like painting Brooklyn’s nails. And around every sixty days, Brooklyn has face-to-face visits with an HPCCR physician who recertifies her for hospice care, allowing her to stay in the Kids Path program. For almost two years, Brooklyn has been lovingly supported by this wonderful team, adding stability and comfort where it is most needed.

Brooklyn is an extremely happy and social child who loves watching her seven-year old brother play soccer and enjoys time with her cousins and other family members. She laughs spontaneously and is quite adept at communicating what she needs, even without words. “Since Brooklyn has become a Kids Path patient, she has had fewer seizures and her quality of life is much better,” Alicia says with relief.

Alicia and her husband do not know how much time they will be allowed with Brooklyn. She’s already had a few extremely frightening stays in the hospital over the past few years; one time in particular, Brooklyn became septic and was extremely close to death. But what they do know is that they are surrounded by a caring, compassionate Kids Path team whose goal is to keep Brooklyn healthy and happy for as long as possible.

Brooklyn and her family show us exactly why hospice care is celebrated and acknowledged in November. They remind us that life is meant to be lived with simple joy; that with the exceptional care that end-of-life services provide, anyone – young or old – with limited life expectancy can make every day count.

Kids Path® is a program of Hospice & Palliative Care Charlotte Region serving eleven counties in North and South Carolina. For more information, call 704.735.0100 or visit hpccr.org.