chs2020 – Blog Posts

Honoring America’s Allies

Good Shepherd Hospice, HPH Hospice and LifePath Hospice are each part of our veterans program. One way the hospice affiliates participate is by honoring veterans with a pinning ceremony. Each veteran is presented with a certificate to commemorate their sacrifice, along with a piece of an American flag that can be pinned to their shirt. Though this service is offered primarily to American veterans, any solider who served as an ally of the United States is eligible to be honored.

While the numbers are usually low, usually less than 10 foreign veterans are honored by each affiliate every year, it is important to pay tribute to all men and women who fought for and with the United States.

Stuart Peckham served in the Canadian Army alongside American soldiers

Stuart Peckham, known as “Mr. P” to friends and family, is a patient with HPH Hospice. When he was 21 he served as a translator in the Highland Light Infantry 9th Brigade of the Canadian Army during World War II. He speaks three languages and landed at D-Day.

“I left as a boy and came back as a man,” Mr. P said. “I had three brothers. We all served. We all came back.”

Born in 1924, as the son of Polish Jews, he lost 21 family members in the Holocaust. He was later adopted and raised Christian, but the war took him to some of the concentration camps where some of his relatives went and never returned.

Mr. P doesn’t like to talk about the war. He’d rather tell you about his careers in real estate, construction and as an auctioneer.

With a resume that impressive, it may not be surprising he’s also a writer.

He’s written 16 books, six even published, including one about the art of negotiation. If you were to spend 15 minutes speaking with him, you’d wish you had read one of those books because you may get hit with a pop-quiz.

Honoring All of America’s Allies

Though the war brings back bad memories, Mr. P is still able to share some details.

He was wounded in action twice, earning the Sacrifice Medal, which is Canada’s equivalent of the Purple Heart in America.

Since moving to America in 1955 the honors for his service has diminished a bit. He made it clear it was a sore subject when asked if being a Canadian veteran draws the same praise in America.

“Sometimes I’ve never felt so foreign,” he said.

Back in November, Mr. P was give the same honors any American veteran would receive as a patient of HPH Hospice.

Chaplain Scott Carley came to his home and prayed with him, thanked him for his sacrifice, and gave him pin and certificate to commemorate his service. The gesture moved Mr. P to tears.

“All I ever wanted was to feel recognized,” he said.

In total, 18 countries fought alongside America in World War II. Though most of the veterans Chapters Health System treats come from England and Canada, Mr. P and anyone else who fought alongside American soldiers can count on receiving the same treatment.

At Chapters Health System and its affiliates—Good Shepherd Hospice, Hospice of Okeechobee, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

About Pat Carragher

Pat Carragher, Media Relations Coordinator for Chapters Health System, coordinates external communications for the not-for-profit organization.

Veteran Volunteers Needed

More than 25 percent of all hospice patients are veterans. At the hospices of Chapters Health, volunteers who are veterans are matched with patients who also have a military history. Our program is designed to offer support to veteran patients from someone who can relate more closely to their experiences. Volunteers receive ongoing training and support specifically related to veterans’ end-of-life-issues.

For more information about our openings, click over to our volunteer opportunities page, or for upcoming volunteer training sessions visit our Calendar page.

To become a Chapters Health volunteer, simply complete the online volunteer application and a Chapters Health volunteer coordinator will contact you. For more information, contact Volunteer Services at 863.551.3943 in Polk, Highlands or Hardee counties for Good Shepherd Hospice; or 727.816.3647 in Pasco, Hernando or Citrus counties for HPH Hospice; or 813.871.8237 in Hillsborough County for LifePath Hospice.

Male Grief: What You Need to Know

The now famous book titled “Men Are from Mars, Women Are from Venus” truly brings home the point that men and women, for the most part, handle grief in drastically different ways. In movies and on television, mothers are sometimes depicted throwing themselves on a child’s coffin with the hope and desire to prevent or at least waylay burial. Yet in these pop culture venues, portrayal of male grief is vastly different. For instance, at his wife’s funeral, a newly widowed father holds a child’s hand and remains stoic without shedding a tear. But is this real life or escapism?

Understanding Male Grief

It sounds cliché, but when it comes to grief, women tend to be more demonstrative. They don’t mind showing their vulnerability. Women cry when their emotions take over and grief becomes overwhelming. On the other hand, many men feel the need to remain unflappable and put on a brave front. And there might be the problem. It is important to recognize what male grief looks like in all its forms. As each person is different, so too is the manner in which men grieve. Some men will become enraged. Others will cry, and then there will be another group who appears strong and stays active. All are perfectly fine reactions as long as feelings are not avoided at all costs.

At an early age, boys seem to take the signal from their elders and block pain behind a wall of silence. Dad is shattered by the sudden loss of his father but locks his feelings away and closes off his emotions. On the day of Grandpa’s funeral, the young grandson isn’t sure if it’s okay to cry because his dad is acting like he always does — a smile on his face as if nothing is wrong. Nevertheless deep down, the dad is experiencing the profound loss of his father, but he was taught real men don’t cry. Instead, he grieves in silence.

According to researchers, there is evidence that men grieve on their own and then use work and other activities to distract from their pain. Think about Steve Ensminger, LSU’s offensive coordinator, who chose to call the plays during Saturday’s semi-final college playoff game (Peach Bowl) mere hours after he learned of the tragic death of his daughter-in-law, Carley McCord, in a plane crash.

It isn’t surprising to learn that following a loss some men cope by using alcohol and adopting risk-taking behaviors to dull their emotions. They tend to have a smaller network of friends to lean on in their time of need as opposed to women, who rely on their female friends for support. (Picture the end of “Steel Magnolias” when Sally Field’s character, M’Lynn Eatenton, is grieving, and her friends are there to provide comfort in her hour of need.) And then there is the sad truth as Canetto and Cleary discovered: Men are more likely to commit suicide after a spouse’s death.

How to Help

Experiencing a loved one’s death can be one of the most difficult and painful chapters in any individual’s life. It is never a smart decision to suffer in silence and alone. Reaching out for help is a sign of strength.

However, until your male loved one comes to this decision, the following are some tips that can help:

Offer to be a sounding board. With a simple phone call, make the suggestion that you’d be happy to listen — no matter what feelings he might be experiencing. He can be assured that you will listen, offer support and not pass any judgment.

Assist in creating activities with time for reflection. A suggestion of going for a walk in the neighborhood or playing a round of tennis creates both an activity and the opportunity to ask how he’s doing.

Watch for warning signs. Some men repress their feelings and emotions, which can have repercussions down the line. But definitely keep an eye out for the following: withdrawal, depression, deterioration in relationships (family and friends), anxiety, and alcohol or drug abuse.

If the above suggestions are not helping, Chapters Health System is here with individual counseling and support groups. While many individuals participating in our community bereavement support groups have lost someone under care at any of our affiliates — Good Shepherd Hospice, HPH Hospice and LifePath Hospice — others have experienced a sudden or unexpected death. Bereavement support and services are offered at no charge.

At Chapters Health System and its affiliates—Good Shepherd Hospice, Hospice of Okeechobee, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Teach Your Children

In society, male grief is invisible and unwanted all too often. In order to break the cycle, start by teaching your children that it is okay for boys to share their feelings. Allow them to be true to themselves.

What can you do to change the outcome? As the Crosby, Stills and Nash song reminds us, “teach your children.”

Spiritual Insight

“If you have children, you one day will face the difficult task of telling them that a loved one has died,” said Father Christian Villagomeza, chaplain with LifePath Hospice. “Depending on the age, a child may ask all kinds of questions. Keep your answers as simple and honest as possible.”

Father Villagomeza suggested you don’t tell your son, “Grandma is sleeping.” He may be afraid to ever go to sleep again. And don’t tell say, “Grandpa is in heaven watching over him.”

While parents may find this image comforting, children may be terrified that Grandpa has become an ever-present spy. Remember, children need to resolve their own grief. They will take their cues from you, so give them permission to grieve by letting them see your grief. Don’t try to protect them from the grieving process. And by all means, take them to the funeral if they want to go. Keeping them away from the funeral may make them feel rejected.

How Social Services Specialists Impact End of Life Care

Edward Watson is 97-years-old. If you asked him how he’s doing, he’d tell you he’s not going to be here much longer.

“My mind is going, as well as my body,” Edward said. “I can’t remember things too well”

He’s suffered four or five strokes by his count. He is a widower, twice. But for a man who believes is in his final days, his spirits remain incredibly high. He credits that to the time in history when he was born.

“The depression formulated my life forever,” he said. “It enabled me to be able to get through some quite hard periods of time.”

As a social services specialist at LifePath Hospice, Thanh Bermingham still felt Edward had plenty of life left to live.

“He was feeling pretty down about himself,” Thanh said. “I tried to talk to him and remind him of things in his life that made him happy.

What Made You Happy Then Can Make You Happy Now

As it turns out, Edward had a special hobby that he picked up when he was 12-years-old.

His brother, Gilbert, brought home a harmonica. It was missing a reed, which is a pretty important piece to control the notes and make sure everything sounds right.

It didn’t matter. Edward and Gilbert both figured out how to play it anyway.

Playing the harmonica didn’t become a permanent fixture in Edward’s younger days. For a few years, he spent some time as an aircraft technician in the Air Force before operating two cemeteries and a monument business in Georgia. He never managed to play in any bands during that time, and his harmonica playing days seemed numbered.

When Edward’s second wife died 11 years ago, the harmonica found its way back into his life. He admitted he spent lots of time at home feeling down and not getting out much, but then he got an idea.

“One of the days I was in here and thought, ‘I wonder if I could play harmonica?’” he said. “I took it out and it was like I never stopped. I had all the acumen to keep on playing. That made me feel pretty good.”

Edward was playing so much he was even in three bands at one point, but that didn’t last. He suffered a series of strokes and soon after his harmonicas started to collect dust again.

More Life Left to Live

One day Edward and Thanh got to talking. She could tell he needed something to lift his spirits. The idea of playing harmonica came up.

Not knowing if he would be well enough to play, he gave it a try anyway and played for Thanh.

“I cried it was so beautiful.”

It was then that Edward knew what he needed to do to start feeling better, but he was worried he might lose his hospice benefits if he felt well enough to play again. Thanh assured him otherwise.

“I wanted to play one more time before I hang up my hat. It’ll be my farewell song,” he said. “I played because of Thanh.”

Edward had reconnected with one of his bands, The Front Porch Pickers. He played not one, but two more concerts with them before officially calling it a career.

His song of choice? “I Miss Somone” by his favorite singer, Johnny Cash.

“He has a limited (vocal) range,” Edward said. “He couldn’t get up to the high notes and neither could I.”

Edward addressed the crowd at his final concert on December 18 and officially announced his retirement. He received a standing ovation from the crowd and his bandmates.

At a time when he felt he didn’t have much time left, his social services specialist was there to help show him he still had plenty of life left to live.

About Pat Carragher

Pat Carragher, Media Relations Coordinator for Chapters Health System, coordinates external communications for the not-for-profit organization.

How Social Services Specialists Make a Difference

At Good Shepherd Hospice, Hospice of Okeechobee, HPH Hospice and LifePath Hospice, social services specialists share work with other clinicians and volunteers to provide care to patients and families including psychosocial support, advanced directive information, development of plans of care, and other social services depending on the patient/family needs.

They also empower patients and families to negotiate with resource providers and make decisions on their own behalf.

Specialists also help other clinical staff in understanding family dynamics and developing a plan to address issues in a nonjudgmental manner.

Social services specialists’ work doesn’t end when a patient passes on. They help coordinate bereavement needs and give family members the resources they need on their grief journeys.

10,000 Angels: A Song for “Mr. T”

For the many years I have been involved with hospice, I have seen and heard the heartwarming stories that involve poignant moments, butterflies and dragonflies. This is not one of those stories. This story is about a hospice patient, Mr. T., which I can only best describe as an old curmudgeon. He was on service for end-stage respiratory issues and only allowed the hospice nurse in the home because she supplied his drugs and kept the oxygen flowing without interruption. When the social worker went to visit, she left in tears as he would not allow her inside and scolded that she should never return. Forget getting a chaplain visit in. The poor wife looked beat down and exhausted, and the dog followed her around, assuming it was seeking some kind of protection from Mr. T.

And so it went until one day in interdisciplinary team meeting, the nurse reported that Mr. T. had taken a dramatic decline and had asked for our chaplain to visit. Then our chaplain reported she had made the visit and Mr. T. had a specific request. She had sheet music he had given her to a song he wanted sung at his memorial and asked if the chaplain could arrange that. Knowing that I had sung at multiple hospice-related services at skilled nursing facilities, assisted living facilities and a few private funerals, she thought she would first ask me. I agreed to look at the music to see if it was in my range, as I was at the time, unfamiliar with the song. After a few practice runs, the song was presentable, so it was relayed to Mr. T. that he had his vocalist confirmed.

Seeking Ways to Say “Yes”

Then the most unusual thing happened.

Mr. T. wanted the vocalist to come to his home and sing it for him first. I drew pause as I realized I was being asked to audition for the soon to be deceased! We at hospice, who seek ways to say yes, said yes, I would come with the nurse’s next visit and sing for him, albeit without accompaniment.

So on the day of the visit, we entered this tiny home where Mr. T. had already placed himself at the dinette table facing the u‐shaped kitchen with his extra‐long oxygen tubing crossing the entire living room to his concentrator and well‐worn recliner. The nurse sat next to him on his left, then Mrs. T and finally the poor dog hovering at her feet. It was clear I was to stand in the kitchen and face the dinette. I felt as though I was in a bizarre home version of “America’s Got Talent.”

I asked if they were ready, Mr. T. nodded, and so I took a deep breath and sang the song, “10,000 Angels”. Mr. T. nodded his head in approval when I finished, so I assumed I had passed the audition, even though he never smiled or showed any sign of warmth. I shook his hand, told him it was a privilege to meet him and be able to sing for him. I reassured Mrs. T., took my leave and left the nurse to do her assessment.

By the next team meeting, I had learned that my own father was now on hospice services in Oklahoma and in order to make sure I did not fail my commitment to Mr. T. I made a tape of me of me saying “this is for you, Mr. T.” and singing “10,000 Angels” just in case I was in Oklahoma when Mr. T.’s memorial was to occur. The tape with an explanation was given to the family as my back up and time passed.

Mr. T’s Final Song

The day came when I heard that Mr. T. had died. I immediately called the chaplain to find out the date of the memorial so I would be sure to be available. And then she told me: there will be no memorial for Mr. T.

And there wasn’t.

Okay, here are the butterflies and dragonflies to this story. About four months after Mr. T.’s death, Mrs. T., who had been attending our bereavement group, came to my office. She looked wonderful and at first I did not recognize her. She brought me a copy of the cassette made for Mr. T. She told me that the tape had been very important to Mr. T and that he had listened to it often during his final days and was actually listening to his when he took his final breath.

The wife and son, the only family, decided not to have a memorial. But instead, the son had made a copy of my tape for himself and his mother and one for me, as the original was all but worn out. For them, the music was associated to a pleasant memory of Mr. T. For sure, when I hear this song, there is only one person that comes to my mind.

“This is for you, Mr. T.”

At Chapters Health System and its affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

Gail Gerntrup is the Executive Director of Hospice of Okeechobee. The not-for-profit provides hospice and other end-of-life services for residents living in Okeechobee, St. Lucie and Martin counties.

About Hospice of Okeechobee

In August 2019, Hospice of Okeechobee became the newest affiliate of Chapters Health System. Founded in 1983 by Okeechobee residents Paul Buxton, Fran Syfrett, Dorothy Bulger and others, Hospice of Okeechobee is a not-for-profit provider of hospice and other end-of-life services for residents living in Okeechobee, St. Lucie and Martin counties.

Halloween Grief: When Spooky Turns Into Sadness

It’s easy to get into the holiday spirit when fall rolls around. The temperature drops. We start thinking about food and gifts and time spent with family. Unfortunately, it’s no secret that someone who has recently experienced loss can suffer grief through November and December, but what about Halloween?

The constant reminders of death are right there in your face. Your next-door neighbor turned their front yard into a cemetery. There are fake coffins at school or work. People are walking around dressed like the literal dead.

Halloween Grief affects Kids and Adults Differently

For adults, it can be tough to look at these decorations in the way they were intended. For children, it can be confusing and lead to many, many questions.

“What happens when someone dies?”

“What happens to their body?”

“Are ghosts real?”

Suzy Soliday, LMHC, bereavement supervisor at the Bethany Center at Good Shepherd Hospice said the challenge lies in the disconnect between actual death and the festive themes Halloween is meant to bring, but the key is communication.

“Families just need to communicate what they believe,” she said. “Most kids don’t understand that death is a permanent thing. As they grow a little bit, they eventually realize death is final. But you just have to embrace what you believe.”

It doesn’t help that even outside of Halloween, there are still depictions of death that can send mixed messages to children.

“You can play a videogame and someone gets killed, and they’re alive five seconds later. There are television shows like ‘The Walking Dead.’ How does a child reconcile that?”

Suzy said you can helps by using softer terms like that person “is in heaven,” or “in a better place” or “no longer in pain,” but there needs to be clarity when speaking to children about death.

“We have to be careful to use concrete language,” she said. “Don’t just say ‘grandma passed on.’ Passed where? Where did she go? It may be a kinder, gentler way to say it, but kids need to hear concrete words like died. Kids generalize a lot of things. We need to explain that just because grandma went to the hospital and died, doesn’t mean everyone goes to the hospital and dies.”

Seeing graphic representations of death all around us can trigger many more things than questions. It can trigger fear and anxiety, and make something familiar suddenly seem scary.

“If the cemetery was this peaceful place to visit grandma’s grave and you felt connected to her and that was a good place to go, but the people down the road have goblins and tombstones in their yard, it can send conflicting messages to kids,” said Suzy. “If a family has gone through a tragic death, like a murder, or a horrible accident where there was blood and then you see someone walking around with blood all over them, that’s no longer fun. That can make you sad, give you anxiety and cause fear.”

It’s Okay to Change or Even Skip Halloween

If you decide that the traditional Halloween experience may be too much for you or your children this year, there’s nothing wrong with breaking from tradition. Don’t want to go door to door and risk being reminded of death? Many towns have “trunk or treat” events. There’s also no shortage of fall festivals that can be a relaxing way to spend time together without having to worry about a corpse jumping out at you.

“Go to a movie, do something different,” Suzy said. “Some people just say, ‘Nope. We’re not even going to be home. We’re not even going to open ourselves up to that.’ If it’s bothering you, bring it up with your kids, bring it up with your family and say, ‘hey this year we’re doing something different.’”

About Pat Carragher

Pat Carragher, Media Relations Coordinator at Chapters Health System, is responsible for external communications for the not-for-profit organization.

Do You or Your Child Need Grief Support?

Experiencing a loved one’s death can be one of the most difficult and painful chapters in an individual’s life. That’s why Chapters Health System is here to help and wants you to know that you are not alone.

Our not-for-profit organization offers bereavement support for hospice survivors in addition to ongoing community support groups. There is no charge for bereavement support and services. While many individuals participating in our community bereavement support groups have lost someone under the care at any of our affiliates — Good Shepherd Hospice, HPH Hospice and LifePath Hospice — others have experienced a sudden or unexpected death.

Individual & Family Support: Bereavement specialists offer guidance, attention and support to hospice survivors within the family system as they work through the grieving and healing process.
Adult Grief Support Groups: Grief support groups offer support and education by helping survivors cope with their emotions, new roles in life and plans for the future. Groups are scheduled at various locations on an ongoing basis. Pre-registration is required, and groups are open to all community members who have experienced the death of a loved one.
Children’s Grief Services: To meet the special needs of children and their caregivers coping with the death of a loved one, we provide age-specific services and caring support in a safe environment.
Annual Children’s Camps: Each of our affiliates holds an annual camp for children in the spring.

Al Perrin: A Survivor of Spiritual Distress

When I first sat down to talk to LifePath Hospice nurse Al Perrin, I figured our conversation would be relatively straightforward. I had put out a call to find nurses at Chapters Health System who had a unique or interesting hobby. Maybe a fun side job? The goal was to talk about what it’s like to try to find a work-life balance as a hospice nurse. It can at times be a hard, often accompanied by physical, emotional, and spiritual distress, so I figured some of our nurses had to be experts in work-life balance.

I had heard from another colleague that Al was a published author, which seemed like a perfect subject to me. If he could find enough time outside of work to do all of this writing, Al probably had a pretty good handle on work-life balance.

We covered a few of the basics right off the bat. Al told me he grew up in Ada, Michigan, just outside of Grand Rapids. He has three brothers: two older, one younger, and a sister who is also a nurse. Al told me his mother was an artist and liked to write, which he said rubbed off on him at a young age.

“I’ve always been writing,” Al said. “Ever since I was a kid. It’s just something I’ve always liked doing.”

As for his 38-year career in healthcare, that began with a stint as an orderly in a nursing home. After meeting his eventual wife, who worked as a nurse’s aide, he earned a degree from the Grand Rapids Community College School of Nursing.

“Helping people is something I seemed to be good at,” Al said.

Avoidance of Spiritual Distress

After a few minutes, we got to what was supposed to be the main subject of this blog.

Al and I did talk about work-life balance. He shared his method is to compartmentalize it.

“When I’m at home, I’m at home,” Al said. “When I’m at work, I’m at work. There are times when you’ve had a real busy day, you just have to do something else for a while and relax. Writing helps do that for me.”

Al said he tries to write something every day to help keep him focused and his writing consistent. I asked him if any of his book characters were ever based on any of his former hospice patients. He was quick to shoot the idea down.

“That’s their lives,” he said. “That’s their privacy. We’re entering their home and they have to trust you. If you lose that trust, then you lose any sort of care you can do for them.”

One of Al’s books is a book of poems called “Blessed: A Poetic Devotional Journey.”

It recently won a silver medal at the Florida Authors and Publishers Association Awards. It also features photos he took, so you can also add photographer to his resume.

And in case all of that wasn’t impressive enough, Al also has a pilot’s license, even avoiding a tailspin crash at 2,500-feet thanks to some quick thinking and recalling a maneuver he read about when he was 10 years old.

Surviving “The Movement”

At this point in our conversation I’m thinking to myself, “Wow what hasn’t this guy done?”

Then, about 20-minutes in, he casually mentioned something. Like it was just another minor detail of his life. We had covered his nursing career. His writing career. His photography. His near-plane crash. What else was he going to throw on top of all of that?

“And when I was 16, I joined a religious cult.”

He kept talking, but I did a double take. I had to cut him off and ask him just to make sure what I heard was correct, “You were in a cult?”

“Absolutely,” he said. “One of the worst ones you’ve never heard of.”

That’s when he hands me a copy of his book, “Many False Prophets Shall Rise.”

This wasn’t fiction. It wasn’t poems.

“Autobiography of a Seventies Religious Cult Disciple.”

Right there below the title.

I was at a loss. At this point I was scrambling to come up with a whole new set of questions on the fly. The last thing I thought I was going to be talking about that day was how someone got into and out of a religious cult.

“I was the only person who even knew the cult leaders real name,” Al said. “Everyone thought he was the reincarnation of Elijah the Prophet. Don could sell ketchup popsicles to an Eskimo wearing white gloves.”

Al said he started writing the book shortly after he was kicked out of the group called “The Movement.”

The book reads like a suspense novel. It begins at what he said was supposed to be a church group camping trip, but quickly turned into something more like a boot camp. Before long Al and the other group members found themselves navigating the sewers under Grand Rapids, or blindfolded and being led through the woods.

Al described how he got wrapped up in the group in the first place. A shy teenager still trying to find his way in the social world, suddenly met an accepting group of people at what he thought was a church group. “The whole place was alive with excitement,” he wrote. “There was an air of anticipation and exhilaration.”

While I was reading it, I felt like I was watching a horror movie unfold, wanting to yell “don’t go in there!” at the screen.

During our conversation about his time in the cult, I noticed Al kept saying he “got out,” which made me think about others who may not have been so lucky. I asked him if he considered himself a survivor.

“Survivor is a very appropriate term,” later admitting that some members did ultimately take their own lives.

Al said he himself was suicidal near the end of his time with “The Movement”, but credited another former member with saving his life.

Caring for Hospice Patients in Spiritual Distress

Oddly enough, Al’s time in “The Movement” lends a unique perspective to his interactions with hospice patients.

“For our patients who are in spiritual distress,” Al said. “I know what that is. I refer them to our chaplains, but I can be a listening ear.”

I asked Al if his time in the cult made it hard to return to traditional religion after all he had been through.

“I never left Christianity,” he said. “I left Don.”

About Pat Carragher

Pat Carragher, Media Relations Coordinator for Chapters Health System, coordinates external communications for the not-for-profit organization.

Spiritual Rx

By Father Christian Villagomeza, BTh, MDiv, BCC, LifePath Hospice, Chaplain

Spiritual Symptoms of Chronic Pain
“Why is this happening to me?” is one of the many questions that a person with chronic pain often asks.
People with chronic pain often struggle with the meaning of their disease and the changes it makes to
their relationship with themselves, others and the divine. The moment they are no longer able to work
or engage in any activity, questions and distress can arise regarding what meaning and purpose their
lives now have and how to adapt to those changes. They may struggle with a sense of betrayal from
their bodies, beliefs and values, and even more so if their medical needs aren’t addressed effectively.
The sense of self-worth for patients with chronic pain is often challenged. They question their:
• Ability to make decisions.
• Relationships, which can change, become strained or break due to their symptoms and
limitations.
• Inability to participate in community activities, both social and religious, that have been a
source of connectedness and support religious.
Anger, sadness and feelings of abandonment commonly arise. Likewise, depression can be
overlooked by healthcare providers or treated simply with medication rather than identifying and
addressing the underlying emotional and spiritual distress almost invisible on the surface.
It is critically important we understand each of these issues and their relationship to one another.

Bullet Journaling: It’s Never Too Late to Start

Here’s a fact to ponder: The year is more than half over. Do you find yourself scratching your head in disbelief wondering where and how the months disappeared? Like most of us, in January, you probably had great intentions to stick to your New Year’s resolutions of eating well without binging on sweets, and exercising at least 30 minutes a day/five times a week to keep your heart in ship-shape cardiovascular health. Perhaps when spring sprung, you decided to do some seasonal cleaning simply by following the KonMari method of organizing closets. All of the above lasted, maybe at the most, a month tops. Don’t despair. There is something that you can do today to get back on track and accomplish all your goals, and more simply, by bullet journaling.

What is Bullet Journaling?

Bullet journaling is a method to keep track of tasks, take notes and jot down thoughts in one convenient location. ”Bullet” is derived and used to describe the technique of using quick and short descriptions (rapid logging) for all of the above. Picture a short-hand, visual cue to quickly categorize whatever you need to capture in order to keep life on track. And that’s a bullet journal in a nutshell.

Maybe in the past you carried and used a traditional planner such as a Day Runner, At-A-Glance or Franklin Day Planner. You were locked into the various inserts made for your specific chosen method of planning. With bullet journaling, you have the luxury of making it unique for yourself.

What’s great about bullet journaling is that you can start at any time. You don’t need to begin on January 1, the first of a month or a Monday. During the course of the year, you can even adapt and change what information you capture — whether days, weeks or months down the line.

Tips to Get Started on the Right Foot

Once a decision is made to start bullet journaling, it is fairly easy to begin. A bullet journal can be simple and minimalistic or as detailed and elaborate as you want. It is yours to make work best for your needs. You can use your bullet journal to keep track of:

Tasks and to-do lists
Appointments and events
Medications
Meals and water intake
Short-term and long-term goals
Trips
Weather
Thoughts and reflections
Books, TV shows and movies
Memorable moments and so much more

Even though each person’s bullet journal is unique, they all have common components. These standard practices actually make it a bullet journal. To learn more about the various components of a bullet journal and supplies that could be helpful, check out the following blog post, “How to Start Bullet Journaling for Patients and Caregivers.”

Goal Setting with a Bullet Journal

The beauty of bullet journaling is that you can track what is meaningful to you — goal setting is yours and yours alone.

Remember your desire to watch what you eat and power walk in the neighborhood? If you take up bullet journaling, you can easily create habit logs to capture your food intake and exercise practice. If following a specific diet isn’t working, you can adapt and try something different, like counting calories, with a quick change in your food diary. The same can be said when it comes to exercise. When walking outside is not possible due to afternoon thunderstorms, you can head over to the YMCA and take a Zumba® class and then note the switch in your bullet journal.

Suffice to say, if you are bullet journaling, your goals are not necessarily written in stone.

Staying Connected to Goals

Using a bullet journal for your goals — no matter if they are simple or complex — can help keep you accountable. Daily use is best to help stay motivated and connected to those goals. Nevertheless, if you don’t quite make some of your goals, it’s okay. A good practice would be to analyze why you failed or succeeded. You can easily adapt your goals and make them more attainable and reasonable.

For patients who are tackling any health issue, goal setting can be quite valuable. The visualization of a future date in a bullet journal can be a priceless motivator, especially if the goal is making it to the mailbox without difficulty breathing or finishing physical therapy treatment. You can keep track of as much or as little as your heart desires by bullet journaling.

At Chapters Health System and its affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Helpful How-To Videos: Setting Up Your Bullet Journal

As bullet journaling becomes more and more popular every year, available resources for assistance grow exponentially. If a bullet journal sounds like something you’d like to try, you can easily become overwhelmed if you start researching the how-to on your own. Don’t worry, we have you covered.

Best of the Best

Here are some of the best-of-the-best, easy-to-follow YouTube videos that can assist you when it comes to setting up a bullet journal no matter when you start.

Ryder Carroll: Before you start your bullet journal, watch videos from the founder of the method. Here’s his updated video on setting up your first journal, but there are others in the library to check out.

It’s Me Andie: In order to better track health and wellness habits, this YouTuber started her first bullet journal in August 2018. Check out how she got started here.

MyLifeinaBullet: At the beginning of 2019, life got the better of Cristina and so she did not kick off her annual journal until well into the New Year. Follow along as she refocuses her energy by bullet journaling.

Amanda Rach Lee: With close to 1.5 million subscribers to her YouTube channel, Amanda’s videos can help you get started. She first began bullet journaling in 2017 so it might be best to start with that video and then graduate to her set-up for this year, including her lessons learned.

Jordan Clark: Videos on Jordan’s YouTube channel are pleasing to watch as she shares simple ideas to implement in your bullet journal. Check out this video featuring some ideas to try out that are not calendars or daily spreads. In addition, Jordan provides access to free printable downloads.

Jenny Journals: Looking for future motivation and to get inspired? Look no further than Jenny’s videos. Her pages are quite unique as she incorporates watercolors into her various spreads. Here’s Jenny’s July set up.

As you can see if you watch any of these videos, bullet journaling can be simple or intricate. It is yours for the making. Happy goal setting, journaling and dreaming!

MIND Diet for Reducing Memory Loss Risk

Whether mentioned in a health class in school or the reason behind parents vetoing the second Twinkies you craved, we have all heard the phrase, “You are what you eat.” For our health and well-being, we understand it is important to watch the food we ingest. Granted, we know the importance of avoiding saturated fat in bacon cheeseburgers, high sodium in beef jerky and sugar-laden cotton candy in order to promote our heart health. But what about protecting our brain from memory loss and Alzheimer’s disease? Is it possible? By following the MIND diet, you actually can eat foods that boost brain health and thus decrease your risk of memory loss.

What is the MIND Diet?

The Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) diet is a mash-up of two diets: the Mediterranean diet and Dietary Approaches to Stop Hypertension (DASH) diet. The Mediterranean diet was created to encourage heart health, and the DASH diet is designed to control high blood pressure.

A Rush University study originally funded by the National Institute on Aging decided to investigate the merits of combining the two diets to create the MIND diet. The group, led by Nutritional Epidemiologist Martha Clare Morris, ScD, wanted to test the theory that certain foods reduced memory loss. For the MIND diet, the group decided to rely on plant-based foods and limit saturated fat, red meat and anything sweet, and then evaluate study participants over the span of five years.

By way of analyzing food logs of more than 900 older adults in the Rush Memory and Aging Project, the researchers discovered that individuals who followed the MIND diet reduced their risk of memory loss or developing Alzheimer’s by as much as 53 percent. Participants who didn’t follow the principles of the basic MIND diet in the strictest sense still managed to reduce their risk by 35 percent.

For the older adults eating vegetables, especially leafy greens and plenty of berries, the Rush group learned their brains were as sharp as those more than seven years younger.

What to Eat on the MIND Diet

As the researchers at Rush University discovered, MIND dieters only need to incorporate a couple of the suggestions below to reap the benefits of brain health improvement. As an added bonus, people who follow the MIND diet find it easier to stay on track due in part to its flexibility.

Make sure to eat green leafy vegetables at least six times a week and other vegetables at least once a day.
Eat nuts at least five times a week.
Limit pastries or sweets to five times a week.
Make sure to have less than four servings of red meat each week.
Consume beans more than three times every week.
Eat at least three servings of whole grains every day.
Make sure to have poultry and berries at least twice a week.
Limit fried or fast food, as well as any cheese serving, to less than once a week.
Eat fish at least once a week.
Make sure to cook mainly with olive oil, and limit butter and margarine to less than a tablespoon per day.
Consume one glass of wine or other alcoholic beverage a day.

Please do not make any changes to your diet before consulting your physician.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Do You Know the Warning Signs for Early Memory Loss?

As statistics show, it is more important than ever to be alert and knowledgeable about the early warning signs and symptoms of dementia and Alzheimer’s disease. If you were asked what to be on the lookout for, would you know? In case the answer is no, don’t worry. The following signs are what you need to know:

Forgetting dates, times and places. If someone is starting to show the early signs of dementia or Alzheimer’s, he or she can lose track of dates and time passing by. Individuals with memory loss issue can also forget where they are and even how they arrived there.
Loss of memory that hampers daily life. Typically as we age, we tend to forget names or the fact that we scheduled a dentist appointment. However, when you start to forget recent information, which then needs to be repeated over and over again, this can be an early warning sign.

Losing items with the inability to retrace your steps. Have you ever misplaced your wallet? But then you were able to think back, walk step-by-step, and find it in the center console of your car. This scenario can occur as we get older. Yet, if you lost your favorite purse and are unable to retrace your steps to find it, this can be an early sign of dementia or memory loss.
Trouble solving problems or issues planning. For some, following a recipe that used to be a breeze becomes an impossible task. Concentrating on familiar tasks can prove difficult, which results in them taking much longer to complete than in the past. Additionally, working with numbers can become quite the challenge.
New trouble finding words when speaking or writing. If you know someone who has problems either joining or following a conversation, it isn’t something that should be dismissed. As we get older, it is normal to have trouble finding the right words; but with someone with memory loss or Alzheimer’s, they might use the wrong word entirely, for example, calling a dog a turtle.

If these signs sound familiar for you or a loved one, please talk with your healthcare provider and get checked out.

Sundowning: How to Avoid Triggers and Manage Symptoms

Despite the daily occurrence, how many of us stop to admire the sunset? When was the last time you oohed and aahed over shades of red, purple and burnt orange marking the sky as the sun dipped below the horizon? Or perchance, have you ever witnessed the optical phenomenon of a green flash in the split second when the sun disappears from view? If you cannot answer positively to any of the aforementioned questions, take the time today to stop and experience a glorious sunset. You see, the transition from day to night unfortunately triggers something called sundowning for older adults who suffer from dementia and memory loss.

What is Sundowning?

For those individuals diagnosed with dementia, Alzheimer’s disease and other forms of memory loss, the time when day turns into night can prompt an increase in confusion, heightened memory loss and feelings of anger. According to Dr. Peter V. Rabin, retired faculty member at Johns Hopkins Berman Institute of Bioethics, additional sundowning symptoms are crying, agitation, pacing, fear, depression, stubbornness, restlessness and rocking.

If you have a loved one who suffers with dementia, you need to be aware that sundowning can take place so you are not caught off guard. Typically, symptoms occur between the hours of 4:30 and 11 p.m.

Thankfully, there are some hints to help decrease the occurrence of sundowning symptoms. You just need to be on the alert for what triggers sundowning to help combat the issue and lessen the stress to caregivers and family.

3 Sundowning Triggers

There are a number of factors that can trigger sundowning.

Decreasing Light: As day morphs into night, shadows develop and quality light decreases. It becomes more difficult to see and thus increases anxiety for people with memory loss issues. And if you add poor eyesight to the equation, it is easy to understand how symptoms of sundowning can take place.

Imbalance of End-of-Day Activity: Depending on how many activities a person with memory loss tackles as daylight hours fade, the sufferer can become exhausted (physically and mentally), which contributes to sundowning. On the other hand, if there is a sudden lack of activity, the individual can become anxious and confused.

Disruption of Biological Clock: For a number of years, there has been a belief that sundowning syndrome was tied to hormonal imbalance, especially when it came to the ability to understand, while awake, throughout the day. Researchers at Beth Israel Deaconess Medical Center in Boston were able to shed light on a connection between a biological clock disruption and an increase in aggression as afternoon becomes evening into night.

3 Ways to Manage Sundowning

After shedding some light on the symptoms associated with sundowning, you may wonder if there are any strategies to help cope and manage the behavior. The answer is yes. The following are some hints on managing sundowning:

Control Light and Noise: The symptoms of sundowning can be decreased when light and noise are controlled. Keeping rooms throughout the home full of light as day becomes night decreases shadows, and then switching over to night lights assists in lessening anxiety for sufferers. Additionally, it helps to reduce the volume on television, radio and other entertainment devices later in the afternoon and into evening hours.

Create a Structured Routine: Individuals with dementia thrive on routine. Decreasing surprises allows them to feel safe. Without a daily routine, loved ones with memory loss are not able to adapt when there is a change in any activity. It is best to schedule activities in the morning. Avoid scheduling healthcare personnel or any other visitors late in the day.

Watch Diet and Medication: It is important to make sure loved ones with dementia avoid foods and beverages with caffeine and/or high sugar content, especially later in the afternoon. As far as medication is concerned, any substance affecting energy or disrupting sleep should be avoided. Of course, it is always important to consult a physician when it comes to nutrition and medication.

Not All Develop Symptoms

A diagnosis of dementia, Alzheimer’s disease or memory disorder does not automatically mean a person will develop sundowning syndrome. In fact, the associated symptoms can occur in older individuals following a hospital stay or post-surgery where they received anesthesia. Individuals start experiencing the behaviors associated with sundowning but only on a temporary basis. However, if symptoms don’t decrease and they become a daily occurrence, the loved one should be evaluated.

If you are caring for a loved one with any form of dementia, it is important to remember he or she is not acting out with bursts of anger and fear on purpose. Take a deep breath, remain calm and assist them in managing the anxiety of the moment.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Startling Statistics for Dementia and Memory Loss

From health to financial to emotional well-being, there are many challenges we face today as life expectancy continues its march toward 100. One of the biggest that can be found is the alarming growth of patients and families battling with dementia and memory loss.

According to the Alzheimer’s Association, the following are some startling statistics when it comes to memory loss diseases:

More than 5.8 million Americans live with Alzheimer’s disease.
Every 65 seconds, someone in the United States is diagnosed with Alzheimer’s disease.
One in three seniors dies with Alzheimer’s disease or dementia.
Alzheimer’s disease is the sixth-leading cause of death in the United States.
Between 2000 and 2017, deaths from heart disease decreased by 9 percent while deaths from Alzheimer’s disease increased by 145 percent.
By 2050, the number of people with Alzheimer’s disease in the United States could be as high as 14 million, with the disease being diagnosed at a rate of every 33 seconds.

Pediatric Hospice Care Helps Family Feel Whole Again

Prom night for Starlynn Barnes had all the makings of a typical high school formal. The then-17-year-old had her hair and makeup done, wore a sequin dress, and took photos with her family. But Star, a pediatric hospice patient, wasn’t going to her high school prom. This prom was put on by St. Joseph’s Children’s Hospital. An annual gathering for kids and teens who couldn’t go to their own prom due to hospitalization or chronic or life-threatening illnesses.

Star has a rare brain disease called Moyamoya, which is caused by blocked arteries at the base of the brain.

She was diagnosed with neurofibromatosis since before she was even two-years-old. It’s a genetic disorder that affects how nerve cells form, sometimes causing tumors to grow on nerves.

Her Moyamoya disease wasn’t discovered until January of this year.

That’s when Star’s step-mom Laura found her having a seizure on the bathroom floor. A trip to the emergency room revealed it was much more than a seizure. Doctors discovered Star had bleeding on her brain and was rushed into surgery.

The neurologist who performed the procedure had specialized in Moyamoya disease, but had never seen a child have it on both sides of the brain. Star was the most severe case he’d ever seen.

Her seizures were so frequent, doctors had to perform three surgeries before she stabilized.

“Her doctor came out after surgery and said it was like he opened up her brain, and her brain said ‘here I am, fix me,” Laura said. “There was a little part in the back of our minds that thought she wasn’t going to survive surgery because she was in such bad shape.”

Star was alive, but unresponsive. She was in intensive care for about a month when she developed an infection. She had to have another surgery to remove part of a bone flap over her brain. An MRI revealed she had more strokes. Nearly every part of her brain had been affected.

After a few months at St. Joseph’s, it was time for Star’s family to make a decision. The hospital staff had done all they could for Star and presented them with two options: Bring her to a nursing home, or care for her at home with the help of LifePath Hospice.

They opted for a nursing home, but Star’s stay didn’t last long. After multiple fevers and a trip back to the emergency room, Laura and Stephen decided it was time to bring Star home where they could keep a closer eye on her.

“We were apprehensive,” Stephen said. “We thought, ‘can we do the job of giving her medicine, changing her, bathing her?”

Pediatric Hospice Care to the Rescue

What they found with LifePath Hospice was support they had never imagined was possible.

“I didn’t realize how many resources we had available to us,” Stephen said. “LifePath Hospice has just been so on top of everything.”

“There were times where we were at the hospital so much that our other kids felt like they didn’t even have parents,” Laura said. “When we got to bring her home, our family was whole again.”

Star returned to the comfort of her home under pediatric hospice care in April. She hasn’t been back to the hospital since. That was until prom night at St. Joseph’s.

LifePath Hospice was able to provide Star’s dress, and found volunteers for her hair and makeup. AMR Transportation also donated their resources to make sure Star had a safe ride to and from the event.

For Laura and Stephen, it was the first time their family was able to have a night out in nearly five months.

“I didn’t want it to end,” Laura said. “Just to see the kids out there smiling and happy. It’s been a long time.”

Making the Decision to Put Your Child on Hospice Care

Stephen and Laura Barnes know it can be scary to think what hospice care can mean for a child, but they want other parents to know that it doesn’t have to mean the worst.

“Don’t think you’re taking your child home to die,” Stephen said. “You’re taking them home to be surrounded by love.”

Like many other parents, the Barnes had rearranged their lives to become caregivers, which they admit seemed overwhelming at first.

“Some people told us we didn’t know what we were getting ourselves into with hospice,” Stephen said. “It’s 24/7, it’s a lot of work.”

Thanks to the resources LifePath Hospice provides, they said it isn’t as hard as they thought it would be.

“If you’re in the hospital and you want to take your child home, there’s help out there,” Laura said. “You’re not going to be doing it alone.”

Raising Awareness to Help Catch Moyamoya Disease Early

Moyamoya disease has no cure, but if detected early enough, can be managed to help avoid strokes and live a healthy life.

Unfortunately for Star, it wasn’t caught until she had a stroke.

She had shown a few signs before then, but nothing that tipped doctors off to Moyamoya disease.

“You’re not going to know you have it unless you specifically look for it,” Stephen said. “Or if something like a stroke happens.”

Word has since spread since Star’s diagnosis, and Laura believes her story has helped doctors catch the disease in at least two other children, likely avoiding an eventual stroke.

In one case, a young girl went to see a pediatrician with similar symptoms that Star had dealt with when she was younger. That doctor also happened to be Star’s pediatrician, and recognized the symptoms, discovering the disease before it caused any serious damage.

In another case, a family friend had mentioned Star’s condition to her coworkers, and the symptoms sounded too familiar to one. She took her son to the doctor and they were also able to catch the disease early.

About Pat Carragher

Pat Carragher, Media Relations Coordinator for Chapters Health System, coordinates external communications for the not-for-profit organization.

Chapters Health System Pediatric Services

Our pediatric programs serve three distinct populations of children: those with chronic or complex conditions who require palliative care, those with serious conditions who are not yet eligible for hospice and those needing end-of-life care.

Rare congenital diseases
Birth traumas
Chromosome or genetic diseases, such as Trisomy 13 or 18
Neurological or seizure disorders, such as severe cerebral palsy
Cancer
And many others

An important goal of the pediatric programs is helping families access services at every stage of their medical journey, with an emphasis on keeping the family unit functioning as normally as possible.

The children in Chapters Health’s pediatric programs may require different services at different times during the course of their illnesses. With the pediatric programs being so comprehensive, patients can easily transition between levels of care. For instance, if children need help with symptom management or better treatment tolerance for their illnesses, they can receive palliative care services through Partners in Care (PIC) in Hardee, Highlands, Hillsborough and Polk counties.

Under Chapters Health pediatric programs, the team includes:

Physicians
Nurse practitioners
Nurses
Social workers
Chaplains
Hospice aides

They work together as a team with a focus not just on the patient but the entire family, including healthy siblings.