Finding Comfort in Care

Mother and daughter, Carmen and Maria.

When Maria Gonzalez moved to the U.S. twenty-two years ago, she was reaching for dreams she has since achieved, dreams of becoming a citizen and raising a family here. The hardest part of moving here was leaving her parents in Colombia.

Over the years, they visited one another as often as they could afford to, but Maria longed to be with her mother, Carmen. Carmen was a homemaker who raised five children in a small town near Cali, Colombia. She loved tropical music, dancing, cooking and being in nature.

When Carmen came to visit in April 2012, Maria noticed that her mother seemed exhausted. Carmen assured her that she was fine, she was just tired and had a sore back. She was happy to be here to rest, relax and to spend time with Maria and the grandchildren she missed so much.

In the car one day, Carmen began to cry, telling Maria she was in great pain and wanted to return to the house. Maria insisted on taking her to the emergency room at JFK Medical Center, where an MRI was performed, detecting a stage four, inoperable tumor in her lower back. Carmen was admitted to the oncology floor right away.

Explaining the shocking news that Carmen's cancer was too advanced for treatment and she may have as little as a week to live, the oncology staff suggested that Maria admit her mother to the care of Hospice of Palm Beach County. "I had no idea what hospice was. We were in shock. It was all happening so fast," said Maria.

A Hospice chaplain and nurse met with Maria and Carmen. "Right away, they were so kind to my mother, offering her some warm soup, making her comfortable," shared Maria. "They explained what hospice care is and that it is a benefit under Medicare and insurance, but my mother didn’t fall into any of those categories. I told them that we had no medical insurance, money or resources to pay for her care," she continued. "They told me not to worry, that my mother would not have to move from there - that they would take care of her and she would have everything she needed." Carmen was cared for in the Jay Robert Lauer Hospice and Palliative Care Center located right there in the hospital.

"Everyone cared for my mother with such gentleness, compassion and respect," Maria explained. "When the Music Therapist came I was holding my mother’s hand. As she sang songs in Spanish and English, my mother responded. It was a meaningful and wonderful experience."

Maria with her son, Angel.

Carmen was 68 when she passed, and had been in our care for two weeks. "We were not prepared emotionally for a funeral and we did not know what to do," Maria continued. "Again, Hospice told us not to worry and they would take care of us." We arranged for a local priest to hold mass right at the hospital, and it was a touching experience for the whole family.

"It was a gift from God to have all of this. It is a gift to have peace in our sorrow. We are so grateful to Hospice of Palm Beach County. We are so grateful to everyone," Maria concluded.

Where do your donations go?

When you make a donation to Hospice of Palm Beach County Foundation, your generosity offers comfort and assurance to families who are facing the end of life. The funds and resale store goods you donate are used to fill the significant gap between what is covered by Medicare, Medicaid and private insurance, so that each patient and family can have the highest possible quality of life. With more than 1,000 families in our care each day, your support has a profound effect on so many lives in our community.

In addition to funding our extensive Grief Support and Music Therapy programs, it is your support that directly provides our patients the non-reimbursed treatments and medications that are crucial to their comfort, and offers hospice care for families without insurance or the ability to pay.

Carl, a middle-aged man with metastasized cancer, wants to go on hospice care at home. He wants to get relief from his symptoms, spend his remaining time at home with his wife and children and make sure they get the emotional and grief support they need. To relieve the intense pain caused by the size of his tumor, he needs to continue radiation treatments. Yet, they are not covered under his insurance policy's hospice benefit. Thanks to our donors, we are able to admit him and patients like him who need complex treatments for comfort, such as radiation, chemotherapy, transfusions and IV medications. Many hospices, without our "open access" approach to care, simply would not admit Carl.

The Robinsons, a family with no medical insurance or resources, needs our care for their 12-year-old child who has cancer. Thanks to our donors, we are able to provide charitable care for this family, offering expert medical care and comfort for their son and the emotional and spiritual support their whole family needs.

Miriam, an elderly woman in an independent living facility, has developed difficulty breathing. Each and every hour it makes her uncomfortable, interrupts her sleep and causes her great emotional distress. She needs treatments to ease her breathing, but the medications are not covered under her hospice diagnosis. Your donations are used to provide these medications, giving her welcome relief.

Sharon is grieving the loss of her husband, who recently died from Alzheimer's. After 50 years of marriage and 10 years of caregiving, Sharon feels lost. Miles away from her adult children, she struggles with managing the intensity of her emotions, getting adequate sleep, and finding the hope that life can one day be good again. Your donations help to provide bereavement counseling for people like Sharon so that they can better cope with the challenges of losing a loved one.

These are just four stories of the thousands each year, as families are cared fro by Hospice of Palm Beach County. "As a not-for-profit hospice, our philosophy is simple to do whatever it takes to offer everyone in our community the comfort, compassion and dignity they need during their final months. Thanks to your support, we can make that possible," explained Greg Leach, president of Hospice of Palm Beach County Foundation. "We are so very grateful for our donors and the many good people who support our events and resale shops. Your generosity means so much for families at their time of greatest need."

THE IMPACT OF YOUR DONATIONS...

• For $15 per day, we can provide medication for one patient.
• For $155 per day, we can provide end-of-life care to one indigent patient.
• For $175 we can provide in-home assistance for one 8-hour day for one caregiver.
• For $250 we can buy a guitar for one of our music therapists.
• For $300 per day, we can provide one day of palliative chemotherapy for a patient.
• For $375 we can send one grieving child to Camp SeaStar.

As the fundraising arm of Hospice of Palm Beach County, the Hospice of Palm Beach County Foundation is an independent, 501(c)(3) not-for-profit organization with its own staff and board of directors. The Foundation raises funds through special events and donations of all kinds.

A Healing Story

“I hope that everyone who is struggling with the loss of a loved one will reach out for the help available at Hospice of Palm Beach County...”

– Valencia Campbell

When Valencia Campbell was twenty years old, she and her husband, Cornel, had a beautiful baby boy named Jonathan. Life was full and happy for the young couple as they were working, going to college and raising their son. When he was just six months old, Valencia discovered that she was pregnant again, this time with a little girl.

Jonathan and Kayla

There was something very special about Kayla. No one in the Campbells’ large, extended family or circle of friends had known a baby quite like her. She seemed intently aware of people, paying close attention to them and engaging them. “She was like a little princess who attracted everyone around her, and they responded to her with so much love,” said Valencia.

Yet, life was about to take a tragic turn for the Campbells. When she was just three months old, Kayla died very suddenly from a traumatic medical event. As one might expect, her death was a devastating shock to the family and very difficult for them to accept. Bereft members of the family reacted differently – some withdrew, others cried continuously, and still others functioned in a haze of grief.

In the midst of gathering her bearings, Valencia had decisions to make. Her semester at Palm Beach State College was about to begin. Now one month after her daughter’s death, Valencia had become extremely anxious and depressed, rarely leaving the house. She made the decision to continue with her education as planned, hoping that focusing on something outside of her pain would help break the downward spiral of depression and anxiety she was experiencing.

At school, she attended a class on grief, hoping that it would offer some relief. Someone attending that class recommended that she contact Hospice of Palm Beach County for professional bereavement counseling. She called that day, and it was a call that would change her life.

“If it were not for Hospice of Palm Beach County’s bereavement program, I don’t know if I’d be here today,” confided Valencia. “I felt like I was drowning in the sadness. I just couldn’t accept that my baby wasn’t coming back.” Working with a bereavement counselor, Valencia learned to cope with her stress and depression. She gradually learned to accept Kayla’s death and found ways to deal with it. She also came to understand that everyone deals with grief differently, which helped her family’s healing process.

“Now I know that Kayla is part of me - and that comfort will never go away. Feelings of loss come and go, but I have healthy ways of coping with them,” Valencia continued. “I hope that everyone who is struggling with the loss of a loved one will reach out for the help available at Hospice of Palm Beach County. It can make such a difference if you allow them to help you. I am not unique. If I can do it, anyone can.”

Valencia, Jonathan, and Cornel

Today, Valencia feels like a blessed person. In appreciation of the support of Hospice of Palm Beach County, her professors, family and friends, she set the goal of becoming a social worker to help others. Now, two years after Kayla’s death, she will complete her bachelor’s degree at FAU in 2012 and immediately pursue a Master’s in Social Work. She plans to get her doctorate. “I could never repay everyone who has helped me. Their efforts have shaped my determination and success today. No matter what, I promised myself I would never give up,” added Valencia.

Happy Father's Day, Dad

This special Father’s Day letter was written by one of the family members in our care. She asked that we share it with you. 

Happy Father’s Day, Dad

Dedicated to Ronald J. Kaisen

It will be my second year without you being here. I miss you so much. On Father’s Day I loved to bring you little goodies, buy nice shirts and new clothing to dress you up, and bring you the food you loved from Morgan’s and Dunkin Donuts, too. How time goes by.

I’m so glad that I brought Hospice of Palm Beach County in to tend to your care. It was the best decision that you and I made together.  Hospice not only cared for you during your time of crisis, they also helped me with my grief after you were gone. This helped me so much with all of my losses – you, Mom and my child.

Hospice helped to make your last weeks so peaceful. I’m so glad we got to speak to one another before your condition worsened. I will never forget when we were looking at the old family photos hanging in your room and you told me Mommy was coming for you. I’m so grateful that we had our private moment together when you told me how much you loved me and thanked me for everything I had done for you. Then you passed on, but not before telling me these wonderful things.

I miss you and love you very much.

Your loving daughter,

Debra Kaisen-Kasdon King

Helping Children Heal

Loss affects children of every age differently. While the loss of a loved one has a powerful impact on the psyche, they have distinctly child-like abilities to understand and express it, such as the need to show grief through play rather than words. Through counseling, Hospice of Palm Beach County's John J. Brogan Bereavement Center helps young children and teenagers understand their feelings of loss, find healthy ways of coping and rebuild their view of the world.

As it is with adults, it is important for children to connect with peers who can understand their life experiences. Every March, the school-aged children in our care are invited to attend Camp SeaStar, a fun-filled, 3-day weekend of friendship and healing. Funded by Hospice of Palm Beach County Foundation, the camp is free-of-charge for every child who attends. In the pristine Everglades, campers share their stories as they participate in adventure camping activities, music, art, and games.

"With a safe environment and such a powerful common bond, friendships form quickly," shares Chelsea Johnson, Hospice of Palm Beach County Supportive Care Manager. "The campers learn new ways to cope with change, and most of all, they discover how to share their grief with each other in a way that is such an honor to witness."

At the very beginning of camp, the children set personal goals such as wisdom or strength. Choosing animals that symbolize those traits, they create "totem necklaces" that they wear throughout the weekend.

The groups tackle adventure-based challenges, working together to achieve their own personal goals. "As each child steps outside of their comfort zone, they rely on newfound friends for mutual support. The feelings of accomplishment and confidence help the kids to progress amazingly well once they return home," adds Johnson.

One of the most poignant activities is "Lanterns of Love." While they decorate lanterns based on their memories and experience of their loved ones, the children share those stories with their friends and counselors. Saturday evening, the lanterns are hung in the trees on an island, where the campers can bond over a campfire, music and stories.

Around the campfire, counselors share a story about Lanterns of Love and everyone joins in a song written by a Hospice of Palm Beach County music therapist. As they walk back to their cabins, campers can see the light in their lanterns twinkling back at them. "The kids put a lot of feeling into creating something that reflects their loved ones," explains Johnson. "It's comforting for them to know that they can still bask in their love and stay connected. It is such a beautiful expression of the healing process."

And, as if to watch over them, the lanterns shine all through the night. Once can see them across the lake from the cabins where the campers are fast asleep.

Grief Support Services for Families

Thanks to the generosity of our donors, the John J. Brogan bereavement Center offers group support to everyone in Palm Beach County who has lost a loved one, at no charge. To learn more about Hospice of Palm Beach County's grief support services, please call us at 561.227.5175.

Being a Hospice Volunteer Is Like "Winning the Lottery"

Susan Fagan
Hospice of Palm Beach County Volunteer

For Susan Fagan, being a volunteer for Hospice of Palm Beach County, means being prepared for anything, even three-hour trips to Publix Supermarkets. Susan, 62, became a patient visitor in August 2007, and one of her most memorable assignments was helping the wife of a patient run her errands. As the primary caregiver, the wife needed a reprieve to focus on something other than her husband's care. This often meant weekly, extended visits to Publix, where the wife and Susan would travel down each aisle, closely inspecting produce, evaluating meats and comparing prices.

"I came to know the folks in the deli, produce and meats sections really well," said Susan with a laugh. "She was a sweet lady. She loved the outings because she could relax and release some of the pressures she endured from her daily responsibilities at home."

A listening ear, a calm manner, a sense of humor, and an interest in others are the qualifying characteristics of a good Hospice volunteer, according to Susan. No matter how the patients' situations or needs may differ, the volunteer should always demonstrate caring, warmth and respect.

Susan did this by noticing one patient's love of music and taking her down to her nursing home's dining area, so she could listen to visiting performers. When the patient could no longer be moved, Susan sang to her herself, even on her last day of life. Other times, as with one patient who is suffering from dementia, she sits, makes small talk and smiles.

"She doesn’t talk much, so there is a lot of smiling at each other," Susan said.

Susan's first experience with hospice care was with her mother, who needed the services in New York. After her mother passed, Susan decided to call Hospice of Palm Beach County and find out about volunteering.

An average day could mean having cake with a 91-year-old birthday boy and making him laugh with the promise of 'dancing ladies,' or taking a patient out for coffee. But most of the time, it means paying attention. Patients in nursing homes often feel forgotten or ignored, so a little conversation goes a long way. Susan says the goodwill flows both ways.

"When I say it’s been my pleasure as I leave them, I mean it," she said. "I go in with the outlook that I made an improvement in their day. One gentleman said to me, 'you made my day,' and it was like winning the lottery to me. You make a difference."

To learn more about Hospice of Palm Beach County's volunteer program, visit www.hpbc.com or call (561) 227-5138.

To be a kid again: Hospice Bereavement Program

More than 45 children and teens from Palm Beach County gathered recently for a weekend of sharing stories and paying tribute to those they have loved and lost. Camp SeaStar, held annually at the Everglades Youth Conservation Camp in the J.W. Corbett Wildlife Center, is an adventure-based bereavement program facilitated by Hospice of Palm Beach County (HPBC).

The weekend retreat welcomes South Florida children ages 5 to 18 who have experienced a loss and received bereavement support through Hospice of Palm Beach County. The camp allows time for sharing, support, celebration and fun, offering children a secure space and environment where they can meet other children like themselves who have lost a loved one and help them recognize that they are not alone in their feelings of grief. Camp SeaStar is provided at no charge, due to donors support.

"There's a tremendous curative factor in this group modality, in the sheer numbers. It really helps," said Hospice of Palm Beach County's Senior Director of Clinical Services, Regina Di Pietro.

Due to HPBC's recent expansion into Broward County, the camp will also be offered to Broward children this July.
While it may look like a traditional camp with children fishing, canoeing and toasting s'mores over a bonfire, every activity at Camp SeaStar has been designed with a specific purpose and cumulative effect towards the children's healing process.

"The counselors who created this program are highly skilled at integrating counseling support into the activities so that the process is virtually seamless to the children," said Di Pietro.

Upon arrival, campers are asked to pick an animal that represents traits or goals that they hope to work on during the weekend.

"I drew a moose and a bear," said 10-year-old Brooke Dixon. "The moose is for confidence and the bear is for strength in myself."

Three years ago, Brooke's mother died suddenly of a heart attack and Brooke came to this year's Camp SeaStar to again face her grief, but this time, a support system embraced her.

"I've made so many friends here," said the fourth grader about her favorite camp memories. "All the other kids here lost someone, too. It makes me realize I'm not alone."

For more information about Camp SeaStar and Broward Camp SeaStar, contact Supportive Care Manager, Chelsea Johnson at 561-227-5178 or email cjohnson@hpbc.com.

Since 1978, HPBC has cared for nearly 70,000 patients nearing their end of life. As a nonprofit organization, they care for all who want and qualify for services, regardless of ability to pay. HPBC's multi-cultural staff respects all religions and cultural traditions.

For more information, visit www.hpbc.com.

Sun Sentinel
Palm Beach Edition
April 11, 2012