Hospice Heart: Power to Help Make the Most of Life

Earlier this year in our Home Runs for Hospice Hits It Out of the Park blog post, we shared a couple of the stories that moved event attendees. Today, we tell some other stories about how LifePath Hospice team members, who possess what we call a hospice heart, helped make a difference in the lives of patients and families.

Hospice Heart Moments

During the course of the last 35 years, many community members have discovered how many team members at LifePath Hospice embody the compassion necessary to guide patients and family members through the difficult journey of end-of-life care. Physicians, nurses, hospice aides, social workers, chaplains and bereavement specialists work together as a team.

During Home Runs for Hospice, speakers’ shared very personal stories about how hospice affected their lives. Even though each individual told a unique and personal tale, there was a running thread through all — the quality, compassionate care provided by a team with hospice hearts.

Heart-wrenching News

As a little girl, Colleen Schiro imagined growing up and having a beautiful wedding and a house filled with children. A year after she married the love of her life, Jeff, they became pregnant with a little girl, who they named Quinn.

“I’m sure most parents will agree that from the moment you find out you are pregnant to the day you give birth, you envision all of the wonderful things you are going to do with your child,” shared Collen during the Home Runs for Hospice breakfast program.  “Jeff and I imagined our little girl dressed up as a ballerina. Jeff talked about their father-daughter dance on her wedding day, and I couldn’t wait to teach Quinn how to play soccer and basketball.”

When Quinn was born, she was as beautiful as the Schiros imagined she would be. But just a few weeks after Quinn’s birth, Colleen knew deep in her heart something was wrong with their precious baby girl. “At two weeks old, Quinn wasn’t eating. In the weeks that followed, we were in and out of hospitals with Quinn enduring endless tests with no answers.”

By now, Quinn was three months old, and the days for the young couple were very difficult and long. Sometimes Quinn would cry for hours on end, and with each tear, Colleen’s heart broke even more. Finally at nine months old, Quinn was diagnosed with a rare and terminal genetic disorder, pontocerebellar hypoplasia.

Wonders of the Pediatric Program

“We were devastated by the news and the prognosis that Quinn wouldn’t be with us for very long,” continued Colleen. “Our hearts told us that we were going to have to live a life’s worth of experiences into a few short years. So we called hospice.”

The LifePath Hospice team, composed of experts in pediatric care, gave the young family wonderful gifts, such as no more endless hospital stays. They had Quinn’s medication delivered directly to their front door and had the peace of mind that their hospice doctor was only a phone call away.

“We fell in love with our LifePath Hospice nurse, Mary. She became a part of our family. Most importantly, the hospice team gave us the confidence and guidance to fill Quinn’s life with amazing experiences,” said Colleen.

The Schiros knew they couldn’t wait to take Quinn to Disney World when she turned 10, so the family went when she was just one year old. They needed to fill a lifetime of birthday parties into just a few short years. They wanted stories to tell, pictures to cherish and memories to hold tight in their hearts when Quinn was gone. They created Quinn’s bucket list and let the adventures begin.

Quinn was a star on Fox 13 and met celebrities like the New York Yankees head coach, the Navy’s Blue Angels and even recording artist Rascal Flatts. She was a big fan of the Tampa Bay Lightning and even rode the Zamboni. They crossed off trips on Quinn’s bucket list: Big Cat Rescue, Busch Gardens, Strawberry Festival and the Florida Aquarium.

“Jeff and I love baseball and vowed to take her to as many games as we could. Miami, Pittsburgh, Houston and Chicago were crossed off the list. She was a cowgirl in Nashville, saw the Washington Monument in DC, met Minnie Mouse in Orlando, took a carriage ride in Charleston and rolled in the fall leaves in Maryland,” shared Colleen. “We were able to do all of this because of LifePath Hospice.”

With hospice hearts, LifePath Hospice was by the Schiros’ side to not only care for Quinn but also for Colleen and Jeff. The team prepared them for each one of Quinn’s trips with extra medication and supplies and direction on what to do if they needed help while they were gone.

“LifePath Hospice shared in our joys and in our tears. In December 2015, Quinn’s body was starting to shut down. The team helped us prepare, not only medically but emotionally as well. As the time was near to say goodbye to Quinn forever, it was so important that our daughter’s last few days were not spent in a sterile hospital but in our own home. There she was surrounded by the things and people she loved the most. Family came and hugged on her and friends held her hands. We lay with her in her big girl bed, rocked and hugged her and gave her kisses one last time.

“We lost Quinn in the early morning of January 10, 2016. She was only two-and-a-half years old. They say it takes a village to raise a child. I say it takes a lot of love and support from family and friends and from people who help support the mission of hospice. Without hospice, Quinn’s story would have been very different,” concluded Colleen.          

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.

Gift of Healing

The last speaker at the Home Runs for Hospice breakfast was Gilbert Colon, who shared his experience with LifePath Hospice and the services he received as the loved one of a hospice patient.

One evening in February, Gilbert was scrolling through Facebook and saw a post from his aunt that read, “I received sad news today someone in my family has been diagnosed with cancer.” He immediately called his mom to find out who this family member was. “There was a long pause and then my mother’s tears started on the other end of the phone,” said Gilbert. “The family member was my mom. My mom was my biggest cheerleader — the one I loved the most — and she had stage IV breast cancer.”

Gilbert moved away from Tampa after high school, served in the Marines, attended college at William and Mary and then started his first job in DC: a total of 10 years all together. “But after that phone call, I knew exactly where my next move would take me ─ home to take care of my mom,” related Gilbert.” Endless phone calls, doctors’ appointments and hospital visits filled my days. My mom would get treatment, feel better for a few days and then her pain would get out of control.”

Last August, his mother’s battle with endless pain brought her back to the hospital. The doctor shared news that no one was ready to hear. There was nothing more they could do for Gilbert’s mom. She only had weeks to live, perhaps days. English was a second language for his mom so she really didn’t understand what was going on or what the doctor was saying. “I then had to do the hardest thing I’ve ever had to do. I had to translate for her. I had to tell my precious mom that she was dying. We took her home on hospice, and she died a short time later.”

Gilbert’s mom taught him many lessons in life. “She would always say work hard, think ahead and move forward,” Gilbert shared. “The only thing she didn’t teach me was how to live without her.  Guilt, sadness and anger set in and filled my days. You see I was my mom’s first-born. We had a special bond. My aunts would say she loves her children equally, but really, Gilbert, you are her favorite.”

Learning to Live Again

To help cope with the loss of his hero, Gilbert was introduced to a young adult grief support group offered by LifePath Hospice. “The first night of the group we talked about emotional guilt. I thought they were reading my mind,” confessed Gilbert. “How did they know that guilt had taken over my life? I felt guilty I had been away from home for so long and missed so many special moments with my mom.”

Gilbert thought that if he could have done more, his mom would have not died so quickly. “That night at grief group, I learned how to open up to these emotions and began to work through my feelings. I bonded with other young adults who also lost a mom or dad.  I learned that it was normal to feel loss when the one you love most is gone and it feels like a piece of you is gone, too.”

The one-on-one grief counseling helped Gilbert put the pieces of his heart back together. For months after his mother passed, Gilbert stagnated in guilt every day. “I was scared that if I worked through these feelings and accepted them, I would be moving on.”

Gilbert’s grief counselor helped him realize he had loved his mom with all his heart and her dying was not his fault. “We worked through exercises to help me realize that my mom is deep in my soul and no one can take that away.”

In his closing words, Gilbert said, “I stand here before you today a stronger man, a better friend, a more loving brother because of the support of LifePath Hospice. I am now able to honor my mom by celebrating what was most important to her in life: being there for my family and friends. I think she would be proud that I’ve worked hard, that I’m thinking ahead and moving forward.”