Creating a Bright Path for Families
Wylie was born with Trisomy 18, a life-threatening chromosomal disorder that can cause serious developmental issues leading to various medical complications, which caused Wylie to come home with a feeding tube and also develop heart failure within her first few months. Her next six months were spent with a care team from Bluegrass Hospice Care, who helped her family obtain the necessary medical equipment and navigate through many challenges. “Something that was really special at
the end of her six months with hospice was that Wylie turned one, which is a very big deal with her diagnosis,” said Wylie’s mom, Karla. “Our hospice team helped coordinate with a team in Florida, so that we could take Wylie to our vacation spots for her first-year birthday celebration, which was so wonderful and special.”
Having reached this huge milestone, Wylie made the transition from hospice to our Bright Path program, a pediatric palliative care program that provides specialized medical care for infants, children, adolescents, and young adults who are living with a serious illness.
During her time with Bright Path, Wylie has been able to experience the benefits of integrative medicine through our music therapy group, a six-week program designed specifically for Bright Path families. “I realized that Wylie hadn’t ever had that experience, nor the aspect of being with other kids her age. She loved it and loves music.”
Bright Path families have access to our care team through a 24-hour call center for support and guidance. “We just have this general sense of knowing, like if we needed anything—if we were having trouble with anything—we could call Bright Path and it would be welcome,” Karla said. “I always have the sense when they ask, ‘What do you need? What can we do?’, that it’s so genuine. That gives us such wonderful reassurance.”
Bright Path has provided Karla and her family a new outlook on life: “I remember, right before we transitioned to Bright Path, there was something that shifted in my heart, and it was big. ‘Okay we are not preparing for Wylie’s death, she is not dying, she’s living,’ and to have a group that supports life with your child with an unknown future, I hope that people would be able to see that is huge.”
With the help of Bright Path, Wylie has been able to receive much of her care from the comfort of her home. “She’s growing and learning and developing. When you think your child is dying you sit beside them, and you wonder are we going to wake up today. But when you begin living, you shift your energies a little bit, and your focus,” Karla said. “And to those who’ve supported us, thank you is always too small. Your donation is not just helping the individual with the medical need, but the family—my whole family.”
Music is Back in My Life
Ronn had a passion for music. He came from a musical family that gathered every Saturday night to play bluegrass and country tunes together. Ronn lear ned violin, banjo, guitar and mandolin, and continued to perform and play as an adult. As a Navy pilot in the 60’s, he started a string band with his shipmates on an aircraft carrier. “We played all over the world,” he said with a smile. Throughout his years of raising two sons with Carolyn, his wife of 50 years, and enjoying a successful career as a mechanical engineer and inventor, Ronn’s passion for music never wavered.
However, as his chronic pulmonary disease worsened, it became increasingly more difficult for him to play his beloved mandolin. With his ability to play music fading, Ronn felt like he was losing an old friend. Then his social worker Kaitlin asked our music therapist Maggie to pay him a visit.
A classically trained singer who loves to sing and play music with patients, Maggie uses music and the relationship she forms with each hospice patient to address their changing emotional and physical needs. She can play music to reduce anxiety, or to decrease the perception of pain. Once Maggie tuned Ronn’s mandolin, the two musicians instantly bonded.
Ronn wanted to play mandolin again, so Maggie suggested songs she knew he could play, while she sang and played along on her ukulele. Although he had some frustrations, Maggie was there with help and support. Finally, Ronn could play music again!
“To have Maggie play and sing with me is such a treat,” said Ronn. “For one wonderful hour, Maggie makes me feel better and gives me a break from my everyday routine. Music is back in my life.” As a bonus, Ronn’s determination to play again inspired his social worker Kaitlin to learn the ukulele. They would even practice together during her visits, with Ronn encouraging Kaitlin and loving the opportunity to “play some strings” with her as well.
Life is a Journey
In November of 2018, Vickie and Al received devastating news that would change their lives. Al had been diagnosed with stage IV gastric cancer that had spread to his lungs. After two courageous years of chemotherapy and treatments, Al’s body began to give way. “By April of 2021, Al had been hospitalized three times in two months. I knew that we had reached a point beyond my abilities,” said Vickie.
It was at that point Bluegrass Hospice Care stepped in to care for Al and provide comforting support to Vickie. “I couldn’t have asked to be treated any nicer,” Vickie said. “Everyone was just so kind to us, even the guys who brought the medical equipment.”
Our hospice care teams are not only dedicated to delivering expert care to our patients but are resources for the caregivers—providing them with tools and support so that they can grow their confidence and skills in caring for their loved one. “I instantly connected with our case manager, Debbie. I felt like I could tell her anything, and she was always so encouraging to me, letting me know that I was doing a great job,” Vickie reflected.
“One of Al’s biggest wishes was to stay in his bed at home, and with the help of our hospice team, he was able to do just that!” Vickie stated. On the day that Al passed, Vickie was grateful for the comfort that Debbie was able to provide. Through her tears, Vickie recalled how Debbie gave her the time she needed with Al as she held him for what she knew would be the last time. “She let me know that I didn’t need to reach out to the funeral home until I was ready, comforting me in my last moments with Al.”
Since Al’s passing in June, Vickie has been working through her grief with help from our professional grief counselors. “Some people might find it hard to admit when they need help, but I’m not one of them. Life is a journey, and we are walking one another home,” she stated. “I have nothing but nice things to say about Bluegrass Care Navigators. They have been there for me in so many ways.”
Kentucky Grandpa
Cheri’s father, Joe, was a hospice patient in Lexington, and she recently shared with us how a special bond formed between her father and his nurse, Anja, that can only be described as “family”.
Cheri recalled being impressed from the start, not only with Anja’s expertise and skill as a nurse, but the warmth and compassion shown to her father and mother. “My father looked forward to each of Anja’s visits as she would engage him in thoughtful conversation, laugh at his jokes, and showed a genuine appreciation for his many stories and songs.”
When Anja began caring for Joe, she had recently moved to Kentucky from Texas. “Joe had the sweetest soul and a jovial personality with the voice of a radio spokesperson. He and his wife Mary made me feel very welcome in their home,” Anja remembered.
With each visit, Joe and Anja continued to develop a special connection to one another. “Anja told me that she thought of him as her ‘Kentucky Grandpa’, and I believe he considered her to be like family too,” Cheri told us.
For Anja, being a hospice nurse isn’t just about providing care. “The most rewarding part for me is forming relationships with those I care for,” she said. “As time went on, Joe became someone who brought happiness and laughter into my life, although I was supposed to be the one uplifting him.”
Cheri’s experience with us is exactly why our mission is so important. “Because of the care that Dad received, his quality of life remained high until the end. Anja gave the entire family emotional support and comfort and helped make a difficult transition something of beauty and peace.”
Hospice Patient Marries
High School Sweetheart
Liana Craven did not know what the days and weeks ahead would hold for her as her cancer progressed, but she knew one thing for sure. She did not want to spend that time in the hospital.
Bluegrass Care Navigators made it possible to be where she wanted to be. “I did not want to be stuck in the hospital with a limit on how many friends and family could visit me,” said Liana. “Without them, I don’t think I would be able to stay home like I have.”
With her hospice team, she started to tackle her bucket list. At the top of the list? Finally getting to marry her high school sweetheart of 21 years, Richard. “He had already known before I was diagnosed that I wanted to be married. And he made it happen,” she said. Liana’s family surprised her with a wedding ceremony on March 30, 2021. A best friend purchased a new dress for Liana while others arranged makeup and hairstyling, food and music at the family’s Kentucky home.
“It was special. It was precious. It was meaningful,” said Liana’s stepfather, Dennis Dio Parker. “I have no doubt in terms of a bucket list this becomes her crown-topping moment.”
As a newlywed, Liana was able to check-off other bucket list items. She took a joy ride with her dad in his sports car. And she enjoyed a massage at home thanks to Bluegrass Care Navigator’s Integrative Medicine program, which provides therapies to patients and families that complement their medical care.
Most importantly, Liana enjoyed time with friends and family, especially her new husband and twin sister Melissa. “I just thought that going home with hospice meant you’d be gone in a few days. I got married March 30 and I just feel like, I can do this,” said Liana. “Hospice is not just the end of the line. Sometimes it’s making things you’ve been waiting 21 years for happen faster.”
Moving Mountains for a Family in Need
Working with a medically fragile, complex child living with a rare disorder is never an easy task. Often, these parents have been given a devastating blow of a rare diagnosis, their child is not hitting developmental milestones, and simply putting all the pieces together can be overwhelming.
Recently, our Bright Path team began supporting a family with a young toddler that battles a rare genetic disorder. Residing at home with his mother and two siblings, this young patient’s case is one of the most complicated with which our team has been involved. However, with the help of donors like you, we continue to move mountains for this family.
Families like this one face a multitude of challenges that include new specialist appointments, primary care appointments, changes to daily care tasks, new equipment, new dietary needs, and numerous questions with few answers.
It was evident from the start that this family could benefit from the full support provided through our Bright Path program. For instance, the patient’s older brother had never had a “real” bed of his own, their home lacked a clothes dryer to accommodate the abundance of laundry needed for three children, and the financial burden and stress of traveling to numerous medical appointments had begun to take its toll.
Thanks to the support of generous donors to our Bright Path program, all these needs—along with a variety of others related to management of his medical care—have been alleviated, allowing this family to live more comfortably together and focus on the continued well-being and quality of life of this little boy and his entire family.
Providing Relief for Caregivers
For Gail and her husband Dana, our Alzheimer’s and Dementia Care Program “has been a true blessing.” The last five years have been filled with health challenges for both Dana and Gail. Dana was diagnosed with Parkinson’s and began developing symptoms of dementia. In addition to being a caregiver for her husband during this time, Gail has been battling a diagnosis of stage 4 lung cancer. For the first few years, she had been able to manage her own treatments through medication, but in November of 2021, Gail found herself needing to start chemotherapy treatments.
Due to COVID, Dana has been unable to join her in the treatment room, and between doctor visits and treatments, Gail could sometimes spend up to eight hours at a time out of the house.
“I felt so much anxiety before joining this program with Bluegrass Care Navigators. It is one thing to have church family and friends to help for a couple of hours, but it’s a whole other thing to ask them to stay for eight hours.”
Since joining our Alzheimer’s and Dementia Program, Gail has been able to take advantage of the respite care that is available to program participants, free of charge. For 20 hours a month, a home health aide will spend the day with Dana, taking care of all his needs, and allowing Gail to focus on her own health and wellbeing without the burden of worrying about her husband. “The care and compassion provided to my husband is such a relief, and it gives me peace of mind knowing that he is being taken care of when I’m not there,” Gail said.
“With both of us being compromised in some way, it has been a true blessing to have this help. Without this program, navigating both of our diagnoses would be far more stressful, and the financial burden that comes with paying for additional caregivers would have caused us to start depleting our retirement savings. With BCN, it’s a simple phone call, and I know we’ll be in good hands,” said Gail.
The Hope in Hospice
Tom was admitted into one of our Hospice Care Centers, suffering from COPD and completely oxygen dependent. In addition to the seriousness of his illness, Tom had become homeless due to a string of unfortunate circumstances. His health was in such a decline that by the time he was admitted into hospice, his life-expectancy appeared very limited.
After spending several days in our Hospice Care Center, receiving round the clock, expert care from the team of hospice physicians, nurses, counselors and aides, Tom’s symptoms improved, and he could be transferred home. However, because Tom didn’t have a home to go to, further arrangements had to be made for his housing. Thanks to the Care for All Fund, which covered expenses not paid for by insurance, we were able to continue caring for Tom during this time.
The Care for All Fund is an invaluable resource for patients, like Tom, who are uninsured or underinsured, and ensures that no one is ever turned away from hospice care, no matter their circumstances.
Thankfully, with the help of his care team, and generous friends like you, Tom was soon able to transfer into a home for displaced individuals, where he continued to receive our hospice care.
Since Tom had no clothes, food, or personal items of his own, we provided him with various amenities through the Care for All Fund, bringing dignity and comfort to his life. Food and other essentials were also donated and delivered to Tom by our volunteers.
Without the dedication and care that BCN provided, made possible through the generosity of donors and the Care for All Fund, Tom would not have enjoyed the quality of life he gained. That is the hope in Hospice.
Frozen on Broadway
As a social worker with our Bright Path program, Brittany Anderson assists families of our pediatric palliative patients with the physical, emotional, and social issues that come from dealing with a serious illness. But when she received word that one of our Bright Path patients, Makenzie, needed her spirits lifted with a fun and exciting experience, she knew exactly how to help make this a reality for Makenzie.
Each year, Brittany’s family selects a charity to support with a combined gift from the entire family. Brittany passionately made her case for supporting our Bright Path program to her family, and knowing how important our patients are to her, they unanimously decided that this was the cause they would support.
Her family’s combined donation was enough to be able to purchase tickets for Makenzie and her mom to watch “Frozen on Broadway” in Cincinnati. Frozen is one of Makenzie’s favorite movies so Brittany knew this would be the perfect experience for her. With her special pink dress and “Frozen” blue nails that were painted by her nurse, Makenzie got to experience her favorite movie on the live stage.
“I haven’t seen her smile that much in years” Makenzie’s mom said after the performance. Thanks to Brittany’s family and the rest of her Bright Path team, Makenzie was able to have a perfect night to remember.
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