Hospice
Hospice Care
Ruby – My Mom
Hospice care focuses on enhancing the quality of life for those nearing the end of life, addressing symptoms of the illness rather than the illness itself. It involves a team of healthcare professionals managing symptoms and providing support for the patient and their family. This care is centered around the patient’s and family’s preferences, aiming to ensure comfort and dignity in the final stages of life.
When my mom reached a stage when she no longer wanted any more treatment for her ailments, and just wanted to be kept comfortable, I learned all the words that represented her stage of care: palliative care, hospice care and comfort care. Her primary care and neurologist both agreed there was nothing they could do to treat her condition and that she should be moved to hospice care.
However, when the provider’s palliative care organization sent someone to evaluate if my mom’s condition was suitable for hospice care, he declined to accept her into the palliative care program. Their reasoning was that she could live a long time in that condition, and in that case the insurance would not reimburse them for the coverage.
I called my friend Judy who had worked as a hospice social worker for many years. I asked her, “Have you ever heard of a case where someone’s primary care physician, their specialist, the patient and family all agree that the patient should now get palliative care, but the hospice care provider refuses to accept the patient?”
“Unfortunately, yes,” she said. “But you know you can call another Hospice agency and see what they think. I have a friend that is a physician for Hospice by the Sea. Call them tomorrow and see what they say.”
They sent the most amazing and compassionate physician to my home to assess my mom’s condition. After a thorough review of my mom’s condition he said, “I agree with your mom’s physician. Your mom does not have very long to live, and she should be considered a hospice patient and only be provided palliative care. There is really no cure for her condition, and there are really no drugs that will prolong her life. I would allow her to eat what she wants, and not wake her up to give her medications. You understand that palliative care is comfort care. So, we will do whatever it takes to keep her comfortable.”
He added, “I will tell you this though, that sometimes when we accept a patient into hospice and they are feeling comfortable, they start doing better. When we start focusing on your mom’s comfort, she will start to enjoy her days, and she may even smile more.”
On one hand, I had a huge sense of grief at the thought of losing my mom soon. On the other hand, I knew my mom would not only be more comfortable, but she would be ecstatic not to be taken to the Emergency Room ever again if she became unresponsive. Two times in the 6 months, her unresponsiveness had triggered doctors to recommend an Emergency Room visit, not knowing if she was having a stroke. Each time she was released 24+ hours later with a diagnosis of Urinary Tract Infection.
The hospice services that were made available for her were occasional visits from the doctor, social worker, and chaplain, along with home delivery of medications. More importantly, there were weekly visits from a nurse and someone who came to bathe my mom every day of the week.
As my mom’s health declined, we continued to adjust the dosage of morphine and other drugs to keep her comfortable.
A few days before my mom passed, I had a 103-degree fever and mom was in constant pain. She kept moaning in pain so loudly that I could hear her in my bedroom at the other end of my home with my door closed. I kept calling the caregiver to give her more morphine to ease her.
Finally, after a few hours when my fever went down, I went to my mom’s room and asked the caregiver “How many times have we given her morphine?”
The caregiver responded in a harsh tone, “Too many times.”
Looking at my mom’s face in pain, and her body moving restlessly, I asked “When was the last time you gave her morphine?”
The caregiver got up from her chair, picked up her packed suitcase, and started walking towards the front door. “You are doing mercy killing and I will not have anything to do with it! I quit!”
I composed myself, called the hospice nurse, who assured me, “It must be the first time your mom’s caregiver had experienced someone on hospice. I will call one of the caregivers we have for emergency fill-in situations. Please give her the morphine. Our aim is to maintain comfort for your mom, and that is what you are doing.”
“No time to break down, just one step at a time, one moment at a time.” I said to myself.
Hospice care turned out to be much more than managing my mother’s physical needs; it was about navigating the emotional and logistical challenges around honoring her wish to die with dignity. While making her last days on this earth as comfortable and pleasant as possible.
A New Beginning
Harry and Eleanor’s Story
Harry sat by the window, gazing out at the blooming garden. His mother, Eleanor, lay in the bed behind him, her breaths shallow and labored. The room, though filled with sunlight and the scent of fresh flowers, was heavy with unspoken fears and worries.
Eleanor had always been the life of the party. Her laughter could fill a room, and her stories captivated everyone around her. Harry, wanting to honor her vibrant spirit, insisted on having friends and family visit constantly. He believed that the bustling energy would lift her spirits and help her fight the illness that was rapidly taking its toll.
“Mom, look who’s here!” Harry said with forced cheerfulness as he ushered in nieces and nephews clamoring with energy. Eleanor smiled weakly, her eyes flickering with a trace of their old spark. But as the days passed, Harry noticed something he hadn’t before—the fatigue etched deeper lines into her face, and her eyes, though kind, seemed to plead for respite.
One evening, after the last guest had left, Harry sat beside Eleanor and held her frail hand. “Mom, everyone loves seeing you. You bring so much joy to them.”
Eleanor’s voice was barely above a whisper. “I know, dear. But I’m so tired. I just want to rest.”
Harry’s heart ached at her words. He had been so focused on keeping her surrounded by love and laughter that he hadn’t realized how much she was suffering. The constant stream of visitors, the effort to stay engaged—it was all too much for her.
The next morning, Harry called the hospice care team. When they arrived, he felt a mixture of relief and sorrow. The nurse, compassionate and understanding, explained how hospice care would focus on Eleanor’s comfort, managing her pain, and providing her with the peace she so desperately needed.
As the days turned into weeks, the atmosphere in the house changed. The visits became fewer but more meaningful. The hospice team ensured Eleanor was as comfortable as possible and her pain was managed with the utmost care. Harry sat with her often, just holding her hand, talking about the old days, and sometimes just sitting in silence, which spoke volumes.
One afternoon, Eleanor looked at Harry with clear, grateful eyes. “Thank you, my son, for understanding,” she said softly. Harry nodded, tears streaming down his face. He finally realized that the greatest act of love was to let her find peace.
Hospice care had given his mother the dignity and comfort she deserved in her final days. Harry knew he had made the right decision, honoring her wish to rest and finding solace in the quiet moments they had shared.
Healing and Understanding
Ron, Dwayne, and Virginia’s Story
Ron stood in the hallway staring at his stepfather, Dwayne, who was sitting by his mother’s bedside. The sight brought a pang of jealousy to Ron, who felt that Dwayne, despite his kindness, was intruding on their family bond.
Dwayne had always done right by Ron, ever since he had married Virginia when Ron was fourteen years old. He had attended Ron’s soccer games, helped with homework, and even taught him how to drive. However, when Dwayne entered their lives, Ron had been skeptical and found it difficult to accept him as part of the family. And, at this moment, Ron felt sidelined and struggled to accept Dwayne’s role in their current, painful situation.
“Ron,” Dwayne called softly, beckoning him into the room. “Your mother’s awake. She’d love to see you.”
Ron approached the bed, his mother’s eyes lighting up as she saw him. “Hey, Mom,” he said, forcing a smile. “How are you feeling?”
“I’m tired, sweetheart,” Virginia replied, her voice barely a whisper. “So tired.”
Ron’s heart ached. He wanted to do something, anything, to make her feel better. He suggested bringing in more visitors, taking her outside more, or adjusting her medication. But Virginia shook her head. “I don’t have the strength for that,” she said. “I just want some peace.”
Dwayne, who had been quietly observing, spoke up. “Ron, maybe it’s time we consider hospice care. They can provide the comfort she needs.”
Ron bristled at the suggestion. “Are you saying we should just let her…?”
“No, son,” Dwayne said gently. “I’m saying we should let her be comfortable. Let her rest. She’s in so much pain.”
Ron stormed out of the room, his emotions a whirlwind. He felt helpless, angry, and confused. But later that night, as he sat alone in the living room, he realized Dwayne was right. It wasn’t about giving up; it was about giving Virginia the dignity and peace she deserved.
The next morning, Ron approached Dwayne. “I’m sorry. You’re right. We need to think about what’s best for Mom.”
Dwayne nodded, his eyes filled with understanding. “We’re all in this together, Ron. We both love her and want what’s best for her.”
They called the hospice care team, who arrived with compassion and expertise. They explained how they would manage Virginia’s pain and provide her with the comfort she needed.
As the days passed, the tension between Ron and Dwayne eased. They took turns sitting with Virginia, sharing stories and moments of silence. The house became a place of quiet love and support.
One afternoon, Virginia looked at Ron with clear, grateful eyes. “Thank you, my son,” she said softly. “And thank you, Dwayne.”
Ron and Dwayne exchanged a look of mutual respect and understanding. In that moment, Ron realized that family wasn’t just about blood—it was about love, support, and being there for each other in the toughest times.
Hospice care had given Virginia the comfort she deserved, and it had also brought Ron and Dwayne closer together. They both knew they had made the right decision, honoring Virginia’s wish to rest and finding strength in their newfound bond.