Making a choice to transition to hospice is a big step for any family, but especially so for families with children who have life-threatening illnesses. It can be hard to imagine a child at the beginning of their life as being appropriate for hospice care. However, kids need hospice too.
For some children, their complex medical diagnoses or chronic illness are such that cure focused treatments are no longer successful. When this happens, children deserve supportive care so they do not have to remain hospitalized. Currently, in the Omaha area there are minimal options for pediatric families. Because of this, Endless Journey has started a pediatric hospice program to support the youngest patients in our community.
When working with pediatric hospice patients, there is a need to provide support for multiple family members at once. The team provides direct medical care in the home for the patient, emotional support for the caregivers, and developmentally appropriate care for any siblings. This compassionate, family-centered care includes connecting families with community organizations to help provide meaningful experiences and facilitate memory making. At Endless Journey, the team knows that time is a resource we cannot create more of so we aim to make the most of each moment.
Pediatric hospice is unique in that families can receive hospice care while also still engaging in curative treatments; this is called concurrent care. Under the affordable care act (sec. 2302) in the state of Nebraska, children aged 19 years and younger are eligible to receive this concurrent care. Because of this, Endless Journey has fostered partnerships with the pediatric hospital systems in the area to ensure that our in-home hospice support is well coordinated with the in-clinic plans of the primary medical teams.
Making the choice for hospice has historically had a connotation of “giving up,” but in practice, hospice is looking towards living well with the focus of what is most important to the family.
Editor’s Note: This article was submitted by Katie Ransdell, MS, CCLS, Bereavement Coordinator & Certified Child Life Specialist with Endless Journey Hospice where she can be reached at 402-800-8145
Wings of Comfort: The Retreat Hospice by Saad Outdoor Oasis Transformed by Home Depot's GenerosityAt The Retreat Hospice by Saad, a haven dedicated to providing compassionate care during life's final season, an extraordinary transformation unfolded in 2023, thanks to the benevolent partnership with The Home Depot Foundation. This collaboration showcases the power of community service and highlights the incredible impact that thoughtful gestures can have on the lives of those facing the challenges of hospice care.Each year, local Home Depot stores rally theireams, resources, and expertise for community improvement projects. The range of initiatives is vast, from building homes for veterans to crafting bird sanctuaries for families in need. The Retreat Hospice became a recipient of Home Depot's volunteer projects, turning their grounds into a serene haven for patients and their families.Brian Clifford, the local Home Depot manager, collaborated closely with the dedicated team at Saad to bring to life a project that would resonate with the unique needs of Southern Alabama's population. The result was an oasis designed to connect patients with the tranquility found in nature, particularly through the enchanting world of native birds.One heartwarming suggestion from the family of a guest at The Retreat Hospice led to the creation of bird-friendly spaces visible from patient rooms. When the opportunity arose for Home Depot to enhance the hospice's grounds, the decision was clear a project that aligned with the desires of those seeking solace in the beauty of nature.Home Depot's generous donation included over 20 unique birdhouses, bird baths, feeders, vibrant flowers for a butterfly garden, lush shrubbery, potted plants, and new rock lining the walking trails. The transformation aimed to offer guests and their loved ones a variety of spaces for reflection, connection, and respite.The birdhouses, strategically hung from trees just outside each patients porch, have become focal points where families can be found rocking together, sharing laughter, shedding tears, reading, or simply enjoying quiet moments alone. The addition of beautifully landscaped areas and improved walking trails further enhances the hospice's commitment to providing a peaceful and comforting environment.The collaboration between The Retreat Hospice and Home Depot represents more than just physical improvements; it symbolizes a community coming together to support one another. The project not only contributes to the well-being of current patients and their families but also leaves a lasting legacy of compassion and kindness.To Home Depot, The Retreat Hospice expresses heartfelt gratitude for the choice to partner with them. The generosity and joyful service displayed by Home Depot's "army in orange" have left an indelible mark on the hospice's mission to care for the community with excellence. This transformative project will continue to be a source of comfort and solace for those navigating the final season of life, reminding everyone involved of the profound impact that acts of kindness can have on the human spirit. The Retreat Hospice by Saad is a private, freestanding hospice respite located in Mobile, Alabama. They offer 24-hour resort-level care. Contact the Retreat Hospice by Saad at 251-380-3810.
The journey of Alzheimers and dementia is not only a medical challenge but a profound emotional experience that impacts not only the individuals affected but also their loved ones. At the heart of this journey lies the art of communication, a skill that gradually slips away as the conditions progress. In this blog post, we will explore the intricacies of communication in the realm of Alzheimers and dementia, understand the challenges faced, and uncover strategies that can help bridge the gap and bring comfort to our senior loved ones.Alzheimers and dementia are neurodegenerative disorders that cast a shadow over memory, cognition, and communication. These conditions affect millions of individuals worldwide, causing memory loss, cognitive decline, and difficulties in processing and understanding information. As caregivers and loved ones, understanding the landscape of these conditions is essential to provide appropriate care and support.Challenges in CommunicationCommunication is a fundamental aspect of human interaction, but Alzheimers and dementia disrupt this crucial channel of connection. Seniors battling these conditions often face various challenges that hinder their ability to express themselves and engage in meaningful conversations. These challenges include:Word-Finding Difficulties: The gradual decline in vocabulary leads to pauses and hesitations as seniors struggle to recall and articulate words.Limited Vocabulary: Over time, the richness of their vocabulary diminishes, leaving them with a limited range of words to express themselves.Impaired Comprehension: Understanding spoken and written language becomes increasingly challenging, making it difficult for them to follow instructions or engage in discussions.Repetitive Speech: Memory lapses can lead to the repetition of phrases, questions, or stories, reflecting their frustration and need for reassurance.Non-Verbal Communication Issues: The ability to interpret facial expressions, gestures, and body language diminishes, causing misunderstandings and frustration.Navigating the Effects on Language and MemoryThe impact of Alzheimers and dementia goes beyond communication challenges, affecting memory and cognitive abilities:Memory Loss: Both short-term and long-term memories are compromised, making it difficult to remember recent events or even recognize loved ones.Language Comprehension: The ability to understand complex sentences and abstract concepts becomes progressively challenging, contributing to the breakdown in communication.Reading and Writing Difficulties: Declining linguistic abilities can lead to struggles in reading and understanding written material, and in some cases, even writing coherent sentences.Speech Changes: The rhythm and fluency of speech are disrupted, leading to fragmented sentences and pauses, which can be frustrating for both the individual and their caregivers.Social Isolation: Communication difficulties often result in seniors withdrawing from social interactions due to embarrassment or frustration, leading to increased isolation and potentially exacerbating cognitive decline.Strategies for Effective CommunicationAs caregivers and loved ones, it is our responsibility to adapt our communication strategies to better connect with seniors battling Alzheimers and dementia. Here are some proven strategies to enhance communication:Patience and Empathy: Practicing patience and showing empathy are foundational to effective communication. Taking the time to understand their emotions and being present with them can create a sense of security.Simple Language: Using clear and concise language reduces confusion. Break down complex ideas into smaller, understandable pieces to facilitate smoother conversations.Non-Verbal Cues: Engaging in non-verbal communication through touch, eye contact, and gestures can convey emotions and provide a bridge when words fall short.Offering Choices: Providing choices empowers individuals and fosters engagement. It also simplifies decision-making and encourages their participation in conversations.Visual Aids: Visual aids such as pictures, diagrams, or objects can help convey messages and ideas, transcending language barriers and making communication more accessible.Validation: Acknowledging their feelings and experiences validates their reality. By responding empathetically, you build trust and strengthen the connection.Dealing with Challenging BehaviorsCaring for seniors with Alzheimers and dementia requires understanding and addressing challenging behaviors:Responding with Understanding: Challenging behaviors often stem from frustration or confusion. Responding with patience and understanding rather than confrontation can defuse tense situations.Redirection: Gently redirecting their attention from the behavior to a more positive activity can help shift their focus and reduce agitation.Managing Sundowning: Seniors with Alzheimers may experience increased confusion and agitation during the evening, a phenomenon known as sundowning. Establishing calming routines and minimizing stimuli can ease this transition.Addressing Wandering: Wandering is another common behavior associated with Alzheimers and dementia. Minimize safety hazards, use visual cues, and engage them in purposeful activities to curb this behavior.Empowering Communication with Tools and ResourcesEnhancing communication also involves utilizing various tools and resources:Assistive Technologies: Speech-generating devices, augmentative and alternative communication apps, and text-to-speech software offer alternative means of expression, empowering seniors to communicate effectively.Support Groups: Connecting with others facing similar challenges in support groups provides a sense of community, validation, and shared experiences.Professional Guidance: Speech-language pathologists and healthcare professionals offer expertise in developing personalized communication strategies tailored to the individuals needs.Recommended Reading: Exploring literature on effective communication techniques, active listening, and understanding cognitive disorders equips caregivers with valuable insights and strategies.In the midst of the challenges posed by Alzheimers and dementia, effective communication becomes a beacon of hope. By understanding the unique hurdles seniors face, adopting empathetic communication strategies, and harnessing the power of assistive technologies and resources, we can bridge the gap between the world of words and the world of emotions. In doing so, we illuminate the path for our loved ones, enriching their lives and fostering connections that endure beyond the shadows cast by these conditions.
Caregiver Stress Awareness in Hospice CareBy: Joelle Jean, FNPCaring for a loved one who is terminally ill and on hospice is emotionally and physically taxing. In 2015, an estimated 39.8 million caregivers provided unpaid care to an adult with a disability or illness. The estimated value of the service supplied by caregivers is up to $470 billion since 2013.Caregivers may deny help from others, perhaps out of guilt or obligation. However, 1 out of 6 caregivers report not being asked what they need to care for themselves. Caregivers can work up to 8.3 hours per day or 66 hours per week during their loved ones last days of life. Often, this is in addition to working a full-time job and caring for their own immediate family.Caregivers are at risk for depression, severe fatigue, or burnout, or even health issues such as hypertension, stroke, obesity, or weight loss due to stress.What is a caregiver?A caregiver, also known as an informal caregiver, is an unpaid individual or group of individuals who provide care to a loved one. Caregivers can be a spouse, family members, partner, friend, neighbor, or combination of these individuals.A caregiver assists their loved ones with activities of daily living which include:BathingDressingEatingToiletingShoppingHousekeepingTransportationMedical tasks such as giving medications, changing wound dressings, and managing painA caregiver can also play a significant role in coordinating care for their loved ones. Many are appointed power of attorney or the primary decision maker for their loved ones, managing finances, property, and most suitable medical care for the individual. What causes caregiver stress or burnout?There is no clear definition of caregiver stress. The Merriam-Webster dictionary defines stress as a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation. Burnout can be a response to stress, defined as extreme emotional exhaustion. According to stress.org, stages of burnout are:EnthusiasmStagnationFrustrationApathy or loss of interestA caregiver with stress or burnout exhibits signs of feeling overloaded, overwhelmed, emotionally drained, tiredness, detachment from the person they are caring for, and a reduced sense of accomplishment.Who is most affected by caregiver stress?Caregiver stress affects the person or people directly caring for their loved one. Stress can also affect caregivers in different ways. For example, one caregiver may find specific tasks stressful or overwhelming while another caregiver may find the task relaxing and rewarding.What are the signs and symptoms of caregiver stress?Often, caregivers are not aware of their stress or feeling of burnout. Signs and symptoms of caregiver stress can be subtle or obvious. It is important to identify caregiver stress so it can be eased.AnxietyAnxiety is a stress response, activating the fight or flight response that happens chemically in the brain. Physically, anxiety can be described as:Increased heart rateFeelings of doom or hopelessnessStomach pain and or spasmsHeadacheSweatingHeavy breathingFeeling weak or tiredWorryFatigueCaregivers suffering from stress may not realize they are fatigued. Fatigue is the bodys response to burnout and can be physical, emotional, or psychological.Weight changesStress can cause weight changes and affect eating patterns. Weight change can occur when dealing with caregiver stress. Rapid weight gain or unexplained weight loss is a warning sign of caregiver stress and should be addressed appropriately.IrritabilityCaregivers may become easily annoyed or short-tempered with loved ones, family members, or friends. Feeling irritable may be a warning sign of caregiver stress.Feelings of being overwhelmedFeeling overwhelmed or anxious is normal. Caregivers may become overwhelmed with the amount of care needed to provide to their loved ones. Trouble concentrating, changes in sleep patterns, and changes in eating habits may occur.DepressionLosing interest in activities can be a sign of depression due to the demanding responsibilities of caregiving. Signs of depression include:Little interest or pleasure in doing thingsFeeling down or hopelessChange in sleep patternsFatigue and tirednessThoughts of death or suicidePotential health risks as a result of caregiver stressChronic stress (or stress lasting for more than six weeks) can have lasting health problems. Caregivers exhibiting signs and symptoms of stress and burnout have a higher chance of developing health risks.High blood pressureCaregivers can suffer from high blood pressure due to the stress of caring for a loved one in hospice. If caregivers have already been diagnosed with high blood pressure, stress can make the disease worse. Uncontrolled high blood pressure puts caregivers at higher risk for:StrokeAtherosclerosis or disease of the arteriesHeart attackOrgan damageWeakened immune systemThe immune system is in place to protect the body from illness and disease. Stress can cause a weakened immune system. With a weakened immune system, caregivers can become sick or develop chronic illnesses such as:Inflammation throughout the bodyIncrease in fat in the blood and bodyChronic painFrequent colds and infections Short term memory lossStudies have shown that a symptom of chronic stress is the shrinking of the brain. Shrinking of the brain causes short-term memory loss. Short term memory loss affects learning, judgement, and memory process. Headaches and body painsStress can cause headaches and body pains. On a hormonal level, the increase of cortisol causes headaches even at rest. The physical nature of caring for a loved one on hospice- lifting, standing, walking, and rotating- can cause severe body pain or injury. How to relieve or prevent caregiver stress and burnoutSelf-care is imperative for caregivers caring for their loved ones in hospice. Self-care means caring for yourself, so you can improve your health to care for others.Exercise regularlyFinding the time and the energy to exercise might sound difficult. However, even carving out 30 minutes a day has positive effects on your health. Exercising whether it is running, walking, swimming, or doing yoga will lower blood pressure, increase energy, and improve mood.Asking and accepting help from othersAccepting help can be difficult for some caregivers. It is important to ask and accept help so that you are available for your loved one mentally and physically.Under most insurances and Medicare, respite care is available to relieve the burden of caregiver stress. Respite care will give short term caregiver relief to those who are in need.Eat and sleep wellEating and sleeping well are fundamental in protecting your physical and mental health. A well-balanced meal of fruits, vegetables, and plant-based foods is important for physical and mental well-being. Adding vitamins such as a multivitamin, vitamin D, or vitamin B-12 can also help improve your mood and energy.Having a good nights sleep has many health benefits. Feeling well-rested and energized will only benefit you, as the caregiver, and your loved one. Improved memory, mood, and overall well-being are all benefits of quality sleep.Seek out support groupsSupport groups add immense value to caregivers who are caring for loved ones in hospice. Joining support groups reassures caregivers that they arent alone. Support groups:Allow you to talk about your feelingsHelp you realize others are going through the same situationReduces stress and depressionTeaches coping skills and ways to divert stressMaintain personal relationshipsMaintaining personal relationships is as important as joining support groups. Meeting up with friends or family members allows you to relax. It also allows you to take time for yourself and time away from your loved one. Awareness of caregivers stress and burnout must be addressed and acknowledged for caregivers to feel supported and recognized for their challenging work. The hospice team and its services are a fundamental part of bringing this awareness to the forefront.
At Endless Journey we encompass the holistic philosophy in that the client and their family will be nourished physically, emotionally, and spiritually as they prepare for end of life and beyond. We provide hospice services to the Omaha area and surrounding communities. We take pride in offering an alternative to end of life care unlike those currently offered by the medical community. Endless Journey offers a full range of services including nursing and psychosocial support, diet and grief support, and holistic intervention.
At Endless Journey we encompass the holistic philosophy in that the client and their family will be nourished physically, emotionally, and spiritually as they prepare for end of life and beyond.We provide hospice services to the Omaha area and surrounding communities. We take pride in offering an alternative to end of life care unlike those currently offered by the medical community.Endless Journey offers a full range of services including nursing and psychosocial support, diet and grief support, and holistic intervention.