The Relief of Hospice: Whole Person and Whole Family Support

Author

Gateway Hospice

Posted on

Jul 17, 2020

When a person is diagnosed with a serious illness, the whole family feels the impact. Roles change. Everyday life is altered as tasks shift toward caregiving and navigating the course of illness. Family caregivers often report uncertainty, fear and fatigue. Some describe feeling at sea in their experience.

Understanding this, hospice views a patient and family as a unit of care, providing support throughout the caregiving journey. Hospice starts with a plan co-created by the patient, family caregiver(s) and hospice team, made up of a physician, registered nurse (RN), certified nurses aide (CNA), social worker and chaplain.
The top priority for the physician and RN is helping patients feel as comfortable as possible, as quickly as possible, through skilled symptom management. Hospice CNAs visit on a regular basis, providing a special kind of hands-on care. Social workers help families understand and access resources and provide support through listening, counseling and compassionate guidance.
Chaplains can facilitate communication between the family and their faith community, provide resources and help families with spiritual concerns. In addition, specially trained hospice volunteers lend friendship and support to the entire family, including respite care that may allow a caregiver to have time free from the day-to-day responsibilities.
People living their last season of life deserve the encompassing support of hospice. So do families. If the time is right for hospice care, dont hesitate. You can talk with your doctor, or get in touch with a hospice provider. The initial step of choosing hospice can feel difficult, but what we hear so often from caregivers is, We wish wed found you sooner.
Editors Note: This article was submitted by Shelly Marusko, Executive Director for Gateway Hospice. She can be reached at 412-536-2020 or at [email protected].

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Others may benefit from ongoing guidance while navigating a complicated medical situation.   Whether you're an older adult facing cancer treatment, a spouse supporting a loved one, or an adult child helping an aging parent, Vital Voice provides personalized support based on your needs.  For individuals searching for a cancer patient advocate in Pittsburgh or healthcare advocacy services in Western Pennsylvania, Vital Voice offers a local connection and a compassionate approach to navigating difficult healthcare experiences.  Because behind every diagnosis is a real person with questions, concerns, hopes, and decisions that deserve thoughtful attention. You Have a Voice in Your Cancer Care. Don't Be Afraid to Use It. A cancer diagnosis can bring uncertainty, but it doesn't take away your right to ask questions, understand your options, express your preferences, and participate in decisions about your health.  You don't have to understand every medical term.  You don't have to remember every detail from every appointment.  And you certainly don't have to pretend you have everything figured out.  What matters is knowing that support is available.  Whether you're newly diagnosed with breast cancer, prostate cancer, lung cancer, colorectal cancer, or another serious illness, or you're helping a loved one navigate treatment, a healthcare advocate can help you approach the next step with greater clarity and confidence. You Don't Have to Navigate Cancer Alone:  If you or someone you love is facing a cancer diagnosis or another challenging healthcare situation in Pittsburgh or Western Pennsylvania, consider connecting with Wendy at Vital Voice to learn more about personalized healthcare advocacy and support.  Because when it comes to your health, understanding your options, asking the right questions, and having someone in your corner can make all the difference. Your health matters. Your questions matter. Your voice matters.  Vital Voice provides healthcare advocacy and guidance, not medical diagnosis or treatment. Always consult qualified healthcare professionals regarding medical decisions and treatment.

Family & Caregiver Support FAQs

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How to Balance Caregiving with Your Own LifeBalance caregiving by setting clear limits, sharing tasks with family and paid help, using respite care, protecting your own health and time, and asking for support early rather than waiting until you are exhausted.Why Balance Is HardCaregivers often juggle jobs, children, and household duties while supporting a loved one. Without breaks, stress, poor sleep, and isolation can lead to caregiver burnout.Strategies That Help Define your role. Decide what you can do, what you can share, and what you will pay for or delegate. Hold a family meeting. Divide tasks by strengths and availability, including remote tasks like bill paying or scheduling. Create a shared calendar for appointments, medications, and visits. Use respite care. Even a few hours a week from a relative, volunteer, aide, or adult day program restores energy. Set boundaries at work. Talk with your employer about flexible hours, remote work, or leave options. Protect your health. Keep your own medical appointments, move your body, eat regularly, and sleep. Stay connected. Keep up friendships and activities that recharge you. Signs of Caregiver Burnout Constant exhaustion or frequent illness. Feeling hopeless, resentful, or overwhelmed. Withdrawing from others. Changes in appetite or sleep. If you notice these, speak with your doctor or a counselor. 4. Support Available for Family CaregiversFamily caregivers can access respite care, counseling, support groups, caregiver training, adult day programs, financial assistance, and workplace protections. Local Area Agencies on Aging are the best first stop in the United States.Types of Support Respite care: Short-term relief, at home or in a facility. Adult day programs: Supervised daytime care and activities. Support groups and counseling: In person, by phone, or online. Training: Courses on lifting, dementia care, and medication management. Home care and meals: Aides, home-delivered meals, and transportation. Financial and Legal Help Medicaid home and community-based programs, which in some states can pay for care at home, and in a few, family caregivers. VA Caregiver Support Program for those caring for veterans. Tax benefits, such as possible medical expense deductions or dependent credits; ask a tax professional. Elder law attorneys for powers of attorney, benefits planning, and long-term care planning. Workplace ProtectionsIn the U.S., the Family and Medical Leave Act (FMLA) may allow eligible employees up to 12 weeks of unpaid, job-protected leave a year to care for a family member with a serious health condition. Some states offer paid family leave, and some employers offer caregiver benefits.Programs vary by country and region. Outside the U.S., contact your local government aging or social services office. 5. How to Handle Resistance to Care?Resistance usually stems from fear of losing independence, not stubbornness. Respond with empathy, find the root concern, offer choices, introduce help gradually, and know when safety risks require stepping in.Why Older Adults Resist Help Fear of losing independence or control. Embarrassment or denial about declining abilities. Worry about cost or being a burden. Distrust of strangers in the home. Cognitive changes, including dementia, that reduce awareness of problems. Strategies That Work Ask why. Understand the specific fear before offering solutions. Reframe the help. Present it as support for staying independent: "This will help you stay in your home longer." Go slow. Start with a few hours of help or a friendly companion, and build up. Offer choices. Let your parent pick the caregiver, schedule, or tasks. Use a trusted messenger. Doctors often carry more weight than family. Pick your battles. Focus on safety and health priorities rather than minor preferences. Try a trial period. "Let's try it for a month and then decide together." When Dementia Is InvolvedArguing facts rarely helps. Stay calm, validate feelings, redirect gently, and keep routines consistent. Ask the doctor about evaluation and dementia care strategies.When to Step InA capable adult has the right to make their own choices, even risky ones. But if there is immediate danger, such as wandering, unsafe driving, neglect, or serious medical needs, contact their doctor. If your parent lacks decision-making capacity, an elder law attorney can explain options such as guardianship, and Adult Protective Services can respond to self-neglect or abuse concerns.Disclaimer: This content is for educational purposes and does not replace professional medical, legal, or financial advice. Consult qualified professionals about your family's situation.

Local Services By This Author

Gateway Hospice

Hospice 9380 McKnight Rd 201 Arcadia Ct, Pittsburgh, Pennsylvania, 15237

Gateway Hospice seeks to provide the highest quality care to individuals in need of specialized end of life care. They provide supportive services wherever the patient calls "home". Hospice focuses on pain and symptom management for individuals with life-limiting illness. Our hospice cornerstone is to treat the whole person body, mind, and spirit and not just the disease. Hospice enables patients to carry on a pain-free lifestyle, while supporting the patient, family, and caregivers with dignity, comfort, and peace of mind, when aggressive medicine is no longer desired or appropriate.