“Hospice” is a foreign concept to most families until there’s an immediate, critical need. Dealing with a terminal diagnosis, lifestyle changes, a crash course in caregiving, and the emotional and mental tidal waves can be overwhelming.
Where, then, can hospice families turn so they feel like they’re not alone? Where can they find facts, reassurance that they’re doing the right thing, and hope? Review this roundup of quality hospice resources. We understand caregivers don’t have a lot of time to research, so skim the list and explore what meets you in your hospice journey today.
Hospice Provider Support
As the primary in-person support system, providers like Heart to Heart Hospice come alongside families offering services beyond healthcare, including caregiver education, spiritual and emotional support, and guidance for the end-of-life journey. From nurses to aides to social workers and chaplains, they help answer questions, triage immediate needs, listen, help with hygiene or activities of daily living, offer psychosocial services and much, much more.
In addition, Heart to Heart provides numerous proprietary publications and online resources to help families, which include:
- The Patient and Family Handbook, an extensive resource booklet containing tips on daily caregiving, disease progression, safety, grief, and more.
- Caregiver’s Corner Blog on our website (under Resources) featuring several new posts a month. Skim the blog page for topics relevant to your needs.
- A Memory Journal for families to record important conversations and memories from the patient.
- A Pain & Symptom Journal to help in-home caregivers track patient’s disease progression, a helpful tool for pain and symptom management.
- A Facebook page with caregiving tips, hospice education, and highlighting services or special events.
- Referrals to local support groups, such as Alzheimer’s or cancer patient caregiver support, grief counseling, chaplains, churches, synagogues, and more.
- The Heart to Heart Hospice Foundation with extra resources and support for qualified patients, scholarship programs, veteran support, disease-specific programs, and more.
Hospice Podcasts & Social Media for Caregivers
Sometimes you need snippets of information in small doses, like social media posts or podcasts with hospice nurses and other experts. Below are some popular accounts and podcasts.
- Instagram accounts like Hospice Nurse Julie or Suzanne B O’Brien RN (also on YouTube) help remove fear from the death and dying process through education and answering common questions.
- Hospice Explained Podcast is an entire podcast dedicated to hospice topics hosted by a hospice nurse.
- The Handle with Care: Cancer and Beyond podcast features interviews with Nurse Julie (part 1 and part 2).
- The Heart of Hospice Podcast was created to help personal and professional caregivers on a range of topics from grief to advanced directive planning and more.
Caregiver Support Groups & Help
Search results can be overwhelming when looking for information or support. We’re here to help make it easy with these recommendations.
- Caringinfo helps empower patients and caregivers to make decisions about end-of-life care and services. Explore topics like understanding the financial side of illness or your state’s advanced directive process. This is the patient/caregiver portal of the National Hospice and Palliative Care Organization.
- The Caregiver Action Network is the nation’s leading family caregiver organization, offering caregiver support and chat rooms.
- nextstepincare.org (guides to help family caregivers)
- VA Caregiver Support Program offers advanced support and resources for veteran caregivers.
- Next Step in Care provides easy-to-use guides for family caregivers and healthcare providers to work closely together for safe and smooth transitions for patients, and includes instructional videos on topics like wound care, mobility, and more.
- Find nursing home information at A Place for Mom or Caring.com.
You may need information when caring for certain diseases; consider these resources below.
- American Lung Association including navigating choices for palliative and hospice care.
- American Cancer Society Caregivers and Family page with resource videos on physical care training, advocacy, and more.
- National Cancer Institute Caregiver Resources including self-care tips, advance directives, and more.
- American Heart Association Caregiver Resources with communication tips, online support networks, and more.
- Alzheimer’s Association with an expansive caregiver section, including Stages and Behaviors of Alzheimer’s Disease, support groups, caregiver health tips and more.
- American Geriatrics
National Hospice Resources
- National Association for Home Care & Hospice
- American Association of Retired Persons caregiving page
- Hospice Foundation of America including Grief Resources
- For more on hospice benefits, qualification, and resources, visit these online hubs: Medicare, Centers for Medicare & Medicaid Services, and Veterans Affairs.
This list of resources is not an exhaustive list and does not indicate an endorsement by Heart to Heart Hospice of all positions or statements provided by each source. We hope you find helpful materials for your hospice caregiving journey.