Journeys Through Hospice and Government-Funded Family Caregiving in Southern California
There are many topics we do not speak about, or if we do, we do so quietly in hushed rooms. As generations continue to evolve, so too communication and discussing issues openly…like family care.
In Southern California, this narrative quietly unfolds, often unnoticed: a narrative quietly unfolds, often unnoticed: the journey of hospice care and government-funded family caregiving. A story is a testament to the strength, resilience, and compassion of individuals and families who navigate the complexities of care at the end of life.
With diverse cultures, economic disparities, and a unique blend of urban and suburban living, where luxury coexists with struggles, many families face the profound challenge of providing care for their loved ones in their final stages of life. The modernity of medicine and deathcare have, unfortunately, created a societal wedge between the living, the dying, and the transition of death.
Hospice Care: A Compassionate Approach
Hospice care is a compassionate approach to end-of-life care that focuses on providing comfort, dignity, and quality of life for individuals with terminal illnesses who are at the last stages of their life.
It involves a multidisciplinary team offering medical, emotional, and spiritual support, typically in the patient's home, hospice centers, or nursing facilities. The goal is to manage symptoms and pain while supporting both the patient and their loved ones during this difficult time. Hospice care can be administered by licensed nurses and caregivers and trained family members.
Maria's Story: A Daughter's Love
Maria, a resident of East Los Angeles, shares her journey of caring for her mother, Sofia, who was diagnosed with terminal cancer. The family opted for hospice care, and, through a friend’s suggestion, death doula services, allowing Sofia to spend her final days in the comfort of her home, surrounded by loved ones. Maria recalls the hospice and doula team an unwavering force of support: "They provided not only medical care but emotional and spiritual support. It was a holistic approach that honored my mother's dignity."
John's Journey: A Brother's Dedication
Government-funded programs like In-Home Supportive Services (IHSS) play a crucial role in supporting family caregivers. These programs offer financial assistance, training, and resources to those who dedicate their lives to caring for their loved ones.
John became the primary caregiver for his sister, Lisa, who suffers from severe multiple sclerosis. As a participant in the IHSS program, John receives financial support that enables him to provide the necessary care without the added burden of financial strain. "The IHSS program has been a lifeline," John says. "It allows me to be there for Lisa without worrying about how to make ends meet. We are meeting with a doula soon to help the both of us through this sometimes emotionally overwhelming journey"
Information about IHSS
Find more information about IHSS: https://www.cdss.ca.gov/in-home-supportive-services
https://www.cdss.ca.gov/inforesources/ihss/ihss-providers/how-to-become-an-ihss-provider
To become a paid caregiver for a family member in California, you must meet certain qualifications and complete specific training programs; including passing a criminal background check, health screenings, and completing a state-approved caregiver training program:
https://advancecaregivers.org/in-home-caregiver-training/
https://aging.ca.gov/Programs_and_Services/Family_Caregiver_Services/
“As of November 2022, the average annual pay for the IHSS in California is $30,027 a year, and that works out to be approximately $14.44 an hour. This is the equivalent of $577/week or $2,502/month.
Currently, as an IHSS Protective Supervision provider, the maximum number of hours you can claim is 283 per month. That equates to being able to receive $4,245 per month at the $15 per hour mark, with the maximum amount of hours.” Article link. https://www.americanadvocacygroup.com/how-much-can-i-get-paid-for-ihss-in-california/
Challenges and Strengths
Despite the invaluable support from hospice care and government-funded programs, families in Southern California often face significant challenges. Navigating the healthcare system, balancing work and caregiving responsibilities, and coping with emotional stress are just a few of the hurdles they encounter.
These narratives highlight the importance of compassion, support, and resilience. As our society leans into community care to bring end-of-life care and deathcare back home, so too the need for comprehensive, accessible care that honors the dignity and humanity of those at the end of their life journey and the family members who support them.
In Other Related Worlds
These practices highlight the diverse ways in which societies around the world approach death and dying, offering a range of perspectives on how to honor loved ones at the end of life and to continue to care for them in the dying process and in death.
Mexico
Before death, family cares for family during the end of life. After a death, a vigil is held with family and friends for 24-48 hours. They will eat and drink together, and guests will pray and bring the family gifts. The deceased will be buried with their clothing and important possessions. Children will be included from a young age.
New Zealand
Home funerals and family-led deathcare are embraced as part of Maori culture. The tangi (funeral) is a significant cultural event, often held at a marae (community meeting place). The body is typically cared for by family members, staying at home for several days. This practice allows for a more intimate and personal farewell, enabling family and friends to gather, share stories, and grieve together.
Ireland
Home wakes are a longstanding tradition. The deceased is often laid out in the family home, where friends and relatives visit to pay their respects. This practice fosters a supportive community atmosphere and helps the bereaved family feel less isolated. The wake can last several days, culminating in a funeral service and burial.
Japan
The tradition of okuribito or "send-off people" often involves family members preparing the body at home. While modern Japanese funerals can be elaborate, with professional services involved, there is still a strong cultural emphasis on the family’s role in caring for the deceased. This can include washing and dressing the body, holding a wake, and performing rituals that help the soul transition to the afterlife.
Across these cultures, there is a strong emphasis on family and community involvement in the deathcare process, promoting collective mourning and support. Many of these practices are deeply rooted in cultural and/or religious traditions. Home funerals allow for a more personal and intimate way of saying goodbye, offering a space for meaningful and prolonged mourning.
