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Since our Partnership began in 2017, our Partners have provided services, education, and resources to individuals and organizations throughout our community in our mission to enhance the way we live by fundamentally changing the way we talk about death.
Having end-of-life conversations can be challenging, but their importance is vital. When Laurie’s father fell ill, the Arizona End of Life Care Partnership was able to connect her family to resources that helped advise medical staff how to carry out her father’s final wishes. Laurie’s message for all of us emphasizes the importance of having conversations with your loved ones about your end-of-life care wishes. Our Partnership extends a sincere thank you to Laurie for sharing her story and for her support of our work.
Death affects everyone, especially young people grieving the loss of a loved one. Thanks to funding from Vitalyst Health Foundation, we are addressing the impact of death loss on Opportunity Youth who identified unsupported grief as a major trauma through a project with Goodwill METRO, Tu Nidito, and Pima County Juvenile Court Center. One of the young people receiving support through this project was Tim, and we were fortunate to have him share his story with us.
Banner Alzheimer’s Institute
Banner Alzheimer’s Institute (BAI) educates providers regarding conversations around diagnosis, stages of dementia, and end of life. Additionally, memory cafés and support groups for Ambiguous Loss are provided by BAI social workers. In a recent Steps to HOPE Ambiguous Loss group therapy program for family caregivers, Maryanne* attended and shared that she and her husband, Douglas,* had worked for the U.S. Forest Service over the years and were quite active and adventurous. They enjoyed traveling and ended up settling in an RV park in Casa Grande, AZ where they developed a solid community of friends. Douglas developed Alzheimer’s disease and after several years of caregiving, Maryanne placed him in a memory care facility. The Steps to HOPE group offered her a virtual community of support. She shared her thoughts about participating in Steps to HOPE program:
“The program has really been helpful as things with Douglas have gotten worse. It’s hard to explain, but I had a change in attitude and expectations because of the Ambiguous Loss program. I’m not so focused on not knowing what’s going to happen but reflecting more on shorter term goals, like taking time for myself and getting the house sold and moving closer to Douglas. I want to thank you again for all the support you gave us. By having a better understanding of the type of loss I’ve experienced, I have been able to cope better.”
*Real names have not been used.
Dunbar Coalition, through the Coalition for African American Health & Wellness, provides Advance Care Planning education that is tailored for the Black community and conducted in spaces that are comfortable, allowing open exchange of ideas. A participant in one of the educational sessions shared that she found her experience to be of utmost importance. After 51 years of marriage, this participant and her spouse had completed their Advance Directives. When her husband became ill, she had to remind her husband of what they had planned. He spent 22 days in hospice where he could be treated as he had wished. She reported, “Hospice was great and was a good support for me so that I could spend my time talking with my husband and holding his hand. The gift of this precious time with my husband in his final days cannot be put into words.”
Southwest Folklife Alliance
Southwest Folklife Alliance (SFA) is funded to conduct ethnographic studies of home-based caregivers. The SFA facilitators gather with the cohort of ethnographers for weekly trainings via Zoom. They report that these weekly sessions have become safe and nurturing spaces for the ethnographers to express themselves openly about death. Several cohort members voiced their gratitude for this work and this opportunity especially during COVID, a time so full of grief and loss. As it happened, one of the cohort members was actively caring for a dying friend. She was providing medications throughout the night so that his wife could sleep, running errands, preparing food, and keeping her friend company. She shared that the cohort space had nurtured her during this challenging caregiving process and helped her be present for her friends and family members in their time of uncertainty and increased need. Her experience also offered wisdom and first-hand knowledge to the cohort as they provided support to one another during this challenging time.