Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Monday, October 29, 2012

Hospice Team: How We Learn From Patients

As a social worker for Casa de la Luz Hospice, I have the honor of working with many different types of families, including those of different cultural backgrounds.

Once,  I had the privilege to serve a large family who had lived in a refugee camp for 20+ years in another country before immigrating to the United States.  The family came to America with the hopes and dreams of so many other immigrants—they wanted a chance to be free, to enjoy prosperity, gain an education, contribute to the greater world and be with their family. As this family began their integration into U.S. society, they were faced with the unexpected—an elderly family member became ill with terminal cancer.

Without a doubt, the family faced many hurdles—an elder’s terminal illness, language and cultural differences, and employment and financial concerns. 

In the refugee camp the family learned to deal with illness without much medical care. Now, they had a whole hospice team sent to their home to help them manage their loved one’s care. It was overwhelming for them at first.  

The family was now facing end-of-life issues, and they expected to care for their loved one at home. In their culture, the role of the eldest local son was to be primary caregiver, financial provider and overseer of the entire family. Other family offered support and contributed to the patient’s care, but this eldest son had the greatest cultural pressure.

The son worked a part-time job outside the home to sustain the family, and was also the Medicare paid, part-time primary caregiver. He eventually became a certified caregiver.

The final challenge for the family was how to provide cremation services for their elder after his passing. The cost of the lowest cremation service would absorb 3/4 of the total family monthly income. A solution was found, but the cost of final arrangements is still a dilemma many families face in hard economic times. (Editor’s Note: See our previous entry about making plans for final arrangements. If you do not yet have plans in place, ask your hospice social worker to guide you in making funeral arrangements.)

I was touched most by how the family found creative ways to survive and how strong their family was in supporting each other. They showed a high level of adaptability and resilience.  They were eager to share their cultural hospitality with the hospice staff by making a special chai tea when we visited. 

This family was not afraid to ask for help, but was also determined to find ways to help themselves. They continually expressed “how proud we are to be Americans.” They moved halfway around the world to realize a dream, and in the midst, had to persevere through the loss of an elder. They showed me the ultimate level of humanity—how we love, how we adapt, how we continue to persevere through the most difficult of challenges.

By Christy Noriega, Hospice Social Worker

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