Section 6: Caregiving

Aging: What Works, What Needs Work- Guided by Client Perspectives

by Daniela Liera

Keywords: elder care, vulnerability, narratives, experiential knowledge

It is common knowledge that the COVID-19 pandemic has hit the elderly population particularly hard, in terms of the biological disease process. However, the social impact has been less extensively explored. To better understand this aspect of the pandemic’s impact, I chose to work as a “home health aide” in Oro Valley, Arizona. In this role, I enacted care in multiple ways, in individual homes, retirement communities, and care facilities. One part of my job was to do small tasks that may not directly appear to be care, but that I learned took a large burden from my sicker and feebler clients. This
includes cleaning work, grocery shopping, and cooking. Another part was that which is commonly understood as “caregiving,” the more custodial tasks involved in caring for a body-showering, toileting, medication administration. But the part which I soon found to be the most important, and which was never in any “task list,” was the care of the human, which involved listening, sharing, and the simple act of being with someone. Three individuals who I worked with, one of whom is now deceased, taught me so much about care and humanity, more generally. They brought this project out of theoretical academia and into reality. The resources in this section of the syllabus will delve into the current state of elder care in Arizona, which has a long history of injustice and inadequacy. After addressing the existing problem, which has been recently exacerbated by the COVID-19 pandemic, this collection will provide and explain some of the protections and resources which do exist for elders in Arizona and throughout the United States. Also included are 2 guides, one from Massachusetts and one from Arizona, which are meant to help individuals make choices about elder care, and whose vast differences might suggest avenues by which Arizona can improve its systems. The resources in the final section offer perspectives from many different fields, all of which look forward to a reimagined elder care which takes individual perspectives into account. The aim of this compilation of works is to demonstrate that the ethics and efficacy of elder care in Arizona can be, and need to be, improved. I also hope to raise awareness of the plight that many elderly individuals in my community face and encourage other individuals to plan for this inevitable stage of life. Due to the scope of the project, not everything I hope to do with what I have learned fits into this document. I will continue to raise awareness about this problem by sharing my experiences as a caregiver and by sharing my clients’ stories. Additionally, I will continue to work in this role, so as to provide more care and learn more narratives. Though the stories I have acquired are meaningful, I cannot claim their universality. Other elderly individuals who I have not yet met may have very different perspectives to share. Thus, the strategies proposed in my materials may not solve every problem in elder care, but they provide a starting point from which this community can build.

Interview Transcript


Resources

The Problem 

Ryman, Caitlin McGlade and Anne. 2020. Feds Cited 1 in 4 Arizona Nursing Homes during the Coronavirus Pandemic. The Arizona  Republic. Arizona Republic. http://www.azcentral.com/story/news/local/arizona health/2020/09/10/coronavirus-pandemic-us-government-cited-arizona-nursing-homes-covid 19/5704708002/, accessed October 2020. 

Greene, Vernon L. 1984. Premature Institutionalization among the Rural Elderly in Arizona. Public Health Reports  (Washington, D.C. : 1974). U.S. National Library of Medicine.  https://www.ncbi.nlm.nih.gov/pubmed/6422496, accessed October 2020. 

Steinbach, Alison, Stephanie Innes , and Rachel Leingang. 2020. Arizona Hospitals Can Start Activating ‘Crisis Care’ Standards Due to COVID-19 Surge. The  Arizona Republic. Arizona Republic. http://www.azcentral.com/story/news/local/arizona health/2020/06/29/arizona-leaders-doctors-crisis-care-standards-coronavirus/3280852001/.,  accessed October 2020.

Duarte, Carmen. 2020. Shortage of Home-Care Workers in US, Arizona Called a ‘Growing Crisis’. Arizona Daily Star.  https://tucson.com/news/local/shortage-of-home-care-workers-in-us-arizona-called-a-growing crisis/article_f3acc21a-f915-593d-b0fa-d207080a3680.html, accessed October 2020. 

Clinco, Judith. 2019. Care for the Elderly on $166 a Day? No Wonder Some Nursing Homes Are Accused of Neglect.  The Arizona Republic. The Republic | azcentral.com.  http://www.azcentral.com/story/opinion/op-ed/2019/10/09/arizona-nursing-home-abuse-claims no-surprise-hire-more-investigators/3841310002/., accessed October 2020. 

Protections and Resources 

Arizona Adult Protective Services (APS). 2020. Adult Protective Services (APS) | Arizona Department of Economic Security. DES.  https://des.az.gov/services/basic-needs/adult-protective-services, accessed October 2020. 

THEFT AND LOSS FACT SHEET – The Consumer Voice. Theconsumervoice.org. The National Consumer Voice for Quality Long Term Care.  https://theconsumervoice.org/uploads/files/long-term-care-recipient/THEFT-AND-LOSS-FACT SHEET.pdf, accessed October 2020. 

Samuels, Claire. 2020. Eye-Opening Facts About Elder Abuse, and How to Effectively Report It. A Place for Mom.  http://www.aplaceformom.com/caregiver-resources/articles/elder-abuse., accessed October 2020. 

Guides 

Division of Licensing Services, Bureau of Long-Term Care Licensing. 2017. A Consumer’s Guide to Nursing Homes. Azdhs.gov. Arizona Department of Health Services.  http://www.azdhs.gov/documents/licensing/ltc-facilities/consumers-guide-nursing-home.pdf.,  accessed October 2020. 

Office of Comprehensive Health Planning. 1975. Consumer’s Guide to Nursing Homes. Boston, Massachusetts : The Office. 

Nursing Home Abuse Support Team. 2020. Nursing Home Neglect – Learn About the Types of Neglect. Nursing Home Abuse Center.  Nursing Home Abuse Center. http://www.nursinghomeabusecenter.com/nursing-home-neglect/,  accessed October 2020. 

The Future 

Lueders, Beth. Ethical Caregiving and Protecting Elders. Asaging.org. American Society on Aging.  http://www.asaging.org/blog/ethical-caregiving-and, accessed October 2020. 

Mahendra, Nidhi, and Sharon M Arkin. 2004. Exercise and Volunteer Work: Contexts for AD Language and Memory Interventions. Seminars  in Speech and Language 17(2): 151–167. 

Simmons, Gary. 2017. Must-Read Memoirs and Nonfiction on Aging and Elder Care … Thecaregiverspace.org. The  Caregiver Space. https://thecaregiverspace.org/must-read-memoirs-and-nonfiction-on-aging-and elder-care/, accessed October 2020. 

Golant, Stephen M., and Joan Hyde. 2008. The Assisted Living Residence: a Vision for the Future. Baltimore, Maryland: Johns Hopkins  University Press.

Kleinman, Arthur. 2016. The Art of Medicine: Caring for Memories. The Lancet 387(10038): 2596–2597.