Literature Review

A Review of "Heartwood: The Art of Living with the End in Mind" by Barbara Becker CU Anschutz; by Darcy Campbell, AGNP-D, ACHPN; 5/14/24 This year, one of our [small group] readings was the book, Heartwood; The Art of Living with the End in Mind, by interfaith pastor Barbara Becker. The book is composed of small vignettes from her life that explore death and dying. Many of her experiences as a hospice volunteer are captured as well. Her book was to be about death, but she learned that in writing about death she really explored what it means to live. Heartwood is the inner core of a tree. While dead it does not decay as it is supported by the outer living rings of the tree. Becker, describes Heartwood as the ideal metaphor for our life, “where life and death cannot exist separately from each other.” ... Working in palliative care, we too are forced to look at our own mortality.

Ridgewood author's book explores the mishaps and inspiration in caring for Mom full-time Daily Record; by Marsha A. Stoltz; 5/10/24 How do you cope when the mother and child roles get reversed? In his book, "A Cup of Tea on the Commode," Ridgewood native Mark Porro recounts his 3½ years of caring for his 89-year-old mother, Genevieve, ... Porro was the least likely of Genevieve's six children to assume charge of her care ...  "[A] sense of humor is necessary, no matter how dark," he said. Hence the book's title, a reference to serving his mother a cup of tea "to make Mom's adventures on the commode a tad more pleasant." ...

Major corporate, foundation, and institutional partners join in support of caregiving, the PBS documentary and engagement project from executive producer Bradley CooperWETA; Press Release by Project Partners on National Engagement Initiative include Rosalynn Carter Institute for Caregivers, Milken Institue for the Future of Aging, Grantmakers In Aging, Global Coalition on Aging, and National Alliance for Caregiving; 5/8/24 WETA President and Chief Executive Officer Sharon Percy Rockefeller today announced the shared commitment from a slate of major funders and partners to support the documentary and engagement campaign for the new project Caregiving, currently in production. Bradley Cooper is an executive producer of the two-hour documentary slated to premiere on PBS in Spring 2025. Funders for this ambitious project include Otsuka America Pharmaceutical Inc.; Evelyn Y. Davis Foundation; Ralph C. Wilson; Jr. Foundation, Care.com; and the National Alliance on Mental Illness. Support for the engagement and outreach for Caregiving is made possible by The John A. Hartford Foundation. 

6 lessons I learned from inheriting a parent’s house Bankrate; by Linda Bell; 5/3/24 Inheriting a house is a bittersweet, overwhelming experience. I remember receiving the deed that transferred ownership of my mother’s home to me and my siblings. I felt a whirlwind of emotions: sadness that my mother was gone, relief that the complicated process was over and trepidation for the enormous responsibilities that lay ahead. Along with those feelings was the compelling need to honor her legacy. Here are six lessons I learned from inheriting my mother’s house. ...

Elder abuse is easy to missNextAvenue; by Leida Snow; 5/6/24 Here is what to look for if you suspect a caregiver--whether a relative or a professional--is mistreating a loved one. ... People are living longer in their own homes outside of nursing homes or other institutional settings, which means that at some point each of us is likely to be a caregiver or looking for continuing health care for a loved one or ourselves. ... "My husband was in home hospice for the last months of his life." ... [A bereaved caregiver describes incidents with her husband's care.]  Then I ... went to the other room and called the agency's 24-hour number. 'I want her out of here,' I said. 'Please send someone else as soon as you can.' Lou briefly rallied the next morning, but he died later that day. Did the aide hasten his death? I believe she did."

The spectrum of end-of-life experiences: A tool for advancing death educationOmega; by Shared Crossing Research Initiative; 3/24 Abstract: Studies on end-of-life experiences (ELEs) suggest that caregivers and loved ones of dying patients also have ELEs, though these are rarely explored. This article introduces the Spectrum of End-of-Life Experiences (SELE) as a descriptive list of types of ELEs reported by all members of the care unit, including dying patients, their caregivers, and their loved ones. We applied SELE towards identifying ELEs reported by 143 caregivers and loved ones and successfully identified every experience. Interviews revealed that participants viewed their ELEs as profound communicative events, yet a substantial minority also reported struggling to name and process these experiences. We propose that SELE be included in death education to raise awareness about ELEs that can occur within the care unit, and we suggest that SELE has additional applications, including use as a prognostic aid in end-of-life care and as a therapeutic aid for bereavement support.

Millions of American kids are caregivers Now: ‘The hardest part is that I’m only 17’The Wall Street Journal; by Clare Ansberry; 4/27/24An estimated 5.4 million children help care for relatives, as families can't afford or find other in-home care. ... Leo Remis gos to high school, plays videogames, and helps take care of his disabled mom. ... More than 70% of young caregivers are caring for a parent or grandparent, according to a caregiving report. Many miss school, feel more isolated and worry about the future. Juggling homework with cooking and giving injections can be overwhelming and lead to anxiety.Editor's Note: Access to this article might require a subscription. Click here for alternate access.

The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden The Oncologist, by Laura A Siminoff, Maureen Wilson-Genderson, Marcin Chwistek, Maria Thomson; 4/23/24 Conclusions: Cancer caregiving is dynamic; [caregivers] CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

Operator hopes to expand residents’ digital literacy with unique tech concierge program McKnights Senior Living, by John O'Connor; 4/22/24Beginning in June, residents in some BHI Senior Living communities will be able to take advantage of a unique tech concierge program. For residents, the new service will feature on-demand tech support, alongside virtual assistance, in-home appointments and a curriculum of tailored enrichment classes and training sessions. For the operator, the program will deliver immediate tech support while also gathering and analyzing data that can be used to inform future technology investments and strategic moves.Editor's Note: How might you adapt this creative service for the persons you serve? What differences might it make in patient care? In hospice caregiver/family satisfaction? What tech support do you have for your staff, especially when they are making home or other in-the-field visits? Relating this to today's articles on the importance of "trust" and "nurses' negativity about AI," do your innovative technologies improve or impede the patient/family's needs and experiences with you?

NHPCO's CaringInfo program launches new consumer blog, insights NHPCO Press Release; 4/15/24 CaringInfo, a program of the National Hospice and Palliative Care Organization (NHPCO), has launched a new consumer blog, Insights, offering timely and practical content on serious-illness care and services from a variety of perspectives in both English and Spanish. ... CaringInfo also offers more information about advance directives and free advance directives and instructions for all 50 states plus Puerto Rico and Washington DC in both English and Spanish, downloadable as PDF files.

'I just want to take everybody fishing': Dose of the Coast provides a much needed respite Nola.com - Louisiana Inspired, by Jack Barlow; 4/9/24 Dealing with a serious illness is all consuming. One nonprofit strives to give people suffering life-altering illnesses a much-needed break. Baton Rouge-based Dose of the Coast takes people dealing with cancer and other similar illnesses out for a day on the water. ... The genesis of the organization began in 2014, with a fishing trip for Ashley Ferguson's father, Donald Walker. ... 

Family caregivers can help shape the outcomes for their loved ones – an ICU nurse explains their vital role The Conversation, by Beth Daley; 4/9/24 The floor nurse had just told me that my new patient – let’s call her Marie – would not stop screaming. ... No matter how much I comforted her, ... she was screaming for her daughter, April, who was on her way. ... As a seasoned bedside critical care nurse, I see firsthand the benefits that family caregivers bring to patient care in the hospital. I also witness the emotional stress that caregivers experience when their loved one comes to the ICU.