Literature Review

A guide to making end-of-life decisions easier for your loved ones The Detroit Jewish News; by Shari Cohen; 7/1/24 It’s not a pleasant prospect, but each of us will eventually die. For family members, the death of a loved one brings sadness and a sense of loss but also a need to deal with practical matters. ... A new guidebook, Two Envelopes: What You Want Your Loved Ones To Know When You Die, by Rusty Rosman offers practical advice to help families with the death of a relative. ... While Rosman’s book is written from a Jewish perspective, as part of her research, she spoke with funeral directors and clergy from many religious and ethnic groups. ... Rabbi Joseph Krakoff, CEO of Jewish Hospice and Chaplaincy Network (JHCN), who wrote a preface for the book, describes it as “a great motivation to help people to think about these things. I encourage everyone to talk about it when they’re healthy,” he adds.

KCAD grad Brianna L. Hernández explores intersection of art, death, and grief through prestigious Hyperallergic curatorial fellowship Ferris State University, Grand Rapids, MI; 6/25/24 As Brianna L. Hernández grieved the loss of her mother, she understood she was not alone in the experience and her thoughts turned to helping others. Her work to share the experience has earned recognition. Hernández, a 2016 graduate of the Kendall College of Art and Design of Ferris State University, was one of five people selected for the prestigious 2024 Emily H. Tremaine Journalism Fellowship for Curators ...  Every year, the fellowship offers five curators $5,000 to support their research while developing their journalistic skills. ... [Experiencing her mother's death] profoundly shifted her work toward a focus on death, and the living who are left behind to cope with loss. “As she was dying and right after she died, I knew I needed to make work about it for my own healing, but I also knew that my situation was not unique,” Hernández said. “I felt like it was of both artistic and social importance to put that out there in a way that hasn't been addressed.”

They sacrificed to care for family and ended up on the street Wisconsin Public Radio; by Kat McGowan; 5/29/24 ... A son or sibling or niece gives up their own apartment or full-time job to look after a relative who needs help. They share expenses, maybe living off of a benefits check. But when that family member passes away or moves to a nursing home, the social security or housing subsidy stops coming. The caregiver is in mourning, out of a job and out of a place to live. “These were folks who had left behind something to go care for mom, and then the bottom falls out,” says Margot Kushel, a homelessness researcher and professor of medicine at University of California, San Francisco. Her team documented this pattern in their intensive surveys and in-depth interviews of older homeless Californians. ... Kushel envisions one brighter possibility. Given the extreme shortage of capable home caregivers, both in California and nationwide, people who have played that role for family could be recruited to do the same job for others, helping to build this essential workforce. “If you’re caregiving for 15 months for your mom, for instance you probably have transferrable skills,” she says.Editor's Note: Pair this with recent articles we posted on 5/30/24, "The real cost of cancer: 49% of patients carry $5K+ in medical debt" and "56 percent willing to dip into retirement savings to be family caregiver: survey."

From caregiving to mourning: Navigating the end of the road as a family caregiver The San Diego Union-Tribune; by Lauren J. Mapp; 5/21/24 ... Losing a loved one is universally challenging, but for family caregivers who dedicated themselves to their care, the loss can be especially complicated. When a loved one dies, family caregivers often find themselves grappling with a whirlwind of emotions, from sorrow and grief to relief and sometimes guilt. This emotional roller coaster is compounded by the physical and emotional toll of providing round-the-clock care. ... A significant aspect of the grieving process for family caregivers is the transition from the role of caregiver to that of mourner. This shift can be jarring for many, as their identity may have been closely tied to their caregiving responsibilities. ... Editor's Note: For 24/7 online education for family caregivers throughout their trajectory of serious illness thorhrough hospice care and their bereavement journey, visit our sponsor Composing Life Out of Loss's Video Libraries. 

Recognizing the physical and emotional toll that caring for a loved one with a chronic condition has on the caregiverMedical Xpress; by American Heart Association; 5/15/24Living with a chronic medical condition after surviving a heart attack or stroke may come with additional health and personal care needs. Often survivors must rely on a family member or close friend to help. However, there's a growing body of scientific research that shows people who serve as unpaid caregivers may not be getting the care they need to live longer, healthier lives, according to the American Heart Association...

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.

Congresswoman Ayanna Pressley and activist Denella Clark join forces to help women giving care to terminally ill loved ones MSN / The Boston Globe; by Adrian Walker; 5/11/24  Ayanna Pressley and Denella James Clark are sisters in a sorority no one wants to join. The congresswoman and the educator-activist are both women who have lost their mothers. Or, more precisely, women who have shared the experience of being principal caregivers to mothers who are terminally ill. ... As they supported each other in the process of grieving, Pressley and Clark thought of the many people — especially the many women — who act as caregivers to their loved ones in the final stages of their lives. So this Mother’s Day Weekend they are launching the Pressley-James Lovin’ Gestures Fund, which will provide financial help to people providing care to terminally ill close relatives. ...

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.