Literature Review

80-year-old 'Mom' cares for homeless men in Philadelphia ABC News 7, New York, NY; by Matteo Iadonisi; 10/30/24 Cecelia Robinson has earned the nickname 'Mom' during her two decades of showing motherly love to homeless residents at St. John's Hospice. Her work in environmental services and housekeeping ranges from taking out the trash to developing relationships with clients and making sure their needs are met. Specifically, she works in the Good Shepherd residence at St. John's Hospice, which cares for men who are considered medically fragile. Robinson has helped men like Craig Freeman, who utilized the Good Shepherd for transitional housing and has since moved into his own apartment. Watch the video [here] to see Robinson's story in action.Editor's note: Do you need inspiration? Click here to view this beautiful story about Cecelia Robinson's care for homeless residents at St. John's Hospice.

Divorce rates among older adults have almost tripled since 1990McKnight's Senior Living; by Lois A. Bowers; 10/23/24New research finds an almost threefold increase in the percentage of divorced older adults compared with three decades ago. And an increasing number of older adults never have married. The investigators at the National Center for Family and Marriage Research at the Bowling Green, OH, educational institution found that the divorce rate among people aged 65 or more years increased from 5.2% in 1990 to 15.2% in 2022. Or, put another way, one in every 10 people divorcing in the United States today is aged 65 or more years. Although reasons for the increase in divorce were beyond the scope of the study, Brown theorized that contributing factors could include increased life expectancy and the fragility of remarriages.Publisher's note: Interesting implications for hospice care and caregivers.

Palm Harbor family suffers flood after Milton, less than month after mother dies from breast cancer ABC WFTS Tampa Bay, FL; by Jessica De Leon; 10/26/24 One Palm Harbor family is gutting the first floor of their home, destroyed by flood waters after Hurricane Milton. Cali Gignac’s childhood home is not in a flood zone or near any large bodies of water, yet more than two feet of water entered her parents' townhome and destroyed everything just a month after her mother died. “We haven’t had a chance to sort her mementos. We haven’t had a chance to grieve her or anything. And now it’s like... everything is garbage.” Now, they are trying to save what they can, sometimes stopping to take a snapshot of notes or photos that they find. But as tears come, they quickly move on, knowing they have so much to do.“Our photo albums are just, like, melting.”Editor's note: Click here for a public service educational video, "Community Crisis and Grief," with a significant section devoted to coping with "normal" bereavement in the midst of a community crisis. Disclosure, provided by Composing Life Out of Loss, a sponsor of this newsletter.

Job lock and parents of children with cystic fibrosis JAMA Network; by Lenore S. Azaroff, MD, ScD; Steffie Woolhandler, MD, MPH; Danny McCormick, MD, MPH; David U. Himmelstein, MD2; David Bor, MD; Samuel Dickman, MD; Adam Gaffney, MD, MPH; 10/28/24 US health care coverage is typically tied to employment, sometimes causing job lock, which deters people from changing employment because they need to maintain coverage. Few studies have assessed job lock due to children’s need for health care. Children with cystic fibrosis (CF) have substantial care needs, including costly medications, tests, and quarterly visits with interprofessional teams. Mortality from CF is higher in the US than Canada, where medical care is typically free, suggesting that financial protection may affect outcomes. We assessed whether parental job lock and other financial and employment factors are associated with access to care for children with CF.

Farmer in hospice takes one last trip to the farm Sanford Health; by Mick Garry; 10/23/24 Marvin Miller grew up on a farm near Parker, South Dakota, and then farmed the land himself after his mother and father retired. ... He is being cared for at Sanford Health’s Ava’s House, an acute-level, inpatient hospice facility in Sioux Falls, that provides 24-hour nursing care to patients. When Marvin was asked if he had anything he wanted to see or to do before his health would not permit it, he admitted ... that he would like to see the farm and crops and get another chance to take a tour of Parker, a town of about 1,200, a half-hour southwest of Sioux Falls. ... The staff at Ava’s House quickly began finding a way to make it happen. With financial assistance from the Sanford Health Foundation, they were able to rent a wheelchair van that the Millers could use to make the trip. ... The Millers are grateful the Ava’s House staff made the effort to help Marvin at a difficult time. Just as farming goes outside the scope of a normal job, so does caring for people at Ava’s House. “We’re very appreciative of the staff at Ava’s House,” Paula said. “They’re wonderful people. They set it up and organized the whole trip for us. We got to share a day at the farm with our kids.”

Research synthesis related to oncology family caregiver spirituality in palliative care Journal of Palliative Medicine; by Betty R. Ferrell, Tami Borneman, Marianna Koczywas, and Paul Galchutt;  10/21/24 online ahead of print Family caregivers are central to the delivery of serious illness care and also have needs related to their role and experience. One aspect of the family caregiver quality of life (QOL) that has received less attention is caregiver spirituality. The research objectives for this analysis were (1) Describe spirituality in oncology family caregivers. (2) Determine the impact of palliative care interventions on spirituality and related variables in oncology family caregivers. (3) Describe findings from the research literature related to spirituality in family caregivers. The authors include two nurse researchers (BF, TB) and a physician (MK) who conducted these studies and a board-certified chaplain (PG) who contributed his expertise in chaplaincy.  ... The authors' research synthesis and the literature support the importance of additional research and clinical focus in family caregiver spirituality in serious illness care. 

Family and friends deliver early Christmas cheer to woman in final days of her life  CBS News, Antioch, IL; by Dana Kozlov and Tracy O'Brien; 10/16/24 Driving by a home in the far northwest suburbs, you might wonder what happened to Halloween, as each day more Christmas decorations keep showing up. The answer is a touching tribute to a loving mom, wife and friend; with a special message for everyone. Voices of holiday cheer rang outside a home on a warm fall day in Antioch during a festive gathering for Jamie Haley, a woman loved by many, watching from the front window. "It couldn't be better. I could not be happier," Jamie said. Hearing those words, you wouldn't realize Haley is in the final stages of her life, with hospice coming daily. Known for her lifelong love of Christmas, her family is bringing the joy of the season to her in a big way. "Everybody is showing up and strangers are showing up," said her daughter, Anna. "It's Christmas for as long as it can be. We just love her so much.  … We are going to love her until we have to miss her." ... [Click on the title's link to continue reading this beautiful story.]

Millions of aging Americans are facing dementia by themselves California Healthline; by Judith Graham; 10/15/24 Sociologist Elena Portacolone was taken aback. Many of the older adults in San Francisco she visited at home for a research project were confused when she came to the door. They’d forgotten the appointment or couldn’t remember speaking to her. It seemed clear they had some type of cognitive impairment. Yet they were living alone. Portacolone, an associate professor at the University of California-San Francisco, wondered how common this was. Had anyone examined this group? How were they managing? ... Portacolone got to work and now leads the Living Alone With Cognitive Impairment Project at UCSF. The project estimates that that at least 4.3 million people 55 or older who have cognitive impairment or dementia live alone in the United States. ... Imagine what this means. ...

Breaks for caregivers: Atlanta nonprofit helps parents of medically fragile children GPB PBS - NPR, Atlanta, GA; by Ambria Burton; 10/14/24 ... The Georgia Division of Family & Children Services (DFCS) defines medically fragile children as children with "medical status that can rapidly deteriorate, resulting in permanent injury or death; one that requires medical care and/or technology to maintain health; and/or a condition that requires extraordinary supervision and observation." The Georgia-based Fragile Kids Foundation reports that there are about 13,000 medically fragile children in Georgia, and the Georgia Pediatric Program (GAPP) requires a waiver to provide services to medically fragile children with multiple system diagnoses, including nursing and personal care support services at homes and communities. The National Center for Pediatric Palliative Care Homes (NCPPCH) aims to provide a pediatric respite home in every state, and Life House Atlanta is a nonprofit public charity aiming to open the first pediatric palliative care home in Atlanta — the first in the Southeast overall.

Ellen McGirt on supporting caregivers at work Great Place to Work; by Roula Amire with Ellen McGirt; 10/8/24 This episode of Better features journalist, speaker, and podcast host Ellen McGirt. In this deeply personal conversation, we dive into the challenges of caregiving while balancing a career.  ...On how managers can better support caregivers at work: Flexible time off, no questions asked. A flexible schedule can change everything for people. ...On the impact a senior leader can have by talking about caregiving and grief: If a very senior person triggers this conversation in the workplace with a disclosure or concern, you're going to see new training, new conversations, new talking points, and new volunteers, and maybe even new staff positions around this. ...On how colleagues can support coworkers who are caretakers, or members of the sandwich generation: Kindness and compassion go a long way. ...

There’s still joy in end-of-life care The Seattle Medium, Seattle, WA; by Anissa Durham; 10/3/24 Caregiving is an act of love and sacrifice. But for young Black women, it’s often summed up as just being “a good daughter.” More than 100 million Americans provide care to a child, parent, or relative. And about half provide care to a spouse, elderly parent or relative, or special needs child, according to a report by Guardian. But for Black folks, the burden of doing so is often heavier. Due to disparities in education, housing, and nutrition, and less access to health insurance, — along with the “weathering” that accompanies racism-related stress — Black Americans experience higher risk and rates of chronic disease. Which means, Black folks may get sick sooner than their counterparts and make younger generations, often women, more likely to become caregivers. In a 2021 report, Black family caregivers represent 14% of the estimated 48 million unpaid family caregivers in the U.S., with Black women making up a little more than half of this group, according to the American Society on Aging. Overall, women are two times more likely than men to say they’ve left the workforce to keep up with caregiving responsibilities. And nearly 50% of caregivers are either Millennials or Gen Z, according to the Guardian report. 

I asked my dad to write my wedding speech after he was given 6 months to live. I'm holding on to it for my special day. AOL.com - Insider; by Lara Rodwell; 9/29/24 ... I remember the moment my dad told me he had six months to live like it was yesterday. ... "Lar, we need to have a chat," he said, hovering beside the edge of the bed. "I've received some news. It's not good." ... Wrapped in the comforting arms of my dad, I blurted, "Dad, you're not going to walk me down the aisle one day." ... During one sleepless night, it hit me. I wanted to create a keepsake where my dad and I could write letters, share memories and process our feelings, together. I found a tatty old notebook and wrote my first letter to him. ... The very first thing I asked him at the end of the letter, ink smudged with tears, was if he could write his wedding speech for me. ... It was a hot summer's morning, the day my dad died in the care of our local hospice. He'd been there for three weeks — in a lot of pain, stabilized by a lot of morphine — surrounded by his family. .... Later that day, ... amongst pages of financial practicalities and funeral wishes, there was a folder of white envelopes addressed to each of us - his wife and four children. On the front of mine read "Lar...". On the back: "Your wedding speech." To this day, the envelope remains sealed, tucked away at the bottom of my "dad box" — along with the notebook we shared, photo albums of memories, and a collection of swimming medals he wanted me to show his grandkids one day. ...

The evolving landscape of Amyotrophic Lateral Sclerosis: A fatal disease!  Delveinsight; 9/24/24 Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disease characterized by the progressive degeneration of motor neurons, leading to muscle weakness, paralysis, and ultimately, death. ... Despite ALS being relatively rare, affecting 2-5 per 100,000 people worldwide, the question Is ALS on the rise? is gaining attention. While global prevalence has not significantly increased, improved diagnostic techniques, earlier detection, and greater awareness have led to a more accurate identification of ALS cases. Many researchers believe that enhanced surveillance and better tools for genetic testing are uncovering more cases than previously recognized, rather than a true rise in the disease’s incidence. However, with an aging global population, the burden of ALS may grow, as age is a major risk factor. Editor's note: Do you provide disease-specific training for your staff? ALS patients' and families' needs are unique. A significant disease comparison is between ALZ (Alzheimer's) and ALS. With ALZ (Alzheimer's), the brain decreases its abilities to function while the body can remain strong; the person is mobile with cognitive limitations. In contrast, with ALS, the body decreases its abilities to function while the brain/mind/emotions can remain strong. The person is immobile with cognitive awareness, but extreme physical limitations in communicating one's thoughts, emotions, and needs. ALS-specific communication tools provide crucial help for all. For more information in your location, visit The ALS Association's USA map.