Literature Review

4 things nobody tells you about watching a loved one die of cancer The New York Post; by Jessica Ariel Wendroff; 3/23/24 ... “The surgery was successful. However, tests after the operation found cancer had been present,” the Princess of Wales, 42, revealed in a bombshell videotaped statement Friday. ... While the royal insisted she is “well and getting stronger every day,” other patients’ real pain begins when the cancer has spread too far and chemotherapy and radiation no longer work, so doctors stop treatment. As the daughter of a Stage 4 bladder cancer patient, I’ve empirically learned four realities that people usually don’t talk about ...

My Mother is in Hospice Care Reformed Journal, by Doug Browser; 3/25/24 My 96-year-old mother entered hospice care a few months ago. For a while, it seemed as though she would go on forever, even though we knew that was unlikely. ... [Here’s] the thing, maybe the most striking thing I’ve learned while sitting with my mom over these last few months. Loss of memory can sometimes be a gift. ... I realize that there can be a kind of grace in not remembering a few things. ... We don’t have to go back and revisit any of it. We have this time together. ... And together we are a mom and a son, present in the moment, a moment with a surprising amount of grace. I never expected to get there.

Report: Alzheimer's and dementia caregivers total 840K in Florida, bear heavy burden NPR WMFE, by Joe Byrnes; 3/22/24The number of Floridians serving as caregivers for people with Alzheimer's and other dementias is an estimated 840,000, an increase of 13,000 in just one year, according to an annual report from the Alzheimer's Association. Caregiving takes a toll on families hit by the degenerative brain disease, but a new program from the Centers for Medicare and Medicaid Services could lessen that burden. ... [This] promising resource in the works is the Guiding an Improved Dementia Experience Model, an approach that includes the patient and caregiver. The GUIDE Model -- through the Centers for Medicare & Medicaid Services -- starts in July. 

Poem: I knew you had been sick for quite a while. I had no idea you were walking your last mile.The Andalusia Star News, by Vickie C. Wacaster, "a patient and hospice advocate for Aveanna Hospice"; 3/14/24. This poem is at the end of an article, "COLUMN: Hospice helps make most of all moments."I knew you had been sick for quite a while. I had no idea you were walking your last mile. Had I known your time was so near, Despite my fear, I would have talked more, touched more, and loved more. I asked about your care, your prognosis, your life, Why couldn’t they tell me? I was your wife. Or was I in denial? Did someone try to tell me? Did I refuse to hear? Could I not see? Did I refuse to accept? Your diagnosis and prognosis, did I reject? Was it because of unbelief? That death snatched you as a thief.We could have made the most of the time you had left, If only we had not been afraid of what we felt.

Why home care leaders are now banking on ‘Caregiver-First’ cultures Home Health Care News, by Patrick Filbin; 3/4/24 Over the last several years, a notable trend is emerging in home care: Top-tier companies are shifting their focus from prioritizing customers to prioritizing caregivers. This strategic move reflects a growing recognition of the critical role caregivers play, and aims to address persistent caregiver shortages.

How to help elderly parents from a distance: Tech can ease logistical, emotional burden USA Today, by Marc Ramirez; 2/28/24 As a neuropsychologist trained in developing technology for cognitively impaired older adults, Alyssa Weakley’s research at the University of California, Davis, made her acutely aware of the challenges of long-distance caregiving. ... Soon, she and her family found themselves in a position shared by nearly 6 million other Americans, acting as caregivers from a complicated and often distressing distance. According to a 2020 AARP report, long-distance caregivers represent more than 1 in 10 of the country’s estimated 53 million family caregivers, meaning they live an hour or more from their care recipient; on average, they live about 450 miles away. Editor's Note: What systems do you have in place to communicate with and support family members who live long-distance, who never have the opportunity to meet with any hospice team members in person? 

Proposed legislation would create tax credits for family caregiversHospice News, by Jim Parker; 2/23/24A bill to strengthen support for family caregivers is working its way through Congress. If enacted, it would create tax credits to help offset the financial burdens of caring for the seriously ill. ... The nation’s health care system is lacking in support for caregivers of the terminally ill, who are often left with a heavy financial and logistical burden. Without assistance or relief, these difficulties can impede access to hospice and other types of home-based care.

Woman tried to kill 88-year-old father in hospice by choking himDeerfield Beach, FL Local News 10; 2/21/23 A Deerfield Beach woman is facing three felony charges, including attempted murder, after deputies said she tried to choke her 88-year-old father to death while he was under hospice care. 

Hospice vs. Palliative Care in Tucson: Which One Is Right for You and Your Loved Ones?AzFoothills.com, 2/20/24  ... Choosing between hospice and palliative care can seem overwhelming, especially when you're trying to make the best decision for someone you love. There are some distinctions between these two types of care. Here, we discuss some of those differences to guide you in choosing the proper care for a loved one. 

Most Pa. workers can’t take paid leave to care for sick loved ones. State law could change thatWESA Pittsburgh's NPR News Station, by Kristen Mosbrucker-Garza; 2/18/24About 66% of workers statewide don’t have paid family and medical leave benefits, according to a U.S. Census compensation survey from March 2022. And the brunt of that unpaid work often falls on any women in the household, said Meghan Pierce, CEO of the Executive Forum of Women in Philadelphia. ... The Executive Forum of Women, created in the late 1970s, is one organization in the coalition of nonprofits and businesses pushing to get paid family medical leave as a state law in Pennsylvania. 

What is a good death? End-of-life doulas can help the dying have one.Boston Globe, by Sherrie Dulworth; 2/9/24... Home hospice agencies offer vital services for terminally ill people who wish to die at home, assisting with, among other things, pain management and helping the terminally ill avoid needless medical procedures. ... But while it is often thought that home hospice workers are the primary caregivers for the dying, this is not so. Instead, it is loved ones who often do the heavy lifting, both physically and emotionally, that comes with tending to the dying. ... This is where a death doula comes in, and the work they do speaks to the nonmedical, more spiritual side of what it means to have a good death.

How do you live while your brother is dying? ‘Suncoast’ is a teen take on hospiceWisconsin Public Radio, by Mandalit Del Barco; 2/9/24A new film streaming on Hulu considers a subject that’s sometimes in the news, but not often in entertainment: hospice end-of-life care. Suncoast is writer-director Laura Chinn’s fictional account of her life in the early 2000s as a Florida teen with a severely ill older brother. ... Chinn helped her mother care for him for years, and at the end of his life, they moved him into a hospice center. It turned out to be the same place that a woman named Terri Schiavo was on life support for 15 years.

The Last Portrait: Local photo exhibition captures different takes on dyingUtica Observer Dispatch, by Amy Neff Roth; 2/9/24... The 26 black-and-white photos, taken by local photographer Mark DiOrio, all capture moments in the life of someone who has been diagnosed with a terminal illness.  “I wanted to photograph them because they’ve been given news that nobody wants to hear,” DiOrio explained. “They’ve been given the news that it’s going to be their time soon. And when you’re given that kind of news, you have choices to make on how you handle it. I felt that these people, what they had to say and the emotions that they communicated in that moment were invaluable.”