Literature Review

For young adults, caregiving isn't just hard. It can shape you for life. National Public Radio - CAI - Local NPR for the Cape, Coast & Islands; by Kat McGown; 12/23/24 ... There are days when Jordyn Glick, 27, can't eat or drink at all. She gets so tired and weak she can barely stand up. She has gastroparesis, where food stalls out in her stomach and doesn't get digested. It comes with unpredictable bouts of nausea, periods of agony in her guts, and malnutrition. ... Dakota Heath, her 26-year-old boyfriend of four years, is her watchman, "always picking up on the small things," he says. He's on alert for her next flareup, the kind that can leave her bedridden for a week. ... Young caregivers have always been there, doing all the same things that adults do — ... About one-quarter of all family caregivers are between 18 and 36, according to the National Alliance for Caregiving. One survey suggests that almost half of them are men. They're more likely to be Latino or Black; a survey in 2018 found that only 17% were white. They've just been invisible. "They fall into every potential crack that exists," says Melinda Kavanaugh, a professor of social work at the University of Wisconsin Milwaukee who is one of the few researchers who study this population. In terms of resources, "Nothing is targeted for a 22-year-old. Nothing."

The Denver Hospice delivers holiday meals to 347 Coloradans; initiative ensured Coloradans facing hardship can celebrate with a holiday meal GlobeNewswire, Denver, CO; by The Denver Hospice; 12/20/24 The Denver Hospice, in collaboration with dedicated staff, provided 76 meals to patients and their families facing hardship during the holiday season. Over 347 people will enjoy a festive dinner as a result of the nonprofit’s healthcare organization’s holiday initiative. “At this time of the year, it can be especially hard for people to admit that they need help,” stated Susan Finke, director of clinical services at The Denver Hospice. “I want to thank everyone who helped deliver dinners today as we are caring for more people than just our patients. Hundreds will now have the opportunity to gather next week and enjoy being with their loved ones.” ... This is an annual event held by The Denver Hospice in support of their hospice and palliative care patients. Working in tandem with social workers, clinical and administrative staff, the nonprofit identifies and supports vulnerable patients across the Denver metropolitan area. The holiday season can be an especially difficult time of year for those facing life-limiting illnesses. 

Mom, 26, dies days after choosing to enter hospice following 13 years of living with kidney failure (exclusive) People; by Zoey Lyttle; 12/18/24 Though she left behind a 4-year-old daughter, Sara Long told PEOPLE her feelings about death were "more certain" than they'd ever been when she started end-of-life care. “I think a lot of people spend a lot of time thinking about what it means to have a good life. And don't get me wrong, I did that too,” Sara Long, 26, told PEOPLE over the phone just shy of a week before she died at the hospice facility into which she had just recently moved. ... Long said she’s spent “the last two or three years” deliberating about her idea of a “good death.” She decided that it wasn’t just about how she would experience these last expected few weeks of her life in hospice. What Long really wanted was to be surrounded by her most precious loved ones — including her husband Justin, 32, and their 4-year-old daughter Riley Jean — but she didn't want them to watch her die while intubated and attached to hospital equipment as she was half of her life. “I just feel like if I pushed it any harder, then I was going to get to a place where it was going to be outside of my control,” said the mom of one. “I was going to wind up dying in a hospital alone, afraid, full of tubes, scared. My daughter wouldn't be able to be part of the process, and it would just be really lonely, and that's really not the goal.” Detached from the familiar yet foreign medical equipment, Long told PEOPLE she was freed from fear knowing she would only survive another couple of weeks in hospice. (She died with a week less than anticipated.) Editor's note: This another follow-up post to this profound young woman's story that we post on 

[United Kingdom]  'My son died at 24 - now I'm doing his bucket list' BBC News; by Adam Eley and Alison Holt; 12/16/24 Alex Spencer's son Declan - who had Duchenne muscular dystrophy - died last year at the age of 24, and she admits she has still not gone a day without crying. "I think society has a misconception that a carer gets their life back [when a loved one dies]," she said. Declan had drawn up a bucket list but died before he could finish it. Now Alex, who wants to raise awareness of the difficulties disabled people face in getting the right care, is taking up the challenge - including visiting Paris, getting a tattoo Declan designed and taking his adapted van around a famous German race track.

Mom in hospice opens up after video of her dancing with son at wedding goes viral ABC News - GMA; by Yi-Jin Yu; 12/16/24A New York mom is opening up after a video of her dancing with her son at his wedding went viral. In the clip shared on TikTok, which has already picked up over half a million views since it was posted on Nov. 3, Olivia Armao hugs her son Sal Armao as they share a dance on his wedding day. But as the text overlaid on the video explains, what viewers see isn't your typical mother-son wedding dance. The difference is that Olivia Armao is in hospice care. She told "Good Morning America" she was diagnosed with breast cancer for a second time in 2021. Olivia Armao said the special memory with her 30-year-old son was "really sweet" and one she can't put into words. "I was just happy that I was there and I was able to wait to dance with him. ..." the 62-year-old mom of four told "GMA."

Supporting grieving kids during the holiday season: Susan Hamme Cleveland.com, Cleveland, OH; Guest columnist Susan Hamme, director of grief services for Hospice of the Western Reserve ... Childhood grief is tricky no matter the time of year, but the holidays can be a time of especially heightened emotion. The sights and sounds of the season can be triggers for children and adults alike. Combine that with an awareness that things will be very different without your special person, and you have the perfect recipe for emotional meltdowns and miscommunication all around. While it may be impossible to avoid this altogether, there are things you can do to lessen the stress and build in moments of peace and celebration.

Families value flexibility and compassion in end-of-life care for children with cancer Hematology Advisor; by Megan Garlapow, PhD; 12/12/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.

Watch: ‘Going It Alone’ — A conversation about growing old in AmericaKFF Health News; by Judith Graham; 12/11/24 KFF Health News’ “Navigating Aging” columnist, Judith Graham, spent six months this year talking to older adults who live alone by choice or by circumstance — most commonly, a spouse’s death. They shared their hopes and fears, challenges, and strategies for aging solo. Graham moderated a live event on Dec. 11, hosted by KFF Health News and The John A. Hartford Foundation. She invited five seniors ranging in age from 71 to 102 and from across the country — from Seattle; Chicago; Asheville, North Carolina; New York City; and rural Maine — to talk candidly about the ways they are thriving at this stage of life.

[Wales] Man fulfils dying wish accompanying daughter down aisle BBC Wales News, Wales, United Kingdom; by Jenny Rees; 12/10/24 A terminally ill man was able to fulfil his dying wish to accompany his daughter down the aisle just six days before he died. Wayne Wharton, a 61-year-old father-of-six had terminal cancer but was taken from hospital in Carmarthen to the wedding, 30 miles (48km) away in Haverfordwest, Pembrokeshire. He was accompanied by volunteer paramedics, who stayed by his side the whole day, even sitting to eat with guests, before returning Mr. Wharton to hospital. ... "The paramedic pushed dad down the aisle and I held his hand," said bride Jess Lewis, who married her partner Matthew ... "Obviously people cry at weddings because of the emotion, but every single member of the family was there and for a lot of them it was their last time to see him. It was a wedding but also a goodbye."

What adult children should know when discussing their parents’ end-of-life care StudyFinds; by StudyFindsStaff, reviewed by Christ Melore; 12/8/24 Talking about death can be difficult for anyone at any time. For adult children who need to know their parents’ final wishes, it can be excruciating. A new survey is revealing the stark disconnect between our beliefs and actions when it comes to end-of-life planning. While an overwhelming 90% of adults recognize the importance of these critical conversations, half have yet to take the first step with their closest loved ones. ... The numbers tell a revealing story. Twenty-six percent of respondents simply keep putting off the conversation, while 23% admit they don’t know how to approach the topic. Sixteen percent are outright scared to broach the subject, creating a wall of silence around a universal human experience. ... When people do open up, the conversations prove surprisingly rich and multifaceted.

How to support loved ones experiencing cognitive decline while securing their financial well-being Nasdaq, Peronsal Finance; by Deanna Ritchie; 12/6/24 Supporting a loved one with cognitive decline can be one of life’s most challenging challenges. Those with cognitive impairments, such as dementia or Alzheimer’s, often need to be emotionally resilient and make practical adjustments. However, proactive financial planning to secure their well-being is frequently overlooked. The reason? The Wall Street Journal reported that those with undiagnosed memory loss are prone to significant financial declines. Researchers at the University of Michigan found that people without knowledge of their memory problems lost an average of $31,000 in net worth, while people with knowledge lost $5,400. Keeping this in mind, here’s a guide for providing compassionate care while protecting their savings and financial stability. [Click on the title's link for more.]

Holiday joy for children in hospice: Inside the North Pole ‘Fantasy Flight' at Dulles NBC Washington News4; by Joseph Olmo; 12/7/24 Early on Saturday morning, the crowd of almost 100 kids was buzzing with excitement as they waited to board their "North Pole"-bound flight out of Dulles International Airport. Some of the kids wore masks. Others were in wheelchairs, walked with crutches, or had lost their hair. Many are patients with Alexandria nonprofit Children's Hospice International (CHI) -- and all, though they may not know it, were celebrating what could be their last holiday with their families. It's a sobering fact that seems at odds with the joy and enthusiasm aboard the Boeing 777 airplane. But as United Airlines said in the press release, that's exactly the point of the flight. "Come join us as we fly some magic into the lives of children who need it most this holiday season," United said. And magic was provided. Flight attendants and pilots took their job very seriously as they guided passengers to their seats for the flight to NTP: North Pole International, of course. "Did we already write our letters to Santa?" asked one flight attendant, as she walked a family through the tinsel-decorated tunnel to the plane. "Yes," a tiny voice replied. The flight, begun at Dulles 34 years ago in 1990, is an annual event for children battling life-threatening illnesses, and their families. [Click on the title's link to continue reading this story.]

'I've already had my miracle': 26-year-old Savannah mom enters hospice care with only weeks to live ABC WJCL 22 News, Savannah, GA; by Savannah Younger; 12/4/24 As the holiday season begins, Sara Long, a 26-year-old Savannah woman, is entering hospice care after a prolonged battle with kidney failure. Now the wife and mother is preparing to say her final goodbyes to family and friends. "I wanted to make sure that everything's kind of ready to go for when family visits and all that kind of stuff," Long said. "So, I just want to make things as easy as possible for everybody." Long has been told she has two to three weeks left to live and is now preparing her family for her passing. ... Their daughter, Riley, 4, is too young to understand what is happening, but Long is creating a hope chest so Riley can always remember her. "There are probably dozens, if not hundreds, of letters at this point, to open at different various points in her life. So, like her first day of school all through, or a graduate degree, potentially," Long said. "I feel like I've already had my miracle," Sara said. "I feel like Riley is my miracle. ..."Editor's note: See our "Today's Encouragement" for today, with a beautiful quote from Sara Long, in this article.