Literature Review

For 27 years, I had minimal contact with my abusive mother. Then she moved in with me. HuffPost; by Carole Brodsky; 1/20/25 ... Living with my mom was the last thing I ever thought I’d be doing as an adult. Perhaps I accepted her back into my life because there were no other options available. Perhaps it was because I was the daughter of someone who in today’s vernacular would be called a “tiger mom,” and I’d been taught caring for an aging parent was what “good daughters” did.  ... As a child, my mother was abusive.  ... [Now, as] Mom’s verbal skills declined, we had to use our eyes, guts and hearts to discern the needs of a person whose tether to this world was fraying before our eyes. ... My partner has a saying: I always forgive, but I never forget. I have unequivocally forgiven my mother for everything. I have tried, with varying degrees of success, to let the vestiges of her abuse die with her and not invade the lives of my children, grandchildren and now, great-grandchildren. The work on forgiving myself will continue for the rest of my life.

‘Those who have made death their life’ Part 2: Family The Daily Yonder - Keep It Rural; by Hannah Clark; 1/16/25 Hannah Clark spent six months riding along with the nurses and certified nursing assistants (CNAs) of Hearth Hospice who provide in-home care to those living in Northwest Georgia and Southeast Tennessee. These hospice workers often drive up to a hundred miles a day to visit a handful of patients scattered across the Appalachian landscape in both rural towns and urban centers. What will follow this introductory essay is her photo reportage in three parts, documenting what she has witnessed accompanying these caregivers. The intimate portraits and vignettes show tender moments at different stages towards the end of one’s life. Their beauty lies in the companionship Clark captured in moments of need and vulnerability. Editor's note: Click here for Part 1, which we posted 1/16/25. 

Knoxville nurses bring wedding to UT Medical Center for bride’s dying mother WATE Knoxville, TN; by Molly O'Brien; 1/15/25 Nurses on the Progressive Care Unit at UT Medical Center planned a wedding for one of their patient’s daughter. Samantha Barry and her now husband, Phillip Bastelica, were supposed to get married in a few months. Barry, like most daughters, always planned on her mother being at her wedding day. Her mother, Lynn, is battling a terminal illness and was recently released from the Progressive Care Unit to hospice. ... It seemed unlikely that Lynn would be able to attend the wedding planned for August, so Barry and Bastelica decided to move the day up. ... The nurses who cared for Lynn jumped into action to plan a wedding for Barry.

Guidelines for evaluating, diagnosing, and disclosing dementia published by Alzheimer’s Association Practical Neurology; 1/14/25 The Diagnostic Evaluation, Testing, Counseling, and Disclosure Clinical Practice Guideline (DETeCD-ADRD CPG) Workgroup, convened and funded by the Alzheimer’s Association, has developed new recommendations for clinicians to use when evaluating patients with possible Alzheimer disease (AD) or AD and related dementias (ADRD). An executive summary of the recommendations for use in primary care and other practice settings was published in Alzheimer’s & Dementia, along with a companion article summarizing specific guidance for specialists. The Workgroup included representatives from  primary, specialty, subspecialty, long-term, and palliative care disciplines as well as the fields of health economics and bioethics.  Editor's note: Click for open access to the Alzheimer's Association clinical practice guideline ..., executive summary of recommendations for primary care. 

Caregiver confessions: ‘How much more can we take?’ New York Magazine - The Cut - Family; as told to Paula Aceves and David mack; 1/13/25 Eleven people who care for aging and sick relatives share their fears, resentments, and guilt. “Where did those ten years ago?”: the daughter struggling to make ends meet while caring for her mother with Alzheimer’s. I never left home, like a good Cuban. My dad died when I was 9, and my mom never remarried, so I always felt a responsibility for her as her only child, especially since I’m not married and don’t have children of my own. [Click on the title's link to read this and other caregiver stories.]

Daughter arrested for neglect after elderly mother found stuck to mattress The Augusta Press; by Greg Rickabaugh; 1/6/25 An elderly woman from Augusta was found in a state of severe neglect last week, prompting her daughter’s arrest. The 82-year-old was discovered incoherent and physically stuck to her mattress during a medical emergency on Dec. 30 at the home they shared on Rollingwood Drive, authorities said. When paramedics arrived at the family’s home, they found the woman non-responsive, with her skin literally adhered to the mattress due to untreated bedsores. She was rushed to Wellstar MCG Health, where she was stabilized. Authorities later arrested 54-year-old Tyrossale Peak, the woman’s daughter, charging her with neglect of a disabled or elderly adult. ... Investigators revealed that Peak had discontinued hospice care for her mother in June but failed to provide adequate care or maintain a safe living environment. 

Hospice workers share the foods that bring patients comfort till the end: Plus, they reveal how families can support their loved ones with scents, small bites and shared memories HuffPost; by Julie Kendrick; 12/30/24... We all live, we all die and we all enjoy food along the way. The memory and meaning of food, along with the bliss of being able to savor a cherished flavor, are still present in our lives, even as we head toward a last meal, a soothing sip of water or a final bit of sustenance. “Food often plays an emotional role in the last stages of life,” said Dr. Kurt Merkelz, the chief medical officer at Compassus, a home-based care company. “Some patients may reminisce about favorite meals or foods that connect them to fond memories and loved ones. There are instances where patients crave a specific dish that reminds them of their family or heritage, even if they can’t eat much.” ... People often ask for things like mashed potatoes, ice cream and chicken soup, according to Gail Inderwies, the founder and president of KeystoneCare, a hospice and home health provider in Pennsylvania. ... Sometimes, those comforts are part of a culinary heritage.

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 

Taking over affairs for an aging parent in mental decline U.S. News & World Report; by Lisa Esposito and Elaine K. Howley; 12/17/24 ... Taking over affairs for an aging parent is a vast undertaking that must focus on several areas of the individual’s life and health simultaneously. Here is a step-by-step guide to approaching this process:

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.