Literature Review

Hospice a saving grace during our hardest time Pikes Peak Courier; by Mary Lovato; 6/11/25 ... I recently lost the two most important men in my life. My husband passed away from bladder cancer and within 6 months, my brother passed away from COPD. The individuals who worked for Hospice and helped us deal with the end of life of each of these loved ones were amazing. It wasn’t just the medical personnel, it was also the person who came to the house to set up the required equipment, it was the person who bathed the patient, it was the social worker, it was the person who offered spiritual guidance, it was even the person who in an emergency, delivered medicine in the middle of the night.

Nursing home is pressuring my mother-in-law to enter hospiceAging Care - Caregiver Forum - End of Life - Questions; question posed by "concerned8"; 6/12/25 I am her Health Care Surrogate but as they won't declare her incompetent it has not come into effect. I believe the home's intent is to prevent me from making the decision regarding hospice and instead to pressure her to enter it in various ways. ... I am not anti-hospice and expect her to enter it in the near future, but want that to be my decision, not the home's (even if it's portrayed as hers).  ... [An answer from another reader" Our family has only had bad experiences with three different hospice companies. Contrary to what most people believe, many patients are placed on hospice for free equipment and free services. I was told this by more than one hospice worker.Editor's Note: This post raises numerous troubling perceptions, with descriptions of poor hospice experiences. 

Dementia severity associated with unmet caregiving needs during skilled home health careJournal of Applied Gerontology; Julia G. Burgdorf, Jennifer L. Wolff, Yolanda Barrón, Halima Amjad; 5/25One-third of home health care (HHC) patients have dementia. We examined 426,608 older (65+) HHC patients with dementia in 2018. Unmet caregiving needs were determined from HHC clinician reports indicating that (1) no caregiver was present (lack of availability) or (2) the caregiver needed training (lack of capacity). Most (83%) HHC patients with dementia experienced an unmet need for caregiving. Medicaid enrollment and depression were associated with lack of caregiver availability; greater clinical severity and being post-acute were associated with lack of caregiver capacity. Patients with high (compared to low) cognitive symptom severity had higher odds of unmet needs due to lack of caregiver capacity ... Findings illustrate the gap between dementia caregiving needs and capacity, highlighting the importance of supportive resources such as training.

Grandad rehearsed his funeral 10 years ago – Now his final wishes come true after his passing Good News Network; 7/28/24; published in our newsletter 8/1/24A British senior who pre-planned his funeral and rehearsed it on TV in 2013, had his final wishes come true after peacefully passing away in June. Malcolm Brocklehurst, who is a renowned aircraft expert, commissioned an orange airplane-shaped coffin ten years ago from Crazy Coffins, an offshoot of a Nottingham-based traditional coffin and urn maker in England that helps people customize their funeral. The grandfather-of-nine was filmed sitting in the coffin on Channel 5’s Bizarre Burials, which also featured a rehearsal of the ceremony that the former aerospace engineer coordinated to the last detail. The plane was aptly called Tango One and numbered with MB 1934—his initials and year of his birth. He also announced that he wanted the funeral procession to leave from the stadium pitch where his favorite football team, Blackpool FC, plays. ... But speaking about the rehearsal in 2013, he said it was all “light-hearted fun.” 

New Hampshire woman’s father dies in hospice care [in fire evacuation zone] when California fires broke out CBS News WBZ, Boston, MA / YouTube; 1/15/25, published in our newsletter 1/15/25Just two hours before the fire evacuation--Merle Fetter--Barbara's husband of 64 years died in Royal Oaks Hospice Care, with Barbara holding his hand until the end . … As the fire moved through Altadena towards Monrovia Barbara was forced to leave Merrill's body, unable to be evacuated. ... [Daughter in New Hampshire:]  “I didn't know where my mother was. I didn't know what happened to my father's body.” Barbara's daughter—Joy—thousands thousands of miles away in New Hampshire couldn't fly to Los Angeles until Friday. When she finally landed she received a reassuring call from Royal Oaks her mom was OK and her father's remains taken to the coroner's office. Staff feel like residents here are their family. 

Couple marry in ICU an hour before bride’s father takes his last breath Our Community Now, North Providence, RI; by OCN staff; 8/22/24, published in our newsletter 9/1/24A Rhode Island hospital held an emergency wedding that had to be performed before the bride’s father died from muscular dystrophy. Sabrina Silveira-DaCosta says her father, 58-year-old Frank Silveira, was Portuguese-born and raised, a serious chef and a five-star dad. ... With Silveira’s health rapidly declining, his family realized he wasn’t going to make it his daughter’s wedding on Sep. 7, so plans changed. “Everyone was able to bring the wedding to him in the hospital, and he got to walk me down the aisle,” Silveira-DaCosta said. From his intensive care unit bed, Silveira escorted his daughter down the hospital hallway Monday into the hands of her fiancé, Sam DaCosta. ... Silveira-DaCosta’s father died about an hour after he walked her down the aisle. “It’s very complex. It’s a lot of emotion. Our community hospitals don’t get enough credit because any big hospital couldn’t have done this for us,” she said.

His sick wife asked him to kill her. Now that she's gone, he says the loneliness is worse. USA Today; by Madeline Mitchell; 6/11/25 Ever since his wife died in December, David Cook feels like a stranger in his own home. ... The loneliness “is a problem,” Cook said, and sometimes he slips into dark, depressive episodes he can only shake with sleep. He avoids the living room, with the framed photos of the two of them smiling together, the new plush carpet, the television where they'd watch tennis and golf and the ghost of the recliner she used to sit in. Patricia Cook died there, so for now − maybe forever − it's off limits. ... When she went into hospice in their living room, adamant that she’d die in her own home, the pain was excruciating. “She actually, several times, asked me to kill her," Cook said. "And I didn’t even have to think about it, I just said, ‘I’m sorry.’ I said, 'I just can’t do that.’” “Do you know how hard that is?” Cook said. “When someone asks you to kill them?” ... Editor's note: Spoiler alert. David Cook did not kill his wife. Still, he asks, "What more could I have done?" Read this story to develop your understanding of the profound depths of loss for spouses/partners, especially when they have served as caregiver through challenging needs.

Caring for Gladine: A Las Cruces man's account of caregiving for his wife with dementia Las Cruces Sun News; by Leah Romero; 6/10/25 When Gladine Lindly was diagnosed with dementia in 2018, she and her husband Steve Gaskell decided to manage at home. But as Lindly’s dementia progressed, Gaskell quickly realized he needed help taking care of her. ... “She said, ‘I want you to be my caregiver. ... I don’t want to go into a home or facility,’” Glaskell recalled. “I proceeded to walk into the doors of Home Instead to apply for a job because I wanted to learn how to be a caregiver. Never done anything like that before.” ...  By September 2024, Lindly ... was placed on hospice care. By December, the hospice nurse told Gaskell it was time for family and friends to start saying their goodbyes.  ... [Gaskell described her death,] "And it was as peaceful as you can imagine. And that was…this sounds crazy to say, but that was probably the easiest part of the whole process.” Lindly passed on Jan. 7, 2025 at the age of 77. [Go to the source article for more of this inspiring story about caregiving through dementia.]

Terminally ill woman, 35, cancels plans - best friend’s reaction backed Miami Herald, Miami, FL; by Lydia Patrick, Newsweek Life; 6/5/25 A woman has sparked an outpouring of support online after admitting she felt relieved when her terminally ill best friend canceled their remaining plans. The anonymous Reddit user, ... shared her emotional experience ... where her confession received over 8,000 upvotes and hundreds of comments. She explained that her best friend, Sarah, 35, had been diagnosed with an aggressive form of pancreatic cancer and her condition rapidly worsened. ... In an effort to make the most of her time, Sarah created an ambitious bucket list, which included a trip to the coast, a party, and a final hike to her favorite mountain. However, after halting treatment, she transitioned into hospice care and most of the planned activities were either canceled or significantly scaled back. ... [Serving as primary caregiver, she wrote,] "And I'm relieved. I'm utterly, profoundly ashamed to admit it, but I'm exhausted. Mentally, emotionally, financially. ..." ... Dr. Terri Daniel, a grief counselor and hospice chaplain at Forest Park Hospice, told Newsweek the Redditor's experience is not uncommon and far from selfish.

Provider MiraSol Health launches new Behavioral Health Program Hospice News; by Jim Parker; 6/3/25 MiraSol Health has launched a new behavioral health program designed to amplify emotional and psychological support for its hospice and palliative care patients. Branded as Rays of Hope Behavioral Health, the program offers individual and group therapy sessions, both in person and via a secure telehealth platform. Through Rays of Hope, MiraSol’s licensed therapists will help address anticipatory grief, caregiver stress, loss and other struggles that patients and families face during a time of chronic, serious or terminal illness.

Q&A with Jim Obergefell on the future of Supreme Court's gay marriage ruling, LGBTQ rights Fremont News Messenger; by Laura A. Bischoff; 6/1/25 In 2013, Ohioans Jim Obergefell and John Arthur flew on a medical jet to exchange vows in Maryland where same-sex marriage was legal at the time. With Arthur in hospice care for amyotrophic lateral sclerosis, time was slipping away for the Cincinnati couple and their home state of Ohio prohibited same-sex marriage. Days after their tarmac wedding, civil rights attorney Al Gerhardstein showed them a blank Ohio death certificate. "Do you guys understand that when John dies, his last record as a person will be wrong here, where it says marital status at the time of death?" Gerhardstein told them. "Ohio will say John was unmarried. And Jim, your name will not be here, where it says surviving spouse name." Brokenhearted and angry at the idea of not being recognized by Ohio, Arthur and Obergefell told Gerhardstein, yes, they wanted to do something about it. Arthur didn't live to see the fruits of that decision: On June 26, 2015, in a 5-4 decision in Obergefell v. Hodges, the U.S. Supreme Court decided states must allow for same-sex marriages and must recognize those solemnized in other states. Arthur died in October 2013 at the age of 48.

I quit my healthcare job to take care of my grandmother. It’s a mix of happy and sad moments, but ultimately has been life-changing for us. DNYUZ; "as-told-to essay based on a coversation with Kristina McDonald"; 5/26/25My grandmother is 80, and my grandfather is 83. I quit my full-time job to care for my grandmother as I noticed that her undiagnosed dementia was worsening. ... 

Lanterns light up the sky in east Wichita to remember lost loved ones on Memorial Day ABC KAKE, Wichita, KS; by Jocelyn Schifferdecker; 5/26/25 About a hundred lanterns lit up the sky Monday night at the Harry Hynes Memorial Hospice memory garden in East Wichita. Each lantern floating on the water told its own special story. [Candace] Dudley says [her husband] Ricky died about a year and a half ago from colon cancer. ... She says she misses him every day and she's thankful for Lanterns of Life because it gave her an opportunity to remember him. "My heart is full tonight. Making his lanyard, I made it very special ... I did all four sides with a lot of thought and put a lot of love into it because he was the love of my life," she said while holding back tears.The event is arranged by Harry Hynes Memorial Hospice. Organizers say they hope lighting a lantern for their lost loved one will bring them peace in some way. ... The event also featured food trucks, music, and more. This was the first year the hospice held it but it says it doesn't plan for it to be the last.