A post about some of the difficult things going on in life…
Why is it that writing about shitty things in your life is so much more difficult than writing about positive things? I can think of a million reasons why I shouldn’t write about them, and 999,999 of them are bullshit anxiety reasons about how my problems aren’t important enough to voice.
Someone you write about will see it and recognize themselves and be upset with you or be hurt.
Someone you wish would see it never will and it won’t help to say it if they don’t.
The worst offender for me is the idea that my problems are insignificant and I’m not important enough for anyone to truly care about how I feel. I am lucky enough to have family that loves me, even if they’re the cause of a lot of strife in my life. And most of them would be surprised if they knew how often I fantasize about suicide and how I could do it. How I’ve thought of driving to a field in the country and swallowing a bottle of pills in my car.
How I thought about how I should bring the lawn and leaf trash bags to sit in so that when my bodily functions cease, I don’t permanently fuck up the car seats when I piss and shit myself.
Even worse would be the fact that I most often think about these things when my kid is going off on me. My own kid. I love him and I would die for him, and he’s had a really rough shake in life.
And right now, I am all that he has. Family is an entire state away, he’s had shitty luck making friends in a new(ish) town, his dad and stepmom have abused him, he was raped by a cousin before he hit double digits, he’s been bullied in school. So I am his rock. I am the bucket into which he dumps his overflow of feelings, and often those feelings are full of sharp, painful words.
All the ways in which he feels I’ve failed him, my own insecurities, all thrown in my bucket. And these days, my bucket is often almost at capacity.
My bucket has always been the reliable one into which others could dump their excess and lighten their own load. I always found ways to lighten my own bucket, and now I realize it was probably a convenient slow leak – things just tended to cool down with time for me, I could sleep on things for a night or two and generally the bothersome feeling ebbed on its own.
As I’ve grown older, it’s like the wood has expanded and the slow leak has resolved itself.
Or perhaps it’s that feelings filled my bucket that were too big to drain through that small leak. Feelings that I had when I found out my boyfriend was sexting four of his exes, telling them he loved them, telling them terrible things about me. Feelings I had when I found out that while I was at my grandmother’s funeral, he was at home saving pictures of one of his exes to his Google Drive. Feelings about how he would gaslight me when I confronted him. Feelings about how shitty he was with my kid.
Feelings about how I shouldn’t have let it happen, how I should have ended things the first time I found evidence of his infidelity and read the saved texts to one ex saying he had a dream that he asked her to marry him and she said yes.
On top of those feelings are all the feelings that settled in that bucket surrounding the deaths of my grandparents. They raised me from birth and were parents to me, more so than my birth parents were while I was growing up. I was the only person with my grandpa when he went to the ER with severe abdominal pain. I asked the doctor if it was an ulcer, and I’ll never forget the feelings that crashed in the bucket when he said, “Oh no, we’re pretty sure it’s cancer.”
The feelings started feeling like rocks when I got a call from my aunt in the middle of the night telling me that my grandpa had died, just one week before my birthday. I always joke, even though it’s not a joke, that I must be the Angel of Death because so many people in my life have died the same month I was born. I will never forget walking into that room and seeing his waxy pallor, his eyes closed, and his mouth open, slack-jawed. He was bony and thin, because the cancer had eaten him away – literally. It ate a hole in his colon, and it was inoperable because his type of cancer could be transmitted through the air if they had tried to operate.
When we told my grandma, she closed her eyes and moaned, “noooo” over and over again. One week later, the night of my grandpa’s funeral, she was brought to the ER and it was discovered that one of her diabetic ulcers developed gangrene. If they amputated the leg, she likely never would have recovered. She opted for hospice instead. My bucket could barely hold the feelings I had when I had to work instead of being with my family at her bedside because just a few months prior, my old job had to lay me off due to miscalculations by the CFO. So I got a day of bereavement leave for each of their deaths, and any other time off was unpaid. As a mother who barely made enough, I couldn’t afford not to work. So my anxiety swam through that full bucket every day, waiting for a call that I had missed it. Missed saying goodbye. Thankfully it happened while almost all her family was by her side, myself included. And I had the good fortune to sing to her to try and help her relax so she could let go. And I held her hand while I watched her face, wide-eyed and mouth gasping, take her last breath and finally release into peace and stillness, three weeks to the day after my grandpa.
My grief was handled alone as I became the rock to everyone else. Handled isn’t even the right word for it. It went ignored as I let everyone else pour their excess into my bucket. And then all the terrible things began to happen. As it often does, death brought out the worst in some family members. Money became a motivator, and they acted as though each red cent of their painstakingly maintained insurance policies was a gasp of oxygen and they needed it to live. I wanted to strangle the breath from them and give it back to my grandparents. I wanted to punch them and scream that I’d give every dollar to have them back. More big feelings as I watched the ugly sides of my parents, the people I was supposed to lean on, show themselves. I cannot forget it, and I cannot let myself fully trust them ever again.
Then the blow that no parent is prepared for – finding out their child was abused. I can’t describe the feelings I had when my son told me, but I remember it like it was yesterday. And he asked me not to tell anyone who didn’t need to know. He was already afraid to tell me, because his abuser threatened to kill him if he ever told anyone else. And so beyond people who were necessary, no one knew what had happened. I respected his wish for silence, and I wouldn’t take it back for anything. But the weight of what happened to my bright, lovely, sunshine child was heavy. And fighting for justice within the legal system, alone, was hard as fuck. The justice system doesn’t do much when the perpetrator is a juvenile, and my son ended up having to jump through more hoops than anyone which led him to develop the feeling that he was being punished for what happened to him. He’s never truly recovered from that, and it infuriates me whenever I think about it.
He was diagnosed with generalized anxiety disorder and talk therapy wasn’t working. I decided to try medication to help him cope better with daily life while we continued talk therapy. Eight months later, he was on Prozac and his doctor doubled the dosage because he thought he was metabolizing it too quickly. He was wrong.
One night it was like a switch flipped in my son, he went off and was threatening to stab us, laughing in my face as I cried, and more. I told him I was going to have to have him committed to a treatment facility, and the switch flipped back. He broke down in tears, and begged me to get him help because he couldn’t control what was happening. I brought him to the ER to be admitted to inpatient treatment and the doctor said it was from too many video games and treated me like an idiot when I explained it was from an increased dosage of medication.
We spent three days and two nights in the ER waiting for a bed, and were finally discharged with a referral for outpatient treatment.
COVID-19 gotcha down with all of the talk about social distancing and self-quarantining? Wee ones driving you crazy? Teenagers sulking, moody and complaining of boredom? Looking for *FREE* educational resources to keep your offspring amused and entertained? Looking for ways to expand your horizons outside of your personal bubble?
The Band Back Together Project has you covered! Whatever floats your boat, we have a resource for you. See the extensive list below and check back often. We’ll update it as we receive additional suggestions. Don’t see your favorite free resource listed? Email Ann and she’ll add it.
General
Digital Public Library of Art (DPLA): DPLA connects people to the riches held within America’s libraries, archives, museums, and other cultural heritage institutions. Diverse materials including photographs, books, maps, news footage, oral histories, personal letters, museum objects, artwork, government documents
FarmFood 360: Virtual tours of 11 different kinds of farms Khan Academy: Lots of topics broken down by age and subject
Curriki: Best curriculum, lessons and on-demand content free, open, and accessible to all
Prodigy Math Games: Math game battles to earn points by solving math problems. Free! The home page makes it look like you have to pay for membership but there’s a “play free” button up in the corner to bypass that
Resource Bank – Math: Hub features a variety of collections to assist teachers, students and parents in developing mathematical skills, concepts and understanding
English Language Arts (ELA)
Storyline Online: Your favorite children’s books read by celebrities
Scholastic Reading Learn at Home Activities: Every day includes four separate learning experiences, each built around a thrilling, meaningful story or video. Kids can do them on their own, with their families, or with their teachers. Updated daily.
Humanities / Social Studies
iCivics: Games – Branches of Power, Court Quest, Immigration Nation, Race to Ratify, SupHouse
Memorica – Mexico: Explore, investigate, filter, examine, discover and understand archives that are part of the cultural heritage of Mexico
Virtual Museum of Migration: The Virtual Migration Museum tells the story of migration in 3D. Visitors can move through a fictional urban landscape where they can enter and explore different buildings, each with a unique theme. In these buildings, the visitor can learn more about a range of topics, including work, culture and education. The stories are illustrated with items taken from the DOMiD collections. Additionally, visitors can also travel through time by switching between three different periods
Latino Virtual Museum (Smithsonian): Empowers a greater understanding and deeper appreciation for the enduring contributions of Latinos to our country. Preserves a growing collection of diverse stories and experiences that reflect Latino presence in our history and culture, and convenes conversations, inclusively, about the stories and connections that continue to inspire generations to come
Girl Museum: Girl Museum is the first museum in the world dedicated to girlhood. We are a virtual museum for exhibitions, education, and raising awareness about girls and girlhood globally. We are also an information platform for social/cultural dialogue and investigation. We research and collect cross-cultural historic and contemporary images and stories from and about girlhood around the world. Through exhibitions, publications, and projects, we explore and document the unique experience of being born and growing up female.
Exter Time Trail: Exeter has one of the longest and most distinguished histories of any British city and you can explore over 250,000 years of it through Time Trail. The story is told through hundreds of objects from RAMM’s collections and with images of historic buildings and archaeological sites. Try our games and puzzles section to have a go at building a Roman mosaic or explore historic Exeter in Minecraft. Have you tried our new trails for mobiles?
KaiXR: Kai XR creates inclusive & accessible mixed reality spaces allowing kids to explore, dream, & create. Kai XR is a one-stop-shop for audiences brand new to mixed reality. Our educational resources offer educators, parents, & life-long learners a path to become early adopters of mixed reality.
Europeana – Archaeology: Explore 2,302,911 archaeological treasures from European museums, galleries, libraries and archives
Europeana – Industrial Heritage: Explore industrial heritage and working lives in 488,356 photographs, videos, objects, documents and more from across Europe
Europeana – Migration: Explore 230,988 items on the topic of migration to, from, and within Europe
Maps & Geography
Minnesota History: Resource for reliable information about significant people, places, events, and things in Minnesota history
The Metropolitan Museum of Art – Maps: Explore 5,000 years of art across the globe. You’ll find fun facts, project ideas, and behind-the-scenes videos made by curious kids. Program your destination to explore worlds of art
Ancient Mediterran (SmartHistory): The Great Pyramids at Giza, the Parthenon in Athens, the Colosseum in Rome, and more. c. 5000 B.C.E. – 400 C.E.
Arts of the Islamic World (SmartHistory): From the Dome of the Rock to the Taj Mahal, the Coronation Mantle, the Ardabil Carpet, and more… c. 640 – 1924 C.E.
Africa – Art Contributions (Smart History): Africans have contributed to the world’s cultural heritage with works of astonishing innovation. 7000 B.C.E. – present
Asia – History of Art (SmartHistory): Discover thousands of years of art from the world’s largest continent. c. 3500 B.C.E. – present
Oceania – Pacific (SmartHistory): The Pacific Ocean is seen to connect rather than separate the many islands of Oceania. c. 1500 B.C.E. – present
The Frick, Pittsburgh: Virtual tours, online collections, activities
FarmFood 360: Virtual tours of 11 different kinds of farms
History
National Museum of African American History & Culture (Smithsonian): The National Museum of African American History and Culture is the only national museum devoted exclusively to the documentation of African American life, history, and culture. Museum has collected more than 36,000 artifacts.
Mexicana Ministry of Culture – History: Open platform of available digital collections of cultural content and spaces, including museums, libraries, archives, television and radio stations. Diverse formats available
Mexicana Ministry of Culture – Anthropology: Open platform of available digital collections of cultural content and spaces, including museums, libraries, archives, television and radio stations. Diverse formats available
SmartHistory: Art has the power to transform lives and to build understanding across cultures. We believe that the brilliant histories of art belong to everyone, no matter their background
Ancient Mediterran (SmartHistory): The Great Pyramids at Giza, the Parthenon in Athens, the Colosseum in Rome, and more. c. 5000 B.C.E. – 400 C.E.
Arts of the Islamic World (SmartHistory): From the Dome of the Rock to the Taj Mahal, the Coronation Mantle, the Ardabil Carpet, and more… c. 640 – 1924 C.E.
Africa – Art Contributions (Smart History): Africans have contributed to the world’s cultural heritage with works of astonishing innovation. 7000 B.C.E. – present
Asia – History of Art (SmartHistory): Discover thousands of years of art from the world’s largest continent. c. 3500 B.C.E. – present
Oceania – Pacific (SmartHistory): The Pacific Ocean is seen to connect rather than separate the many islands of Oceania. c. 1500 B.C.E. – present
The Metropolitan Museum of Art – Time Machine: Explore 5,000 years of art across the globe. You’ll find fun facts, project ideas, and behind-the-scenes videos made by curious kids. Program your destination to explore worlds of art
American Battlefield Trust: Experience the Civil War like never before and tour the battlefields in panoramic view. Jump from battlefield to battlefield using our virtual 360-degree tours that offer historic detail on battle highlights and points of interest, compelling photography, lively video, in-depth articles and more.
Remembering Lincoln – Ford’s Theater: After President Abraham Lincoln’s assassination on April 14, 1865, people across the world left behind evidence—letters, diaries, newspapers, sermons, mourning ribbons—that reveals their responses. These traces of the past show how the country, coming back together after four years of a bloody Civil War, mourned—or didn’t mourn—our 16th president.
George Washington’s Mount Vernon: Virtual Tours, timelines, etc. The estate, gardens, and farm of Mount Vernon totaled some 8,000 acres in the 18th century. Presently, an estimated 500 acres of this historic property have been painstakingly preserved along the banks of the Potomac River.
Prisoners At Home: Everyday Life in Japanese Internment Camps (DPLA): On February 19, 1942, President Franklin Delano Roosevelt issued Executive Order 9066. 120,000 people of Japanese ancestry (two-thirds of whom were US citizens) were forced to evacuate from their homes and report to assembly centers. From there, they were moved to one of ten internment camps, or War Relocation Centers, located in remote areas of seven states—California, Arizona, Colorado, Wyoming, Idaho, Utah, and Arkansas.
American Empire (DPLA): This exhibition maps the diverse and rocky terrain of the American empire to show how it informs contemporary conversations on heritage, citizenship, racism, and globalization.
America in 1918 Influenza Pandemic (DPLA): From the spring of 1918 to early 1919, no aspect of life remained untouched by the 1918 influenza pandemic for Americans at home and on the WWI war front. This exhibition explores the pandemic’s impact on American life. Torn in Two: Mapping the American Civil War (DPLA): This exhibition tells the story of the American Civil War both nationally and locally in Boston, Massachusetts, through maps, documents, letters, and other primary sources.
Activism in the U.S. (DPLA): The United States has a long history of activists seeking social, political, economic, and other changes to America—along with a history of other activists trying to prevent such changes.
Natural Museum of Natural History (Smithsonian): Collection of 145 million specimens and artifacts. Each one reflects a moment in space and time; in these moments we find Earth’s story
Science
Heritage on the Edge: Explore how five cultural sites are being affected by climate change (Rapa Nui, Easter Island; Edinburgh, Scotland; Bagerhat, Bangladesh; Kilwa Kisiwani, Tanzania; Chan Chan, Peru)
Race to the Moon (DPLA): In 1955, the US and the USSR each announced plans to launch a satellite into orbit. Who would be the first to succeed?
Mexicana Ministry of Culture – Archeology: Open platform of available digital collections of cultural content and spaces, including museums, libraries, archives, television and radio stations. Diverse formats available
All About Birds: Explore any type of bird you’re interested in, hear their different calls, live animal cams
Shedd Museum: Dive into questions about your favorite animals with a new kids video series
Archeological Analytics: Social media collections focused on Archeology. Organization that helps institutions create and distribute enticing content using their digitized collections
Nat BioExplora: Natural science open collections portal (3D images, bio diversity)
ArtUK: Explore the online home for every public art collection in the United Kingdom
Mexicana Ministry of Culture – Art: Open platform of available digital collections of cultural content and spaces, including museums, libraries, archives, television and radio stations. Diverse formats available
Evolution of Personal Camera (DPLA): Since the advent and eventual commercialization of photography throughout the nineteenth century, cameras have continuously redefined the American public’s conception of how images and history can be captured and shared. Looking to the early cameras of the 1800s to today’s cell phones and social networking apps, this exhibition explores how the personal camera has shaped American consciousness and culture over the course of its development
Hammer Museum: The Hammer Museum champions the art and artists who challenge us to see the world in a new light, to experience the unexpected, to ignite our imaginations, and inspire change
Corning Museum of Glass: Glass is a versatile, ancient material that is still being explored and understood by artists, scientists and historians today. The story of glass is a story about art, history, culture, technology, science, craft and design.
Europeana – Art: Discover art, artists and stories in 3,511,246 artworks from European museums, galleries, libraries and archives
Europeana – Fashion: Explore historical clothing and accessories, contemporary designs, catwalk photographs, drawings, sketches, plates, catalogues and videos from more than 30 European public and private institutions
Europeana – Photography: Explore the history of photography in 5,065,084 items from European cultural heritage collections
Virtual Museum of Canada: Discover history, art, science, nature and more through virtual exhibits from Canada’s museums and heritage organizations
Mexicana Ministry of Culture: Open platform of available digital collections of cultural content and spaces, including museums, libraries, archives, television and radio stations. Diverse formats available including radio programs, short films books, magazines, photographs, digital publications, thesis, multimedia objects, paintings, sculptures, etc
Smithsonian – Digital Learning Labs: Smithsonian Learning Labs gives parents and teachers have access to millions of digital resources from across the Smithsonian’s museums, research centers, libraries, archives, and more. You will also find pre-packaged collections that contain lessons, activities, and recommended resources made by Smithsonian museum educators as well as thousands of classroom teachers like you. Use the search bar below to search for Smithsonian Learning Lab Collections.
Musical Instruments Museums Online (MIMO): World’s largest freely accessible database for information on musical instruments held in public collections. Database contains the records of 64,070 instruments
Europeana – Music: Explore 610,607 recordings, sheet music, instruments, and music-related collections from European audio-visual archives, libraries and museums
A figure appeared in the darkness. In the gleam of the moonlight, I knew it was her, the woman who gave me life. She was small but managed to overwhelm the room with her haughty pride. Her words always cut. They were sharp. The wounds were deep.
Every time my mother saw me, she realized her mortality, her own demise. She hated me for my youth. She couldn’t stand that I was a specimen of beauty and each day it grew; it was going to outshine her.
She knew that. She couldn’t control it.
So she controlled how I felt about myself. She made sure I knew I was ugly.
She told me every day, “You’re so ugly!” She wished I was a boy. Boys were better.
She didn’t have to compete with boys; she could manipulate them more easily.
She didn’t place value on my academic achievements; to her, I was worthless and stupid.
She didn’t graduate high school. She hated me for having opportunities she never did. She tried desperately to hold me back from being successful at anything.
I was the Repunzel in this warped retelling of the story.
The mother (the witch) had fallen from the high tower and was blinded by the thorn brush she herself harvested. Now she’s an aimless spirit, wandering the halls of my home. She wrestles with an unknown assailant as Jacob wrestled with the angel. She’s asking me for something, but she can’t speak.
Is it forgiveness?
Is she asking me for my blessing?
If I do forgive her and let her go, does this mean I’m free?
Today, we remember the children we’ve loved and lost. We have been through the unthinkable; we’ve had to bury their children. It goes against nature: parents should never outlive their children.
Today, we remember the souls we’ve lost and the ways our lives have changed because we knew them at all. We remember the pain and horror we live with each day without them. We remember the love we shared.
Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
Amanda’s Baby:
Jamie, 4/6/2010
Angie’s Daughter:
Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
Ann’s Son:
Orion, stillborn May 8, 2004
Beka’s Son:
Benjamin, September 4, 2012, stillbirth.
Beryl’s Daughter:
Bella Rose, stillborn on September 9, 2009.
Brenda’s Son:
Emerson Allen Behrends, July 10, 2001, stillborn.
Danielle’s Baby:
Micah Rachel
Debbie’s Son:
Jonathan Edward, June 4, 1992, stillborn.
Debbie And Jeff’s Daughter:
Chloe Eva, September 12, 2008, stillbirth.
Heather and David’s Daughter:
Clara Edith, July 1, 2012, Stillbirth at 42 weeks, 3 days due to meconium aspiration and uterine infection.
Jill and Mark’s Baby:
Haven, November 26, 2003, stillborn at 38 weeks gestation
Jolene’s Daughter:
Ruth, January 3, 2013, stillbirth
Leslie’s Son:
Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
Pippa, born still on February 13, 2011 from listeria infection.
Lillie Belle:
Stillborn, born still 2017
Lisa’s Daughter:
Kaitlyn Grace, stillborn, born still, May 13, 1995.
Louise and Joseph’s Baby:
Alice Mathelin, born still on February 25, 2011, at 36 weeks and 5 days from Abruptio Placentae
Martha’s Twin Boys:
Owen died March 8, 2008 because his cord wasn’t properly attached to the placenta.
Joshua died one month later, April 6, 2008 because he couldn’t live without his brother. Both were born still on April 8, 2008.
Melanie’s Daughter:
Summer Lily, born still March 30, 2011.
Mel’s Daughter:
Jordan Ala, stillborn on November 13, 2006.
Melissa’s Twins:
Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
Nikki’s Son:
Sam, 1997, intrauterine fetal demise
Sarah’s Daughter:
Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
Stephanie’s Son:
Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
TiaMaria’s Daughter:
Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Tristyn’s Babies:
Miscarriage A: 10/31/2016
Miscarriage B: 12/25/2016
These were very wanted babies conceived after months and months of trying. I started to think maybe my body was broken. When I got pregnant again a year later, I was consumed by anxiety.
Prematurity:
Amy and James’s Babies:
Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM).
Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Baby Helen: Born July, 1993. Passed from prematurity.
Celeste’s Son:
Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
Chantel’s Daughter:
Emily, prematurity born 19w 5 days – was too small for the equipment.
Christine’s Son:
Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Aaron’s Son:
Aodin R. Hurd, October 7, 2007, born still due to premature rupture of the membranes.
Jenn’s Son:
Kevin William, prematurity, 2005
Kate’s Babies:
Baby S, March 2008, Miscarriage
Evie, December 14, 2009, Triplet Prematurity
Jack, December 22, 2009, Triplet Stillbirth due to Prematurity
Will, January 13, 2010, Triplet Prematurity
Baby M, May 2010, Miscarriage
Kristin’s Baby (Mama KK):
Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
Leleisme’s Babies:
Ayla and Juliet, October 20, 2009 at 20 weeks.
Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Matthew Chase Sims:
April 25th, 2006 due to prematurity.
Melissa’s Son:
Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
Melissa’s Daughter:
Hope, 1993
Nicky’s Son:
Samuel, August 8, 2001, prematurity.
Nina’s Son:
Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
Paula’s Baby:
Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
Qudija’s Babies
Mikel Azariah and Willamina Azaria born August 12, 2019.
Mikel was stillborn,
Willamina was premature at 22 weeks 6 days
S & T’s Son:
William, November 2, 2013, 24 weeks, 3 days, prematurity
Vickie’s Son:
Collin, complications from prematurity, 2009
Yvette’s Son:
Erik Richard, July 29, 1981, prematurity.
Birth Defects:
Aaron and Kristine’s Son:
Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
Liberty Ann born March 30, 2011 and died on April 19, 2011.
Amy’s Babies:
Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days.
Mateo was born still.
Anthony passed away from Transposition of the Great Vessels.
Ian passed away after a short stay in the NICU.
Amy’s Babies:
Nathaniel James, August 24, 2001 – August 29, 2001, Citrullinemia
David Henry, May 11, 2010 – January 24, 2011, Citrullinemia, passed away after becoming sick post liver transplant
Baby Khalil,:
born August 14, 2009, stillborn, born still from birth defects.
Baby Kober
Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
Beth’sSon:
Ethan Connor Brockwell, May 3, 2006 – August 17, 2006. Born with Hypoplastic Left Heart Syndrome.
Christopher:
November 4, 1979, due to pulmonary atresia, a congenital heart defect.
Christopher’s Son:
Aidan, born with brain malformation on December 16, 2008 and passed on December 19, 2008.
Cora Mae McCormick:
November 30, 2009 to December 6, 2009 from a congenital heart defect.
Ellen’s Son:
Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
Julie’s Daughter:
Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
Kathryn’s Son:
Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
Raquel’s Son:
Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
Ruth’s Son:
Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
Shannon’s Baby:
Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
Suzy’s Son:
Starbaby, born still February 2008 due to Trisomy 18.
Venita’s Son:
Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
Wendy’s Baby:
Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
Amy’s Baby:
Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
Claudia’s Son:
Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
April’s Daughter:
Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
Colleen’s Babies:
Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
Jessica and Mark’s Daughter:
Hadley Jane, born October 9, 2001 and died October 11, 2007.
Jenny’s Daughter:
Addison Leah, June 13, 2008, accidental death.
Julie’s Babies:
Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
Lanie’s Sons:
Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
Leslie’s Son:
Cullen, September 11, 2010, stillbirth.
Matthew Dickey:
He passed March 20, 1997 from a nocturnal seizure and suffocated to death.
From his mother: “Matthew was a beautiful soul. A loving and caring human being.”
Mindy’s Son:
Brian Vitale, accidental death, September 4, 2007 – June 3, 2010.
From his mother: We miss him more and more each day.
Nancy’s Son:
Patrick, born April 10, 1977, Adoption
Pharon’s Daughter:
Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
Stephanie’s Daughter:
Katy passed on November 27, 2017 from leukemia.
From her mother: Katy was only 31 when she died, leaving us to raise her sweet 10-yr old daughter, Rae. She was a spirited, friendly soul.
Suzie’s Son:
Nathan Michael King, died from SIDS November 2008.
Vanessa’s Daughter:
Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
A terminal condition or illness is one that is life-limiting and will cause death in the near future. It is expected that the illness will lead in permanent unconsciousness (also called a permeant vegetative state) in which a person’s brain no longer functions which the person is unlikely to recover from. There are a huge number of terminal illnesses that can include (but not limited to) advanced cancers, multiple organ failure, dementia, neurological conditions, organ failure, massive heart attacks, and strokes.
I’ve Just Been Diagnosed With A Terminal Illness – What Now?
Time stops when you learn that you or a loved one has a terminal illness – some people react by crying and making plans, others may ignore the news entirely. As crazy as it seems at the time, life does go on after a life-threatening diagnosis no matter how you’re feeling and coping.
You or your loved one have probably been working on curing this illness through promising treatments, clinical trials, and other ideas; maybe sometimes it worked, and you feel better. Once the illness is deemed terminal, it’s unlikely that additional treatment will be unlikely to help.
You’re going to need all types of support as you work through your grief, emotional, practical, legal and financial concerns, end-of-life care, as well as funeral plans.
Finding out that your illness is no longer curable and that you have less than six months to live can feel like an impossible thing to wrap your head around. One minute, you had your whole life ahead of you, now you don’t.
Remember this above all else: there’s no right or wrong way to handle the fact that you do have a terminal illness and will soon die. Every single person who receives this news feels, acts, and behaves in their own way. This is a high shock to the system and can break your heart into a million pieces. Even if you knew that the diagnosis was possible, it’s a different ballgame to realize that your death is an inevitability.
Some people respond by being silent and digesting the information they’ve learned, while others may weep inconsolably. Still others may be full of anger and fear, while others may feel completely numb and feel no emotions whatsoever.
However you behave is the right way for you to behave.
Most people wonder things like “why me?” “what did I do to deserve this?” and “this cannot possibly be real.
Before you share the news, make sure to allow yourself the time to process what is happening, because once you begin telling people, there will be a lot of questions (and not all of them welcome). When you feel up to it, before you begin to put your affairs in order, try sharing the news with the people you’re emotionally closest to – a family member, clergy, or a close friend. It’s key to remember that people will be upset by this news, maybe they’ll get angry with you, maybe they’ll demand a second opinion, it’s unlikely they’ll know what to say.
Now you’ve got to realize that no matter what or how crappy this feels, you’re going to be pushed into the role of ambassador of your illness, which means that you should learn as much about it. Don’t expect people to easily take the news without disagreeing with you, don’t expect them to have any knowledge of the disease process, and don’t let them try to sell you on snake oil cures. Many normally kind people believe that they are helping by offering alternatives, and if you don’t feel it’s pertinent to your situation or choices, ask them to stop.
In fact, you may have to ask people to stop if you become overwhelmed by anything or anyone. And never, ever, ever feel as though you have to explain anything about what your feeling or your disease to anyone. Not everyone deserves that information, especially if it makes you uncomfortable.
A threatened loss is often marked by anticipatory grief, which means dealing with grieving a loss that has not yet occurred. This can include the death of dreams, the loss of a future, the loss of independence, which can lead to a number of very real, very valid feelings, including:
Extreme sadness
Anger is a common reaction to learning a loved one is going to be dying soon
Denial that the person will actually die
Anxiety about how, where, and when the death will occur
Depression often sneaks it’s wily claws into the brains of all involved with this person and the situation
Denial occurs when people don’t believe the doctors diagnosis, suggest alternative treatments, and pretend that everything is fine.
Acceptance is generally a pretty fluid stage of anticipatory grief. Some days, you may feel at peace with the diagnosis and what is to come, other days you may rage against what is happening to you and your loved ones..
Guilt is what happens when people are grateful that a loved one has died because it means the suffering is over and that they are at peace. It may be one of the more upsetting things you feel and you may feel that it is wrong, but it is both normal and acceptable.
Most of us don’t like to imagine ourselves dead or dying until it’s too late because it’s morbid and depressing. However, practically, you need to make sure your ducks are in a row before you are too sick to ask for the kind of end of life care you want. If you don’t create plans for your end of life, your next of kin will be faced with these major decisions.
Advance Care Directives
Using an advance directed makes certain that your health care and end-of-life needs are both known, respected, and to be followed to the letter. An advance directive should very clearly state what you want to have happen in the event that you’re unable to make your own decisions.
Remember: State laws vary, so make sure that any advance directive complies with local regulations. A local hospital, hospice, or seniors’ organization may have staff members who can help prepare an advance directive. Or, you can always have your loved one discuss this with a lawyer qualified in elder law.
An advance care directive is a signed document that address how aggressively doctors should pursue life-sustaining measures and whether quality of life or comfort should be paramount concerns.
Two common and important advance directives are:
A Living Will: A living will allows you to document your wishes concerning medical treatments at the end of life. Before your living will can guide medical decision-making, two different doctors must certify the following:
You are unable to make medical decisions
You are in the medical condition specified in the state’s living will law (such as “terminal illness” or “permanent unconsciousness”)
(Other requirements also may apply, depending upon the state.)
Healthcare Proxy or Medical Power of Attorney: this allows you to specify a person (who is called a Healthcare Agent) whom you very much trust to make decisions for you when you are unable to do so.
Before medical power of attorney goes into effect, a physician must conclude that they are unable to make their own medical decisions.
Additionally:
If a person regains the ability to make decisions, the healthcare proxy cannot continue to act on the person’s behalf.
Many states have additional requirements that apply only to decisions about life-sustaining medical treatments, so check local laws so you can stay in compliance .(For example, before your proxy refuses a life-sustaining treatment on your behalf, a second physician may have to confirm your doctor’s assessment that you are incapable of making treatment decisions.
These wishes should be communicated fully with everyone involved. Make sure you or your loved one takes the following steps:
Make a copy. Anyone named as a healthcare proxy in a medical power of attorney for health care should have – or know where one is – a copy of the document and know the goals for medical care.
Talk to your family: Your family members need to know your wishes for end-of-life medical care. and while this is a hard topic to discuss, it is very important and should be brought up every few months.
Talk with medical staff. Talk with nurses and doctors to ensure that your wishes are understood and can be followed. Give them a a copy of the advance directive to place in the your permanent medical record.
DNR Orders (Do Not Resuscitate)
A do-not-resuscitate order (DNR) alerts all members of your healthcare team to avoid cardiopulmonary resuscitation (CPR) and/or defibrillation if the your heart stops beating. This document is used only when heroic measures are unlikely to revive a dying person or to prolong meaningful life. Generally, during the last stage of a terminal illness, CPR is not very likely to result in successful resuscitation. This order should be renewed and discussed often with the health care team. Some things that may help you and yours to decide upon instating a DNR
Make a Decision About When a DNR Should be Used. Discuss the need for a DNR with your loved ones and the healthcare team. There are a huge amount of types of DNR, and forms – laws vary state to state, so it’s important to discuss this issue with your nurses and doctors.
Medical Care Will Be There even with a DNR in place, you will continue to receive appropriate medical care to treat short-term illnesses, injuries, medication to relieve pain, and/or other symptoms. You can still call EMS to your home and can still give oxygen, medications, and fluids and transport you to a hospital, if necessary.
Putting It All In Writing: without having the signed copy of your DNR, all health care and emergency personnel are required to attempt CPR – even if you’ve has asked family members to request that they forgo this measure.
Hold Onto The Originals: As with most things, only originals are considered to be valid, so keep several originals of a DNR form around. Always keep one original handy in the person’s home; the other should be carried by you or your caregiver at all times.
File Your DNRs: Talk to neighboring hospitals and skilled nursing facilities to keep a file of your DNR in your chart
What Are Some Life-Sustaining Treatments?
In most cases, life-sustaining medical treatment is any medical intervention, medication, or anything mechanical or artificial that sustains, restores, that would prolong the dying process for a terminally ill person. This is one of the many reasons that advanced directives are so important – if you know what you want to do at the end of life, you need to contact a lawyer and draw up an advanced directive that specifies exactly what you do and don’t want to have happen should you become medically incapacitated.
It is difficult to predict these things in advance, but it’s worth considering whether you will or won’t want the following life support options:
Mechanical ventilation: A machine called a ventilator or respirator forces air into the lungs for people who are unable to breathe on their own.
Intravenous (IV fluids) hydration: A tube inserted into a vein supplies a solution of water, sugar, and minerals for people who are unable to swallow.
Artificial nutrition (tube feeding): A tube inserted through the nose into the stomach supplies nutrients and fluids for people who are unable to swallow.
Hemodialysis: Blood is circulated through a machine to maintain the balance of fluids and essential minerals and clear waste from the bloodstream for people whose kidneys are unable to perform this function.
Comfort measures, such as are medicines or procedures used to provide comfort or ease pain, are not usually considered life-sustaining. In some states, tube feedings and IV fluids are considered comfort measures. States have different definitions, so be sure you know what your state says.
The aim of palliative care to make the person feel supported while giving them a good quality of life, rather than cure their illness.t is an approach that focuses on the relief of pain, symptoms, and emotional stress brought on by serious illness. For some, palliative treatments may be used to alleviate the side effects of curative treatment, such as relieving the pain associated with chemotherapy, which may help you tolerate more aggressive or longer-term treatment.
The term “palliative care” refers to any care that alleviates symptoms, and can be helpful at any stage of an illness, even when there is still hope of a cure for the disease.
Hospice and palliative care is an increasingly popular option for people whose life expectancy is six months or less (life expectancy at the time of entering hospice, it’s worth noting, may vary between states and individual hospice providers) without any hope for curing the disease. Hospice care works to make the person more comfortable in their last days but it is not curative.
Hospice care involves palliative care, which is used to treat they symptoms and pain without doing ongoing curative measures, enabling you to live your last days to the fullest, with purpose, dignity, grace, and support.
Hospice is an idea, a philosophy of care. While there are buildings called hospices, today “hospice care” doesn’t mean care must be delivered at some special facility. The idea is that if someone you love has an incurable illness, and treatment to prolong life and keep the illness under control no longer works, there is still something that medical professionals can do. Even if life cannot be prolonged, comfort can – and should – always be provided.
For many terminally ill patients, using hospice and palliative care in the home offers a dignified and comfortable alternative to spending their final months in ta hospital, far from family, friends, pets, and all that you know and love. Palliative medicine helps manage pain while hospice provides special care to improve the quality of life for both for you and your family.
Seeking hospice and palliative care isn’t about giving up hope or hastening death, but rather a way to get the most appropriate and best quality care in the last phases of your life.
Hospice care is directed at the entire family, so wherever it’s provided, it involves more than just providing nursing care and medications for comfort. Most hospice facilities have a spiritual advisor who can come to the home and visit whenever spiritual guidance is needed for you or your family, independent of religious background. Hospice providers also offer social workers who can help you put your affairs in order and work with you and your family about what’s going to happen. Nurses will come in to assess how you are doing physically, confer with caregivers, go over medications, and address any issues that may have come up – medical or not. Some hospice providers also offer volunteers who can come over and help you with your responsibilities and relieve your caregiver for a couple of hours.
What Are Some Of The Benefits Of Hospice And Palliative Care?
If you become terminally ill, having hospice can help to reduce anxiety for both you and your family by helping you make the most of the time remaining and achieve some level of acceptance. In fact, research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.
Hospice Respects Your Wishes:
It can be nearly impossible for some family and loved ones to let you end your life the way you’d like it to be. In hospice, you will get to assert the kind of care that you want in the way you want it. This treatment plan will be followed closely by all staff members and ensures that your family must follow it as well.
Hospice Focuses Upon The Family:
As the norm becomes hospice care given in your home, even if you must go to a facility or hospital, the focus is to find a calm, quiet place to be with your loved ones. Hospice works closely with all members of your family to ensure that you are able to feel at ease and comforted.
Hospice Provides Help For Grieving Families:
The finality and the grief of the death of a loved one is something each member of your family and loved ones must go through, and hospice can provide the kind of support and guidance your family may need to cope. Working with the hospice team can help your family deal with all of the emotions that occur following a major loss. Social workers and chaplains are always a phone call away for you and your loved ones. After you pass, this type of support will continue as your family works their way through your through the complicated grief and grieving process.
Hospice Is Not One-Size Fits All:
The treatment plan that you and your family put into place when you begin hospice care is focused upon one thing: you. Your plan can be changed at any time and if you want, you can even leave hospice to pursue treatments. People who work in hospices are very knowledgeable about the things you and your family will experience during your final months.
Hospice Gives Dignity:
When you die, how do you want to go? Do you want to be comfortable in your own space, surrounded by loved ones, or would you rather undergo painful medical treatments that may do more harm than good. Dying a dignified death is very important to a lot of people.
Hospice Provides A Plan:
One of the biggest things that occurs during planning hospice care is to make sure that you and your loved ones are as comfortable as you can be. The treatment plan will be comprehensive and exhaustive to make certain you have the kind of care you want. Hospice isn’t a single person, it is a group collaboration between doctors, nurses, social worked, clergy, volunteers, and nurses aides, and the plan of care for hospice depends upon making your last days as special as they can be.
Hospice Can Lessen Costs:
Today, medical bills can easily cost a family everything, and financial concerns are often a part of your worries about your care. You may not want to leave anyone in debt. Hospice takes the guesswork out of the financial aspect, as it is both covered by Medicare/Medicaid and is payed out at a single daily rate.
A Guide To Hospice And Palliative Care:
Your hospice team will work with you and your loved ones to create a plan of care suited to your unique needs. Sometimes, your loved ones may be invited to help with your care (notably if the hospice occurs in the home), and all are encouraged to comfort you.
Hospice programs vary greatly but generally share certain characteristics:
Array of Services. Hospice staff can administer pain medications, provide nursing care, and offer emotional support. Before and after a death, emotional support is extended to caregivers, too. Many programs offer bereavement counseling for a year after a death of a loved one..
A Special Team: Most hospice teams include specially trained doctors, nurses, aides, social workers, counselors, therapists, people who offer spiritual care, and volunteers, according to the Hospice Foundation of America..
Insurance/Medicaid/Medicate Coverage. Hospice services are covered nationwide under Medicare and in at least 45 states and the District of Columbia under Medicaid for anyone who has a prognosis of six months or less to live. Many private insurers and health maintenance organizations also offer coverage but may be costly – it’s best to shop around to find a hospice that’s best for you and your loved ones.
The services you receive from hospice are focused upon your needs, wants and desires and may change over the three phases of hospice care, which are:
The last phases of an illness
The dying process
The bereavement period
The types of care you may need may be provided by the following hospice staff members
Nursing Care: Your nurses work to monitor your symptoms and medication as well as helping educate you and your loved ones about what’s happening. Your nurse is also the special link between you, your family, and the doctor.
Hospice Doctors: Your doctor will the plan of care you have created, make any changes, and works very closely with with the entire hospice team.
Social Services: A hospice social worker will work to counsel and advise you and your family. He or she will become your community advocate, ensuring that you have access to any resources you need.
Spiritual Support and Counseling. Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Spiritual care is a personal process, and may help you explore what death means to you, resolve any “unfinished business,” helping you to say goodbye to loved ones, as well as performing a specific religious ceremony or ritual.
Home Health Aides and House Aids: Hospice home health aides provide comforting care to you, like helping you bath, shave, and care for you. Some hospices have aids for light housekeeping and meal preparation.
Trained Volunteer Support: Volunteers have long been the backbone of hospice and can listen, offer you compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.
Physical (PT), Occupational (OT), and Speech Therapies (ST), can help you develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding yourself.
Respite: Respite care gives your family a break from the intensity of caregiving. A brief inpatient stay in a hospice facility, for example, can provide a “breather” for both you and your caregivers. Be sure to check with your hospice to see if this is available at your chosen hospice.
Inpatient Hospitalization: Even if your hospice is in the home, there may be times when you’ll need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Occasionally, medical intervention may be recommended to ease the dying process that requires around-the-clock nursing care at a facility. Still, your hospice team will arrange inpatient care, remain involved in your treatment, and your loved ones
Bereavement Support: Bereavement is the grief and loss you feel when one of your loved one dies. Your hospice care team will work with your family to help them through the grieving process as much as possible. This kind of support may include a counselor visiting your family at specific periods during the first year, as well as calling your loved ones, sending letters, and suggesting specific support groups. If necessary, your hospice team will also refer your loved ones to medical or other professional care.
Common Hospice Myths Debunked:
Hospice has becoming increasingly popular in the past 20 years, but there is still quite a number of myths that people believe about hospice. Here are some hospice myths debunked:
Myths And Realities of Hospice
Hospice Myth
Hospice Reality
Hospice care is limited to six months.
While patients beginning hospice often have a prognosis of less than 6 months, hospice care is given as long as it is necessary.
Hospice is a place.
In the past, this was true, and there do exist hospitals and nursing homes, most frequently, hospice is provided in the home.
Hospice makes you die more quickly.
Hospice does not tend to prolong or decrease your life, however it does greatly increase the quality of the time you have left.
Hospice means "giving up."
Hospice isn't giving up on your life or treatments, it's a tool to use after all treatments have been exhausted for your terminal illness. Hospice also takes the guess-work out of dying and allows you to focus upon living.
Hospice is only for people with cancer.
While many people who have cancer opt to begin hospice care, cancer is not a requirement. Any illness with an incredibly poor prognosis may be able to begin hospice care.
If you're in hospice and find yourself in remission, you cannot go back to traditional medical treatments.
If you begin to feel better and are showing signs of recovery and believe that traditional treatments may extend your life, you can leave hospice at any time. You can also stop receiving hospice care at any time. This is your personal decision.
Your family has to provide hospice care.
While family members may choose to be around more often, a hospice team consisting of doctors, nurses, social workers, chaplains, nurse's aides and volunteers are responsible for providing care.
No matter what, you die in pain.
Medical professionals who work in hospice are well-versed in relieving the pain associated with dying. Pain management will be adjusted throughout your care and different stages of dying.
Hospices only use volunteers for your care.
This is a very dangerous myth as nothing could be further from the truth. Hospices hire medical professionals to do the care for people in hospice.
Hospice can only be brought in during the last weeks of life.
As soon as a person is deemed to have a terminal illness from which they are not expected to recover, a person can receive hospice care.
The referral for hospice must come from a physician.
Any one can make that referral - a friend, a loved one, a nurse, or you yourself can refer you for hospice care.
Hospice means that you no longer have a say in your treatment plan.
Hospice treatment plans are always visited and revisited according to the specific needs of the individual and include collaboration with the patient, the family, and the members of the care team.
Hospice provides around the clock, 24 hour a day care.
While hospice is always available all day and all night, the staff doesn't stay throughout the day and night.
Hospice stops giving the dying person food or water.
Hospice always provides food and water to anyone in their care, however, there are a good number of illnesses that make the patient lose their desire for food and water, which is not forced.
If you're in hospice, you can't go to the hospital.
Anyone who is in hospice can go to the hospital to treat or manage symptoms of the disease process, providing that the hospital care isn't aimed to cure the patient.
Hospice only helps with pain relief.
While one of the main goals of hospice is to allow you to remain comfortable and out of pain, hospice takes a whole person/family approach to all types of care.
If you go to hospice, you don't get any more of your medications.
Hospice was created to allow people to be comfortable at the end of their lives, which can mean giving up some medications (like chemotherapy and its side effects), other important medication is always available.
Hospice sedates their patients for the rest of their lives.
While one of the main goals of hospice care is to reduce pain, which can cause drowsiness, pain medications are actually given only according to what makes the person comfortable - not to sedate them completely.
When Should Hospice And Palliative Care Be Considered?
As with all types of end-of-life decisions, the choice to enter hospice is very personal and depends very much upon your feelings about death, dying, and spirituality, as well as a terminal physical illness.
Hospice care isn’t for people who are receiving beneficial treatments from their therapies, especially when these treatments are working to cure your illness. Palliative care can be extremely useful to people receiving any type of illness, including treatments that are working on curing the disease. People who develop very serious illnesses and find that the curative treatment is no longer working, that additional treatments may be harmful, or may be life-expending for a few weeks or months (but make you incredibly sick) are the people who may be interested in hospice, especially when the hope of recovery is gone.
While the hope of recovery may be gone, you still may have hope to have some good time with loved ones and hoping for a dignified and pain-free death.
There’s no single point at which you know that it’s time for hospice care, it’s only done when you’re ready. Having some of the following may indicate that hospice care would work well for you:
You’ve given up treatments for your disease as they are not effective
Your symptoms are getting worse and require increasing hospital visits
You’re frequently admitted to the ER for symptoms, your condition has been stabilized, but your illness is really progressing and affecting the quality of your life.
You want to be at home, not the hospital or nursing home
Remember that before you enter into hospice care, your hospice team will meet with your doctor to discuss your medical conditions, life expectancy, and your current symptoms. In order to qualify for hospice, you must no longer respond to curative treatment and approaches as well as having a life expectancy of less than six month (don’t be alarmed, your hospice care isn’t immediately cut off at six months.)
Before entering into a hospice program, the hospice meets with the patient’s doctor to discuss life expectancy, medical conditions, and current symptoms. To qualify for hospice, a patient must no longer respond to curative treatments and have a life expectancy of less than six months, however hospice care does not end at six months. The hospice must also discuss levels of care, your support system, insurance, medications, pain levels, and any equipment for your home (such as a hospital bed).
After this has been performed, your hospice will meet with you and your family to carefully discuss the philosophy of hospice, your expectations, as well as what you can expect. You and your family will work with your entire care team to provide you with a unique care plan to help you best. If, after you’ve met with the hospice, you’re displeased by some aspect or another, you can always get a referral to another hospice.
How Do I Choose A Hospice?
There are an overwhelming amount of hospice agencies popping up around the country and the choice may be confusing for you and your family:
Which one is best?
How do I know what the best is?
How am I supposed to choose when they all sound the same?
A lot of us were raised in an environment in which we are scared to question the doctor about anything because they are the boss of you and your body. Times have (thankfully) changed and talking closely and asking questions of your doctor is the new normal – in fact, it’s expected. This is the time you need to talk frankly with your doctor and ask the questions you need to know, as this is you or your loved ones final choices for care.
Here are some of the questions you might want to bring up (for home hospice):
How many hospice patients does each type of caregiver have to care for
Is the hospice accredited by the Joint Commissions, or Medicare?
Can you get references from other professionals?
How often will the nurses come? Therapies? What about baths?
What should you expect from a typical visit?
Are the caregivers licensed by state and bonded?
When calling to report something to your nurse, how quickly will they respond?
Will the same people be providing care during each visit?
Has the hospice developed a treatment plan in writing that’s given to all providers to make sure your care is smooth?
How is the care plan developed for each person and their loved ones?
What kind of services should you expect in the home and at what frequency?
How much responsibility will fall to a family caregiver?
Do they offer respite?
Will they negotiate with you and your family?
What happens if you have to go inpatient?
Make sure that you and your family has receive copies of this care plan as well, listing specific duties, work days and hours, and the contact information for the hospice care supervisor, and each member of your treatment team.
National Agency Location Service – Search for home care and hospice by location, payment types, services offered, and more. (National Association for Home Care and Hospice)
