“This taboo around death is a fairly modern, Western phenomenon. Past and present, societies have dealt with death and dying in diverse ways. It is clear from, for example, the outpouring of grief at Princess Diana’s death, and the conversations opening up around the 20th anniversary of the event, that these outlets are needed in our society too. High-profile celebrity deaths serve as sporadic catalysts for conversations that should be happening every day, in everyday lives.”
There is a group of individuals around the world trying to change this taboo and make death part of life again, meaning discussions and planning need to occur! I am one of these individuals; there are many more of us.
Why the fear? What changed over the past 100 years? Death happened at home in the past. The funeral and wake took place in the home and the whole community attended and assisted with the burial.
Then WWII happened and all changed. Too much death maybe? Too much destruction? More wars followed after….and still death is taboo today. Slowly this is changing….more of us are being vocal about the need for change, for discussions, but we are also the younger generation meaning baby boomers and younger.
Funerals are expensive! Burials are expensive! The average person needs 10-20k to die if using traditional funeral homes and doing a traditional burial. That is a lot of money and many do not have it. I do not have it. I opt for a more green burial and less expensive one as I am sure many others do or will as well.
“It was not so long ago in the UK that public outpouring of grief and practices that kept the dead close were acceptable. For example, in Victorian England, mourning clothes and jewelry were commonplace – Queen Victoria wore black for decades in mourning for Prince Albert.”
Today, death has been outsourced to professionals and, for many, dying happens in hospitals. But many doctors and nurses themselves feel uncomfortable with broaching the subject with relatives. Why is this? Are they not receiving training while in school? Why no training or discussions in the work place?
To work in a hospital, hospice or palliative care unit, to work with older adults…one must realize that patients and clients will die. Heck, we are all going to die one day! Accept this fact, stop trying to look younger and live longer with unnecessary tests, medications, and treatments if there is no hope, no proof it will help.
Instead, spend time with loved ones, enjoy life, and make the most of the time we have left…
I came across this article in The Atlantic written by Sandra Joy Stein on January 6, 2015 about a child who for insurance reasons could not be cared for in the hospital any longer; so the family had a choice…….nursing home or care for at home. The parents chose care for their child at home. What would you choose? This piece grabbed my attention. This is parenting at its best, but also points out the bureaucracy of insurance companies and ‘the hoops that have to be jumped through’ to get approval for services, equipment, and treatment and we are talking about a small child here……..
See the article below:
‘“The wind blew my eyes off my face and I caught them in my hand,” my son declared, pointing to his pre-school art project. The assignment was to glue a hat, pants, shirt, mouth, and eyes where they belong on a pre-drawn outline of a human body. The hat was where you would expect it, as were the mouth, shirt and pants. But both eyes were glued to the left hand.
“Wow, that’s poetic!” I replied, and wrote down the quote at the bottom of the paper with his age, “2 and a half.” Then I taped the masterpiece to his bedroom wall.
A week later he had a seizure, which turned out to be the first symptom of autoimmune encephalitis. His body had produced an antibody that broke the blood-brain barrier and attacked his brain. Within weeks our son was dependent on a ventilator, a tracheostomy, a gastrostomy tube, a pacemaker, and several IV lines pumping multiple medications into his veins. For the next 15 months, we lived in three different hospitals. After 10 months on the brain-injury unit of the third hospital, we were informed that, due to insurance denials based on our son’s progress in rehab, we needed to either transfer him to a long-term-care facility or provide hospital-level care at home. Our decision was clear: Our only child was coming home.
Prior to 1981, providing hospital-level care at home was a virtual impossibility. Due to insurance practices and Medicaid regulations, children with critical medical needs were required to live in hospitals or long-term care facilities. Inspired by the plight of Julie and Mark Beckett, parents who lobbied to take their three-year-old daughter Katie home after she had spent most of her young life in hospitals, then-President Ronald Reagan made a significant policy change. Katie had contracted viral encephalitis as an infant, which left her partially paralyzed and dependent on ventilator support. Reagan bemoaned both the bureaucratic regulations and cost of the healthcare system that required children to stay in hospitals when better, more efficient, less expensive care could be provided at home. After considerable advocacy by her parents and doctors, Katie became the first child in the country to receive a waiver from the government to receive Medicaid-funded, hospital-level care at home. Since the inception of what is now known as the Katie Beckett Waiver, more than half a million families have gotten waivers to provide hospital-level care at home to their children.
Becoming one of those families requires parents to learn a vast array of medical, nursing, administrative, advocacy, rehabilitation, custodial, and systems-analytic skills—skills typically divided among thousands of hospital employees. Before leaving the hospital, we needed to prove that we could manage our son’s care. We had to demonstrate that we could administer all of his medications through his gastrostomy tube. We had to go to a pharmacy to fill all of his prescriptions and bring the filled prescriptions to the hospital to be checked by a doctor. The pharmacy had to be able to convert the medications that were not available in liquid form into something that we could administer via my son’s gastrostomy tube. (This is a “compounding pharmacy,” a term I had never heard before.) We needed to show that we could set up his feeding pump, prime the long plastic tubing, set the appropriate rate at which his liquid meals would be delivered, connect tubes to ports, and clamp and unclamp lines. One month before his discharge, our son was stable enough to have his tracheostomy removed so we would not have to change or suction a trach or work the various vent settings.
On paper, we seemed like ideal candidates for the challenges ahead. My husband was a pediatric nurse practitioner in a Bronx emergency room and had prior experience as a critical-care nurse. I used to run an organization that trained principals for New York City public schools and had a vast network of special educators among my colleagues and friends. Between the two of us, we had substantial experience working in thelarge, complex bureaucracies of healthcare and education. Still, we were terrified to take our son home.
He had not regained basic functionality and was nowhere close to his former walking, talking, and eating-by-mouth self. While in the rehab hospital we had watched four other children with the same diagnosis make substantial recoveries, each walking out of the hospital with no obvious traces of the disease. We were exhausted and heartbroken that after so much time our son had still not recovered. But there was no time to indulge those emotions. We had serious work to do.
Turning our two-bedroom rental in upper Manhattan into a medical facility required considerable creativity. We needed to declutter our home full of toys, books, musical instruments, and art supplies to make room for our newly medicalized lives. My mom flew in from Michigan to reorganize what she could, and give away things we could no longer use. There were deliveries of equipment and supplies—a hospital bed, a bath chair, a stander, a suction machine, a pulse oximeter (to monitor our son’s oxygen levels and heart rate), and a wheelchair—most of which were not delivered until well after we were back home, due to insurance approval processes and the dysfunctional market of medical equipment providers. We needed diapers, and they were bigger and bulkier than they’d been when he was a baby. We needed monthly supplies of gloves, feeding bags, cans of Pediasure, and syringes. In an apartment with only five small closets, we needed a hospital stock room.
Then there was the staffing. Our son’s care required a constant flow of nurses, therapists, and teachers, sometimes making our apartment as full as if we were hosting weekend brunch on a Tuesday afternoon. I made several calls to find a physical therapist, occupational therapist, speech and language pathologist, vision therapist, and teacher who would provide the necessary services at our home. We had given up on privacy in the hospital with all these people coming in and out of our room on unpredictable schedules, but it was another level of privacy loss to experience so many people in our apartment. My husband and I took turns hiding in our bedroom on the days we were both home, to get a break from all of the people our son needed but whom we did not particularly feel like seeing before we had an opportunity to bathe and get dressed.
Frustrated with the lack of support we felt from our initial group of nurses, we developed a relationship with the nurse-practitioner training program at the local university (my husband’s alma mater). All RNs studying to become nurse practitioners, our nurses (whom our insurance company’s in-network agency agreed to hire) were smart, dedicated, and completely inexperienced. We joked that we had become a teaching hospital. Some of our nurses told us that they learned more from our son than from most of their clinical-training opportunities.
As with any work environment, there were clashes between the staff, scheduling conflicts, holiday- and cold-season staffing woes, and legitimate human error. To avoid the consequences of these typical work dynamics on our son, my husband and I developed standard procedures for drawing up and administering meds, transferring our son from wheelchair to exercise mat, and keeping stock of our inventory of medications and supplies. We installed a video monitor in his bedroom and a master schedule for everyone’s comings and goings.
Prior to my son’s illness I had run an organization with 60 employees. I prided myself on being open and collaborative and encouraging of different points of view. At home I was overbearing. Depleted from the extremely long hospitalization, and traumatized by seeing my son with this dreadful illness, I found myself resenting all of the people who were there to help us care for him. I did not want them in my home. I did not like being interdependent with so many people just to keep him safe. I did not want the stander and wheelchair in my living room, the bath chair in my shower, or the sounds of the churning pump and the pulse oximeter’s alarm. I did not want to tell everyone who walked through my door to wash their hands and I was tired of the smell of Purell on mine. I did not want to spend my time making phone calls to insurance companies and doctors’ offices and billing departments and medical-supply companies. In short, I did not want to run a hospital. Most importantly, I did not want my son to suffer for even one more day.
But there was no choice. After hearing a nurse refer to my son’s bedroom as “the nurses’ room,” I went about reclaiming our space as our home. It was time to start making our days as joyful as they could possibly be. I played upbeat music, cooked delicious meals, and rearranged the living-room furniture so the new equipment could be tucked away when not in use. I accepted the messiness of our bedroom and the excessive recovery-related clutter of our living room. I took down some of my son’s old artwork (which had started to feel like a shrine to his pre-illness self) and put up new projects he and his home-based teacher had worked on together, her hand guiding his. His walls began to change and evolve as he did, showing his growth and progress and recovery.
He now attends a wheelchair-accessible neighborhood school, accompanied by a nurse at all times. Nurses continue to work overnight, but there are several hours each day that we are home, just the three of us, a family. He is still non-verbal. The feeding pump continues to churn. The pulse-oximeter alarm goes off far less frequently. He takes much less medication. Although the broken systems of supplies and insurance persist, we have figured out how to navigate them with our senses of humor intact, most of the time. I wonder if our son would have made as much progress if he were living in a long-term care facility. Home is a medicine unto itself.
I still have not taken down the preschool art project of the human figure with eyes on his hand from my son’s bedroom wall and I may never do so. It is one of my favorite things in the entire apartment. I love the metaphor of the wind blowing our eyes off our faces, and us proudly, wearily, and resiliently catching them in our hands.’
I had the pleasure of interviewing Dr. Steven Kassels this summer re: his recently published book, Addiction on Trial: Tragedy in Downeast Maine, which posted to Social Justice Solutions. I enjoy reading and read a few books at a time, so this one appealed to me as a ‘fun read’ initially but went a step further as another theme in the book is addiction. So my fun read became enjoyably educational.
If you as a reader like crime, murder-mystery, courtroom drama, and dysfunctional family dynamics, then you will like this book. If you are a reader who wants to be educated with a refreshing approach, the interwoven theme of addiction will appeal to you as well.
The College of Atlantic is using the book in its Psychology and Counseling courses and Dr. Kassels hopes that the book becomes a teaching tool in other colleges and universities. The characters are based on medical truths and by exposing the characters in such a realistic manner, the author demystifies and de-stigmatizes the meaning of addiction. But it does not stop there, going one step further to engage the reader in addiction’s medical, economic, psychological, and social impacts, while being entertained and enthralled by the egotistical yet likeable high-powered Boston attorney who travels to Downeast Maine to defend the heroin addict from away, who has migrated to Downeast Maine with hopes of starting life anew.
Discussions in the classroom focus on the individual characters, medical treatment options, psychosocial support, and benefits of talk therapy. In examining the wide range of personalities and situations that the book brings to life (relapsed heroin addict, enabling father, alcoholic parent, and the community’s reaction to the murder trial) societal biases and nuances are explored.
Dr. Kassels has had many speaking engagements, and most recently spoke in Baltimore at the Flight Attendants Drug and Alcohol Program which was attended by approximately 300 pilots and flight attendants. Earlier in December, he was invited to the Book Fair at the Union League Club in New York City.
Dr. Kassels will be speaking to the Coalition on Physician Education in Substance Use Disorders group in Spring 2015. This group includes academic deans who meet to discuss improving medical school curriculum. The idea is to utilize Addiction on Trial as a way to engage and educate medical students and hopefully to counter any prejudice early in young doctors’ training. Dr. Kassels believes that insufficient time is spent in medical schools educating about the disease of addiction, especially when so many illnesses are the result of substance abuse; much of which can be minimized or avoided if the underlying factor of addiction is diagnosed and treated proactively.
He participates either in person or by Skype in book club gatherings to talk about the characters, the trial, the sequel currently being composed, the complexities of addiction or a combination thereof. Should you be interested, please contact him to schedule a talk. There is no charge for his participation in your event; and in fact when books are sold at speaking engagements Dr. Kassels customarily donates his author proceeds and any honorarium to local charities, such as homeless shelters and addiction treatment centers. When speaking at book readings, his presentation is adapted to the type of audience and geographic region. You can easily listen to a book reading and medical discussion or other interviews at: An Evening with Dr. Kassels at College of the Atlantic.
If you are interested in reading the book, you have the option of paperback or hard cover versions; or an ebook through: Amazon, Barnes & Noble, or iTunes. The ebook version is available for 99 cents through January 8, 2015 and the soft cover and hard cover book versions are on sale as well! The book has a 4.9 out of 5 star rating! It is a great book to curl up with over the holidays, and whether you wish to be entertained or educated or both, you won’t be disappointed.
“From his initial referral to speech to his first appointment, it was 920 days — of waiting,” said mom Christine Long.
Imagine being the mom who is not working so she can stay home to informally provide speech therapy to her son that technically the government should be providing or even the educational system. This is Canada after all, which has universal healthcare and many services like social work, speech therapy and nursing services along with basic exams and tests are provided to its citizens or permanent residents through local clinics and schools as part of our taxes. There are long public waiting lists, for the actual assessments and therapies and there are wait lists for independent, privately run services, which can be expensive. In Finn’s case, the Longs say:
“Hiring a private speech therapist to work with him daily would cost approximately $4,000 a month.”
Provincial figures show the median wait time — just for initial assessment — is 31 weeks. Then there is the wait for services to actually begin. What happens to the children in the meantime? What if both parents work and cannot stay home to provide ‘speech therapy” to their child? Wait times are even longer in other provinces, Ontario, in some regions face a delay of 4 years to get intensive therapy.
According to the Parliament of Canada, an ideal EIBI treatment, children should be in therapy for 40 hours per week, 7 days per week, 52 weeks per year. Families must become an integral part of the program to ensure generalization of their child’s new skills outside of teaching sessions. In Quebec, different programs are offered in an attempt to provide more flexibility to the families. In Canada, most provinces have agreed to partially fund the treatment for pre-school children; for example, up to $20,000 per child per year in British Columbia and New Brunswick. When such a ceiling is in place, most families will opt for a less intensive program if they cannot afford the difference.
In Canada, we have a Canada Health Act which covers:
a “medically necessary” hospital service;
a “medically required” service rendered by a medical practitioner; or
“when the law of the province so permits,” a “similar or additional service rendered by other health care practitioners.”
Since the Act does not specify which individual medical services are provided, this decision is determined by each province with its provincial medical association. Therefore, to be wholly or partially covered by a provincial health insurance plan, EIBI would have to be included as a specific treatment in the province’s list of “similar or additional services” along with “health care practitioners” who provide such services.
As one who was trained as a social worker and works in the social services field-where is the justice in asking a parent to wait 2-4 years for speech therapy for their autistic child?
I am currently reading, “A Beautiful Mind” by Sylvia Nasar. Now I watched the movie with Russell Crowe many years ago and find myself comparing his character in the movie with the book. John Forbes Nash, Jr. is an American mathematician whose works in game theory, geometry, and partial differential equations have provided insight into the forces that govern chance and events inside complex systems in daily life. He went to school on scholarship at Princeton University and taught at the Massachusetts Institute of Technology. Soon after, he began showing signs of paranoid schizophrenia which included delusions and paranoia. He spent many years in and out of psychiatric hospitals, received insulin shock therapy and took antipsychotic medications. He recovered gradually with the passage of time. In 1994, he won the Noble Memorial Prize in Economic Sciences.
Why does it seem some of the greatest minds in the world are touched by mental health issues?
“He was a singular little boy, solitary and introverted. The once-dominant view of the origins of the schizoid temperament was that abuse, neglect, or abandonment caused the child to give up the possibility of gratification from human relationships at a very early age. Johnny Nash certainly did not fit this now-discredited paradigm.”
He was a bright, curious little boy who read encyclopedia’s and science books and asked his father questions about his work for Appalachian Power Company. What caused him to become paranoid and delusional? Was this likely to happen because he was an introverted child who was not interested in socialization? How is it that many years later he slowly returned to ‘normal?’ He began to give lectures, become involved with his field of interest again.
“Queer little twists and quirks go into the making of an individual.
To suppress them all and follow clock and calendar and creed until the individual is lost
in the neutral gray of the host is to be less than
true to our inheritance…. Life, that gorgeous quality of life, is
not accomplished by following another man’s rules.
It is true we have
the same hungers and same thirsts, but they are for different things
and in different ways and in different seasons…. Lay down your own
day, follow it to its noon, your own noon, or you will sit in an outer
hall listening to the chimes but never reaching high enough to strike
– Angelo Patri (from the book: A Beautiful Mind by Sylvia Nasar) This quote was one that John Nash’s mother kept in a scrapbook.
After reading “Brain on Fire” I question the diagnosis of schizophrenia for Mr. Nash and wonder was there something else going on, an infection of the brain that went untreated? Modern advances and technology allow for treatment, exams and tests that did not exist all those years ago. Can stress, lack of sleep and not enough rest cause one to become removed in a sense from reality? What are your thoughts?
Treatment occured after she participated in family week for her sister’s inpatient treatment for an eating disorder. Ashley Judd participates in an inpatient treatment of intensive soul searching, acceptance of self and to face the youth she grew up in. To no fault of her own she became a co-dependent and the ‘Lost Child’ in her family and often fell into periods of depression and contemplated suicide as a teenager.
No youth should ever have to feel this way, as no adult should either. There is so much to live for if only one can see past their internal pain, their grief, their disappointments with others and themself.
With meditation, prayer, participation in a ’12 Step’ program, journaling and recognition of the internal world, Ashley Judd is able to move on in her life and continue her humanitarian work which is extremely inspiring and motivating to me.
She goes to India, Rwanda and Democratic Republic of the Congo…..but it is her work in Rwanda that has the most impact on me because of the countries stance on rebuilding a community after the 1994 genocide where so many people were murdered, approximately 800,000 dead because of being a different affiliation that one was born into. It was the Hutu vs. the Tutsi. The rape, killing of women, children and men just because of their ethnicity. Very hard for me to understand living in the western world. (http://en.wikipedia.org/wiki/Rwandan_Genocide)
Has the world not learned, not integrated all the genocides that have occured whether it be China, Tibet, Serbia, Turkey, Cambodia, Ethiopia, Darfur and let’s not forget the Holocaust where Jews, Gypsies, lesbians and gay men along with those that had physical and mental disabilities were murdered….. It is time for all the genocides and wars to stop!
I learned that the last Saturday of each month, every citizen of Rwanda gives 3 hours to community building or helping one another-what a great idea-community service that is mandatory, but in Rwanda comes across as part of the culture- Umuganda (http://www.rgb.rw/main-menu/innovation/umuganda.html) which means community service.
The world is suffering on so many levels-poverty, lack or resources, global warming caused by mankind, unacceptance of those that are of different ethnicities, from different cultures and religions, from different socioeconomic statuses…..It is time to step in the direction of acceptance, respect, each one of us becoming a humanitarian of sorts…to learn to be happy with the basics and a little extra. To focus on family, friendships, be at peace with ourselves and each other. I hope to see this happen within my lifetime, but seeing as the world has not learned yet, I am not so sure.
A quote from Ashley Judd that resonates with me, “Accepting something doesn’t mean I have to like it. It simply allows me to accept reality as it is actually is that minute, and then move into the solutiuon, rather than obsessing on the problem. Today, I believe we all need solutions.” (pg. 354)