Caregivers, Death and Dying, End-of-Life Care, Health & Wellness, Hospice, Palliative Care

How Caregiving A Dying Husband Taught a Journalist Appreciation for Living

PBS News Hour features a short talk by Tracy Grant, Washington Post editor, about how caring for her terminally ill husband offered an understanding of quality of life and made her own life worth living. (See link at end of blog for video).

As a caregiver, palliative care worker and hospice volunteer, I agree with what Grant communicates. We all become our better selves while caring for others. The ill teach us so much. Their gifts to us last a lifetime. The experiences can be remarkable.

Tracy Grant

Tracy Grant, Deputy Managing Editor, Washington Post

http://www.pbs.org/newshour/tag/tracy-grant/

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End-of-Life Care, Health & Wellness, Hospice, Pain, Palliative Care, Palliative Care Mexico

Mexico Palliative Care Non-Profit Holds Festive Fundraiser in Super-Competitive Environment

Mexican non-profits have a hard time surviving. One can say many non-profits, no matter the country, find it challenging to be sustainable.

In the state of Jalisco, there are over 800 registered A.C.’s, Asociaciónes Civiles, or non-profits. In all of Mexico, there are about 4,000 registered non-profits. That’s a lot of competition in a land where philanthropy, though existent, is not part of the culture.

Juntos Contra el Dolor of Guadalajara is a remarkable entity. It is a Mexican model for palliative care and hospice. Its resourceful, enthusiastic founder and palliative care educator Dra Susana Lua Nava is an ecumenical nun. Her team serves anyone of any belief system or economic background. All are dedicated to offering holistic pain relief for life-limiting conditions or at end-of-life.

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Administration volunteer Michele Carrillo, Madre Martina Zumaya Head of Nursing, Dra Susana Lua Nava founder, Dra Karla Rebollar of Juntos Contra el Dolor A.C.

In 2014 Dra Susana Lua Nava and Juntos Contra el Dolor received the prestigious state of Jalisco IJAS award for outstanding contributions by a non-profit.

Juntos Contra el Dolor’s 24/7 humanitarian effort includes not only medical attention at its 8-bed hospital but outreach and education to 65 or more patients and their families at home. For a Mexican non-profit dependent on donations, this is an achievement. Faith in the need, faith in all possibilities, and a lot of love are components of the Juntos ability to continue despite obstacles.

Every member of the team is a volunteer except the nurses. The team consists of palliative care doctors, psychologists, social workers, chaplains, and trained volunteers.

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Four social workers, two MD’s (far right), all Juntos Contra el Dolor volunteers

Juntos Contra el Dolor held its annual fundraiser, a Fiesta Mexicana gala, on Saturday, September 24.

The nuns and volunteers led by Dra Susana Lua Nava proved to be creative and super organized.
Every detail was attended to – philodendron plants, potted geraniums, Viva Mexico banners, red/green/white flags hanging from the ceilings, red/green/white bow ties over white blouses or shirts so people would know who the volunteers were, donated chocolate cake from one of the best bakeries in town, clean white table cloths and chair covers, a tequila bar, a hand-made hot organic corn tortilla corner, and a place for photos where guests could dress like a revolutionary from the Mexican independence. Fresh quality food included 10 guisados (entrees) prepared with love and served in Mexican pottery, a rarity at charity events in Jalisco. And, there was a romantic singing group Los Bohemios, plus an all-girl mariachi band dressed in hot pink and silver!!  A lively event and fun for all.
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Sweet volunteers Lola, Maria, and Nena
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Volunteer Juan with his lovely, sensitive mother – his father, her husband, passed away at Juntos Contra el Dolor in June 2016
beautiful Mexican ladies of the San Bernardo parish
beautiful Mexican ladies of the San Bernardo parish
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junior guests
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All-girl mariachi band from Guadalajara

Juntos Contra el Dolor provides weekly consultations in a donated space in San Augustin, a suburb to the west of Guadalajara. By January 2017 there will  be consultations for those suffering from pain at Lake Chapala, an hour from Guadalajara. The offices will be in the Church of San Juan Batista in San Juan Cosala.

As mentioned, the non-profit stays afloat by donations – usually in-kind support such as diapers, linen, paper supplies, fresh organic food, and new medicines.At the following link you can read what is needed and where one can make donations.  http://juntoscontraeldolor.com/Donaciones/don.html

Dr. Lua received three years of specialized palliative care training in the Canary Islands with Dr. Marcos Gomez Sancho, considered the leading palliative care physician and professor of the Latin world. Dr. Lua is a thought leader for Mexico, and author of  El Enfermo: Terreno Sagrado  (The Ill: Sacred Terrain).

Aging, Ecuador, Ecuador Senior Care, Ecuador Senior Living, elder abuse, End-of-Life Care, Health & Wellness, Humanitarian Rescue Older Adults

Abandoned Elders Rescued in Ecuador

 

Wendy Jane Carrel with Diosalinda at rescue home in Chordeleg, Ecuador
Senior Care Specialist and health journalist Wendy Jane Carrel with Diosalinda at rescue home in Chordeleg, Ecuador

For those of you who haven’t seen it before, above is a photo of yours truly with Diosalinda. She led a terrible life of abuse by family before she was rescued by a home for abandoned seniors in Chordeleg, Ecuador four years ago. If I had funds, I would have adopted her. Such a gentle, loving, sensitive soul for all she endured.

Did you notice the Dios in the name Diosalinda? Dios = God in Spanish. At the end of her life she finally has peace, protection, and safety.

 

Please find below a link to my article at http://www.CuencaHighLife.com  on how impoverished and abandoned elders are rescued in Ecuador. It is far from complete, but it is based on site visits to almost every province in the country.

https://www.cuencahighlife.com/abandoned-impoverished-elders-looming-crisis-ecuador-worldwide/

End-of-Life Care, Health & Wellness, Hospice, Mexico, Palliative Care, Palliative Care Mexico

Palliative Care/Hospice Juntos Contra el Dolor of Mexico Holds Kermes (Fundraiser)

Juntos Contra el Dolor - we are helping diminish pain
Juntos Contra el Dolor – “we are helping diminish pain”

 

Juntos Contra el Dolor, A.C., the only 24-7 palliative care/hospice in Jalisco, Mexico, held a kermes to raise funds for its humanitarian medical effort which aides patients with chronic pain, and, at end of life. The Juntos team also provides psychological and spiritual support to families of patients.

The kermes was held on a Sunday from 8 a.m.to 2 p.m. outside the Templo of San Bernardo on Plan San Luis in northwestern Guadalajara, a church with 3,000 parishioners.

A Mexican kermes is an outdoor party for a special cause. To support the cause, people buy food and drink. The Juntos kermes served tacos with birria, quesadillas, homemade jamaica (a hibiscus drink) and horchata (a rice drink). Juntos brochures were on each table.

The nurses, who are the only paid staff (except for volunteer retired nurse Rocio), were taking care of patients at the hospital around the block..

The Spanish word kermes is derived from the Turkish word kermes which originally meant a handicraft bazaar to raise money for charity. It is also derived from the Dutch word kermesse, (kerk = church, mis = mass), a festival after mass.

setting tables for the kermes
setting tables for the kermes
founder Dra Susana Lua Nava with volunteer nurse Rocio
Founder Dra Susana Lua Nava with volunteer nurse Rocio

 

 

 

 

 

 

 

volunteer nurse Rocio and volunteer coordinator Nena
volunteer nurse Rocio and volunteer coordinator Nena
social workers Silvia and Lupita
volunteer social workers Silvia and Lupita

 

sister volunteers, administrator Sara on the right
sister volunteers – Marta and administrator Sara on the right

 

End-of-Life Care, Expats, Hospice, Palliative Care, Palliative Care Mexico, Senior Care Mexico

Mexican Palliative Care Thought Leader Dr. Susana Lua Speaks to Expats about Unmet Pain Relief Needs

Dra Susana Lua Nava, a palliative care physician based in Guadalajara, Mexico, spoke to over 200 North Americans and locals at Open Circle on the Lake Chapala Society grounds in Ajijic, Mexico about pain relief for chronic conditions and end-of-life.

Her passionate presentation about the unmet needs in Jalisco state and throughout the country triggered many questions from the audience, plus more interest in bringing such services to the lake. Lake Chapala is about an hour’s drive from Mexico’s second largest city Guadalajara. An estimated 20,000 North Americans reside there during high season.

Dra Susan Lua Nava, palliative care physician, addresses Open Circle
Dra Susan Lua Nava, palliative care physician, addresses Open Circle

It is a goal of Dra Lua’s non-profit Juntos Contra el Dolor, A.C., (United Against Pain), http://www.juntoscontraeldolor.com, to educate communities throughout Mexico about what palliative care is, and show how to offer comfort care to those with life-limiting diseases. Ideally, there would be models for this care in each state. Currently, palliative care is primarily found in three large cities at regional hospitals – Guadalajara, Mexico City, and Monterrey.

In 2009 the Ministry of Public Health of Mexico established guidelines for palliative care entitling all residents of the nation to relief from pain. The challenge has been that most people do not know exactly what palliative care is, nor where to find it. Palliative medicine is often confused with pain clinics which may offer medications but do not necessarily include a holistic support team for the patient and family members during such trying times.

As of yet, there is no dedicated palliative care/hospice team  – physicians, nurses, psychologists, social workers, clergy, and volunteers working together at Lake Chapala. There have been previous efforts to establish a hospice.  (The main cities at the lake are Ajijic, Chapala, San Juan Cosala, and Jocotopec. It takes around 40 minutes to drive from Chapala on the east end to Jocotopec on the western end).

There are a number of highly talented retired palliative care and hospice administrators, physicians, nurses, clergy, social workers, and others from Canada, the U.S., South Africa, and other countries at the lake. Several groups have formed to discuss how to establish a service that can serve all populations and will endure.

DVDs of the chat by Dra Lua can be ordered at http://www.opencircle-ajijic.org

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Wendy Jane Carrel acts as translator for Dr. Lua’s talk on palliative care in Mexico

I performed a Cliff Notes version of Dr. Lua’s talk as there was much to cover in a short amount of time.

A week after the presentation to North Americans, Dr. Lua gave a public health talk on the same subject to local Mexicans at the Ajijic Cultural Center.

End-of-Life Care, Health & Wellness, Hospice, Mexico, Pain, Palliative Care, Palliative Care Mexico

International Pediatric Palliative Care Congress, Mexico, February 2016

With two days of notice I decided to attend a three-day intensive on pediatric palliative care, February 22-24, 2016 at the University of Guadalajara Medical School (Building Q).  It was part of the XVII CIAM (International Congress on Advances in Medicine Contributing to the Future of Health) and was hosted by the Nuevo Hospital Civil (New Civil Hospital) next door. The hospital is where University of Guadalajara Medical School students intern. I am glad I participated.

Until now I have witnessed palliative care (comfort care and non-invasive pain relief) for older adults with chronic conditions or at end-of-life. I knew I would be acquainted with some material. I also knew there would be quite a bit more for me to learn or hear repeated. Heart-rending stories and photos of children fading away were anticipated. And when I saw them, they surely took my breath away. Envision Marlo Thomas and her St. Jude’s Children’s Hospital efforts plus the images you’ve seen of children suffering from maladies across the globe.

Almost 100 physicians, nurses, psychologists, socials workers, and volunteers attended the 22-hour course hosted and organized by Dr. Yuriko Nakashima, a pioneer in this arena in Jalisco state, and a highly-regarded pediatrician and university professor. Yes, her name is Japanese; she is a Mexican citizen.

All speakers were excellent and exceptionally professional.

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Dr. Yuriko Nakashima, Dr. Lisbeth Quesada Tristan, Dr. Jorge Ramos Guerrero, psychologist Ortencia Guiterrez Alvarez

Presentations by special guest Dr. Lisbeth Quesada Tristan of Costa Rica, referred to as the “abuela” or grandmother of pediatric palliative care, were a stand-out. (She’s actually young). Her work and a collaboration with her non-profit Fundacion Pro Unidad de Cuidado Paliativo (see www.cuidadopaliativo.org) were celebrated at a signing ceremony which included the Director of Guadalajara’s New Civil Hospital Dr. Francisco M. Preciado Figueroa, the Director of the Old Civil Hospital Dr. Benjamin Becerra Rodriguez, and Dr. Yuriko Nakashima representing both the New Civil Hospital Department of Pediatrics and the University of Guadalajara Medical School. Dr. Quesdada is also active with  ICPCN, the International Children’s Palliative Care Network.

Dr. Quesada tackled the following subjects with enthusiasm, humor, intelligence, and wisdom:

She started with a definition of palliative care – comfort care, relief from pain, and non-invasive procedures for irreversible medical conditions, progressive diseases with no cures, premature babies, and end-of-life. She asked, do you believe in aggressive procedures with a child hooked up to machines until life’s end or should the child be held in your arms, hearing a soothing voice, feeling the vibrations of love, and feeling a sense of security?  We are not clinicians of pain only, we are mostly providing quality of life in dire circumstances.

Other discourses:

Is palliative care a right or a necessity for children?

The main things everyone should know about pediatric palliative care

When “hello” means “good-bye”

Communication and support for children and adolescents with terminal illnesses

From Cocoon to Butterfly, the metamorphosis of the suffering child

How to Deal with Dysfunctional Families

The implications of sedation

Here is a paraphrased summation of Dr. Quesada’s comments:

It is offensive to say terminally ill patients. Please be careful with word choice, think about saying “children with life-limiting diseases.”

We must be part of a new paradigm with extensive outreach, going to children in their homes. (Dr. Quesada’s non-profit also serves isolated villages in the mountains of Costa Rica)

Respect children, their rights (they have rights even though not legally competent), their pain, and their wishes

Everyone is important until the last minute of their life.

To work with children one needs huge passion.

We could not do our work without volunteers!!

“Santa morfina”, blessed is the existence of morphine to help relieve pain

“Amar es saltar.”  Saltar literally translated is jumping but the meaning here is love is a way to overcome.

Pediatrician Dr. Jorge Ramos Guerrero (who holds a Master’s in palliative care from a Spanish university) delivered passionate, thoughtful reviews of…

History of Pediatric Palliative Care

Holistic Attention for Children in Palliative Care

Medicine Based on Positive Principles

Dr. Ramos outlined the history of care from Egyptian times to the present with artistic representations, the meaning of the Latin words Hospitum (providing hospitality) and Pallium (to relieve suffering), and reminded the audience that death is a normal process. He emphasized that the primary aspects of treatment are warm care by an interdisciplinary team, and that the objective is pain relief. He reminded the audience: this is not euthanasia. We are present in all moments to create quality of life until the end.

According to INEGI (government) statistics, there are 5-6,000 Mexican children with cancer each year and 56% of these children outlive their diagnosis. Part of holistic care is asking the patient what is most important for him or her. We must put ourselves in the patient’s shoes. With regard to current medicine, Dr. Ramos advocates a newer paradigm – more patient-centered care that offers the best science, the best communication (especially the ability to listen), and the best inter-personal relations.

Dr. Cesareo Gonzalez Bernal spoke of legal implications in palliative care at end-of-life, a subject that always needs continual review. Focusing on patient rights is key. Assisting a patient to die is against the law.

Dr. Regina Okhuysen-Cawley, a Mexican-born American physician working in Houston who specializes in palliative care and hospice, spoke of palliative care as it is used in intensive pediatric care, and how successful an integrative approach can be at the end of life.

Dr Patricia Ornelas and psychologist Ortencia Guiterrez Alvarez (Dr. Nakashima’s long-time colleague at Nuevo Hospital Civil) talked about how to confront death and offered each participant exercises in imagining his or her end-of-life.

Other themes covered by other pediatric palliative care pioneers were how to give the bad/sad news, ethical dilemmas in palliative care, the importance of the nurse on the palliative care team, and spirituality of children.

Madre Martina Zamaya Tamayo, a nurse nun with a Master’s in Bio-ethics, was in the lobby outside the Guadalajara Congress to represent the only 24-7 palliative care hospital in Jalisco, Juntos Contra el Dolor. See www.juntoscontraeldolor.com. She introduced Dr. Susana Lua Nava’s book El Enfermo: Terreno Sagrado (The Ill: Sacred Terrain) to the attendees. Representatives from a dermatological supply house gave out free samples of medicinal lotions.

It was an honor to be in the company of dedicated, informed, and passionate healthcare professionals focused on comfort care and pain relief for ill children.

Note:

No medical schools in Mexico currently offer specializations in palliative care, although according to a Human Rights Watch report from October 2014, six of the country’s 102 medical schools offer some courses. Palliative care diplomas can be received from a palliative care institute in Guadalajara or Mexico City but this is not the same as 2-3 years of specialty training abroad. Mexican doctors usually go to Argentina, Chile, or Spain for this specialization. Anesthesiologists can order morphine, others cannot, unless certified by the government through special courses. And for whatever reason, according to one of the speakers, pediatricians have not been readily included in the arena of palliative care in Mexico to date.

Another note:  

It seems to be in the hearts and minds of Mexican healthcare providers to develop and implement more palliative care services for children.

Dr. Rut Kiman of Argentina, representing  the  ICPCN (International Children’s Palliative Care Network), and Diedrick Lohman of Human Rights Watch, traveled to five states of Mexico in 2015 to see if a December 2014 initiative to include children in palliative care in Mexico was being implemented. They visited the states of Guanajuato, Hidalgo, Morelos, Queretaro, and Toluca. Although they found pediatric palliative care in its infancy,  Dr. Kiman wrote “it is hoped it will soon be a reality in Mexico thanks to the efforts of professionals, non-governmental organizations, and health policy makers.”

 

 

Aging, Assisted Living, End-of-Life Care, Health & Wellness, Senior Housing Security, Senior Living

International Women’s Day – Honoring An Ethiopian Woman Who Rescues Older Adults

It is March 8, 2016, International Women’s Day.

There are amazing women (and men) on our planet. There are many whom we can honor – some are known, others are silently making contributions to advance humanity.

Last night I read a Help Age International article about Assegedech, referred to as the Mother Teresa of Ethiopia. I felt it would be fitting to pay tribute to her on this special day.

Assegedech’s story is heart-warming and inspiring. It’s a tale of a generous, sensitive woman from humble origins who happened to inherit a large property. She noted in an interview that she was fortunate to have a good father and a compassionate husband, both of whom were open to caring for those with less. She’s been on her own for many years now… in a big way.

With the support of Help Age International Assegedech expanded her home into a compound which houses almost 90 destitute older adults. It is, in addition, a sustainable community. Assegedech empowers the residents  by offering them meaningful work in the gardens, if they are able. She keeps them active to their last days.  She offers them a life of dignity.

Photo and by-line from Help Age InternationalAssegedech smiles in her garden

Despite being in her 70s, Assegedech Asfaw shows no sign of slowing down.

Many blessings for Assegedech and all others who come to the aid of abandoned, frail, vulnerable elders on a daily basis. Photos of the Ethiopian seniors can be found in the link below. The full story is worth reading.