week 44: this week i'm gonna... provide palliative care to the sick
Graham Perolls first visited Romania as a tourist in 1975. A chance encounter with a young Romanian couple in the medieval City of Brasov led to a lasting friendship and a deep interest in Romania and its people. He returned several times throughout the seventies, and on these visits began to notice a progressive decline in people’s living standards due to the policies of the current dictator, Nicolae Ceaucescu.
Separately, in 1980, Perolls' father died of cancer. The care his father received inspired him to set up a hospice charity, the Ellenor Foundation, and he became very involved in the hospice movement.
In 1989, Perolls had the opportunity to visit his Romanian friends again and was horrified by what he saw - years of communism and the resulting revolution had left the city's infrastructure in ruins. Homes were without electricity and people were waiting for bread in the shops at 4 a.m. There were scores of dilapidated institutions and abandoned children left in unimaginable conditions. After seeing first-hand the appalling conditions in the local cancer hospital and orphanage, Perolls knew he must do something to help.
Building on his experience with the Ellenor Foundation, Perolls founded Casa Sperantei (or "Home of Hope" in Romanian) in 1992. It was the first hospice charity ever established in Romania. He grew a small team of medical staff and volunteers who visited local hospitals to assist in the care of terminally ill patients and educate existing hospital staff.
Over time, the organization grew to include services for terminally ill children and specialized training for doctors and nurses. In 2002, the first in-patient teaching hospice in the country was opened, with 13 adult and 7 children's beds, an outpatient clinic, and a school for severely disabled and sick children in the basement.
Since then, Casa Sperantei has evolved and grown into Hospices of Hope, extending its hospice care programs to surrounding countries and opening multiple facilities to provide palliative care and training. As Perolls states, "It is always the patients who should have the last word. It is their faith in adversity, their courage in hardship, and their enormous gratitude to all who help them, that gives us the inspiration to carry on this work."
Hospices of Hope is the leading palliative care charity in Southeastern Europe, providing physical, spiritual and emotional comfort to patients at end of life in Romania and surrounding countries for over 25 years. Their mission is to improve quality of life for the terminally ill and their families in the region through increased provision of, and access to, palliative care services and training.
Hospices of Hope also lobbies for policy changes at the government level in Romania that will lead to hospice/palliative care becoming available to the majority of the population, and they aim to influence the governments of the surrounding countries that do not currently have palliative care services or adequate systems in place to care for those who are terminally ill.
Since inception, Hospices of Hope has brought care to over 15,000 patients and has supported over 30,000 family members. They have trained over 12,000 caregivers on palliative care practices and have sent over 780 children on summer trips.
Please watch the video below to see more about Hospices of Hope.
One of the many people helped by Hospices of Hope is Marta, a 9 year-old girl living in Bucharest with multiple health problems (ischemic encephalopathy, epilepsy, spastic tetra paresis, microcephaly, cleft palate, severe psychomotor retardation, and glaucoma). Marta’s father left home because he could not cope with having a sick child, and her mother is unemployed as she needs to be Marta's full-time caregiver. Marta's sister, Maria, is 7 years old – a bright child who is doing well at school but cannot afford books.
Marta's family had been living in a cousin's very tiny apartment - so small that the oven was located in the shower! When they were told they had to move out, Marta's mother was anxious; she could only afford a house in the countryside, yet Marta needed to be in the city near medical services. Hospices of Hope stepped in and provided temporary housing for the family while social workers searched for a more permanent housing solution.
The Hospices of Hope pediatric team now visits them regularly to provide medical care. Social workers help them with practical matters, and a physiotherapist provides regular therapy sessions. Marta visits the hospice sensory room, which is particularly beneficial to her as she is blind and severely disabled. Marta's mother attends training sessions for caregivers and is able to meet other parents of sick children. The whole family is able to attend activities in the day center.
After one month of help from Hospices of Hope, the family has experienced a world of change. Not only is life better for Marta and her mother, but for her sister, Maria, as well. The family is assisted by a network of professionals and is surrounded by other families going through similar hardships, providing invaluable support for Marta's mother and sister.
Notes for this week:
- November is National Hospice and Palliative Care Month.
- Our collective givetwig donation will sponsor home care for approximately 25 patients for one week.
- For further information regarding Hospices of Hope, please check out their website.
this week i'm gonna donate to Hospices of Hope.