St. George´s Day 2013
New Newsletter Spring 2013
New Newsletter autumn 2012
As you know, AG is dedicated to supporting and improving the quality of life of terminally patients, their families and carers in the towns of Alameda, Fuente de Piedra, Humilladero and Mollina, and this is our main objective.
However, we are increasing aware that many people, particularly the ex-pat community in these towns, often feel alone, and isolated upon initial diagnosis of cancer, and many of their concerns are related to negotiating the Spanish system: knowing where to go for help, what help can be given etc. We have therefore decided to open an information point, the first Monday of every month (excluding holidays, commencing from 5th November 2012, from 10.00am to 1.00pm at our head office: Basement, Casa de la Cultura, Alameda. We will be able to offer practical advice, and information, to anyone from our communities at any stage of their cancer journey. We are also available on: 687089951. Please note, however, that we cannot give medical advice.
Thank you for supporing AG.
Past, Present and Future
was our first full year of operation and what a year it was. Following our official registration in January 2011, the most important thing we did, of course, was to help in 3 cases. With very little structure, few resources, little expertise, and no experience we did what we could to make life a little easier, for patients, family members and carers in 3 of our 4 villages.
Our involvement included:
* providing volunteer companionship
* running errands * collecting medication
* dog walking *listening *hairdressing
* providing transport/driver *interpreting
* accompanying in emergency * liaising with funeral directors
* arranging lymphatic massage/physiotherapists (through AECC)
* practical post-bereavement help
– all helping to relieve the every day pressure of living with a terminal illness and bringing a bit of normally to a stressful situation.
Early in 2011 as part of a fact-finding exercise we visited Cudeca, Benalmadena, St Joseph´s Hospice, London, and Garden House Hospice, Letchworth where we learned from others experiences and listened intently to the advice we were given.
AG´s stall at Saydo was opened.
In March 2011, Alameda Town Hall donated premises, located in the old library in the Casa de la Cultura, Alameda, which we share with the Disabled Children´s Charity. They have recently installed internet access for us. At the moment we use the office for our monthly Board meetings, a computer is installed, and we were donated a Volunteer´s database by La Caixa which will be up-and-running this month. We also joined the Volunteer Platform in Antequera which is an association to which most charities belong. They offer training course for volunteers and promote volunteer activity. Our logo, was designed and donated by Conexanet, a media company in Antequera. We also started to make formal presentations to our communities, and several fund raising events were carried out by supporters.
During 2011 the Board attended various courses, both medical and operational and Asociación Girasol developed its own blog, facebook and twitter pages, as a means of communicating and raising awareness of both palliative care and AG. Posts are in English and/or Spanish, and are updated regularly.
In September, we held our first public presentations in Spanish in all four towns. These resulted in the donation of a warehousing facility to store Saydo stall equipment and medical equipment, by Fuente de Piedra Town Hall, and several volunteers and members joined us. A half-page article appeared in La Crónica newspaper.
For Christmas we produced our first calendar which was sponsored by the pharmacies in each town, and 100 copies sold out in advance.
Our final act in 2011 was to have a Christmas Market Stall in Eroski for 3 weeks over Christmas, which involved over 30 volunteers and many months of knitting, sewing, and collecting items to sell. The funds raised were in excess of €800 and again a big thank you has to go to all of you who helped us move a little closer to the vision of providing a home-care service for terminally ill cancer patients, their families and carers.
AG follows a policy of total financial transparency. That means that our accounts will be published on a periodical basis, or should anyone wish to see them they are made available. For many people these are times of financial hardship and AG is firmly committed to caring and using all our resources wisely (financial/human). 80% of our income is destined directly or indirectly to the care of patients, family members or carers. Income for 2011 was approx €12.500 being raised from private and company donations, events, and the Saydo stall. Expenditure for 2011 included set up costs, printing material and easy-slide sheets for patients and summed little more than €1175.
The beginning of 2012 saw a change and expansion of the Board of Trustees which now comprises:
Cath Groome: President, Ana Llamas: Vice-president, Georgina Mociornita: Secretary, Steve Burton: Treasurer, Hilary Cohen: Fundraising, David Cursons: Fundraising, Margaret Magnell: Medical, Steph Mitchell: Training, Clive Smith: IT, and with varying skills, expertise, and energy will lead AG into phase 2 of its development.
The aims for 2012 are to develop our home-care service, continue to raise awareness of palliative care and AG amongst our communities, to increase our membership and volunteer bases, to improve our working structure, to continue to fundraise, to enhance community relations, to start training volunteers, and to open the office as an information point/drop-in centre. If you would like to help, just let us know: firstname.lastname@example.org
Goodbye my friend – See you later
During the weekend of the 4th of February when Asociación Girasol was celebrating its first AGM, I was visiting a friend who was terminally ill with cancer.
She had known for a while that she wasn´t going to get better and she used the time she had left to put things in their place. She made her own decisions until the end.We are all frightened of death but knowing that you are going to die has its advantages: we reconcile ourselves with family members and long lost friends, we communicate honestly, we appreciate every minute left, the flowers smell sweeter, we see everything more sharpely and the words we say have more meaning than ever.
An Australian nurse, (Bonnie Ware – Blog: Inspiration and Chai) who has worked for many years with terminally ill patients, and who has analysed the regrets of her patients says that to be confronted with their own mortality her patients grew, and had a clarity of vision, and that we can all learn from their wisdom. My friend prepared herself and above all sorted things out so that her husband, who has Alzhiemers, would be well looked after in her absence.
She even organised her own funeral.
During the last months she attended the local palliative care unit twice a week.
Volunteers would pick her up and she told me that she had a great time, meeting people in the same situation as she was, and sharing joys and sorrows, receiving complementary therapies such as massajes. A volunteer discovered she was a good artist and asked her if she would like to share her pictures with her friends in the unit. So they put on an exhibition of her paintings which everyone enjoyed and for my friend it was truly exiting as she never would have believed that the public would see her works of art. After the exhibition she tried her hand at pottery and created the lovely jug in the photograph which she generously donated to Asociacion Girasol. She spoke a lot about the personnel in the unit: the volunteers and professional staff, all of who made her feel like a person and not a patient.
She isn´t with us anymore, but I remember her sense of humour, her laughter, her intelligence and the practical way in which she confronted her life and her death and every time I look at the jug I think of her, and every time I touch it I caress her face. Goodbye my friend. See you later.
HABILIDADES DE MOTIVACION PARA EL CAMBIO
En Cuidados Paliativos existen muchas situaciones en las que será necesario motivar un cambio. Las más frecuentes son:
.Flexibilizar una conspiración del silencio.
.Fomentar el cumplimento de medidas terapéuticas.
.Realizar cambios en organización familiar de cuidados (horarios, descansos…)
.Realizar ajustes en el equipo asistencial.
Flexibilidad para cambios: poco a poco, de uno en uno, reforzando los aspectos positivos, la herramienta del lenguaje no verbal que con gestos, miradas y contacto, suplen la ausencia de palabras difíciles de pronunciar, no juzgar, ponerse en el lugar del otro, ofrecer alternativas.
Proponer usar palabras de alivio, en vez de curación. En otras complicaciones que vallan apareciendo también trataremos de aliviar, apoyar y con disponibilidad cuando lo vayan necesitando, los pacientes necesitan sobretodo saber que no los abandonaremos y que sus sufrimientos serán aliviados, que les consolaremos y acompañaremos.
Forward PlanningPLANIFICACIÓN ANTICIPADA DE LAS DECISIONES Y VOLUNTADES (VVAS)
“Planificación Anticipada” (Forward Planning) means the right the patient has to express his own wishes about how he confronts the last moments of his life and to take decisions about himself and his assets.
“Planificación Anticipada” is a communicative, oral process which can be carried out in various ways by professionals. The patient decides how much involvement the professionals, family members or loved ones have.
These desires are written on the patient´s medical records, and one of the most important ways to register information regarding the patients health is to complete a Living Will or “Voluntad Vital Anticipada”
In Andalusía, the Living Will conforms to “The Living Will Declaration Law” (Ley de Declaracion de Voluntad Vital, Anticipada), and it is the channel by which a person can exercise his right to make decisions about health issues, which he may not be capable of doing in the future.
Dra. Sara Martínez Membrilla