Luisa Miguel

Palliative Care Support at Home 
I am truly appreciative of all the work that the association Amara does in the area of Palliative Care in Portugal and I am personally very grateful for all the support I received in particular on three occasions related to the illness which devastated the life of my father – Mariano Miguel – when he was diagnosed, in October 2006, with a Pulmonary Neoplasia still in the initial stages, little after his 72nd birthday. 
Acknowledging the existence of an oncological illness of this nature had a overwhelming effect on my father's personal life on various levels; however, right from the beginning he was open to following all the recommended medical advice thoroughly, patiently and courageously despite having been told by the doctors that his tumour was malignant and inoperable. As there was no time to loose and given that the tumour had provoked a thrombosis in the superior vena cava and there was a risk that this would happen again, chemotherapy treatment followed two weeks after the verdict was pronounced. However, four months later, in the light of the uncontrollable advance of the illness and of the physical suffering my father was undergoing, it was decided to move onto the last phase of treatments which consisted in radiotherapy. At this stage my father was already so fragile that these treatments required internment in hospital. My father then entered the terminal phase of his illness and the need to find support at home from a professional team with high standards became pressing in order to prepare him for the end of his life. 
At this time of despair for my father and all the family, Amara appeared like a beacon of hope, bringing moral comfort through the work of its volunteers who became regular visitors to my father's house just a few days after the request for help was made by telephone to the association's psychotherapist who demonstrated deep concern and a desire to provide assistance immediately. From the first moment the first volunteer's specialised professionalism manifested in tenderness, humanity and understanding was evident in relation to my father. Of her complete dedication and commitment to her work as a volunteer I essentially keep images of focused attention and patient respect for my father in the conversations they had over many hours, in her phone calls often after visiting hours, in the introduction of a climate of contagious joyfulness which made my father want to smile again. The well-being not only of my father but also of the closest family was always her utmost concern during the whole period she accompanied us. Two months later on account of a deterioration in my father's health and my need to rest (I was his primary carer), we received the additional help of a second volunteer who alternated his visits with that of the first volunteer. In the time he dedicated to my father this second volunteer was also able to envelop him in serenity and peace on account of the confidence which his friendly and attentive presence inspired in my father. In his voluntary work he demonstrated his commitment to help and a profound recognition of the turbulent situation my father was facing. I cannot find appropriate words to describe how grateful I am to these two Amara volunteers who managed to bring back happiness into in the last four months of my father's life, who managed to return to him his lost world, his self-esteem and the necessary confidence to face the final part of the journey which was approaching too fast in relation to both his and our perception of time. 
Following its own course, death occurred shortly afterwards. My father's respiratory problems were drastically aggravated in the last week of July 2007. His enormous physical resistance combined by a strong desire to live meant that he withstood all the emergency medical interventions but his life ended on 29th July 2007. My father died. He was finally free of the great physical and spiritual suffering which the prolonged illness had imposed on him since its appearance. 
In the months that followed I continued to receive the unconditional support of  the Amara volunteers who recommended I should receive some help from the association's psychologist. I had great difficulty in admitting to this need and I was unable to enter into the mourning process. As a result for several months I remained immersed in feelings of anguish and sadness on account of the absence of the person I loved the most. Finally in March 2008, by happy coincidence, I met other Amara volunteers who invited me to participate in Amara Clube de Partilha (Sharing Club). This was an important occasion to begin to express feelings, ideas and repressed memories about the whole experience of loss I had been through. The active listening and great understanding of the volunteers I met there meant that I felt I had found a place and acceptance to talk about subjects that were not normally brought up in the family environment. Stimulated by the reading matter suggested by the members of the Club, I began to want to become more involved in this atmosphere of reflection and inner discovery and all the negative thoughts I had in relation to illness, suffering, death and loss underwent a reversal. I learnt that I needed to face my own fears in relation to these issues. Essentially these are unavoidable subjects related to our existence as human beings and, given our condition of beings destined for death, should not be shut out of our consciousness. Finally through the Club meetings I came to realise that I needed to face my thoughts with specialised help in order to make definitive repairs to my emotional state. Again the volunteers suggested that I should seek psychological support from Amara. This time I did not hesitate, I was ready to delve into myself and undertake this work with great commitment. I am profoundly grateful to all these members of the Club for the personal involvement, guidance and advice they gave me because they have contributed to my emotional well-being and my development as a person which allows me to share more and be more attentive to those around me. 
I was very well guided in the last stage of acceptance of my father's death by the Amara psychologist. Her enormous experience in accompanying people and children in mourning enabled me to feel the necessary confidence, from the very first session, to release my inner traumas related to the hard times I had been through recently. Her attentive and interested presence helped me feel supported in order to overcome some of the feelings of guilt, frustration and impotence I was experiencing for not having been able to prevent all the suffering my father went through. Throughout the sessions the Amara psychologist patiently led me to an understanding of the emotional state of some who is facing their death and of what might take place in their most intimate thoughts and memories in their last hours or moments of life. My father had prepared himself for death even if the family had not completely acknowledged this. I then understood that this final task of someone who is facing the very end of their life may sometimes be undertaken when he/she is alone through intimate confrontation with their own self even independently of the constant presence of a close carer. The constant and generous help provided by the Amara psychologist allowed me to completely reorganise the story of my life in just a few months. I felt I was recovering everything I had left behind during the months of torpor and apathy. Shortly before I terminated my therapy I was able to undertake an intense and beautiful symbolic ceremony in memory of my father. Finally I was able to express everything I wanted about my father, the thanks and final farewells which did not take place  during the last hours of his life. Nowadays (18 months after the death of my father) I experience a feeling of great inner balance and a constant state of peace and joy when I think of him. No anguish or despair. Now I understand we will always be spiritually together regardless of the level of reality on which we might meet. We are united by a powerful love which goes beyond death. I also came to understand that there is no point in fearing death, we can in fact welcome it with confidence and complete abandon because the process of physical transformation does not abolish the immortality of the soul. Between the life which disconnects from this material plane to take on another transcendent life, there is death. And death is only a second between those two levels of reality. Having been able to attain this state of mind of renewed optimism in relation to the marvellous experience of life which is bestowed on us in this terrestrial world with all its surprising and unique events is due to the generous and dedication support of the Amara psychologist to whom I shall always be indebted for her enormous contribution to my emotional recovery. I would also like to thank the whole Amara team for everything they did for me and my father – the accompaniment and support provided by Amara at home improved the quality of my father's life at the end of his personal journey, enabling him to remain at home in familiar surroundings which contributed enormously to maintaining his will to live and fight against his illness. 
Luísa Miguel 
  • Portugal
  • Written by: Luisa Miguel
  • Wednesday, 26 August 2009

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