As told by Vicky (a volunteer with the Palliative Care Education and Research Centre)
Juliet (not real name) is a 52yr old, diagnosed with Cancer of the cervix, sick for the last 7 years and admitted to the Uganda Cancer Institute.
She is under the care of the Palliative Care team working alongside her primary doctors, with the volunteers supporting her through her pain and symptom control. The volunteers were able to visit her and establish a good rapport with the main caregiver, Juliet’s sister. Juliet had advanced disease and her kidneys were failing and thus getting weaker every day. The doctors requested a procedure that would help to revise her kidney problem, but it was too expensive and the family could not afford it due to financial constraints. This was very distressing to the daughter and sister, watching their loved one in agony and in a confused state. It seemed really a hopeless situation for them.
However, the volunteers were able to liaise with the Social Worker of the Uganda Cancer Institute to raise some funds for the procedure and this was able to bring hope and a smile to the caregivers who would always cry because of not being able to meet the financial obligations.
Through the regular visits by the volunteers, the caregivers were able to share their worries and fears, which included not being able to transport their loved one’s body if she died in the hospital. This was a very painful feeling but as volunteers we informed the clinical team who then facilitated the patient discharge and also referred them to a community Palliative Care centre for continuity of care.
The family appreciated the time, help, care and love they were shown at their darkest moment and they had this to say “Thank you for loving us and visiting us. You did not know us and we did not know you but this has created a relationship between us which I would not want to end! You should extend the love to the rest of the other patients too”.
She died a few days after she was discharged back home but the family was very grateful and have remained in touch.
So being a volunteer in palliative care is both a positive and meaningful experience and it is a privilege being able to help those in need.
As a volunteer, it is important to be present for the vulnerable persons and to follow them in their various physical and spiritual distresses. However, it is crucial to possess knowledge, skills and life experience, as well as a clear role, with regular support from my mentor.
As long as what I am doing is help to the patients and families, I am happy with what I do. It does not matter what it is, as long as I am of assistance, I am happy
Vicky Kirabo (Palliative Care Education and Research Centre volunteer)