Today I had the privilege to go out with Ramona, one of our nurses on two home visits. The first patient, Laura, was a 42 year old woman with ovarian cancer. She is pretty, fine boned young woman, very vibrant, positive and colourful (literally with different coloured nails on each hand and feet). She was diagnosed three years ago and was operated on seven times within a short - six month time frame. Her story terrified me as she is so similar in age, she has twin girls aged 14 and is divorced. She worries about her children's futures should anything happen to her and this plays on her mind given that she is permanently bed ridden as the multiple surgeries have left her with two open wounds which now will not heal. She does not trust any doctors other than the ones through the Hospice as when she was in hospital being operated on and in recovery the doctors would come to her saying that they were there to simply give her an injection, then would sedate and operate on her without consent. Truly frightening. She now does not know the status of her disease, the progression or whether she is in remission. She refuses the aid of hospitals, ambulances or any other health care professional but our own.
It is strange how empathy truly makes a situation hit home. I have been in a state of shock, my heart aching for her and her family. I met her daughters, Anke and Anika, they were so happy and positive, showing me their art work, and talking with me in fluent English as their whole family does. Laura had a successful teaching career prior to cancer. She now spends much of her time investing in artistic expression and with this she is extremely talented. I did suggest that she thinks about selling her artwork as this would be a source of income that the family needs to support both her and her children's needs. If you have any other ideas, please let me know. I will take my camera next time to show you photos of their work, I believe that you will be as impressed as I was.
The next trip was to visit Marius, he was diagnosed with Multiple Sclerosis twenty years ago. He is now today incapacitated with no movement from the neck down. He can feel his arms, his legs, his torso but his body is now physically wasted from lack of muscle use. He speaks very fluent English, like Laura and has a quick and active mind. He was very chatty and quite happy to share the experience of his disease and how it has affected him and his family since the initial diagnosis. The degeneration of his body started at age31 when he lost the use of his legs. This terrified his wife who divorced him soon after and took their two sons. He lost his home, and was living in a car, so embarrassed by his situation and his dissolution of his marriage that he was unable to tell his family, his friends. He now lives with his sisters who take care of him on a daily basis, the best way they can. They are not wealthy though so he lives in a tiny apartment with very little room for Ramona to navigate around in order to clean and help him. She visits him once a week to thoroughly bathe and look after him. His sisters, while knowing their familial obligation is to help him, are somewhat resentful by the situation of reverting to full time carers. It is up to Ramona to clean up after days of no attention apart from feeding, this means dirty diapers, full external catheter bags etc. He is lonely given that the Hospice are the only ones who provide him with proper carer assist and also volunteers to talk with him. His sons do not visit, sadden by his situation, and like his mother afraid for what their future might hold.
Ramona is amazing in terms of her ability, the visit with Marius took literally hours as she cleaned, shaved, washed, clipped his hair, finger and toe nails. I helped as much as I could but she does this solo every single week. I was stunned by her kindness and commitment, unfortunately this nursing gene completely surpassed me so watching her, and while I was speaking with Marius, I was in awe.
I am drained, emotionally, from such visits. Laura is a palliative care patient, Marius is with the Hospice as no one else can look, or will look after him. Both situations are heartbreaking. I wish I had my children, my parents right now. I wish I could hold them and tell them just how much I love and miss them. I am grateful to live in a country with a strong robust health care system that looks after everyone that requires it.
Can I also add a comment about the HUGE amount of pride I have for the company I work for. I met with Marius and Angela (past PULSE volunteer) from GSK Brasov yesterday, both who have offered their expertise and assistance to support the creation and implementation of the Hospice Intranet and dedicated employees to a volunteer day activity. I have also had similar conversations with GSK Bucharest, UK, USA (with Courtney - another PULSE volunteer) and Australia who have offered different but essential support to the charity. Thank you so very much. I am, and I know the Hospice definitely is so appreciative.
Marius (our patient) gave me one piece of advice as I left today. Take nothing for granted, live your life like you have one day remaining. I intend to keep to this as should anyone who reads this blog.
Love to you all.
Dani xxx
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