Elaine was the main carer for her father for the last four years of his life. He suffered from vascular dementia and Elaine feels both he as a patient and she as a carer were let down by the system.
Elaine (60) lives in the South West of England. She cared for her father from when he was diagnosed with vascular dementia in 2002 and until he died in 2007.
Her father was diagnosed while in hospital to investigate pains in his knee. Despite wanting to go home, he was kept in hospital for a while, and, Elaine says, sedated against his will. Elaine and her brothers disagreed about what would be the best solution for their father, but after some time he returned home where he was able to live with assistance from professional home carers and from Elaine. Elaine noticed a big improvement in him when he was taken off his medication.
Although Elaine had concerns about the quality of the care given to him at home, she believed it would be best for her father to stay in familiar surroundings where he could continue his daily routines. Over the next couple of years her father’s physical health got worse and he was hospitalised several times. Elaine felt his dementia got worse in hospital, and when the doctors suggested that he would be better off in a psychiatric unit she disagreed. On one occasion, she took him home without the hospital’s knowledge to avoid him being sectioned under the Mental Health Act. When he eventually was sectioned, he had just been diagnosed with bone cancer and was very ill in hospital and Elaine didn’t think it was safe for him to be moved. She is very unhappy with the way her father was treated in the psychiatric unit, including the hygiene, feeding and medical care. She doesn’t think he would have survived long had it not been for her intervention and her background as a nurse. In the end, her father was moved to a nursing home where he died in the Summer of 2007.
In the process of working to get better care for her father, Elaine says she fell out with many of those involved. She strongly disagreed with their professional judgment. As a result, she lost trust in the professionals and she felt they saw her as a ‘difficult relative’. At one point, she says, a consultant seemed to suggest she also needed psychiatric care. She says it is difficult to remain calm when you are in a desperate situation, and she thinks there should be a service available which could mediate between service personnel and carers.
Elaine says she felt very strongly that her father’s rights and his freedom was taken away from him during this experience and that she needed to protect him when he couldn’t do it himself. Elaine’s father was from the Caribbean and Elaine herself is mixed Afro-Caribbean/White European. She says the history of slavery and discrimination makes people from her ethnic background very vulnerable when feeling their freedom is taken away. Trauma can be felt at a deeper level, she says, when there is a history of persecution and domination.