Patience’s husband already had MS when she met him. He proposed to her on their first meeting and they married a couple of years later. Although he is now profoundly disabled, Patience is determined to create an effective care partnership with social services so that he can remain at home.
Patience’s husband already had MS when he proposed to her, on their first meeting in 1997. She was working in a unit where he was having respite care. She moved to live with him, to settle him’, without committing herself at first to a long-term relationship. After a couple of years she decided that she did want to marry him, although she did not realise how difficult it would become to look after him. Initially, they lived with his parents but eventually moved into a house purchased for them by a Veteran’s organisation. Patience recalls that her husband’s family could not cope with his MS, with a young man in a wheelchair, and as she has no family in the UK she was left alone to care for her husband’s increasing needs.
In 2005 a pressure sore became the outward sign of Patience needing more help. The solution proposed was for her husband to go into a nursing home. He lived there for two years but the occurrence of two further pressure sores, and other signs of what Patience calls negligence’ made her determined to care for him at home. A long battle followed with the local authority, social and health services, mediated by her MP and an independent advocate. Patience won this battle and her strong message to others is never to give up in pursuing what you know to be right for the person you love who is affected by MS.
Patience has worked hard to get health and social care professionals to work with her in caring for her husband. She thinks the determination and drive which have turned her from a quiet, shy person into somebody who is prepared to stand up and argue come from her upbringing and her religious faith. She no longer fears anything and takes each day as it comes.
Patience sees herself as a person who makes a choice to be positive, even when things are dark. Despite all the challenges she has faced, and continues to face, she declares that, I love my life.’ And despite her commitment to speak up on behalf of other carers, she sees herself first of all not as a carer’ but as a wife who loves her husband and who wants him to have the best life that he can have. To her, he is a normal person, not to be identified with, and stigmatised for, his disabilities.