Tony

Tony’s wife was diagnosed with relapsing remitting MS in 1991. Her condition had little impact on Tony’s life at first but the symptoms gradually progressed in ways that have been life-changing. His wife is now completely dependent on him and the caring services which he co-ordinates.

Tony’s wife was diagnosed with MS in 1991, initially in Japan and later confirmed in the UK. In retrospect Tony recognises that her impaired abilities in skiing and cycling were due to symptoms of MS. For some years following their return to the UK MS had little impact on Tony’s life, but gradually the symptoms progressed in ways that became life-changing. Tony identifies some key stages where MS had an impact on what he/they could do. First of all, he decided that he couldn’t apply for a job that would keep them in Japan. Later, his wife’s need to use a wheelchair signalled significant change in their life, followed by a point when he could no longer care for her unaided. She now uses a wheelchair both inside and out of the house and has twice daily help from social services carers to wash, dress, get up and go to bed. Tony has to be present during all these procedures as the carers are not allowed to use a hoist unaided. Tony shops, cooks, helps his wife to eat, and gives her medication. She attends a day centre once a week, a Crossroads sitter comes for two-three hours weekly so Tony can do the shopping, and he pays another sitter to spend six hours with his wife each Thurday so he can keep fit by playing golf with his friends. Tony emphasises the importance for carers of keeping fit and healthy because his wife is completely dependent, as he puts it, living her life through him.’

Tony is a very active carer, regarding himself as an expert in his wife’s, and his own, needs. Consequently, he is able to play a key role in negotiating with health and social care agencies regarding the services they provide. Over the years he has also taken on wider roles in relation to MS, serving on the committee of the local MS Society branch and helping to develop the support services for people with MS in the armed forces. He has also made efforts to influence welfare policy through his MP when he discovered that payment of Carer’s Allowance stops when you reach state pension age. This is on a point of principle rather than for his own needs as Tony readily acknowledges that he is in comparatively fortunate financial circumstances.

Tony regards his caring responsibilities as a job to which he feels he has adapted well through a process of accepting certain limitations imposed by his wife’s condition and by establishing a routine to manage daily life. It is a job which he feels his professional life in the armed forces prepared him well, but which he now cannot do without what he calls his support group,’ a network of people who make vital contributions to the work of helping him care for his wife.

When he retired from the RAF, Tony considered applying for a job in Japan but decided against it when he thought about how his wifes MS was progressing.

Age at interview 72

Gender Male

Having a good occupational pension gives Tony financial security, so the loss of Carer’s Allowance when he reached 65 didn’t make that much difference.

Age at interview 72

Gender Male

Tony’s two sons are both supportive. One of them lives in Australia so they keep in regular contact on Skype.

Age at interview 72

Gender Male

Tony was secretary of a local MS Society branch for nine years and helped with a regional reorganisation. Later, he campaigned for changes to the rules about entitlement to Carer’s Allowance after the age of 65.

Age at interview 72

Gender Male

Tony describes how his wife received the diagnosis in Japan. He did not go with her because he didn’t realise what they were looking for.

Age at interview 72

Gender Male

Tony didn’t get any information when his wife was diagnosed in Japan. He got in touch with the MS Society and, back in the UK, made the best use he could of the local health services.

Age at interview 72

Gender Male

Tony describes how he has had to work at getting help and support to care for his wife.

Age at interview 72

Gender Male

Tony was unsure at first about the system of direct payment. But he has found that paying for care services himself, with money supplied by the council, gives him more flexibility.

Age at interview 72

Gender Male

Tony describes the increasing impact that MS has had on their lives over many years.

Age at interview 72

Gender Male

Tony talks about being an expert carer.

Age at interview 72

Gender Male

Tony had to change their wheelchair adapted vehicle because his wife couldn’t see out of the window from her wheelchair.

Age at interview 72

Gender Male

Tony was depressed at one point but now he has got a routine, and a support network, he says he has got past that stage.

Age at interview 72

Gender Male

Tony thinks about caring as a job, always looking out for the best ways to help his wife.

Age at interview 72

Gender Male