John Y
John’s wife was diagnosed with Multiple Sclerosis fifteen years ago when she started experiencing pain in her spine and neck, since then her condition has gradually deteriorated. John carries out the majority of care for her along with working full-time.
Fifteen years ago John’s wife started experiencing pain in her spine and neck. This pain persisted over a long period of time and eventually John persuaded his wife to visit a GP. Health professionals suspected she may have MS or osteoporosis and referred her to the hospital. After further tests it was confirmed that she had MS. Soon after the diagnosis she started using sticks to aid her walking. Since then her condition has gradually deteriorated to the point where she can no longer walk, is often incontinent and has her food cut up for her.
As John’s wife’s condition has worsened they have made certain adaptations to their living arrangements. Before the diagnosis they lived in a maisonette with many stairs, they then moved to a house where only the bedrooms were upstairs. After moving they installed a stair lift and more recently built an extension to accommodate a downstairs bedroom and a walk in shower. John also renovated the bathroom six years ago so it is more suitable for his wife’s needs. John feels annoyed that no government funding was provided to pay for all these adaptations especially after they have both paid taxes and worked.
The majority of caring responsibilities are carried out by John, with the exception of carers who visit during the day while he is at work. John describes how physically and mentally tiring being a carer is; he often feels exhausted and gets frustrated that they cannot lead a live a normal life like everybody else.’ He believes the stress of working fulltime along with caring has affected his health and wellbeing. Occasionally he arranges respite care and goes on holiday alone to rest, however while away he often worries that something might go wrong at home.
Coping with MS has put a strain on their relationship and at times the stress causes them to argue. Their children also find the situation difficult to cope with; John wishes they could help more with care duties, but at the same time wants them to be able to get on with their own lives. Although times are often hard, John is wholly committed to his wife and their relationship and will always be there to provide care and support. John worries about the future and how they will cope as her condition worsens. He feels comforted when meeting others in similar situations because they understand one another and he can learn from their experiences.