Roger’s wife Luise was diagnosed with motor neurone disease in 2004, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.
Luise first started noticing weakness in her fingers in 2003, about a year before she was diagnosed. She then had a few falls, and found one leg was also getting weaker. At first everyone tried to reassure them it was not MND, but Roger suspected it was. This was confirmed after EMG tests in August 2004.
Her symptoms got steadily worse. They had various aids to help, including wrist supports to help her eat, a splint to support her foot, bathroom adaptations and a riser chair. The occupational therapist provided excellent support and anticipated their needs, and the MND Association helped with equipment. Sometimes, however, they had problems getting equipment they no longer needed taken away. When Luise could no longer manage the stairs they had an extension built so she could live downstairs, but they had to pay for this themselves. It included a wet room with hoist to make showering easier. For the last few months she also used a Lightwriter.
She was a strong person who never complained, and drew comfort from her Catholic faith. Roger and his sons wanted to care for her at home themselves, and one son moved back into the family home to help, while the other son came over regularly and helped with things Roger no longer had time for himself, such as keeping up the garden. It was a full-time commitment to provide all the care, but with both his sons and supportive parishioners and friends involved they had a good team. One neighbour designed the downstairs disabled accommodation for Luise.
For a while, they had one day a week respite care at a local hospice, but once Luise could no longer speak she found it frustrating and so they stopped using it. At one stage they had to have emergency respite care when Roger had an operation and was unable to lift for 6 weeks. Luise stayed at a Sue Ryder Home for 2 weeks which was excellent. She was then supposed to come home with a home care package organised by social services, but this fell through and she had to transfer to a nursing home. Her family were not happy with the quality of care in the nursing home. They also found the paid carer service unreliable and preferred to do it themselves rather than pay themselves for poor quality care.
Towards the end of Luise’s life, they were supported by palliative care nurses from the Iain Rennie Hospice at Home organisation, and a specialist community nurse. They had seen a doctor to discuss whether Luise should have a PEG shortly before she died, but in the end her condition deteriorated too quickly. The specialist nurse asked if they were sure they did not want her to go to hospital, but Roger felt strongly that he and his sons could continue caring for her. A priest came to give her the last rites, as her breathing was becoming more difficult. She died the next day, at home in her own bed.