‘I never look ahead – just take one day at a time’
Since his wife was diagnosed with the rare disease, Progressive Super-Nuclear Palsy, life has changed enormously for Billy Barker.
From being a woman who had an excellent education, held down important jobs and travelled the world widely with her husband, Gwyneth now has days when she doesn’t feel like leaving her bed.
Her symptoms closely resemble those of dementia, and for some time it was thought that this was what Gwyneth had.
However, she has now been diagnosed with the very rare PSP, which is also similar to Parkinson’s Disease, and Billy has spoken out this week to explain how both their lives have changed since the diagnosis.
The couple, from Abertillery, have been married for 49 years, and Billy is devoted to his 67-year-old wife.
They once travelled widely, with regular holidays to far-flung destinations such as the Caribbean, but that all changed after a trip to the doctor four years ago.
‘Gwyneth had three little bumps in the car and didn’t really know what had happened,’ says Billy.
‘She had to stop driving and the doctor picked up some of the signs and thought it was dementia. The symptoms are similar to Parkinson’s as well.
‘Her long-term memory is good – she knows her way to Cardiff, for instance – but her short term memory is not. She is very tired all the time, and would stay in bed all day sometimes if I let her.’
Billy is now a full-time carer for his wife – he has had to put stair gates up in their home so that she cannot get into the kitchen unsupervised if she wakes in the night, and he has to deadlock their front door so that she cannot leave the house while he is asleep.
‘She needs someone with her all the time,’ he says. ‘She hasn’t been left alone for the last couple of years.’
Because Gwyneth’s symptoms are similar to dementia, the couple both attend the Hospice’s CARIAD (Care and Respect in Advanced Dementia) activity sessions at the Hospice day centre in Ebbw Vale on Thursday afternoons, which Billy says she always thoroughly enjoys.
‘She doesn’t always like going to places, but she loves coming here – playing games, singing and eating cake!’
Billy also receives support from the team – from the Hospice and Alzheimer’s Society – who run the activity group and gets to meet other carers in similar positions to himself.
Despite his situation, he remains stoical and positive about his new way of life.
‘I never look more than a week in advance,’ he says. ‘I don’t know what is going to happen. We take one day at a time.
‘Gwyn is my priority – I just think about her.’