A MAN whose wife self-diagnosed herself with a rare form of dementia through watching a television programme has called for more widespread knowledge and support on the condition.
Andy Norris’s wife Kim began having issues with her eyes but it was not until she heard a woman on television talking about Posterior Cortical Atrophy (PCA) two-and-a-half years ago she realised she could have dementia.
Kim had her diagnosis confirmed weeks later.
Andy, now his wife’s carer, said due to the rareness of the form of dementia, it was harder for experts to diagnose.
He told the Observer: “We’d originally gone down the optician’s route trying to figure out what was wrong with her.
“Most people associate dementia with losing their memory so it was a major shock when we found out.
“No-one in a 50-mile radius as far as we’re aware has PCA and therefore doctors don’t know a lot about it. The way Kim describes it is her eyesight is perfect but her brain sight is scrambled.”
Andy said Kim, 65, became very frustrated as her early onset dementia was slowly robbing her of her independence.
“She picks some food up with her fork and if it falls off she wouldn’t be able to see that because she’s focused on what she’s doing,” he added.
“She can look after herself but can’t look after the house, can’t go out shopping on her own and struggles with big crowds of people as she can’t process the speed of the conversation quick enough any more.”
Andy said sometimes he felt frustrated and embarrassed as he did not think he was being tolerant enough toward his wife.
An Alzheimer’s Society survey showed unpaid carers provided 83 per cent of dementia care in West Midlands, with around one in six saying they felt they had lost their identity.
“I don’t think I’ve lost my identity as I still have to go to work – it provides a respite for me but I’m trying to cut my hours down to look after Kim more,” said Andy.
“You don’t seem to get anything for being a carer and certainly don’t get any help – you don’t know what you should and shouldn’t do.”
Andy will be volunteering at Coventry’s Memory Walk at War Memorial Park from 10am on September 24.
Cash raised from the event will help the Alzheimer’s Society support campaigning efforts and other services to help people with dementia and their carers.
Visit memorywalk.org.uk for more information on how to sign up.
