Being separated from a loved one with dementia is particularly difficult when they have no way of understanding your absence. Tony and his wife Pauline, who has dementia and lives in a nursing home, have been kept apart because of coronavirus.
Tony Claydon bristles with pride and love when he talks about his wife, Pauline. They have been married for over 49 years.
Pauline, who has young onset Alzheimer’s disease and now lives in residential care, first showed symptoms in her late fifties.
Tony has been supporting Pauline for twelve years and is her most dedicated advocate. He would help her with everyday tasks, such as feeding and drinking.
A virtual presence through video calls
Tony used to visit Pauline almost every day, but he hasn’t been allowed to be with her since the beginning of the coronavirus lockdown in March, this year. The care home hasn’t allowed access to anyone except healthcare professionals.
Pauline had a stroke four years ago. Currently, she cannot walk or talk and is blind in one eye. She needs to be manually turned in the night, and a hoist is required to help her from bed. Tony is the only person Pauline really responds to.
Tony says, ‘I am really worried about Pauline. I worry that she will feel alone. She won’t understand what is going on. I know she is not eating as well as she normally does.
‘She is just distressed. And I am not there to reassure her.’
Despite some technical challenges, Tony has managed to place some video calls to Pauline with help from care home staff.
These have been some comfort to Tony, as Pauline responded to his voice and gave him a signal to say she could hear him. But he says those reactions are only occasional, and are becoming fewer as the weeks under lockdown pass by.
He believes that hard pressed staff simply don’t have the time to give the personal attention to residents that relatives can. And that 1-2-1 care is vital for resident’s quality of life.
Tony says he would go to ‘any lengths to protect Pauline’ should he be allowed to visit her in person.
‘The worst thing is that I think there are solutions that could be put in place. I think that with some common sense and proper risk management, I could see Pauline.’
“I could wear protective clothing. I could see Pauline in the garden, and not have any contact with staff or any other residents. I don’t even need to go inside the building. I know it would make a real improvement to her sense of wellbeing – and mine!'
Understanding the reasons for the ban doesn’t make it any easier
While Tony understands the reasons for their separation, the plight of people living in care homes is constantly on his mind.
Tony was asking for proper coronavirus testing in care homes within a week of the lockdown beginning. He was worried that people in care homes were simply being forgotten.
‘People in nursing homes with dementia often have multiple serious health conditions. They are vulnerable to the virus hitting fast and fatally.’
Tony has been observing the lockdown very strictly and is concerned that care workers who regularly use public transport present more of a risk to Pauline than he does.
This feeling is made worse given the universally acknowledged lack of adequate testing and personal protective equipment (PPE) for care homes.
‘I seriously think there is a chance that the last time I saw Pauline, before the lockdown, could be the last time I ever see her.’
Fighting for change
A large number of care home residents have died because of coronavirus. Following successful lobbying by Alzheimer’s Society, the daily death rate now includes care home deaths.
Tony is glad that the government have changed their policies, and that care home residents are now being recognised as important.
But even though those improvements have happened, he still worries about the future.
'What is the policy for lifting the lockdown in care homes? Will visitors go in one at a time? Will we all have our temperatures be taken?
'I am happy to do anything to see my Pauline again. But the government haven’t said anything about the rules for care homes over the next six months.
'I feel like once again, they won’t do anything unless they are pushed into it.
'That is why we need organisations like Alzheimer’s Society to campaign. So that people in care homes, and the people who love them, can cope in the face of this awful virus.'
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