Tony and Pauline Claydon

Caring from a distance – ‘I fear I might never see my wife alive again’

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.  

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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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I feel exactly the same and maybe worse as my mum was only just settled into a care home just before lockdown . She must feel we’ve abandoned her , it’s awful to not be able to see her , we tried video calls but she couldn’t understand it and talked about us to care home staff as if it were a photo . So all we can do is a 2 minute phone call every day , short because there’s no 2 way conversation , she says yes to every question and we run out of things to say . Sometimes she doesn’t hear or understand and sometimes she asks what time am I coming , it’s heartbreaking !

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I too am in a similar position to Tony. My Dad died in December last year,, my mum has been in residential care since April last year. Her needs have now escalated and she needs to be moved to nursing care.. We have not been able to see her since March and she doesn't understand what is happening via video link. I am a health care professional and have offered to provide my own ppe not to use vital supplies and would of course follow strict guidance. I too fear I may never see my mum alive again... 😢

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Both my parents have suffered with dementia. I am so glad that my Mum died a year ago. I and my Dad would have been desperate to be with her had she been in her nursing home at this time. I am so very thankful that my Dad can be cared for in his own home and that now one- to- one visiting, albeit outside, and keeping socially distant is possible. Just to see one another and be in the same space is absolutely vital for his wellbeing and mine. Surely it should be possible, in the context of a care home, to take precautions such a having a PCR test in advance of visiting , wearing PPE, meeting in the garden etc for loved ones to visit.

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I am in exactly the same position as Tony and have the same concerns and worries. I am also very disappointed that neither the Residents or the Care Staff have as yet been tested at my Wife's Home. I thought that from the recent high profile publicity, testing in Care Homes was supposed to be an urgent priority. Why is this not happening as we have ben told???

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Had the Tory government not ditched the Cygnus report in 2016 which stated that the NHS would not be prepared in the event of a pandemic, many lives would have been saved both within the NHS itself and the wider community. It was obvious in 2016 that Andrew Lansley's top down re-organisation of the NHS in 2010 with no consultation whatsoever with the professional bodies within the NHS was catastrophic - professionals in any field know best about their profession than any government minister who fails to negotiate with them. Privatisation has affected the overall distribution of essential PPE protective clothing and equipment. No doubt "Getting Brexit Done" was of more importance at that time which will benefit the few and not the many. And who were the architects of Brexit none other than Boris Johnson and Dominic Cummings.
So many are now suffering heartbreak in so many ways. People dying without mutual comfort from their loved ones. This also applies to people living in nursing homes and those with dementia deprived of the love and close contact and comfort from their loved ones. Had this country the 5th richest country in the world been prepared for this pandemic we would be telling a much different story now.

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This is a situation many people find themselves in. My parents have been married for 60yrs next month and have never been apart for this long. As they are both in their 80’s and dad is in full time care time is precious. It’s difficult them been apart. Mam is making herself ill with worry. There has to be a way of them been able to se each other soon in some way or another. Looking and waving through a window is not enough.

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I feel exactly the same. My mother has moderate dementia. She was still very active and you could have a laugh even though she forgot everything immediately afterwards. During lock down she fell and had a partial hip replacement.
I tried to Skype. She looked terrible, kept crying, is stuck, immobile, in her room most of the day. She said she wouldn't see me again.
There should be isolated, one-to-one scheduled appointments to see them. It is true that family members will be the most careful of all. It's shocking.

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I agree whole heartedly

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