A woman watches over her dying husband, separated by a glass window – he is so sick he cannot even see or hear her anymore. The hand of an elderly parent, who reached desperately through the opening in the railing for her daughter, but was forcibly pulled away.
A son forced to talk to his mother, already bewildered by dementia, through a closed door.
Families admonished, yelled, and chased away simply because they were trying to talk to a family member.
Sally Goodman, 59, left, pictured with her husband Steve, 67, right, haven’t seen each other in person since May as Mr. Goodman, who has advanced dementia, lives in a care home that doesn’t allow visitors due to the threat asked by Covid -19
Gruesome, cruel and inhumane are words that come to mind – and they are all the more poignant because this is happening in UK care homes right now, according to an evidence file compiled by the dementia charity John’s Campaign.
While restrictions have eased across the country, massive numbers of these vital facilities are still closed, denying or drastically restricting visits.
And it seems that there is no end in sight. Last week, John’s Campaign launched a legal challenge hoping to force the Department of Health and Social Care to revise the guidelines they believe led to this situation.
The instructions, published in July, are vague – leaving most of the decision-making to individual managers. It states that homes can now ‘develop a limited visiting policy’ with ‘alternatives sought where possible’, but ‘the first priority must remain to prevent infections’.
Managers are instructed to perform something called “a dynamic risk assessment.” Martin Jones, CEO of Care England, one of the UK’s largest healthcare facilities, said last week that part of the current problem is that many facilities still struggle to get staff tested regularly.
He called the situation “extremely chaotic” and warned that many feared legal action in connection with Covid-19 deaths, and were therefore too cautious. The reality is, dozens of families are now being kept apart for six agonizing months.
The lack of clear guidelines has led many homes to introduce blanket bans that seem arbitrary, inscrutable and cause a tremendous amount of avoidable suffering.
The government’s position may be understandable: In May, Secretary of State for Health Matt Hancock promised ‘a protective ring’ around the healthcare sector.
His words seemed particularly hollow when it emerged that at the height of the outbreak, the NHS was ordered to clean up 30,000 hospital beds – meaning homes had to take in thousands of infected patients. Mr. Hancock hadn’t even spoken to nursing home bosses before that.
Health Secretary Matt Hancock wanted to “throw a protective blanket around the nursing home system,” but dementia charities have warned that this is causing a “hidden catastrophe,” as patients with such conditions deteriorate and die while their families falter.
Staff also did not have access to personal protective equipment, which increases the risk.
The result? More than 3,000 residents died in just one week, according to a recent report, a total death toll of about 20,000 according to official statistics.
They want to avoid another disaster like this. But is this the way?
Charities for dementia have been warning for months about the “hidden catastrophe” ahead if restrictions are not lifted. Draconian measures and social isolation have undoubtedly led to the decline and death of dementia patients – while families have become confused.
The Office for National Statistics reports a disturbing 52 percent spike in deaths from dementia itself, which is unrelated to the virus. But the magnitude of the loss is now almost impossible to fathom.
It has been anecdotally revealed that families have discovered that loved ones had been left in bed for weeks and were actually starving because the staff couldn’t feed them. Others, deprived of any contact, “just gave up.”
“ We watched Mommy get thinner and thinner and deteriorate before our very eyes on a weekly 15-minute window visit, ” writes a John’s Campaign legal documents officer. “It has been five months of torture.” The lady in question has since passed away.
In another story, a young woman from Stockport, near Manchester, says she just wanted to be able to hold her mother’s hand before they lost her forever. That never happened.
Some patients have been told that they will only see their family in person when they are about to die
She added: ‘There was a pub full of people next to the house where my mother was dying. People could go to the pub, but I couldn’t see my mother, who was dying, for more than 30 minutes. ‘
Another tells of a father who was so confused when he saw his daughters through a window that he “hit” his head against the glass in an attempt to get to them, over and over.
Sally Goodman, 59, says she is terrified that she won’t see her husband Steve, 67, who has advanced dementia, until he dies.
In early May, Steve developed Covid-19 and was hospitalized for four weeks. Sally had been allowed to visit him every day – in full PPE – while he was an inpatient. But once he recovered and was back in care, that stopped.
Sally, from Skipton, North Yorkshire, says: ‘Since then I have only seen him through the window or on Skype, both are hopeless because he has no idea what is going on.
“It is clear that he is increasingly withdrawing and deteriorating.”
Angela McIntyre, a retired emergency physician, has not seen her 92-year-old mother Joan, who has dementia and is in residential care, for six months. Angela says, “Mommy doesn’t understand why she can’t visit, why her family has abandoned her. It is as if care homes have become prisons. Like many others, she praises the workers in nursing homes. Yet few have much good to say about the bosses who will no doubt continue to pay out their executive pay packages amid all this suffering. Last week, Angela received the following email from her mother’s nursing home manager: “Hi Angela. If Joan was dying, a visit to her room would be allowed. And in fact it was.
It is often said that the way a society treats its most vulnerable persons is a true measure of its humanity. And it looks like something is going terribly, terribly wrong now. In April, after horrific stories emerged of patients – even children – dying alone in the hospital as a result of corona restrictions, Mr. Hancock promised that families could be together in person ‘whenever possible’. But last week, he seemed unable to acknowledge the current issue when it was presented to him, reiterating that he had “introduced a new protocol to make more localized decisions about protecting care homes and when visitors are allowed.”
Obviously he misses the point.
Julia Jones, co-founder of John’s Campaign, puts it simply: “These are not visitors, these are husbands and wives aged 60 or older and children. What’s really important is that in the last months of their lives, people are able to be with the people who make their life worth living. That is what counts.’
How can someone not see that?
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