Care home crisis Why I’ve brought my Dad home
As more care homes ban ‘window visits’, Alice Hall meets the families fighting for the right to see their vulnerable relatives
One of Don Hurst’s greatest joys is dancing with his wife Winnie. The pair met at a dance hall in Liverpool in 1956, and have been regulars ever since. When 79-year-old Winnie developed Alzheimer’s, Don would dance with her at home to André Rieu, her favourite musician. “It was a way of keeping her memory going,” he says, quietly, as we speak over the phone.
Winnie went into a residential home in May, but due to her complex needs was moved into a nursing home shortly after. The home initially told Don, 86, that he could get regular coronavirus tests, and spend as much time dancing with Winnie as he wished. However, the reality is very different. For five months, the couple’s only interaction has been through a glass window that opens an inch. On the day we speak, Don, who has a pacemaker, has spent the day sitting outside in the rain while visiting Winnie. “The window was closed so I couldn’t hear anything she was saying. I just wanted to give her a hug,” he says.
Don’s 60-year-old son, also called Don, said: “I found it very upsetting. We were sitting outside under an umbrella and my dad was sobbing. He kept asking me: ‘Why is it like this, why can’t we go in?’ It’s the first time I’ve seen my dad cry in my whole life.”
Over the five months of restricted visits, his father’s health has deteriorated rapidly. He struggles to sleep most nights as he’s worrying about Winnie, and finds it difficult to eat. But Don is just one of thousands of relatives who feel that they’ve been left in the dark by the visiting restrictions placed on care homes. Since March, families have been forced to interact with their loved ones through window visits. Some have had no contact with them at all. In July, the Government guidelines changed to allow 30-minute garden visits with one nominated family member, but with no uniform policy across care homes, restrictions often change at the last minute.
With much of the North under local lockdown, families are once again faced with being separated from their loved ones. The situation is particularly bad in Liverpool; with the region currently under tier-three lockdown restrictions, all visits to care homes are banned, even through a window. As cases continue to rise, the Department of Health is planning to select a group of designated care homes to take in elderly Covid-19 patients from hospitals and nurse them in isolation – only adding to relatives’ anxiety.
It was growing frustration with visiting restrictions that led Jenny Morrison, 55, and her partner Diane Mayhew, also 55, from Liverpool to start the Rights for Residents campaign, demanding the Government grant key worker status to relatives of care home residents, so they can access the same testing regime as staff and resume indoor visits. Their petition (change.org/p/please-let-me-see-myfamily-before-it-s-too-late) has amassed nearly 154,000 signatures at the time of writing.
There is some progress. This week, Helen Whately, the social care minister, said a pilot scheme would be launched “shortly”, in which a relative or friend would be treated as a key worker and given a weekly Covid test, to enable safe visits. Jenny says this is “a step in the right direction”, but adds “time is not on our side.”
She explains: “The average life of a care home resident is 18 months; these people don’t have long left. I don’t see the point in keeping people alive just to die of loneliness – and there’s no substitute for human touch… Our campaign has outlined very clear ways that the Government could allow safe visits right now.”
It was born after a particularly distressing window visit with her 87-year-old mum, Jean, who has Alzheimer’s and requires round-theclock support. During one of the visits, Jean “collapsed into a flood of tears” and held her head in her hands.
“We felt so helpless,” says Jenny. “The carers gave her a hug and told her to smile. She replied with: ‘I’m never going to smile again.’ She used to be called ‘smiler’ in the home, so that was just heartbreaking to hear. I felt this overwhelming sense of guilt… Diane and I decided we had to act for
Mum and all the other families who were going through the same thing.”
Now even window visits are banned, Jenny is uncertain when she will see her mum again – so far the family have only been offered video calls. “Skyping someone with advanced dementia can be terrifying; my mum gets very distressed and thinks it’s the TV, so she shouts to turn it off,” she says.
Emma Lipson, 44, an osteopath from Warwick, knows that distress all too well. Her 77-year-old mother Maggie Wright has multiple sclerosis, and tested positive for coronavirus back in April.
“It was like listening to someone die over the phone, and not being able to do anything about it,” says Emma, through tears. “We were told by the manager of the nursing home that they would decide when it was ‘end of life’, and we could come in to say goodbye.”
Against the odds, Maggie survived Covid, but since her recovery has become increasingly depressed. Prior to the restrictions, she had enjoyed regular visits from her grandchildren, trips to the theatre and even a disabled yoga class with her personal assistant. Now, she’s “trapped like a prisoner” in her room, and hasn’t left the care home since March. “She tells me life’s not worth living any more,” says Emma.
The family has grown so worried about Maggie’s mental health that they’ve made the difficult decision to move her out of the care home in five weeks’ time. She receives a package of care, which is funded by the NHS, so she will have constant support from carers at her son’s home – but it still wasn’t an easy decision.
“We’re worried that the care won’t be as good,” Emma says. “It’s going to place enormous stress on my brother’s family. He’s having to get adaptations done to his home, and my sister-in-law won’t be able to leave the house much – but at least Mum will have cuddles again.”
This longing for human contact is at the heart of the Rights for Residents campaign, which wants to remove the burden of responsibility from individual care home managers frozen by fear of litigation. “We need to increase the testing capacity to include relatives of those living in care homes, and indemnify care providers against the risk of being sued if Covid is introduced into a home by a visitor – as the Government has done for the NHS,” says Jenny.
Nadra Ahmed, executive chairman of the National Care Association, says that “we absolutely recognise the importance of social contact between residents and their families, and staff will be looking for every opportunity to safely facilitate visitors”, but as things stand, managers have no choice but “to abide by the lockdown restrictions in areas around the UK”.
For now, Don finds it too painful to listen to Winnie’s favourite music. Until Liverpool’s restrictions are lifted, he can’t even see her at her window. “I just want to hear her voice,” he says. “I’d do anything to dance with her again.”
‘Time is not on our side – why are we keeping people alive to die of loneliness?’