Twelve years ago, Ian Smith made a vow, one that so many make, to his wife, Sylvia – to have and hold her, in sickness and in health, from that day forward. And when, two years ago, at the age of just 66, she inexplicably developed an aggressive, degenerative brain illness, he was good to his word.
Sylvia, who enjoyed travelling round the country with Ian to watch live music and ‘was a bit of an expert’ at making wedding cakes, rapidly became wheelchair-bound, unable to walk, talk beyond the odd word, feed, dress or wash herself.
After struggling on for much of 2018, with her condition rapidly worsening, Ian, 67, was finally unable to cope alone. But after finding her a place at a nursing home in nearby Market Harborough, Leicestershire, he was by her side for up to six hours a day, every day, bringing her meals and staying with her until he tucked her into bed at night.
This all came to a sudden halt, however, on March 24, when the country went into lockdown. The care home closed its doors to all visitors – and never reopened, barring the odd 30-minute slot, once a week.
Ian Smith with his wife Sylvia before her illness. Two years ago, at the age of just 66, she inexplicably developed an aggressive, degenerative brain illness
In fact, since the pandemic struck, Ian has been able to see Sylvia for less than three hours in total, at a distance of two metres – the last time, on August 21, their wedding anniversary. He was ‘allowed’ to stand beside his wife for just a few moments, while a member of staff took a picture.
‘I put my arm around her, although I knew I shouldn’t,’ says the retired steelworker, from Corby, Northamptonshire. ‘I know she’s got worse, since I’ve not been there. She used to smile and now I don’t know if she recognises me.’
Speaking to Ian you get a sense that, like many in such trying circumstances, he’s kept it together over the past couple of years by throwing himself into caring for his wife – who became so unwell, so quickly, and who he so clearly adores. He says: ‘I just didn’t want her to ever feel alone, or scared.’
No one knows what caused Sylvia’s illness, corticobasal degeneration, which leads to progressive brain damage. Most patients don’t live more than eight years from onset.
Needless to say, Ian has been left broken by the separation.
‘She’s still beautiful to me,’ he says. ‘I just want to be able to sit with my wife, and be her husband.
‘When we married, I promised I’d look after her in sickness and in health. But now I can’t. She took a chance on me, and I just want to show her she made the right choice – I’m terrified she thinks I’ve given up on her. I just don’t know how long she’ll last like this. I don’t come into contact with anyone else, really, so I don’t see why I’m more a risk than a member of staff.
‘I’d be tested every single day if I had to, but nothing I say makes a difference. Instead, we are both suffering, every day.’
Sadly, Ian is also far from alone in his plight. Last week, I wrote about the anguish of families who’ve been barred by care homes from being with their loved ones – in many cases for six months.
Devoted: Ian with his wife Sylvia, who rapidly became wheelchair-bound. After finding her a place at a nursing home in nearby Leicestershire, he was by her side for up to six hours a day
While restrictions have eased across the country, huge numbers of these vital facilities are still in lockdown, refusing or drastically limiting visits. And, it seems there is no end in sight. Dementia charity John’s Campaign has launched a legal challenge, in a bid to force the Government to amend guidance that has led to this nightmarish situation. The problem, it says, is that care homes have enforced blanket lockdown rules, strictly limiting visits, if they’re permitted at all, and prohibiting physical contact.
But in their rush to protect vulnerable, elderly residents, managers have neglected one of the most vital parts of their residents’ health: everyday interactions with those who care for them most.
In response to our article, we received scores of letters and emails from readers who said they too had been forcibly separated from the most important people in their lives – husbands and wives, parents and children, torn apart.
Just a few of them, we include below – their pain, like Ian’s, is palpable. And many also describe a shocking decline in their health, or even death of their relative in care. The figures back this up – there has been a 52 per cent spike in deaths from dementia, unrelated to Covid-19, since lockdown began.
The John’s Campaign lawyers will argue that care homes are breaking human rights laws.
Sylvia, pictured before her illness, enjoyed travelling with Ian to watch live music
The Department for Health and Social Care claims ‘our first priority is to prevent infections’ and that ‘visiting policies should be tailored by the individual care home’.
The new guidance states that people living in care homes should be allowed a ‘single constant visitor’ and while touching is not prohibited, it should be ‘kept to a minimum’. It suggests ‘if a visitor is making close personal contact with a resident they may need to wear PPE beyond a face covering’. But it also recognises allowances should be made if the ‘resident’ has ‘difficulty in accepting face coverings’.
Clearly, there is room for interpretation. But it seems, by erring on the side of caution, many homes have interpreted this advice in the most draconian way.
There is also the matter of ‘Covid-free status’ – homes are completely locking down for 28 days and, some claim, locking residents in their rooms for this period as soon as there is one diagnosis. But how long will this go on? And how many more will die from the well-known ill effects that social isolation has on those with dementia?
In April, after distressing stories emerged of patients – some of them children – dying alone in hospital, their families barred from being with them due to corona restrictions, Secretary of State for Health Matt Hancock pledged to allow families to be together, in person, ‘wherever possible’.
Yet, in this matter he seems to have remained neutral. He says he has ‘sympathy’, but has ‘given decision-making to the local area and to the homes themselves’.
And, without clear leadership, thousands of families continue to suffer, with no one to turn to. Perhaps, then, reading their words in the letters that follow will have a salutary effect on the Ministers and other officials who are failing to act amid this growing crisis…
‘Heart-breaking… and barbaric’
- Liz Offord, 77, from Sale, in Trafford:
‘My husband, Ray, is 82 and has had vascular dementia for over nine years, and been care for seven. The home is good, and Ray, who’d had a difficult time, was settled, until the virus hit. It’s meant six months has gone by almost without contact. Before all this I could spend three or four hours each day with him.
‘We’ve tried video calls, and I get a few seconds to see him but he just shouts at me to go away. It’s upsetting, but he just doesn’t understand what’s going on. I’ve been allowed 30 minutes to talk to him, sat outside an open door, with him in his wheelchair inside. But it’s not much use, as he’s deaf. He told me: ‘You’ve abandoned me.’
Hurting: Liz Offord with husband Ray, who thinks she has abandoned him. She said: ‘It hurts, so much. I’d have him home but I couldn’t manage, as his dementia made him aggressive’
‘It hurts, so much. I’d have him home but I couldn’t manage, as his dementia made him aggressive.
‘I’m just so angry, and it’s no good speaking to the manager as they say it’s the new rules. It’s like there’s a brick wall. I can’t go under or over, I’m just banging my head against it over and over.’
- Christine Booth, by email:
‘I am a resident in Manchester, so living under local lockdown restrictions. It means we’re not even allowed into the garden of the care home for a window visit to see my mother.
‘It’s ludicrous, as there’s no chance of Covid-19 getting through a window. During this period, my mother suffered a stroke, and I’m still not allowed to see her.
‘This is barbaric. She must feel like she’s been abandoned.’
- Kay Jones, in her late 60s, Market Harborough, Leicestershire:
‘I’ve been allowed three 20-minute visits to see my husband David, who’s 83 – but I’m across the room, in full PPE, so he barely recognises me. And he just cries, saying: “It’s all ended.”
‘He had a fall at home and was discharged into a care home in June. I wasn’t really given a choice, but thought it would be for the best.
‘Before he was ill, we loved to travel. But he has Parkinson’s and dementia, so I was eventually doing everything for him.
‘When I call the home, they tell me: “Don’t worry, he doesn’t ask about you.”
‘It’s like being bereaved, but without a body. It’s all so unreal.
‘We’ve made life better for children, but what about older people?
‘They haven’t got a life any more, and that’s so sad.
‘David was always helping other people, he was just that sort of person. But no one seems to be helping him, and I can’t either.’
- Tina Duplock, Kingston St. Mary, Somerset:
‘My mum, Betty-Jean Mees, is 90 years old, has dementia, and is blind. I used to go in all day, and I’d go in and do her make-up, and hair, take her for a walk, but I can’t do any of that now. The home is good, and I can visit for 14 minutes (apparently the virus transfers after 15 minutes) if I make an appointment. But it is heart-breaking as hugs and hand-holding are not allowed.
‘She hears my voice and reaches out, but I have to stay two metres away. She doesn’t understand and it causes us both upset. She’d might as well be in prison. She’d probably have more rights if she were. This cruelty needs to end.’
The Department for Health and Social Care claims ‘our first priority is to prevent infections’ and that ‘visiting policies should be tailored by the individual care home’ (file photo)
‘We are “allowed” one visit of half an hour per week, outside, and if it’s raining, the visit is cancelled. You have to wait another week. Until lockdown, my husband of over 50 years, who has Parkinson’s and dementia, appeared to be well. He weighed 16st, with a 44in waist. He’s now 10st, with a 32in waist. To make matters worse, I’m paying dearly for the privilege.’
‘My husband has been in care for three years, and up until March I visited him every single day. Since then I’ve seen him four times – outside, 6ft away, in all weather. We only manage ten minutes, as it’s cold and uncomfortable for him.
‘He has all his faculties, so knows what’s going on. I find this very difficult, as does he. We haven’t been able to touch for six months. This is unbelievably cruel.’
- Debbie, Boston, Lincolnshire:
‘When the country went into lockdown, my biggest fear was that I would never see my dad again.
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‘He was in a nursing home, with dementia. My mother visited every day and helped him eat.
‘Throughout lockdown, we were allowed a 15-minute Skype call. This was of no use. My dad, Bob, who was 86, didn’t realise what this little box with a picture of my Mum was. My mother, at the age of 85, couldn’t work out most days how to either get a picture or the sound or both on. We progressed to window visits, but neither could hear the other and Dad didn’t speak to her.
‘Dad got thinner, and less responsive each week. Eventually, we were informed he’d not got long left. We had to beg and plead with the directors of the home for weeks to at least allow us to see him.
‘In the end, we had ten minutes, in full PPE. He’d lost so much weight, he was like a skeleton with skin.
‘We did go near him – we held his hand and kissed him and told him we loved him, but jumped back the minute we heard the door.
‘And then our time was up. He died an hour later, alone.
‘I’m angry with myself. I should have insisted we stay. I won’t forgive myself for that. I can’t believe my dad had to self-fund £7,000 a month for the nursing home, in Fleet, Hampshire, and yet he was treated like a prisoner.’
- Fiona MacMillan, Aberdeen:
‘Not being allowed to see my partner of 34 years is mental torture. I cry every day and worry immensely. I can phone him, but he has dementia, and I’m worried he is getting worse, as he hardly speaks now. I don’t know how this is costing £6,000 a month.’
‘My mum is 94, and her health has deteriorated dramatically over the last six months.
‘Although she struggles to get around, mentally she’s always been on the ball. She’s now on antidepressants.
‘We can see her through a window, but she’s lost the will to live. She told us: “It’s worse than The Blitz.” It’s soul-destroying. No hugs from family, no contact allowed. It’s like she’s a prisoner. How can it be allowed to happen?’
In their rush to protect residents, managers have neglected one of the most vital parts of their residents’ health: everyday interactions with those who care for them most (file photo)
- Vanessa Penn, Ipswich, Suffolk:
‘My father has been locked away since March. There have been a few 30-minute visits outside, but every time someone goes down with a temperature they close the home for 28 days. I have pleaded to let my mum visit but they say these are Public Health England rules, and not their rules.’
- Kathleen Farnworth, Birkenhead, Wirral:
‘My husband recently celebrated his 90th birthday in a nursing home, in lockdown. We have been married for 64 years and I feel as if I have put him in prison.’
‘The last time I was in the same room as my mother was March 15. Since then I have had four window visits. Sat on a dirty old garden chair, talking to your mum through a less than clean window is very depressing. She needs a hug from someone who loves and cares. With costs at over £4,900 a month, this is appalling.’