RE-IMAGINING CARE | RESIDENTIAL CARE

‘We Love You Ma’ — But Words are Not Enough

A strategy to stop Covid infections and deaths in care homes

Are care homes still safe havens?

Making arrangements to put a parent into full-time care is one of life’s most agonizing decisions. They don’t want to lose their home and their freedom. You don’t want them to die.

Maybe they need specialist nursing care after a bad fall or a serious illness. Or perhaps it’s dementia. There’s nothing too serious yet, but there could be if they got lost in the city or blew up the oven. They need day-long supervision. You can’t give it because you have your work and your children and your commitments — or perhaps they live too far away. But you love them, and you know they’ll be safe in care. And of course you’ll visit at the weekend.

Suddenly they’re not so safe after all.

Covid-19 has raged through the care homes like a forest fire. It takes just one spark, one outsider who’s a carrier, and suddenly everyone in the building is in danger. Every day you shudder at the news. In Spain, in Italy, in the UK, in the USA — whole communities have been infected and death is disproportionate. You hear the World Health Organization’s grim estimate: 50% of all Covid victims in Europe have been from the elderly in residential care.

You think about your parent. Weekend visits are forbidden. You’ve been assured that nobody in their home is displaying symptoms, but group activities have been stopped, just in case. All the residents are safe in their rooms.

You imagine your mother in her room, alone. She probably doesn’t understand what’s going on in the world outside. What’s she thinking? Why doesn’t anyone come to see me any more? What did I do to upset them?

This was never the plan. The care home is no safe haven. It’s a storm in a port. And even if the virus doesn’t do for your mother, maybe the loneliness will.

How long this will go on? And what can you do about it?

You could stand on your doorstep and applaud the heroes and heroines who are risking their own lives to help our most sick and vulnerable.

You could praise the government for the efforts they’ve started making to support the care homes, with more personal protection equipment and ramped-up testing.

You could blame the government for still not doing enough or for not acting sooner.

Or you could react just like you would if your parents were facing a real forest fire. You’d do everything possible to get them out of there before it was too late. Thanks and blame could come later. Structural and service improvements? Yes, all well and good — but first you need to make sure your parents survive.

Saying ‘I love you Ma’ just isn’t enough.

How to breed a virus

Take our parents out of care? Doesn’t that sound a bit radical and hysterical? Not if you consider the evidence.

Right from the start of the coronavirus crisis, it was no secret that the elderly were at greatest risk of infection. And then from the outbreak on the cruise ships in February, it was clear that keeping people together in a confined space accelerated the rate of transmission. On the Diamond Princess, held in Yokohama Harbour, over 700 of the 3711 people on board contracted coronavirus within a month. As cases began to be confirmed, passengers were confined to their cabins for two weeks — longer if they started to display symptoms — but still the virus was undeterred.

After her analysis of the cruise ship evidence in Nature magazine in late March, Senior Editor Smriti Mallaparty concluded:

“Outbreaks seed easily on the vessels because of the close confines and high proportions of older people who tend to be more vulnerable to the disease.”

As on the ships, so in the care homes. Take a confined space and a group of elderly people and at best it’s a fertile breeding-ground for Covid. Add dementia into the mix — the Alzheimer’s Society reckons that 70% of care home residents are affected — and it becomes a potential killing field. No matter how much PPE, testing, and heroism we manage to deliver, it’ll be scant defence.

Why does dementia make it worse? Try telling someone with dementia that the rule is always to maintain a 2 metre distance from others. I speak with some authority as a 10-year caregiver veteran. In the early days of Alzheimer’s, my wife would have agreed with social distancing wholeheartedly … but 5 minutes later she’d have forgotten all about it. These days, when she doesn’t even know her own name, she wouldn’t have a clue what I was talking about.

So if you can’t keep people with dementia apart, you force isolation upon them. That’s why your mother’s sobbing in her room.

A conspiracy of silence?

Despite the evidence, we aren’t rushing to take our parents out of care. In fact, it isn’t even a talking-point. There’s plenty of discussion about re-opening our schools and our shops and our businesses. Is it too soon? Will Covid still be lurking? So what about care homes — the riskiest environment with our most vulnerable people? There’s plenty of chatter about protecting our brave care-workers, true, But what about the victims, our parents? Shouldn’t we get them out of there?

Silence.

Are we silent because we don’t care? Surely not. We love our parents … or say we do.

Are we silent because deaths in care homes don’t matter? They really do. Governments are insisting that the R-number — the virus’s rate of reproduction — needs to come down before their wrecked economies can be restarted. Right now the experts seems to agree that the care catastrophe is single-handedly responsible for pushing R back up again. So solving the care home problem isn’t just about keeping our parents safe; as more people die, the whole country suffers.

Are we silent because we’re so busy firefighting that nobody’s stepping back to look at the bigger picture? Possibly. Or to take a more cynical view, the politicians may feel they earn more political capital by focusing on the heroism of the care-workers rather than the plight of the residents. As Colin Dickey wrote in his thoughtful article:

Politicians on the right have always found it much easier to praise first responders than to face grief; every tragedy is a miracle if you look at it right.

Perhaps we’re silent because we believe that all the people in care need so much specialist assistance that it would be impossible for them to go home? If that’s what we believe, then we shouldn’t. Let’s take the UK as an example. Here, we distinguish between nursing homes, where people are receiving specialist medical treatment, and care homes, where residents simply need some assistance with the daily activities of living. NHS figures for England alone in 2017 show that of 565,000 people aged 65+ and living in full-time care, 418,000 were in care-homes compared with 147,000 in nursing homes.

Or are we refusing to talk about bringing our parents out of care because it all seems too complicated. In lockdown, our busy lives have changed and we’re spending much more time at home. So we could now make arrangements to keep an eye on a parent all day long. The situation has changed. But what about the possibility of cross-infection back into the family? What if we can’t guarantee adequate supervision or have no space? What if our loved one has dementia and we have no experience? What would we do? Where would we even start? And then what about those who have no family to go to?

Or what if we just don’t get on?

3 Steps to Safety

This 3-step government-led strategy would answer all these questions.

A quarantine scheme for those coming out of care

We’ve done this before: people entering the country from abroad have been quarantined in hotels to prevent the possible spread of infection. So let’s do the same for those leaving residential care. The government would fully fund 14 days in a hotel, including an extra room for one family member to keep them company. The hotels could certainly use the business. And the cost to the government would be miniscule compared to the amounts invested to keep businesses afloat through the crisis.

A support service for new home caregivers

There are thousands of people — just like me — who have been family dementia carers for years, unpaid, working alone. We’ve had to figure things out for ourselves: how to tell friends, how to prevent accidents, how to deal with personal hygiene, what to eat, where to go for help … and not least, how to take care of our own physical and mental health. Many of us would be only too happy to help others who are new to all this: sharing is our therapy. So use us. Let’s mobilize a battle-toughened army to fight the war against Covid, helping new recruits to caregiving with our stories, tips, mentoring and emotional support.

Host families for those with nowhere to go

During World War II, millions of British children were evacuated from major towns and cities to stay with host families in places considered safer from the bombing campaigns. If that was possible in 1940, then why not in 2020 — except hosting the elderly this time, not the children? Of course, there’d need to be new legislation and proper protection. But governments have shown they can move fast in this crisis.

What next …?

It’s not just about protecting our own parents.

If this strategy helps to move some people out of the homes, at least we’ll help to relieve the pressure on overstretched care staff and give them more time and space to help those who need to remain.

If more people leave, then we’ll almost certainly drive down the death rate across the whole country. Critically we’ll then be in a position to attend to our sick economies.

Will it all happen? Will we live happily ever after? Probably not — mine is just one voice in a very noisy room.

But I wanted to open a debate. I hope I won’t be the only speaker.

‘Helping newcomers to caring with out stories’, I wrote. Here are two I prepared earlier: