The harvest

By David Jolley

The very grim reality of the situation and its significance for older people comes from the statistics: only one percent of COVID-19 deaths have occurred to people aged 50 or less – on the other hand 59% of deaths have been aged 80+ (who constitute less than 5% of the population).

https://www.theguardian.com/uk-news/2020/may/13/pensioners-34-times-more-likely-to-die-of-covid-19-than-working-age-brits-data-shows

There has been a concentration of deaths within care homes. Some homes have lost no one, others have lost almost all their residents. Staff have died, particularly those from certain ethnic minority groups. There are occasional letters from staff involved with care of people at home – again describing illness and deaths and lack of equipment, reluctance by hospitals to accept referrals.

Harvesting is a technical term used by epidemiologist to describe the loss of lives of the weaker and most vulnerable people in response to any generalised stress to a population, be it cold or excessive heat, or infection. It is a phenomenon of nature, so it may be seen as natural that we have lost the weakest older people, many of them with dementia, to this global stress.

https://www.theguardian.com/commentisfree/2020/may/08/care-home-residents-harvested-left-to-die-uk-government-herd-immunity

The concern is that more could have been done – even now – can be done to modify this natural process: better information, better equipment, recognition of the special needs – at least to give people the dignity of being counted.

Weekly death rates in UK care homes averaged 3,000 up to March 27th. They rose to over 8,500 by April 24th and have fallen in May to 7,000 – still more than twice the figure for weeks in March. Less than half the extra deaths are attributed to COVID-19 – but we may assume that one way or another the virus and the crisis have been contributory to the others.  How big is the epidemic in care homes?

We are only now beginning to wonder what the shape of our population will be by midsummer and thereafter. How will we configure services for the future?

If you have a garden and a library

By David Jolley

This week we have learned that The Alzheimer’s Society has been cleared by the Charity Commission following whistle blower claims of bullying, harassment and the use of severance monies to suppress complaints by staff and former staff. Not everyone is yet convinced.

This story received relatively little publicity thanks to ongoing preoccupation with COVID-19 and restrictions of normal life designed to limit its spread. There has also been celebration of the 75th anniversary of V.E. Day.

V.E. Day gave plenty material for reminiscing for those who were there and can remember it, and for others for whom it has been part of a family’s history. The lockdown meant that celebrations were smaller scale and perhaps quieter and more thoughtful than they otherwise might have been. Flags and hats, Vera Lynn, flypasts and singing gave a sense of shared joy and relief rather than triumphalism. Care homes were as active as anywhere as the wonderful staff do so much to raise spirits under siege and a death rate which is three times the usual for this time of year.

Most impressive are the stories which tell us what people are finding comforting and helpful during these weeks of social austerity: dogs’ homes are empty as people take on a dog for company and regular exercise, sales of books and digital music are at a high, as are sales of hobby craft work and art materials, seeds and plants (on line). Radio 3 is being more appreciated than ever. Many of these pleasures are simple and honest.

One letter writer reminded us that Cicero affirmed in 46 BC: ‘If you have a garden and a library, you have everything you need’.

Wisdom endures.

A tradition of feeding the needy is prominent in the Sikh religion – food from the langar (communal kitchen) is available day in day out. Langars around the country have increased their output to help during the crisis – mosques, churches, synagogues and other faith centres are similarly engaged alongside Foodbanks and other initiatives which often use faith premises even though not themselves faith-based.

Lessons and practices originating in the past still provide strength and comfort in these novel national and international circumstances.

News with balance

By David Jolley

I have admired Dr Albert Jewell from afar for many years – Head of Chaplaincy for MHA and author of pioneering books with collections of papers about older people and faith, people with dementia and spirituality. The first included a quote from Archbishop of York Reverend David Jenkins.

‘Spirituality is a weasel word’. He felt happier with ‘faith’, which he declared to have more substance. I think that is right.

Linked in with that is my take from the work of Professor Michael King who found that people with high readings of spirituality on his scale suffered more anxiety and general ill-health than the average unless that were involved with a faith community. Being involved and sharing togetherness is a powerful combination for good.

Lately it has become my privilege and joy to work with Albert as a friend and colleague in the executive committee of Christians on Ageing. One of the successes of Christians on Ageing is its Dementia Newsletter – a brainchild of Dr Jewell, who is its editor. Struggling to cope with these weeks of limited human contact, it is good to have a copy of the May edition of the Dementia Newsletter https://christiansonageing.org.uk/wp-content/uploads/sites/67/2020/04/Dementia-Newsletter-may-20.pdf

It tries to bring together information of developments and ideas relating to dementia and related topics, giving them a modest, lay interpretation and perspective.

There has to be mention of the crisis – it is a huge issue and especially so for older people and people with dementia, but there are other things going on, which we must not forget.

You can receive the Dementia Newsletter free if you register as described on the Christians on Ageing website.

Death of a woman with dementia in Holland

By David Jolley

With death on almost every page of newspapers every day, as we count the human and economic costs of Covid-19, the headline at the bottom of page 30 of Wednesday’s Guardian could have been overlooked: ‘Dutch dementia ruling protects doctors carrying out euthanasia.’

The article describes the death of a 74 year old woman who, whilst still competent, had requested that she be killed if her dementia progressed. In the event, we are told that the woman had to be restrained by her family, even though she had been given a sedative with coffee beforehand.

The rules are that such a directive will be honoured in Holland only when the patient has ‘unbearable and endless suffering’ and that at least two doctors agree to carry out the procedure.

Even with those reassurances, this is a troubling scenario. Her resistance, and the decision to use a sedative in anticipation of this, suggest that the woman she had become, though lacking competence, would hang on to the life she had.

The doctors and relatives were not the initiators of this killing. They were complying with a decision and directive which she made before she lost capacity. ‘Euthanasia’ and ‘euthanasing’ are words which appear in the article. Euthanasia: ‘the act or practice of putting painlessly to death’ says Chambers dictionary. So, this is euthanasia, but the putting starts with the individual and is deferred suicide, rather than an assault at the hands of others. It depends upon anticipation. There could be no consultation with the woman she had become. The woman she might become has been deemed unworthy of this consideration.

This is not the first such ruling. The practices involved are being confirmed and normalised within the courts of Holland.

It is a troubling development. Amongst the topics of discussion at our monthly Dementia Conversations, loss of capacity is the one associated with the greatest fear by those who have dementia but are still competent, and the most painful heartache for carers.

For me, ruling on the life of another – even if they were me – is best left to God.

 

Cold comfort

By David Jolley

We were not able to hold our regular monthly Dementia Conversations this week. This is the first time we have missed a session since we started three years ago. I am so glad we managed the Time for a Cuppa event in March just before all this.

The closure of all church premises is a great loss. We love to be able to congregate and come close. So much is achieved by closeness and nonverbal cues, bodily movements and facial expressions. People are turning hoops to link up by phone or internet programmes – all quite amazing and magical, but it cannot be the same.

B and J are staying with their daughter. It is working well so far and attends to all the practicalities, but endless days with no structure – What day is it? May take its toll on resourcefulness and patience.

For M and D it is said life is not so different from usual because she has stayed in to care for him for more than two years already – he being dependent and unable to get about even within their own home. They have good established support from family and professional carers. The risk is if and when any of these is lost to illness or self-isolation.

F is despairing and asking for guidance. Mum is muddled as muddled but still very lively and active – she won’t be kept in and she won’t keep her distance from other people. She is just a people’s person.

SCIE and others have produced lengthy and worthy documents of advice with reasoning for people involved with individuals or groups with dementia, learning disability, autism and other impairments. All very well. There are reports in newspapers about non-compliant individuals being fined or imprisoned, when it seems at least possible that they are mentally unwell.

Our local MHA home is sending regular emails and U-Tube updates to let families know what is going on behind the closed doors. People are missing people but some relish being a star of stage or screen.

People are being wonderful (mostly). So good that recognition of the NHS has been extended to recognition of others in caring rolls, service rolls and all. The concept of ‘essential work’ has to be thought about carefully. But isn’t it interesting that most people in essential work have been receiving relatively low pay – and even threatened with expulsion form the country? Some were sent away in the Windrush scandal, which has still not been resolved.

Tough times. We are holding tight (virtually).

Easter 2020

By David Jolley

At 6pm on Good Friday (April 10th) I received a text telling me that my GP surgery will be open April 10th (Good Friday) and April 13th (Easter Monday) 8.00am to 6.30pm and I should telephone to ask for help if I felt unwell.

This surprised me – it was a bit late for the Friday opening – and I thought Bank Holidays were Bank Holidays and surgeries would not be open. And in the context of the Covid-19 crisis the advice has been to stop at home, ask a chemist and save the NHS.

My wife suggests that the text (which she received first thing on Friday) is probably a reaction to the finding that people are not making contact with their GP at anything like the usual rate – the fear is that the bald message to keep away has been too simple and people are at risk of neglecting treatable illnesses other than Covid-19.

On Thursday – Maundy Thursday – at 8pm I had joined the rest of our household to clap the NHS – heroes in the fight against Covid-19. It was a wonderful, cheerful five minutes. Everyone along the row was out – we know each other, like each other, and it felt good to be expressing our appreciation and showing our togetherness. This was the third clapping Thursday – but the first that I had joined in. The rest of the family had been there on the previous weeks – but I had grumped that this felt like a political diversion – and the NHS has been wonderful since 1948 – and much appreciated by most people other than recent governments throughout the 70+ years. So why are we out on our doorsteps just now?

I joined in this week because the sense of the people coming together, finding an understanding of real values, and things we can do together to make the world safer and healthier, has come on strong. This is not a time to be grumpy and suspicious of political motives.

This virus is causing suffering and death. It is causing hardship, poverty and despair. Although it is affecting people of all ages and all classes, its greatest effects are on older people, especially those with multiple established illnesses including dementia, and those who are least well-off and most vulnerable by any measure.

Statistics are presented to us night after night. These describe the world situation and the local status. It is not easy to follow the numbers even with the interpretations given to us by experts. It does seem odd that we have been told to stay home and not expect to have a confirmatory test unless we become very ill and hospitalisation is needed. Only if that happens do we have chance to register as a case of Covid-19 – and become someone who might die from it. This has to mean that many cases go unrecognised in any formal way and the death rate as registered in this country relates only to people who have been admitted to hospital, confirmed as cases, and then die. Despite the daily death rate for the UK now hovering around 1,000, it is inevitable that the true death rate is higher. In particular we know that people who become unwell in care homes, many of them with dementia, are likely to stay there and may die there. They will not be counted – They will be saving the NHS: https://www.theguardian.com/world/2020/apr/09/covid-19-hundreds-of-uk-care-home-deaths-not-added-to-official-toll

That is not to say that people who die in care homes with or without dementia don’t count. We do know that almost 70,000 people died with a diagnosis of dementia in England and Wales last year – half of these deaths were in care homes.

By the end of April 11th less than 11,000 people have died with a diagnosis of covid-19. There is real and proper concern that the number of deaths will sum to near 20,000.

Families, social services, independent agencies, charities and the NHS provide wonderful service to people living with dementia and dying with dementia, or with other chronic and progressive disorders. Appreciation of these efforts every day by giving thanks, if not by clapping at our thresholds, is the least we can do.

The difference about the Covid-19 suffering and dying is that it fits much closer to the image many people have of ‘real illness’ – an infection which affects people of all ages and all classes, with symptoms progressing over a number of days, a crisis for the worst affected, followed by recovery or death after urgent, heroic interventions. It is a model which fitted prevalent illnesses in the past. It is history. The value of present-day healthcare relates to a very different scenario – sadly it is sometimes less appreciated than it should be.

There is much for the people of the world, of any faith or none, to think on this Easter time.

Tonight we will light our candle at 7pm for the third Sunday running. I hope all our neighbours will do the same.

And I will look again at a programme which offers a whimsical diversion on the Easter story, in plants, which fits easy with me and the park www.bbc.co.uk/programmes/m000h0f6

 

Self-help in self isolation

By David Jolley

I was surprised to receive an email from the General Medical Council two evenings ago. The message told me that I had been reinstated on the register of doctors licensed to practice. (I am otherwise listed on the register as retired from clinical practice).

This unusual state of affairs is a consequence of the Coronavirus crisis – the Government and GMC looking for ways to increase the number of clinicians able to work in the effort to combat the pandemic. A really excellent initiative.

Taking all things into account, including issues of my own health, and my involvement in a range of other activities, I have chosen to opt out of this scheme. Otherwise my name and contact details would be forwarded to local NHS organisations, who might approach me to offer appropriate employment. This is a far cry from the knee-jerk reaction two or three weeks ago which designated everyone over 70 ‘vulnerable’ and thus required to stay indoors and depend on younger family, friends or neighbours to fetch and carry for them, while they drive themselves crazy with rainy-day diversions. Actually, many of us can find plenty of wonderful things to do if confined to quarters – it is just that the over-inclusive age-related edict raised hackles.

Amelia Hill cites examples of guerrilla movements amongst older people who are indoors: an 85-year-old lady who is part of a church-based telephone support group, an 80 year old who phones his friends with a daily joke! And a network of motor car enthusiasts aged 88-103 who just keep in touch by telephone to talk cars.

Elderly people in UK set up support networks to tackle coronavirus

Local care homes let the outside world know what is happening via websites, Facebook and similar. They will receive information in the same way plus emails, telephone calls and items brought to the front door.

We contribute to raising people’s spirits now and later in the year by attending to birds in the park aviary – and preparing flower beds – useful outputs from our daily ration of exercise. Interestingly the age range of our active volunteers has now strayed below 50 – everything done strictly in keeping with the rules of cleanliness and distancing.

This is a terrible time, but we are finding a way.