Easter without Good Friday?

By David Jolley

An oversight by the church office left the weekly notices, and the quarterly plan with no mention of Good Friday. There was a service and it was advertised on a notice outside the church. I went to a service in the Church of England tradition but which welcomed our local Methodist people.

It set me thinking about Easter without Good Friday, Easter being a celebration of new life – Jesus raised from the dead, having been crucified three days earlier. That is a very specific celebration within Christian beliefs and teachings. The timing is linked to the Jewish Passover, but also to the lunar calendar.

This places it at a time when trees and plants are showing wonderful greens and some are in blossom. Birds sing and hurry about their business of nest building and feeding. This is the season of lambs and baby chickens. All these are celebrated just for themselves. I am not sure, but I would guess there have always been celebrations of spring before these days became adopted for our Easter. So many people now live their lives with no reference to a faith, but special days such as Easter remain important to their personal and family calendars.

The point about Easter though for Christians is the return to life, all-be-it briefly in human flesh, of Jesus who had died by crucifixion at the hands of the Romans, but at the behest of the Jewish community of which he was a member. The belief is that his spirit continues as a force and a means of communication and support. This is a belief which gave rise to a powerful religion, adopted and spread by the Romans and still filling lives in almost every part of the earth.

The joy and strength which came on that Third Day were released from the anguish and sorrow which the painful government execution had wrought upon Jesus, and those who cared for him and the messages which he taught.

In the muddle of it all, as we progressed through readings, I held especially tight to the business of crucifixion as a means of punishment, humiliation and legalised murder which was used for centuries and is said to have been applied to thousands of people. The reality of the commonness and squalid nature of the practice is a surprise to me – Specialness and glory attached to the three crosses on the hill is what I have known. The true context has a power of its own: this was sharing something dreadful with many others who had experienced it and would experience it in future.

Somewhere in this I was reflecting on the experiences of people I know very well, who have been struggling with dementia or other illnesses which bring an end to their lives – Firstly by changes which mean they can no longer do all the things that they have been used to doing. They are not dead, but they are no longer the person they were. For the individual this is a great challenge – having to receive when they have been used to giving: this requires growth into grace. For those who have lived with them and love them still, the task is even more difficult. It goes on, is remembered, and will continue after death. There are new beginnings: finding a friend or professional carer who brings peace and maybe humour, finding a service which breaks up the week or the day and is enjoyed by the individual who is unwell, accepting that life in this care home is OK – better than OK – and better than I was doing. New lives. The joy is extracted from the struggle.

Easter without Good Friday? I don’t think so.

I hope all this does not amount to sacrilege.

Several steps too far

By David Jolley

Our Friday seminar drew us to be aware of a short article in this month’s issue of Age and Ageing from Cochrane Foundation, with the intriguing title: When is Alzheimer’s not dementia? https://academic.oup.com/ageing/article/48/2/174/5133577

The authors had published in January an article making similar points in ‘Alzheimer’s and Dementia’ https://alzheimersanddementiajournal.com/article/S1552-5260(18)33581-7/fulltext

They are writing about guidance on the diagnosis of Alzheimer’s disease by the National Institute on Ageing and the Alzheimer’s Association (NIA-AA) issued in 2018 and published in ‘Alzheimer’s and dementia’ https://www.ncbi.nlm.nih.gov/pubmed/29653606 . This new guidance moves matters on from guidance of 2012 which recommended the use of biological markers as adjuncts to clinical characterisation of Alzheimer’s disease, to make the presence of biological markers diagnostic in the absence of clinical symptoms. The markers identify amyloid deposits, fibrillary tau and neurodegeneration. They are demonstrated by examination of the Cerebrospinal Fluid and neuroimaging.

The conservative and highly regarded Cochrane commentators point out that the relationship between the clinical condition, which is what patients, family carers and their professional carers and physicians are concerned with, and these biomarkers is far from equivalence: some people who have clear evidence of the clinical condition do not have the biomarkers. Most importantly in this context, people with the biomarkers do not have clinical impairment and often never develop it.

While the use of biomarkers to define groups for research purposes is reasonable, the extension of their application to clinical practice is unjustified and potentially harmful. ‘Clinical creep’ is the powerful warning term the authors use to describe the inclusion of thousands of normal older people into the diagnosis of Alzheimer’s as required by the new NIA-AA guidelines. This might suit some commercial organisations and even charities, but it would misdirect huge amounts of funds and other resources and raise unsubstantiated worries amongst individuals, families and the caring public. In most economies, the application will be unthinkable – unaffordable.

The enthusiasm of the NIA-AA authors is understandable but it would be inexcusable to adopt their criteria into clinical practice for this would surely do more harm than good. Let us hope that the wise words of the Cochrane Group can hold the day.

Nature’s Therapy

By David Jolley

My attention was drawn to a feature in The Times of April 4th which advises of the benefits of a walk in the park:https://www.thetimes.co.uk/article/a-walk-in-the-park-just-20-minutes-with-nature-beats-stress-mdr5dnc22

The stimulus for the Times Science Editor, Rhys Blakely, to write was a study of cortisol and other stress hormones amongst people with and without exposure to urban nature:https://www.frontiersin.org/articles/10.3389/fpsyg.2019.00722/full.

It is quite wonderful what can be achieved by modern science and what interest and satisfaction we get from laboratory studies and measures.

Jane Gilliard and Mary Marshall had edited an impressive collection of papers: ‘Fresh Air on my face’ for Jessica Kingsley 2011 addressing similar issues from a number of perspectives.

Time in the outdoors, especially in places which give you green grass, trees, flowers and the birds, insects and other animals which find their homes there, is therapeutic. Outings are usually accompanied by gentle physical exercise – walking as a minimum – and by social interaction if you go with someone else – and people watching and serendipitous conversations with passers-by. It is an accumulator winner.

Yet we know that many older people, especially those with dementia, are not able to get out and about much. One report is that the average time out doors for a care home resident is less than two minutes a week – Less than two minutes a week!

We can become so distracted by the sciences of biochemistry and pharmacology that we ignore more powerful and modifiable approaches to improve life experience. Anti-psychotic medication is issued with a blanket hazard notice for the statistically significant reduction of life expectation associated with prescriptions to people with dementia: so many thousands of people are said to die unnecessarily. But lack of music and fresh air are just as damaging – the evidence is there. What can we do about it?

Families will always try to give people time for outings. Increased frailty makes the practicalities more difficult to achieve, but even a short walk with a Zimmer frame or a ride in the wheel chair, is valuable and valued. Care Homes face a challenge, but the best homes do make time outdoors a priority. They will ensure their garden is a good place for residents and visitors to spend time in. They may organise regular walks in their local park. This is time and person expensive. It carries a degree of risk. In most homes, the staff will require support from volunteers and visitors to make this therapy possible. But it can be done.

Mother of a Sunday

By David Jolley

There is a way of talking in the Black Country which uses ‘of’, where most would expect ‘on’: So – ‘She died of a Sunday’ translates as – ‘She died on a Sunday’.

This is Mothering Sunday – the fourth Sunday in Lent. The tradition goes back to at least the 16th century when people working away from home, especially those ‘in service’, were allowed to return to their mother church. They would visit their family and often take gifts, including a Simnel cake and flowers – a short break of celebration in the austere days of Lent. The modern equivalent has built on the giving of presents, special meals and cards. Some have become critical of it as a commercial jamboree – but for many it remains a time of genuine reflection on the care received from mothers, sometimes despite great difficulties, more often simply working through the years of dependency and vulnerability toward adulthood and freedom. Mums remain important right to the end.

In a week where there have been many show-stopper headlines which relate to older people: assisted dying www.theguardian.com/society/assisted-suicide and reduced life expectancy for poorer womenhttps://www.theguardian.com/society/2019/mar/27/womens-life-expectancy-in-poor-areas-falls-by-almost-100-days to name but two, Anne Penketh’s ‘My mother has Alzheimer’s. She deserves better than this’ is the most immediately poignant.

It is bad enough that mum’s last months will be affected by Alzheimer’s disease, a deviation from what she and the family might have hoped for, but one shared by many. But the rage is less about the natural world, much more about society’s response to it. Care for people with cancer is more easily accepted as a responsibility of the NHS. Dementia – recognised as the biggest killer in the country by the Registrar General – is often dismissed as a social phenomenon which requires care to be funded by the individual, social services or family. That is not fair. That hurts.

Finding a suitable placement for someone who becomes paranoid, disturbed and difficult to care for is not easy. It will be more expensive, and fear of the probable quality of the environment dominated by others in similar states of decompensation is awful.

Putting together the arguments for assisted dying, the increased death rate amongst the poor and the denial of healthcare status to people with dementia yields an unpleasant summary of institutionalised devaluation of people who are ‘not like us’.

Anne Penketh finds solace in the innocent enthusiasm of a carer who recognises the PERSON who is her mum, rather than recoil from the monster which DEMENTIA will be if not approached with proper respect. In their personal lives, most ordinary people are decent, loving and value others.

And I just wonder what carefully prescribed and monitored medication might do to help. Low dose of an antipsychotic might modify mum’s symptoms sufficiently for her to find peace more easily during her remaining life. But such treatment is too often denied in the face of generalised guidance informed by statistically significant but small reduction of life expectation.

Reading and writing about dementia

By David Jolley

I have been reading Jackie Pool’s book: ‘Reducing the symptoms of Alzheimer’s Disease and other dementias’ for the Dementia Newsletter of Christians on Ageing.

It is a very personal account, sharing with us from the start that her grandmother had begun to act strangely. The family and Jackie as a child did not know of dementia but explained the change as ‘she has gone senile’.

So it was – It is interesting how many people who have devoted themselves to the field have been motivated by experiences within their own family. The wonderful Moira Low, who founded the Wolverhampton branch of the Alzheimer’s society was drawn to it after a career in teaching, by the illness of her mother, and the earlier experience of her grandmother. The family who have given us the Sunrise chain of care complexes were driven to invent better care for their mother in exasperation at the failings of all options open to them in the USA. So many people who come to talk with us at Dementia Conversations have shared similar stories – moving them to begin care agencies, a specialist shoe fitting facility and more.

England’ senior nurse, when asked to speak about dementia did not refer to the literature or NHS websites but to her personal experience of living with and caring for her mother. There is nothing like it for knowing and feeling the condition – 24 hours a day – endless searching for answers and peace.

This must go some way to explaining the powerful feeling of unity within the dementia care community. This is more than a career, or even a personal calling. This is personal. This is family.

Death study

By David Jolley

I have been pleased to contribute to training days organised by Wigan and Leigh Hospice over the past five years. The hospice has pioneered and developed a scheme of extended hospice/palliative care to nursing homes in the area. This brings the skills and wisdom of the hospice to a wider community of people as they approach death. Care Homes are the most common site of death for people with a diagnosis of dementia so that although not exclusively for people with dementia, this scheme is particularly beneficial to individuals living their last months with dementia and their families – and the staff of the care homes. It is a model which is gaining more support across the country than that which we explored – a specialist dementia service – from Willow Wood Hospice in Ashton under Lyne. There are virtues in both. An amalgam of best practices is entirely feasible and may be the future. In addition to the benefits in improving the experience of last months for all parties, these schemes reduce wasteful and inappropriate use of acute hospital beds, investigations and futile and inappropriate treatment.

This week’s session was notable for the inclusion of a presentation by Professor Peter Fenwick a retired Neuropsychiatrist. I met him many years ago when he contributed to a course on EEGs (Electro-encephalograms) at the Institutes of Psychiatry and Neurology in London. In the way of things I had imagined his life being confined to the EEG laboratory and the study of wiggly lines generated by the electrical activity of the brain as transmitted through the skull and its coverings. In recent years, he and his wife and other researchers, have been studying aspects of the experiences of people at the point of death. We heard of deathbed visitors, a waiting place, non-dual consciousness, transformation of consciousness, a new reality, and terminal lucidity in people with chronic schizophrenia or dementia. I might understand more in reading the Fenwick’s book: The art of dying. Curious.

In the beginning, and at the end

By David Jolley

We have become quite accustomed to the routines of funerals. Most involve attendance at a church service followed by a shorter ceremony at the crematorium or cemetery. We are church people, so it is that the church is usually central to this special day.

Increasingly this is not the case for the population as a whole. Many now die declaring they are ‘of no faith’, so some form of dignified celebration of their life, in keeping with their wishes and views, is organised at a non-religious venue. Cremations with no funeral service are becoming more common https://www.co-operativefuneralcare.co.uk/arranging-a-funeral/funeral-choices/direct-cremation/.

The deaths of people of other faiths are celebrated in keeping with their traditions.

Family and friends, including the church community are also fairly busy welcoming new babies. The traditional welcome into church communities is at a Christening service. The number of Christenings per annum has fallen by about 50% in a decade – only 15% of babies currently receive a Church of England baptism. The procedure requires a church community to come together and for the family and wider church to welcome the child as a member of the Christian faith, supported by their parents, God Parents and the church.

Statistic on statistic plots the decline of religious belief in Europe, so that individuals who have been christened are in a minority, as are the families who are taxed to support them to grow in the faith. How meaningful or realistic will such a commitment prove? The power of fashion and peer pressure is frightening.

Yet as we grow old there is need to review personal experiences, personal priorities and beliefs. Reading Karen Armstrong’s ‘A history of God’ is not easy. But very early on she tells us (p 10) that ’creating gods is something that human beings have always done.’ (‘Creating’ might be questioned. ‘Recognising’ might be an alternative).

‘Our current secularism is an entirely new experiment, unprecedented in human history.’ (p 4).

The roots of certainty or uncertainty are set early. That is not to say that people cannot revise their position later in life – but this is an option not taken by many https://academic.oup.com/psychsocgerontology/article/56/6/S326/610642.