“Always listen to the earth because it speaks to you.” A personal reflection for World Earth Day.

My late uncle Donald died suddenly when I was seventeen but by that age he had already left an indelible impression upon me and had taught me so much. Donald was born and lived all his life on Skye and as far as I can remember never left the island. He was a man who had many struggles not least the fact that he found it hard to communicate. He was someone who in modern diagnosis would be described as having a learning disability. Though he found reading very hard his wisdom was one which rarely appears in the pages of a book. It was an authentic and immediate knowledge, one of intimacy with the seasons and with nature. Donald loved the land and the outdoors; he taught me more than I have remembered about the earth and the rhythm of nature and instilled in me a life-long appreciation and respect. One of the things I remember from the many walks into the hills and moors which we went on was his oft used phrase: “Always listen to the earth because it speaks to you.”

“Always listen to the earth because it speaks to you.”

On Thursday one of the most popular global days of observance will be held. It is World Earth Day. Every year on April 22, Earth Day marks the anniversary of the birth of the modern environmental movement in 1970. As on previous years it is expected that it will be marked by more than one billion people across the globe. The theme of Earth Day 2021 is Restore Our Earth™.

Both individually and collectively we are increasingly aware of the urgency of addressing the destruction caused by climate change and the necessity to sustain and protect our natural environment. However, whilst there is increasing recognition of these challenges, even amongst the most sceptical of politicians, there is also a growing frustration at the pace of response and change. Many of us were disappointed that the Paris Agreement in 2015 demonstrated such a low level of commitment and action. It is clear from all the political party manifestoes for the Scottish Parliamentary elections in a few weeks’ time that the climate and environmental sustainability will be one of the key issues which will influence people’s choice of candidate. Whilst Scotland has been more progressive than some, it is also evident that we have some considerable distance to go.

My colleague Karen Hedge has written about how important it is that those of us who are involved in social care contribute to this urgent national effort to meet climate and environmental challenges. Part of that, I believe, involves supporting the aims of the Health and Social Care Alliance, who recently published a report: Sustainable Health and Social Care: Climate Change and COVID-19’ in which they call for £25 million to support a climate change innovation fund for social care.

We cannot care for humanity without caring for the earth. We cannot hear the dislocation of human community without also hearing the fragmentation of our natural world. To care fully requires a holistic understanding that we are all of us children of the soil and intimately entwined to the earth. Care leaves a legacy of compassion and connection in the lives of those supported and it changes the person who offers care. So too the way in which we care has to be something which future generations recognise as enabling and fostering of their ability to flourish on the earth as citizens of the natural world, connected one to the other. Care is never neutral, it always enhances humanity and it should also sustain our earth.

I believe that we have lost the ability to hear the accent of nature and the truth the earth is telling us. We need to re-discover the rhythms of the seasons of the heart where we accept that to care is not just about caring for a human being in isolation from others in community or from the natural world in harmony. Social care to be holistic needs to do more than pay attention to the challenges and issues of sustainability and environmental protection, it needs to mirror, mould and enhance these. There is a real opportunity that in the creation of a National Care Service in Scotland that we bring together the world of ecological and environmental responsibility with the world of human and social care, be that from the energy we use in care homes, the use of sustainable PPE all the way to the use of electric transport in the delivery of homecare.

I remember many things from my walks with my late uncle, not least the astonishing range of wildlife that at that time flourished on the island in river and moorland. Yet today I am aware of the sad reality that so much of it is gone possibly for ever. Our failure to nurture the earth has led to a shaming of our humanity. As we seek to restore and reframe our social care in Scotland I hope that alongside it and as part of that renewal we can also  nourish the restoration of our earth.

One of my favourite poets was someone who had a rare ability to hear what the earth was whispering to him. It is not without coincidence that the moors and rivers I walked in youth, where I was taught to listen to the earth, are the same ones, in the same glen, beautifully captured in one of his poems.

May we all learn to listen and learn.

Summer waterfall, Glendale

I watch a rock shone black

Behind thin water that falls with a frail sound

To the ferny pool. Elvers are roping upwards,

Tumultuous as hair. The rippling ground

Is elvers only, wriggling from crack to crack.

 

Above, a blackfaced ram,

Its viking head malevolent on the sky,

Peers down, stamps and is gone. A rowanberry

Skims and swims, a scarlet coracle, by.

Between two stones a grassblade breaths I am.

 

Small insect glitters run

On the water’s skin… I turn away and see

Distances looking over each other’s shoulders

At a black cliff, a ferny pool and me

And a tress of elvers rippling in the sun.

© Norman MacCaig, Collected Poems, Chatto & Windus, 1990

Localism vs National models of care: a false dichotomy?

This week Scottish Care has published our Care Manifesto for the Scottish Parliamentary Elections. It has been developed by my colleagues to suggest the areas where they believe the most significant changes in social care need to happen. One of these relates to the proposed development of a National Care Service as suggested by the Independent Review of Adult Social Care, also known as the Feeley Report. I have mentioned in a previous blog how I personally consider the concept of developing a ‘social covenant’ to be one worthy of further exploration and development.

What is meant by a National Care Service is something which has received much consideration since the publication of the Feeley Report. The Scottish Care Manifesto has stated that:

‘We believe such a service can drive consistent, high quality social care support if its’ role and remit is clear and it is developed in partnership with people who have a right to receive that support, the social care workforce and providers. We are presented with an opportunity to improve relationships and understanding, and to rightly elevate social care to equal status with NHS Scotland in terms of leadership and accountability.’

I could not agree more – the potential is enormous. But so too sadly are the obstacles to achieving such an outcome. One is the resistance to the very concept of a national service because of what has been argued as a risk of centralisation and a threat to what is presented as the benefits of keeping things ‘local’. I want to give consideration to some of these arguments in this short blog and to suggest that this is an erroneous and false dichotomy and that the arguments often presented have more to do with self-interest than a coherent defence.

The Feeley Report heard from hundreds of voices, especially those with lived experience of using, working and delivering social care supports. What they heard was a shameful litany of disappointment that original, human rights-based legislation, such as the Carers Act and Self-directed Support Act, had singularly failed to be properly implemented. Scotland has, as I have often argued, enough progressive social care legislation and policy to make this one of the most forward-thinking countries in the world. But we are not. There are many reasons for this, and the Feeley Report articulates the ‘implementation gap’ as a major reason for the disrepair and malaise that is afflicting social care not just now but for decades.

These voices and the testimony of missed opportunity and failed implementation cannot be ignored or set aside as insignificant or unimportant. It is also clear that the fractures and failings of the system of care cannot be dismissed as simply the results of fiscal austerity. The failures to implement progressive social care, to deliver models of collaborative partnership, which give citizens control and autonomy over their care are decades old. These failures are systemic and as Feeley underlines, include the contradictions of diverse charging policies and the postcode lottery of provision dependent upon where you are in Scotland, which local authority department you happen to be under and what focus happens to exist in a particular local area. In other words, and though it was not put as bluntly as this in the Report’s analysis, the failures are in large part because of the very nature of localism which has created such inappropriate divergence from policy alongside piecemeal and patchy implementation. It has been argued that diversity of approach and flexibility of local implementation was so critical. It was not. In an attempt to avoid ‘top down direction’ the world of social care has received local led atrophy.

The delivery of social care placed in the hands of local authorities has clearly failed for thirty plus years and those who use supports and services deserve much better than what they have received. Again to underline lest I be misunderstood, this is a critique of a system not of the individuals at local level charged with working within it. Having trained hundreds of frontline social workers in the SDS Act I never met one who wanted to limit the control, choice and autonomy of someone who used social care support, but I have met plenty who railed against the system, the controls, the oversights and constraints which at local authority level prevented them from truly and authentically doing the job they loved – to help change people’s lives for the better.

So it is perhaps not that surprising that the voice of local authority government has been resistant to the concept of a National Care Service.  In true ‘turkeys voting for Christmas’ style they have argued against the loss of ‘local democracy’  and ‘accountability’ whilst ignoring the Report’s damning critique of failures over which they have presided for decades.

We get a flavour of some of this critique from local government in the COSLA statement on the Feeley Report which whilst welcoming the emphasis on those who use supports and its workforce, goes on to state that Leaders ‘unanimously expressed their grave concern at the recommendations around the future governance and accountability arrangements contained within the Report.’ It went on to say:

 ‘Council Leaders together voiced their opposition to the recommendation which proposes the removal of local democratic accountability from Adult Social Care and the centralising of the service under a National Care Service with accountability falling to Ministers, a move that they described as being detrimental to the local delivery of social care and its integration with other key community services.  They also felt that given the level of funding set out in the Review, Local Government would be well placed to continue to deliver this vital service.’

This presentation of social care reality simply does not ring true for the vast majority of those who have received social care and who spoke to the Feeley Review group nor to those who have as charities, not for profit and private providers delivered social care under local authority commissioning approaches which have consistently treated in-house provision more favourably than out-sourced contractors.

A further joint statement was made with the Scottish Government days before the Parliamentary election commenced. That statement re-stated COSLA’s concerns that ‘it is evident that there is significant discussion needed around the areas in the review that relate to governance and accountability within the report.’ The Cabinet Secretary observed that:

‘Radical reform is never easy and I understand COSLA’s concerns around governance and accountability and we will continue to discuss those. There is much on which the Scottish Government and COSLA agree and by working closely together on the fundamental principals in the report we will overcome the obstacles to build a world leading care service.’

I hardly need to add that those who use social care support, the organisations. which provide the majority of it, and the workforce also need to be at the table lest it become a classic cabal of inter-governmental decision-making.

Resistance to radical change from vested interest is nothing new. When the NHS was being created in the late 1940s we saw the same. GPs and local committees voted 10 to 1 against the proposals of a national service in 1946, demanding things be kept local, ‘near the people and locally led.’ The politicians were also disunited with the Winston Churchill led Conservatives voting against the proposals no less than 21 times. But the vision of a national service prevailed over what one commentator described as ‘obsessive localism.’

What all of this highlights is the age-old debate between national and local approaches. It has aye been thus and those of us old enough to remember debates about a national police service  – which we achieved – or a national education body – which we did not get – will recollect the reaction of local government elected leaders at the perceived loss of influence, budget and accountability. But in reality is this not just a false dichotomy? For social care it is not a choice between a local model on the one hand and a national one on the other. It is a choice between a model accountable to Government centrally with a strong local voice and enabling of local choice or one which is dressed up in the clothes of localism but is as remote and detached from the citizen as any distant central service. risks being. What social care as a whole needs in Scotland at this time  is a change to the failures of the present.

If you look across Europe the balance between local autonomy and central control is a perennial issue in the territorial organisation of states. How much power do you hold in the centre and what do you devolve or delegate to local level? Equally there is much debate today about how you re-invigorate local democracy as right across Europe people have become more and more disengaged from local decision making unless its relevance is seen as being of direct interest and impact. At the same time there has been a renewal of democratic engagement in national and regional governments.

Time does not permit in this blog to consider further the local and national dichotomy in its widest sense but from the perspective of social care,  being able to make decisions locally which directly impact on your care and support is clearly beneficial. I am not arguing, and I do not think anyone seriously is, that all decisions, policies, interventions and accountabilities should always and inescapably be at a national level. But in the timeless tug-of-war between centralisation and decentralisation what should remain the priority is how do we enable the person who uses the support or service to feel in control, autonomous and in the lead? The person and not the system is what matters.

In an age where it is possible to exercise influence and autonomy through the pressing of a phone key, where apps have enabled real participation and meaningful engagement; where democracy has the potential to be ever more proximate and personal, then it is perfectly possible to reform the accountabilities of social care without maintaining a failed status quo.

There are many lessons which need to be learnt from the experience of the pandemic. One of these has undoubtedly been that when it mattered most in a crisis there was an ability to lead from the centre, to instigate change and initiate intervention but whilst still taking account of the uniqueness of the particular and the requirements of the local. We did not have 31 different pandemic responses but one response delivered at local level – albeit as social care providers can attest the multiplicity of local approaches was itself beset with difficulty. There was clearly a time and a benefit for a centralised model and if it works in a crisis it can work anytime.

There will be much debate in the coming weeks and after the Parliament is selected no doubt in the coming months, I hope we can all agree that the local-national accountability and delivery issue does not need to be an either/or.

The Feeley Report envisaged a transformed local accountability in Integrated Joint Boards where representation was real, local, participative and immediate. Most importantly the Report and its ideal of a national care service held before us a vision that those who matter most, the folks who use and will use social care supports in the future, were really in control and in charge, were the engineers of decision-making – that is a vision we simply cannot lose, and which will outlive all the transitory interests of the system defenders. It is their voice, not those of local or national politicians, of workers and the unions, of providers and their representatives, that must be at the heart of all design and delivery. We cannot fail to build a future service rooted in that voice.

Donald Macaskill

The shaming of older people: the need for urgent reform.

I have written many times over the years in this blog that the mark of any society or community that wants to enshrine dignity and humanity is the way in which it treats its older citizens. Events this past week showed just how poorly the governments of the world consider older age.

In New York, but mainly virtually, the United Nation’s 11th Session of the Open-Ended Working Group on Ageing (OEWG) was meeting. The Group has existed since 2010 and is meant to consider the human rights of older persons and identify possible gaps in the law and how best to address them. For some time there has been a growing clamour for a new international treaty or convention for older people.

The 11th session held between the 29th of March and the 1st of April was lively with the largest ever attendance from non-governmental groups from across the globe. One of the reasons for this is the almost universal feeling that the human rights of older persons have been widely broken and ignored during the global response to the pandemic. Indeed speaker after speaker recounted ways in which they felt that the care and support of older people had been given secondary attention, the needs of older citizens had been an afterthought and that the whole of the pandemic had evidenced a discrimination to and disregard for older people’s human rights. It was a series of moving and passionate, angry and demanding contributions. Then…

On the final day of the meeting, April 1st, all those attending participated in the ‘Way Forward’ discussions on how the OEWG should progress its work. International human rights bodies and older people campaigners were unanimous in their view that the drafting of a new UN convention should commence immediately. A number of the Governmental representatives supported this call. But then things began to unravel because the final session almost didn’t take place due to the poor attendance of Member State (or Government) delegates. Many expressed outrage on social media. ‘After one hour and 45 minutes a quorum was finally reached, and the meeting concluded.’ Disappointingly, no decision was taken in the final meeting on the Way Forward or the creation of a sub-group to consider drawing up a new UN Convention.

Now creating a Convention and underlining the legal obligations which world Governments have to adhere to will not in and of itself mean that we will put an end to the glaring discrimination which older people face. I am not naïve and do not think that law alone changes conviction. But it is itself illustrative of the endemic discrimination that older people have faced during this pandemic that representatives of national governments could not even drag themselves to the final session of a UN body dedicated to addressing age discrimination.

The world needs a new Convention so that the human rights of older persons can be advanced and protected.

The lack of action and focus is even more farcical when you consider that in December 2020 the United Nations proclaimed 2021-2030 as the UN Decade for Healthy Ageing. This initiative, led by the World Health Organization (WHO), is meant to be an opportunity to bring together governments and civil society for ten years of concerted action to improve the lives of older people, their families, and the communities in which they live.

According to the Global Report on Ageism, released on 18 March 2021 by the World Health Organisation every second person in the world is believed to hold ageist attitudes – ‘leading to poorer physical and mental health and reduced quality of life for older persons, costing societies billions each year.’ Such a finding is a damning indictment of all our communities.

The aims of the Decade are laudable and include the need for action to change how we think, feel and act towards age and ageing and to ensure that communities foster the abilities of older people. Clearly in light of the passivity of the United Nations last week and  the pervasive ageism in our countries we have a long way to go.

All this might sound and feel to be of academic and distant interest, but it impacts on what we do or do not do here in Scotland. There has been very real unease about the way in which we have responded to the needs of older people in the pandemic. I have written a lot about the human rights failures in our early clinical advice, in our attention to the mental health impacts of lockdown, the use of DNACPRs, in our failure to test practice by human rights assessment, and most especially the impacts on the rights of older people in care homes by a lockdown that went way beyond what was acceptable. There are many other areas where older people feel they have not been heard or valued as the world around them struggled with coronavirus.

It is time for Scotland to join both Wales and Northern Ireland in appointing an Older Person’s Commissioner, to have a post which can hold accountable both national and local Government for their actions and policies as they impact on older people. The work of Helena Herklots in Wales and Eddie Lynch in Northern Ireland has shown beyond doubt that such a post really can make a difference to older people.

I do not have any insight into the political party manifestoes for the election that is a few weeks away, but even if they do not have such a commitment within them, I hope we can all commit to making it one of the legacies of the pain of the last year that Scotland can join other nations in appointing an Older Person’s Commissioner.

The events of the last week in New York show the marginalising of older age in the priorities of world government, they should not be allowed to dictate the response of Scotland to such challenges. How can you have a Decade of Healthy Ageing when you fail to respond to such a glaring need?

Perhaps it is that we need to find some of the angry energy and passionate vigour of older age described by the great Liverpool poet Roger McCough and declare not for us the passive platitudes of political acceptance but the need to transform with urgent vigour and an unsettling of the status quo our response to older age? We will never achieve the aims of Healthy Ageing and truly transform our ageist society unless older age itself acts to demand it.

 

‘Let me die a youngman’s death
not a clean and inbetween
the sheets holywater death
not a famous-last-words
peaceful out of breath death

When I’m 73
and in constant good tumour
may I be mown down at dawn
by a bright red sports car
on my way home
from an allnight party

Or when I’m 91
with silver hair
and sitting in a barber’s chair
may rival gangsters
with hamfisted tommyguns burst in
and give me a short back and insides

Or when I’m 104
and banned from the Cavern
may my mistress
catching me in bed with her daughter
and fearing for her son
cut me up into little pieces
and throw away every piece but one

Let me die a youngman’s death
not a free from sin tiptoe in
candle wax and waning death
not a curtains drawn by angels borne
‘what a nice way to go’ death.’

 

Donald Macaskill

Citizens of another world: autism and older age

Over three decades ago I undertook two placements at one of the major psychiatric hospitals in Scotland. It was during one of them that I got to know George, or should I say that George started to allow me to ‘know’ him. George was the first person I had met who lived with Kanner’s or severe autism. Even the term severe autism is a dubious one often designated by diagnostic models as Level 3 Autism. George needed a great deal of support which his family could not provide, and he ended up in hospital simply because at the time there was no service available to support him.

George struggled as many with an autism spectrum disorder do with social and communication skills and did not use spoken language but instead used a mixture of sound and movement to communicate. He was highly sensitive to light and smell and it took several weeks to learn how to be able to communicate with him. For too many years those around him thought he was of ‘limited’ intelligence but through the dedicated skill of one or two professionals George had learnt to communicate well and with real insight and articulacy.

George taught me about his world through his action, behaviour and communication and sowed in me a life-long fascination for autism. He taught me to see in body gesture and finger flicking a reaching out to bridge our communication, he helped me understand what was meant when he rocked his body, slammed doors or hit himself. He helped me understand the inner frustrations and sensory overload which at time reduced him to acute physical pain. Over the weeks I began to understand that behind his ‘eloping’ and continual wandering there was often an acute incident of a gastrointestinal pain. George allowed me into his world or more accurately he helped me to open my eyes to what he was communicating to me.

Next week from 29th March to the 4th of April it is World Autism Awareness Week. Every time it comes to World Autism Week I remember George more than anyone else. I recall the world in which he lived his life.

If I am honest before I started to meet people like George I had thought of autism as being something which mainly impacted children – which might seem nonsensical today but was a not uncommon view in the 1970s and 1980s. Indeed autism was not included in major western disease classification until that period. But children with autism become adults and then older adults living their lives with autism. On a practical level many of those who are now in older age were never formally diagnosed and have often lived their lives with a minimum or no level of support – the support which would have helped them to achieve a much better quality of life. For not a few older people with autism there have been inaccurate diagnoses or wrong attributions to mental health problems or dementia, which can lead to inappropriate treatment. For too many there is a casual presumption that their behaviour is simply eccentric or the sign of ‘old age’!

In my current role in the care sector the experience of older adults with autism is one which causes me very real concern. Relatively speaking we have so little research and understanding of what the impacts of a lifelong condition like autism are on people who are old and very old. However that which does exist evidences that many older people with autism are socially isolated and have difficulties sustaining employment and relationships. All this is exacerbated with the knowledge that many individuals continue to live with parental and family carers, but inevitably those carers become old themselves and die. The risks of a sudden breakdown when there has been no planning for transition and change are very real, and sadly too many people with autism in late adulthood endure severe poverty and become homeless. I know from speaking to frontline care staff in the community just how many people fall through the gaps in our current disintegrated health and social care system.

Research by Prof Rebecca Charlton from London has shown that age and severity of autism are linked, and that ‘as age increased so did the severity of autism symptoms in social situations, communication and flexible thinking (such as coping with change or generating new ideas or solutions).’ They also found that older people with autism were more likely than younger people to extract rules from situations or prefer structure.

The pandemic has accentuated what for many older people with autism was already a hard and dislocated existence. It has led to very real challenges for those organisations and charities which support people, and it has limited the appropriate access to clinical and medical interventions. It has prevented or halted some positive developments which were focussed on training frontline health and care staff to get better at recognising and responding to late-age autism.

As we seek to recover we must get better at understanding that autism is indeed a lifelong condition, and we must as a wider society become more robust at wrapping appropriate support around people who require intervention in order for them to be as autonomous and independent as they want. Rebecca Charlton has stated that at present we do not even know whether people with autism age in the same way as people without autism in part because of the relative age of our awareness of the condition. People with autism may develop robust coping mechanisms from which we can learn but equally transitions of age may result in sharp deterioration and decline. There is so much we do not know.

In my many days with George all those years ago he taught me that he had a way of seeing the world and being in that world which was foreign to my understanding and knowledge. He taught me that his world was one of value and worth, of depth and mystery, of insight and knowledge. Such sentiments are beautifully expressed by Penelope who shared her poem with the National Autistic Society. I hope as we move forward not just in the next focussed week but thereafter we can as a whole community become more skilled at and dedicated to supporting those older people who live with autism remain citizens of their and our world.

Of another world

I am of another world –

A visitor, a stranger to your shores,

An immigrant born in your heartland.

I am other,

Apart,

A legal alien in native skin,

Vulnerable,

At your mercy.

So treat me gently:

Your customs are strange to me,

Although I was raised within them,

And I fear your people,

Your places,

You.

Accept my behaviours,

As I accept yours,

And understand that I am different,

Not dangerous;

I shall come to love your world;

And it shall become my home from home;

But at heart,

I am always other,

Always apart.

I am of another world.

 

 

Donald Macaskill

 

 

Dying in lockdown: a challenge and opportunity.

Over five years ago in December 2015 the Scottish Government published “Palliative and end of life care: strategic framework for action.” Its core aspiration was that:

‘By 2021, everyone in Scotland who needs palliative care will have access to it.’

Though it did not get a lot of comment or coverage at the time I consider it to be one of the most significant policy contributions of the last few years. It’s overarching aim was rooted in the need to ensure that access to palliative and end of life care was available to all who could benefit from it, regardless of age, gender, diagnosis, social group or location. It stated further that ‘people, their families and carers should have timely and focussed conversations with appropriately skilled professionals to plan their care and support towards the end of life, and to ensure that this accorded with their needs and preferences.’ It acknowledged that communities, groups and organisations of many kinds needed to understand the importance of good palliative and end of life care to the well-being of society.

I have been reflecting on this document and its core recommendations in the last few days. I wonder how far we have advanced in achieving its overarching aim that by this year, 2021,  we would all be receiving the palliative care that we want and need? I wonder if more people today are experiencing the sort of death which they want and deserve, are enabled to die where they want to end their days? I will leave it to others to evaluate the recommendations and their outcomes, but this weekend especially I cannot but consider the extent to which in the last year as a whole society we have had to face head on the reality of death and dying to an extent which perhaps has been unparalled in recent decades.

In a few days’ time we will come together as a nation on the anniversary of lockdown in silence and word to remember not only those who died as a result of Covid19 but the tens of thousands whose death occurred in the last year; a year of detachment and distance; of absent touch and lost ritual. For some it will be a time of very personal and painful remembrance.

Last week in my blog I reflected on the hard and heart-wrenching experience of those who have endured lockdown and death in our care home sector. Those who died in our hospitals and care homes have rightly received much focus and attention. Less noticed have been those who have died in their own homes.

The work of academics at the Scottish Centre for Administrative Data Research at Napier University, Edinburgh, has helped to shine a light on a context which has quite often been forgotten during the pandemic. Their work has analysed data from National Records of Scotland and has shown that the total number of all deaths at home since the start of 2020 was 24,183 up till the week starting the 15th February in 2021. They note that this is 36% more than the average number of people who died at home in the equivalent period in 2015-2019. Their earlier work has also stated that in the early stages of the pandemic there was an even more dramatic change in the location of death. The increase in people dying in their own home has been an astonishing one and is true regardless of geography but it raises many questions which are worthy of further research.

I know from conversations with those who provide care and support for people in their own homes that the last year has been an especially hard one. Lockdown has come with a hard price for so many. A huge burden was placed upon family and informal carers as packages of care and support were withdrawn, especially in the earliest days of the pandemic. Frontline care at home and housing support staff often felt that they were the forgotten frontline with little societal and system recognition for the challenges they were facing.

Over the last few weeks and months I have increasingly heard stories of families and individuals who struggled at home not just with the mental health but also the physical health pressures brought about by the pandemic. There were those who told me that their anxiety over contracting the virus meant they did not contact GPs as early as they should have when things began to go wrong, or they didn’t attend appointments and consultations out of equal anxiety.  I have heard from frontline workers concerns that individuals were not as supported in their own homes with health and palliative conditions as they might have been.

As someone who has been involved in palliative care and bereavement work for a long period of time, its critical central importance as a basic human right is one I have much advocated and argued for. The way we are supported to die well is as important as how we are supported to live well.

So have all those ‘extra’ people who have died in their own homes, received the sort of care and support, the appropriate amount of pain management and palliative and end of life care as they might have? That is a question we need to answer with some degree of urgency not least as many of us suspect that the dislocation of services and supports may go on for some time yet.

Ultimately there will be real benefit in enabling people to be able to end their days in their own home or in a homely setting. The statistics of those who are admitted to hospital in the last few weeks of life for no real clinical benefit are very disappointing. But of course, dying at home is only something we should aspire to if we are able to guarantee a quality of care and support that meets our needs and offered by a workforce who are appropriately trained and resourced. I am not at all convinced that is where we currently are.

Tuesday’s moments of remembrance will also be a time for us all collectively to reflect on the extent to which, both as communities and as a nation, we are going to be there for those who have been bereaved in the last year. Theirs has been a cruel pain, often of isolation and detachment, unable to properly be with those who have died in many cases and in even more unable to say farewell in a way which has supported and reconciled, upheld and soothed their grief.

Over the coming weeks the individuals and organisations behind the development of Scotland’s National Charter for Bereavement will be using social media to raise awareness not just of the Charter and its aims but of what it means for us to create a society which properly supports those who are bereaved and grieving. The way we care for those who are left behind by loss is as important as the manner in which we support those who die. The silence and memories of Tuesday 23rd should act as a springboard and an incentive to ensure that we foster communities of acceptance, belonging and resourcefulness so that all who need support in their bereavement will be able to access that in whatever way they need. Such will be the mark of a proper and long-lasting remembrance worthy of the grief we have endured.

But in the end of the day when the politicians have left the stage, the media has packed up its notebooks and cameras, the commentators have filed their reports, the strangers have walked away, and you are left alone… at such a time grief is ultimately something we carry alone on the shoulders of our heart. Not just on Tuesday coming but every moment of every day there are thousands upon thousands who will cry themselves into busyness and being, who will sorrow themselves into their breath, in memory and recollection which will never cease, for them perhaps only the words of a poet can even come close to the feelings for which we need all of us to be present to offer solace:

Nobody ever told me.

Nobody ever told me

it would be this hard;

that I’d wake up in the morning

and think that you were there

lying beside me in our bed;

that I’d walk down the street

and recognise your shadow

following me in the sun;

that I’d listen to the radio

and hear your voice

inviting me to sing;

that I’d sit in the park

and watch you go by

in a group of strangers.

 

Nobody ever told me

it would be this hard;

that I’d wonder why I should

get up in the morning;

that I’d think making plans

was a child’s playground game;

that I’d rage with anger, red and raw,

at your leaving;

that I’d wonder was it me

who did something

that made you go away.

 

Nobody ever told me

it would be this hard.

 

Why can’t someone tell me instead

how I can stop crying

and dam the tears from soaking my pillow?

How I can start again when all I want to do

is rest in our lost togetherness?

How I can ‘move on’ when I only want to settle

in the place of our memories?

 

And please someone tell me

when will this time come,

the time they all talk of

in easy careless cliche,

the time which they say

will heal all things

and help me to live again?

Beyond words … there is silence: a reflection on care home lockdowns.

We are in the midst of a period of anniversaries. Last Thursday it was a year since the World Health Organisation declared Coronavirus to be a global pandemic and we have to date witnessed the deaths of over 2.6 million people across the world. Today is also the anniversary of the first death in Scotland of someone who had Covid19.

But the 13th March is also the anniversary of lockdown for many of Scotland’s care homes although by then last year a good number of care homes had already chosen to shut their doors to all but essential visitors. At the time no one could have imagined or thought that they would be locking down for more than a few weeks. After all, care homes had been used to lockdowns for other infectious diseases such as norovirus and such experiences were rarely for more than two to three weeks. At most I remember most commentators were talking about three or four months

I recollect at the time writing and talking about the fact that I believed shutting our care homes was a necessary and essential act in order to literally protect and save lives. At the start of the pandemic and for the first few weeks I am sure this early action did indeed save lives. There was so much we did not know about this virus and the fear that many of us felt was real and palpable. And of course in those early days we did not know about asymptomatic spread and the hidden threat the virus held even when staff were wearing what was then an accepted level of personal protected equipment. We did not know the impact of the spread of the virus and the hidden killer which it was.

Over time and especially as protective measures were finally introduced such as testing new admissions to care homes and the testing of staff including those who were asymptomatic the balance of protection against exclusion was felt by many to increasingly be wrong and misplaced. That is why the publication in recent times of new Guidance in Scotland called Open with Care has been so important. That is why it is imperative that we now realise especially with all the mitigations in place that the human right to association and contact is intrinsic to individual health and wellbeing.

An anniversary is a moment for reflection and consideration about actions that were taken or not taken, about mistakes that were made and lessons that need to be learned. I remain convinced that lockdown was essential at the start but if we consider what we know now it is clear that moving forward, and given the almost inevitability of future pandemics, that we cannot again exclude people from essential contact and relationships. Given what we now know surely we have all of us collectively to make sure that those who live in care homes, in sheltered settings or indeed who are patients in hospitals do not experience the isolation and exclusion which has been theirs in the last year?

So today, and especially tonight as I light a candle, in reflecting and in remembrance, I will be thinking of the countless hundreds and thousands who have lived through this lockdown pandemic in our care homes. I will be thinking of the residents and their families and friends, and of the staff who despite at times overwhelming fear and anxiety put themselves daily on the frontline to care and give support. They were and are the ever-present ones whose solidarity of compassion and care cannot be forgotten. And I will also be thinking of those whose life has ended in the last year. For though hundreds have died from Covid there have been countless more who because of restrictions and exclusion have not been able to spend the time they have wanted and needed with family members. There have been too many who have died alone without the touch of love from faces known and cherished in both care home and hospital.

We can never undo the past, but we can commit to making sure that we learn the painful lesson that lockdowns in care settings should be limited and specific and should never again extend to the length of time which they have. I believe this also means we have to work seriously at thinking today how we can enable contact and care from family to be delivered and supported even during situations of ‘outbreak’ and even in what we have come to call ‘Covid wards.’

This last year has taught me both the power of words but also the necessity of silence. There are times at which you simply cannot wrap your feelings into words and so it is better to be silent. There are times when what you hear and experience is so profound whether by shock or sadness that it is better to rest in silence. There are times when the pain you witness and feel makes silence rather than words the only companion to the hurt.

The writer Ben Okri sums this up well in ‘Birds of Heaven’ :

“We began before words, and we will end beyond them.
It sometimes seems to me that our days are poisoned with too many words. Words said and not meant. Words said ‘and’ meant. Words divorced from feeling. Wounding words. Words that conceal. Words that reduce. Dead words…

We are all wounded inside one way or other. We all carry unhappiness within us for some reason or other. Which is why we need a little gentleness and healing from one another. Healing in words, and healing beyond words. Like gestures. Warm gestures. Like friendship, which will always be a mystery. Like a smile, which someone described as the shortest distance between two people.

Yes, the highest things are beyond words.”

So as I reflect on this anniversary of lockdown I will seek a place to be silent, to be beyond words. I will listen beyond words to silence, to reach beyond tears to healing, to find beyond hurt a new determination, to grieve beyond this day and to commit to uphold and support others.

Every single person who has been affected by the care home lockdown during this last year will have their own memories beyond words and today’s anniversary will be hard and painful for far too many. But today must also be the end of the hardness and the start of reconciliation and restoration, of renewal and hope. Today has to be the moment not solely to remember and grieve but to commit to working together to change tomorrow. That work can only ever be done in collaboration and partnership, not in anger and fear, not in distrust and hate, but by finding that space where we can sit together, work together, commit together… that place which changes our future by our own hands… that place which is beyond words and is the silence of two people, of a whole community, loving and supporting one another.

Donald Macaskill

 

Butterflies and Caterpillars Say No to the Age Gap: a reflection.

I was walking along thinking about what I would say in this blog, aware of the fact that it is National Intergenerational Week from the 8th-14th March, when my 6-year-old companion opined – apropos of nothing – “Ladybirds are different from caterpillars. They don’t look like, but they are the same; they are family; I like them both.” Now I suspect that this observation has arisen from an over-abundance of David Attenborough and Adam Kay’s Anatomy –(which if you have not read you should! ) – but it is so apposite.

Intergenerational Week is this year an online campaign backed by many organisations and is all about celebrating the times when people of all ages come together, make friends and work, learn, relax and change one another. In the year that has passed we have so missed those moments of connection and togetherness as lockdowns have separated old from young, generation from generation, and the absence has ached and hurt. Perhaps those who have missed the connection between different ages the most have been residents in care homes and even though in Scotland indoor visits are now starting again we all long for the day when children can see grandparents and great-grandparents.

The organisers of Intergenerational Week also point to a pre-pandemic reality which I know for countless folks rings true and that is that for many of us being connected across the generations has changed over the years. We are a long way off from the times when most families lived together across the generations, or at least in close proximity. Many of us live our lives a distance of time and travel away from our older generation not least because so many are having family later in life. Busyness, older parenthood, changing leisure patterns as well as mobility have all affected family generational connections.

Last week I wrote about the impact of loneliness and isolation during lockdown on the mental health of all people, but perhaps especially the old and the young. The pandemic has taught us a painful lesson about the risks of loneliness and isolation, and the importance of connections which previously we might have taken for granted. The pandemic has also in a positive sense shown us the ability of human individuals to reach out, to cross divides, to make the effort to get to know, to be concerned for, and to connect with those who are different from us regardless of age or circumstance.

Moving forward we need to work hard at not just restoring the inter-generational connections and opportunities we used to have before the pandemic, but we also need to put effort into making sure that we can create new opportunities for the age divide to be removed and shattered.

We need to, I believe, do much more at creating spaces and places where the generations can work and relax, live and simply be together. There is a real risk that we create divides in the name of infection prevention that limits our capacity to be close to others and to form new and meaningful relationships across the generations. One of the worst legacies of our pandemic response – though I know a health necessity- has been the idea of social distance. To be social you can never be distant, you have always to be close and proximate, alongside to touch and be changed by interaction.

But the pandemic has also shown us the risks of creating false divides across the generations. There have at times not least in media and popular dialogue, been the risk of creeping age discrimination. The prioritisation of the welfare of the young should never be seen as an opposite to caring for and the focus upon those who are older. Community cannot be created by binary choices or by accentuating the value of one group against another. Community is always nurtured when all peoples regardless of status or role, culture or origin, and critically regardless of age are included, valued and heard.

We can do many more things to work at promoting and advancing inter-generational activity and opportunity. We can resist the temptation to create older age into ghettos- in villages separate from the living of youth; we can create care facilities for those who require support in the heart of our communities and cities. We can resource better models such as student and older age co-operative living, which enable the generations to live, move and have their being in connection one with the other.

A couple of weeks ago I was in a meeting where representatives of Young Scot shared their issues in relation to technology, including the challenges of digital poverty and exclusion. On hearing these issues I was aware of just how similar the challenges they spoke of are for those of an older generation. In an era of increased dependence and reliance upon technology and digital, the risks of technological exclusion and digital poverty don’t discriminate on the basis of age alone. However the benefits of inclusion equally cross the age divide. The potential of those who are  young who possess the skills, confidence and familiarity with technology to share these with those who are older in order to enable technological and relational connection across the generations are immense.

The potential of inter-generational connection is immense; it is so often untapped and rarely prioritised, but in essence it is what creates truly inclusive communities, with or without technology.

The motto for the week ahead is Say No to the Age Gap – it is one grounded in the age-old insight that we are all of us so inter-connected that a focus that does not prioritise and attend to the needs of all, fails all. We need to learn to recognise beauty, flight and freedom in the caterpillar as much as we do in the ladybird. Age is but the outer skin of reality which hides the real person.

I love the insight of the continuous flow and connection between all ages and generations French poet Antoine de Saint-Exupery depicts in his poem Generation to Generation. His words also carry with them an injunction and encouragement to us all that it is our task and responsibility to be the both the teachers of tradition and those who learn from all ages:

In a house which becomes a home,
one hands down and another takes up
the heritage of mind and heart,
laughter and tears, musings and deeds.

Love, like a carefully loaded ship,
crosses the gulf between the generations.
Therefore, we do not neglect the ceremonies
of our passage: when we wed, when we die,
and when we are blessed with a child;
When we depart and when we return;
When we plant and when we harvest.

Let us bring up our children. It is not
the place of some official to hand to them
their heritage.
If others impart to our children our knowledge
and ideals, they will lose all of us that is
wordless and full of wonder.
Let us build memories in our children,
lest they drag out joyless lives,
lest they allow treasures to be lost because
they have not been given the keys.
We live, not by things, but by the meanings
of things. It is needful to transmit the passwords
from generation to generation.

Donald Macaskill

“I need to be found”: mental health and older age.

One of the saddest consequences of the Covid pandemic has been its impact, not least through lockdowns, on the mental health of tens of thousands of individuals. There is thankfully a wide and extensive acceptance of these impacts and a shared resolve across politics and society to do something about it.

I am also pleased that there is a growing recognition of the mental health impacts of the pandemic upon older people. This last week has seen an excellent article in the British Medical Journal on this very subject. But in a general sense, both societally and politically, the mental health distress and damage on older people has unfortunately been a lot less written and spoken about and yet it is, I would suggest, of equal criticality as the mental health impacts upon children, young people and those of middle age.

I was reflecting on these realities in preparing for a contribution this coming week at a roundtable organised by Voluntary Health Scotland and the Open University. The session is entitled Falling Off a Cliff at 65: serious mental health issues in later life. It is painfully clear in their work that the mental health of older people have been significantly impacted by the pandemic and lockdowns.

Undoubtedly, there has been in the last decade a growing awareness of the significance of dementia and delirium in the mental health of older Scots. The problem is, as those of us who work in older people’s care and support, know only too well, mental health and distress in older age goes way beyond these two conditions.

I wrote a blog on this subject some four years ago and sadly not a lot has changed. There has always been a risk that the focus on dementia has taken our eye off other mental health and life enduring challenges faced by older Scots. The absence of a distinct focus on older people’s mental health issues in the 2017 national strategy was particularly disappointing.

I remember speaking to someone who had lived with chronic depression most of their adult life and had received good supports until they got to 65 years of age. Then almost overnight, he told me, it felt like the system was abandoning him and the supports he had been used to changed and disappeared.

“It was like standing at a window and seeing everything and everyone who had helped you live your life, especially in the down times, walk down the street and wave goodbye. I felt really alone.”

That sense of abandonment is evident in the research undertaken by the VHS and the Open University and sadly it is the experience of too many once they have reached the age of 65 that it is like ‘falling off a cliff’ in terms of service provision. By March 2020 both organisations had gathered a level of evidence, but then paused their work due to Covid-19. You can read their initial report here. I am pleased it is starting again not least because the problems remain and have undoubtedly been exacerbated by the pandemic.

When I speak to frontline staff in the community and from what people tell me the pandemic has resulted in a worrying deterioration in the mental health of older Scots. Whilst there has been an understandable and appropriate focus upon the impact of lockdown on people in care homes, there has been less focus on the impact upon older people in the community.

People who might before have developed routines which enabled them to be connected to others and therefore to maintain their mental health have had those connections limited or severed. There has been an exponential growth in loneliness and isolation; self-help groups and therapies have stopped or become limited; and the reality of digital poverty for older people has meant on-line and virtual equivalents have not been an option for many.

Speaking to community nursing staff I hear stories of significant dehydration as people have neglected their nutrition and wellbeing, of increased confusion, loss of memory and motivation, increased frailty and depression. There is a growth in the number of people falling and losing weight. I have heard too many stories of older people separated from family contact, disconnected and downcast, alone and empty, isolated and too often ignored.

The mental health impact of Covid on older age is profound and shaming. This was already a population more likely to experience health inequalities, more likely to be socially isolated for longer periods of time and to suffer more profound impacts from the requirements to shield and protect.  All that we developed as tools for connection and protection have been used less by those of older age. This is a population much less likely- partly through frailty but also through fear, to exercise and self-motivate, to fight the black dog of the night through the light of activity and exercise. Depression has clearly increased to worrying levels and reports of self-harm at anecdotal level are deeply worrying.

Before Covid we needed to get much better at supporting people who have life enduring mental health challenges to transition from adult to older people services. This includes properly resourcing the older people care sector to train and equip staff to both recognise and to deal with mental health issues and challenges beyond dementia and delirium, and also to give greater priority to enable the development of new models of support which can cater for individual and particular mental health needs in older age. With age comes so many losses over which the individual has little control but around which it behoves society to provide support.

But much more than that we have to as a whole society take older people’s mental health seriously. We have to accept the crippling reality of hurt that is the daily grind of too many and has been for decades. Mental ill health is sadly not solely the experience of youth.

We need to get better at finding those who need to be found, naming the hurt and answering the plea. We need to remember deep inside that agony has no date by which it is spent, distress no destination at which it departs, depression no age by which it is managed. For too long we have swallowed the myth that age conquers the mind and its ravages, that with experience comes coping and with chronology challenges diminish. Mental illness has no use by date, it does not lessen as bone and muscle decline, it merely changes its whisper to shout louder in another tongue. What age seems to do is to increase absence and heartache for too many at just the time that some in society seem to consider that the expense and effort of support is best offered to others. Scotland has the opportunity to put the mental health of all our citizens first and foremost in our recovery from Covid, and a focus on older people’s mental health issues has to be central to that effort.

The model and actor Cara Delevingne beautifully captures the necessity that is the challenge to all of us – to be open to find, regardless of age, those who need accompaniment to journey through the landscape of the mind.

 Who am I? Who am I trying to be?

Not myself, anyone but myself.

Living in a fantasy to bury the reality,

Making myself the mystery,

A strong facade disguising the misery.

Empty, but beyond the point of emptiness,

Full to brim with fake confidence,

A guard that will never be broken,

Because I broke a long time ago.

I’m hurting but don’t tell anyone.

No one needs to know.

Don’t show or you’ve failed.

Always okay, always fine, always on show.

The show must go on.

It will never stop.

The show must not go on,

But I know it will.

I give up. I give up giving up.

I am lost.

I don’t need to be saved,

I need to be found.

Depression by Cara Delevingne

 

Donald Macaskill

Losing a language: dementia and bilingualism.

I have always been fascinated by language and the way we communicate. Perhaps part of the reason for this is that in the early stages of my life it was an issue that dominated a lot of my waking hours. I was an identical twin born to two parents who spoke Scottish Gaelic most of the time. Like many twins – indeed over half – we developed our own ‘twin speak’ (cryptophasia). Twin language is a way twins use to communicate with one another and is a language others cannot understand. It is typically full of onomatopoeic sounds and new words adapted from adult language which makes it sound as if it is understandable but to the non-twins it is usually not. Combine that with a good dose of Skye Gaelic and when I went to primary school it didn’t take long before frequent sessions with the Speech and Language therapist became part of my weekly syllabus! It meant in practice that when we went to primary school we had to un-learn and unpack the communication constructs of our early years and learn to speak a language and a system of communication alien and foreign to us.

It was there at speech therapy – or at least in the estimation of the therapist – where I was taught to ‘speak properly’ and of course to speak English the self-declared language of the educated and professional.

That last observation is only a bit tongue in cheek. Gaelic has long been marginalised as a language unsuitable for intellect and knowledge. My late great-aunt was a strict Skye headmistress who had to discipline school children for speaking Gaelic whether in classroom or playground yet in her own home she hardly spoke English. She showed me the directives that instructed her to suppress Gaelic.  Indeed my own parents belonged to a generation where they had been ‘told’ even if they did not intuitively believe that Gaelic would keep their children back!

I’m reflecting on the issue of language and mother-tongue because tomorrow, the 21st February is the United Nations’ International Mother Language Day designed to “promote the preservation and protection of all languages used by peoples of the world”.  It is a day where we are encouraged to celebrate the diversity of language in recognition of the role they play in cultural and societal diversity.

Language is critical – it can be a gateway to a world of discovery or a door slamming in one’s face, limiting progress and access, shutting off opportunity and possibility. I know that because Gaelic was taught out of me, given no value or credence, and as a result my own ability to express myself, to be confident in using English my non mother-tongue, held me back for a period of time. It undoubtedly created in me a dislocation where I wanted to use the tones and rhythms, the timbre and sound of Gaelic but was dragooned into the disciplines of what I felt then was an inexpressive English tongue.

My own early experience has meant that I am probably more sensitive to the importance of not making assumptions about those whose language is not my own and am utterly convinced that the suppression of any language causes cultural and individual damage and trauma. And yet we live, perhaps especially in the United Kingdom, in times where monoglot imperialism assumes that English should always be the dominant form of international exchange.

Language helps to knit our identity, it weaves us into the fabric of community and culture, it nourishes the poetry within our bones and feeds the dreams within our blood. Language is the bridge which crosses divides and can be the pull of lover, the painter of song, the harbour for unsettled times.

Due to globalisation the uniqueness, the colour, the vibrancy of language is increasingly under threat as the world rushes towards the grey homogeneity of the latest lingua franca.

Every two weeks a language disappears and according to the United Nations at least 43% of the estimated 6000 languages spoken in the world are endangered. ‘Only a few hundred languages have genuinely been given a place in education systems and the public domain, and less than a hundred are used in the digital world.’

I have always had a love affair with Gaelic, yearning for a lost fluency and familiarity, but she has been a mother tongue to whom I have been a less than dutiful child. It is a loss which I have increasingly regretted. not least because the critical importance of bilingualism came home to me a few years ago as I witnessed my own mother live her last years with dementia.

Her later years were a time where as the disease progressed she turned into the world of her earlier memories, developing sharp recall and detailed description for days long since lost in time. It was also a time when she increasingly reverted to her mother tongue, the language she knew from childhood, the tones and timbre of which were the companion of childhood and culture, the oxygen of love and belonging.

We now know from numerous research studies that being bilingual is one of the forms of cognitive stimulation that requires a very different and diverse range of activity within the human brain. On top of this we have solid and extensive research to show that the onset of dementia symptoms in individuals who are bilingual can be delayed by between four to five years compared with monolingual individuals.

Just as with my own mother I have heard stories from care home staff who have described how individuals with dementia who had reached a stage of little or no communication, came alive if there was a carer who was able to speak to them or sing to them in their own language. Just as with my own mother I have seen the spark of light in tired eyes as they have remembered moments and memories re-captured through the memory of song in their own native tongue.

We desperately need to value the ability to use mother tongues more than we do. So it is that a carer with a bilingual or multilingual skill is, I believe, a greater asset than one who is not. We have an impoverished view of language which limits not just our ability to meet the individual needs of people but diminishes the whole fabric of our commonwealth. Our language is not just the way we communicate, it is an intrinsic part of our identity, of who we are as a person. It is both an enabler of our belonging to community and a sign of that belonging.

So personally I will commit to do better to re-capture my lost tongue, even if my partner- in conversation is no longer around, but I will also continue to stress that for us as a society to truly care for another, professionally and personally, we need to tune ourselves into strange and different  tongues, we need to learn to love the language, we need to nourish all those sounds of colourful words unknown to us.

The poet W.S.Merwin in a haunting poem captures just what it is we lose when we lose a language.

LOSING A LANGUAGE

A breath leaves the sentences and does not come back

yet the old still remember something that they could say

 

but they know now that such things are no longer believed

and the young have fewer words

 

many of the things the words were about

no longer exist

 

the noun for standing in mist by a haunted tree

the verb for I

 

the children will not repeat

the phrases their parents speak

 

somebody has persuaded them

that it is better to say everything differently

 

so that they can be admired somewhere

farther and farther away

 

where nothing that is here is known

we have little to say to each other

 

we are wrong and dark

in the eyes of the new owners

 

the radio is incomprehensible

the day is glass

 

when there is a voice at the door it is foreign

everywhere instead of a name there is a lie

 

nobody has seen it happening

nobody remembers

 

this is what the words were made

to prophesy

 

here are the extinct feathers

here is the rain we saw

 

W.S. Merwin, from The Rain in the Trees, 1988, published by Alfred A. Knopf.

 

 

Donald Macaskill

Love and loss in pandemic times: Valentine’s Day 2021. A personal reflection

Tomorrow is St Valentine’s Day and this year it will be markedly different for all of us. Doubtless Hallmark et al will still be much used though I suspect it will be as a result of mainly online card orders; there will be expensive Take Away Valentine dinners and no doubt the florists will still make needed revenue from exorbitant costly red roses. But for many Valentine’s Day will simply not be the same. For thousands it will be a day of emptiness and sadness, regret and remembrance.

This time last year the Guardian newspaper carried a story entitled ‘Love in the time of coronavirus. ’ It described the attempts of the crew of the Diamond Princess cruise ship to make Valentine’s Day as normal as they could for the thousands of passengers who were quarantined on the vessel as it sat off the Japanese coast. You might remember the story of how one by one crew and passengers were struck down by this new virus which had swept China and was beginning to affect many countries across the globe. By Friday 14th last year 218 passengers and crew had shown positive results among just over 700 who had been tested. As the journalist commented: ‘The ship’s once carefree community, who until two weeks ago were making calls at ports across the far east, is now host to the biggest single cluster of coronavirus cases outside China – and by some margin.’

A year on and such instances seem almost unexceptional if not sadly routine as 2.7 million people have succumbed to this deadly virus with millions more having been infected.

This last year has witnessed such a degree of loss that it can almost be hard to contemplate. Indeed I came across a story this week which seemed to encapsulate the way in which our normal has become abnormal; but also the way in which folks are trying to hold onto something familiar and trusted when all the usual markers of life seem to be swept away.

Deborah De La Flor has been a florist in America’s Florida coast for over 40 years. She has never experienced a February like this one. “At a time when someone is sending you an ‘I love you’ card, someone is sending an ‘I loved you’ card,” said De La Flor,

As America’s Covid death toll sits near 460,000, florists are in equal measure creating wreaths and bouquets in a strange synchronicity of love lost and love held.

At about the same time last year I was meeting with colleagues in my role as chair of the working group creating Scotland’s National Bereavement Charter. Few of us could have expected that the very way we grieve and deal with loss as a society in Scotland would be changed out of all reckoning in the months ahead. Traditional means of remembering and celebrating the lives of loved ones have been altered beyond familiarity; we have lost ritual and the rhythm of farewells, and despite strenuous efforts a sense of the functional and mechanical has crept into moments of departing. I fear we are in danger of losing the comforting power and the necessity of mourning. This past week I attended a funeral and the restriction on numbers, the inability to be with people afterwards, to share memory and laughter, to hug and console, makes the whole experience of funerals during lockdown so hard for people.

Today in this weekly blog I want to reflect on two issues, the first is that of care home visiting, the second the wider implications of loss during the pandemic.

At the start of the pandemic care homes closed their doors in order to save lives and protect residents. Many managed through great professionalism and dedication to do just that. But the virus which we even then called the ‘novel’ coronavirus was so new and different that despite all efforts it got in and destroyed with horrendous harm. Throughout all the early weeks and months as numbers increased and we experienced the full impact of the first wave the doors of care homes remained closed to family and loved ones except sadly at end of life. Then over the months small steps were taken to open up, first outdoors and then indoor visiting, the latter only really starting with testing machines sent to care homes in mid-December. Some homes were confident in going further than the guidance, others were more reticent and concerned. Caution and protection were the bywords, but it became increasingly clear to many that so much avoidable harm was being done by the desire to protect at all costs as deterioration and decline, loss of motivation and connection became so evident.

Throughout these months many families and relatives have experienced anguish and heartache being separated from their loved ones. Others have been too frightened to even contemplate going into the care home. They have lost moments of togetherness that will never be re-captured. Care home staff and managers have struggled with the stress and strain of trying to do the right thing for all amidst growing pressures of demand.

All those involved in the tragedy of coronavirus in care homes share one desire – a safe restoration of life and contact as it used to be as soon as possible. Before the virus I could count on one hand instances of dispute and disagreement over family contact. Today the key relationship between family and care home staff is much more fragile than anyone would ever want. I have never met anyone who deliberately and consciously for no reason wants to keep people apart in our care homes; rather the best care homes have always recognised the role of family as not a ‘visitor’ but as a part of their community.

So as has been reported in the media many have been working hard to try to change all this despite the fact that we are in the midst of a second wave and living with a strain which is much less easy to control, manage and supress. Doing nothing has and is not an option. Moving forward ending contact should only be in exceptional circumstances never the norm. People must be safely brought together so that we end what has been a nightmare for so many. How we do that is what is so critical at this time given that we cannot simply go back to the way we were.

As has been reported in the media and noted by the First Minister, and in all likelihood next week, new guidelines for the restoration of meaningful contact will be published. They have been developed in wide consultation and partnership with family representatives, care home providers and Government clinicians and advisors. They are about working together to restore. What is important about them is that they are a steppingstone to something closer to normality. They are incremental in their nature but their outcome is clear and definite – the restoration of meaningful contact.

But in order for them to mean anything I am convinced that we need to make this journey together, supporting one another, assuring when there is anxiety, reducing fear, motivating through example and reducing the risk of creating rejection. In my experience the process of helping an individual whether staff or family member overcome fear will be one which requires us all to listen to the views of others, work through our shared intent, and together move forward. It is a time for individual conversation to address the needs of each person recognising that a care home is a community of multiple voices, it is not a time for blanket decisions and policies that forget the needs of each unique individual.

So as I sit here on the day before Valentine’s Day I think and know that this is our singular most important gift of love this year – to restore meaningful contact between families and residents in our care homes. I know I and many others will commit all energies over the coming days and weeks to enable that to happen. In so doing we will address fear, reduce anxiety and manage emotion. In so doing we will hopefully listen more and talk less.

I reflected above about how this has been a year of crippling loss and that is not only for the thousands who have died of coronavirus, but the thousands left without loved ones who have died from other conditions. It has been a harrowing and hard year with so many of us unable to grieve and say farewell in the way we have been used to or the way that has comforted us in the past.

I have written before about the need for a national day of mourning and I accept that we still have a way to go before such a formal national moment to remember can take place. But in all my work around bereavement and grief I increasingly feel that we need to come together – virtually and physically – to show one another the solidarity of our loving, remembering what has happened and is still happening. Maybe this becomes especially acute at this time of year not just because there are thousands who will be spending their first Valentine’s Day without the touch of the person they loved, but because we are coming close to the first-year anniversary of this pandemic.

Marie Curie have recently launched a #DayofReflection for the 23rd March 2021. They want it to become an annual day which will give us all ‘time to pause and think about this unprecedented loss we’re facing, and support each other through grief in the years to come.’ On the Day they want to hold a national minute of reflection at 12pm as well as other events and supports. You can find information at https://www.mariecurie.org.uk/get-involved/day-of-reflection.

Such markers and events will not be for everyone but I think collectively we do need to do something as we try to deal with the pain and hurt of the last year.

There are too many who will never be able to re-capture the lost contact and touch which this virus has prevented them from experiencing; there are too many who have died alone with only the love of stranger to console and hold them. We cannot re-write that story but what we can do is to support one another, make the change that needs to be made and be determined to be there to comfort and hold up hurt.

In Finnish there is a concept called “sielunmaisema” – which literally means “soul-landscape” or “soul-scene”; it denotes a particular place that a person carries deep in the heart and returns to often in their memory. I think we all need to create such a space or place, external or internal, where we can cradle the moments of memory of those we have loved and lost, of those we are separated from. We need such a place as a society for I fear we will rush beyond remembrance to recovery without thought for the pain hurting at the centre of our community. But we also need to nurture that space for our own mourning and grief, and that for many might not be for a person, but for a dream, a role, a relationship, which the passage of time and the cruel reality of the last year has taken from us.

Valentine’s Day 2021 will be different, for most of us, it will be virtual, but I hope it will also be a time when if we need to we can take space to mourn, if we want to we can commit to action, and that we may all discover our own sielunmaisema. I end with words of a favourite Finnish poet Helvi Hämäläinen

For one day I’ve the right to mourn,
for one day I’ll shut the windows of the sky,
I’ll dismiss the blue,
I’ll raise a black sun to mark my mourning.
For one day I’ll wilt the flowers,
for one day I’ll silence the birds.

I’ve the right to mourn one day, I’ve the right to mourn.

Donald Macaskill