If the weather allows this weekend I will hopefully escape the house and get into the garden to start to prepare the soil for the seasonal planting of bulbs. I’ve always loved gardening and open spaces, perhaps it’s me getting in touch with the Hebridean genes of ancestors who farmed the land, even without their skill and ability. Even when I have been in a place without a garden I have always wanted green life in my space. This time of year, in particular, is one that gives me a sense of the natural rhythm of existence, as planting bulbs kindles my inner hope for renewal and rebirth after the anticipation of the deadening and bleakness of winter. But of course, as any gardener knows only too well the quality of the resurrection of vibrancy in the spring, the depth of colour and vigour of harvest, is always conditioned by the soil and its preparation. You cannot sow hope in rotten soil.

On Wednesday along with colleagues I will be starting a three-day ‘Homecare Festival. It is an attempt to focus on the astonishing work of care and support that happens in the heart of our communities. On any one day of the week there are tens of thousands more people being cared for and supported in our communities than in our care homes and hospitals combined. They are being supported to play their part as full citizens of their communities. It is a care and support that gives them independence and freedom, meaning and purpsoe, contribution and value. Yet the homecare sector is one which is often ignored and rarely recognised. Never has that been more true than during the last few months of Covid19. Despite attempts it has been rare for the media to tell that story or focus on what has been happening in our communities. Perhaps understandably but no less inexcusably our focus in society has been on events in care homes and hospitals, and not in the homes beside our living. This needs to change.

In the last few days as I have prepared for the Scottish Care Homecare Festival, I have read report after report detailing the silent and invisible pandemic which has been affecting our old and disabled in communities right across Scotland.

At the start of the pandemic tens of thousands of packages of support were withdrawn – in part by local authorities seeking to prioritise resource and in part by families who feared that staff going from home to home would bring in the virus. The effect of these interventions is only now becoming clear. A couple of weeks ago a homecare worker wrote to me and detailed some of what she was witnessing and seeing. She spoke of older folks she had known for a long time showing visible signs of decline and deterioration; of a gripping sense of isolation and loneliness because with restrictions some people living with disabilities were cut off from friends and family; she recounted the growth in cases of body sores because folks had become immobile without exercise and unable to go out into the community; and most worryingly she told of the dozens she knew whose mental health had been shattered by lockdown. The stories of thousands of individuals who receive homecare supports will not often be heard or told but their pain during the pandemic is no less real for the lack of telling.

We stripped away thousands of packages of support and it is clear as we start the possibility of yet more restrictions moving into autumn and winter that many of these have not been restored. Some undeniably because family are still caring because their work has not re-started. But I fear that many more have not been re-started because of a decision to save money and a presumption that if people coped during the pandemic then they can cope now. I have heard such folly voiced and foolishness it is indeed. If for no other reason we have to reckon in that calculation the truth which tells of a 25% increase in ‘excess deaths’ in our communtiies of people living with dementia, diabetes and orher conditions.

Even before the pandemic homecare in Scotland was in crisis, it was rooted in a rotten soil. That rottenness was for many reasons. Chief amongst them was because we have failed to embed ground-breaking legislation which gave citizens control and choice of their care, instead the ‘system’ has held on to its power and resource by refusing to inform, to give people control over their budgets, and to really empower people to take control of their lives. The system has played the game of ‘self-directed support’ but not released its spirit, vested interest has cut off the shoots of real change before they could flourish.

Even before the pandemic we witnessed the perversity which comes from presuming that care can be delivered in fragments of time. Across the country there are packages of care counted out in 15 or 30 minutes created by number checking commissioners of care without regard to the urgent need for people to be treated as human beings rather than coins in a machine. There is no way one can deliver dignified, rights-based care and foster and nourish relationships in slivers of time.

Even before the pandemic we treated our frontline care workforce shamefully. Local authorities whilst boasting of their own Living Wage Employer and Fair Work practices bought care on the cheap by drawing up contracts with care companies knowing that their allocation of resources prevented those organisations from delivering fair terms. And to add insult to injury the same authorities introduced electronic monitoring systems to effectively ‘tag’ frontline carers so that they could be stalked and controlled.

The pre-pandemic state of homecare in Scotland – and therefore by volume – social care as a whole was shameful, pathetic and rotten. And it still is. Radical change is needed. If we are to flourish and come to a spring of renewal the soil needs to change and the system needs to be overhauled.

So, at the Homecare Festival I hope we will hear of a vision which will be about giving control and power to the citizen who is supported and who uses care rather than to commissioners and bean-counters. I hope we will hear of a vision where workers are trusted and given autonomy, not clocked and checked at every turn. Where terms and conditions are resourced for equality and fairness rather than a two-tier system where local authorities look after their own first and others get the fag-end of attention and support. I hope we will hear a vision where prevention rather than reaction is at the heart of the packages of support we create. And most of all I hope we hear of a vision which adequately resources the care of people in their own home rather than seeks to buy care on the cheap. All of this would show we care about care rather than empty slogans.

At the heart of all this – as we enter a Covid autumn and winter, I hope that when we plan, we remember that many of the thousands of family carers who took over care or carried on care without support are absolutely on their knees. Families are exhausted, the act of 24/7 caring has spent and drained them. They urgently need support especially where traditional day services and respite opportunities have been stripped away during the pandemic. We need to critically re-prioritise homecare and seek to invest more not less.

Across Scotland today there are thousands of people in urgent need of support to rehabilitate their physical bodies after months of decline, there are hundreds in need of psychological and emotional support after isolation and emptiness; there are yet more in need of being made to feel that they matter, that they are noticed, that they are valued.

There is much talk of winter planning –but if we do not plan to tackle this pandemic in our communities and in the homes of those who require support and care then we will reap a terrible harvest of regret in the spring. We need to renew the soil, replace the rotten practices of the past with refreshed vision and humanity. We can only sow hope and healing in conditions that allow it to grow.

The great Irish poet Derek Mahon died on Thursday night. He was a poet of his time asking uncomfortable questions to those who would rather not hear. I think homecare asks us the same. We can go through the next few months choosing to ignore the silent pandemic in our streets, in the homes around which we settle our living, or we can open our eyes to create a vision of a better way of caring for and upholding one another. We can collude with the ‘old conspiracy’ of staying as we are, settling for the soil we have or we can create a fresh hope for spring because the truth of homecare around us should surely ‘exact more interest than casual pity.’ Mahon says it all in his brilliant poem  ‘Spring in Belfast’ and its last stanza in particular.

 

“Walking among my own this windy morning

In a tide of sunlight between shower and shower,

I resume my old conspiracy with the wet

Stone and the unwieldy images of the squinting heart.

Once more, as before, I remember not to forget.

 

There is a perverse pride in being on the side

Of the fallen angels and refusing to get up.

We could all be saved by keeping an eye on the hill

At the top of every street, for there it is,

Eternally, if irrelevantly, visible —

 

But yield instead to the humorous formulae,

The spurious mystery in the knowing nod;

Or we keep sullen silence in light and shade,

Rehearsing our astute salvations under

The cold gaze of a sanctimonious God.

 

One part of my mind must learn to know its place.

The things that happen in the kitchen houses

And echoing back streets of this desperate city

Should engage more than my casual interest,

Exact more interest than my casual pity.”

 

Donald Macaskill

To find out more about the Homecare Festival from Wed 7^th to Friday 9^th  see https://scottishcare.org/cah-conference-2020-2/

Today the 1^st October marks the 30th Anniversary of the International Day of Older Persons. It is a United Nations event which focusses on continued age discrimination across the world and which this year, also the “Year of the Nurse and Midwife”, seeks to highlight the role of the health care workforce in contributing to the health of older persons. In doing so it seeks to give special recognition to the nursing profession and to give a primary focus to the role of women in health and care.

When these themes were decided some time ago no one could have imagined that we would have faced the traumatic year that we have had and are still experiencing. It has been a year which has underlined the need to focus on older people not least because of the appalling truth that the majority of the million people who have died as a result of the Coronavirus pandemic have been aged over 75.  At different points over the last few months we have had occasion to reflect on the existence of unequal treatment of those who are old in the way in which society has responded to the pandemic. At the start we had casual careless talk describing Covid19 as a ‘baby-boomer harvest’, then we had questionable ethical frameworks which envisaged age to be the main criteria to use in any decision to withhold treatment should resources become restricted, and most recently we have heard of suggestions that we should ‘lockdown the old’ in order to let the rest of society get on with life.

Our attitudes to older age, whether positive or negative, are, I believe deeply influenced and shaped by our experience of older age in our early years and upbringing. It is those experiences which will to a greater or lesser extent embed within us a belief that older age is something that continues to have value and offers contribution, or alternatively that we associate older age with deterioration, incapacity and a lack of creativity.

I have mentioned before in this blog my Aunt Effie from Skye. When I think of age, and older age, I think of her. She was a character who stood physically tall and strong, intellectually robust and rooted, at one and the same time melancholic and reflective, fun and frivolous. I marvelled at her daily consumption into her nineties of the written word from novel to textbook, from newspaper to magazine. I was left enthralled by her forensic ability to trace her family tree back three hundred years, a feat achieved in the pre-internet age through telephone and letter – and all at the age of 95. So, for me age has always been a chronological clock that granted the individual free expression, space and time, that blossomed creativity and insight. That is not to deny my own personal awareness and family truth of those who have been limited and imprisoned by dementia and decline, whose lives have been shortened by the lostness of disease and whose living has spoken of sadness and confusion. But overwhelmingly older age is for me a positive characteristic.

So it is that I have always been very fond of the brilliant iconoclastic poem ‘Warning’ by Jenny Joseph which at one stage was the most popular poem in the UK. You might know it: –

“When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.”

There is a delicious irony in that when she grew older Jenny Joseph was asked if she would start wearing purple anytime soon, to which she replied, “I can’t stand purple. It doesn’t suit me.”

Today as we reflect on what active and healthy ageing is all about – even in the midst of a pandemic which threatens older age – I think it is time for us all to start to wear purple. It is time to turn upside down the conventional assumptions about age and challenge the prejudice which devalues older age and puts youth on a pedestal. It is time to shout down and decry the subconscious discriminatory presumption that the old are incapable of individual choice and decision, of creative contribution and radical change.

On too many occasions during our pandemic response we have treated those who are old with an obscene paternalism and syrupy protectionism which ignores their intelligence and capacity, their autonomy and energy. We have talked about corralling residents in care homes into units to protect them; we have failed to ask and give voice to those whose lives we have restricted and whose capacity for consent we have removed; we have done to rather than working with. Even today we see this paternalism in the desire of some politicians and commentators to rush to become the jailers of the elderly on the pretence that we must protect those most at risk.

The old are not passive passengers in life but they are the living witnesses of years of hard knocks and experience. Age enables in many the ability to nurture the humility that comes from error and failure and from that ground to grow an honesty and sensitivity to others. We ignore that insight at our peril as we repeat the mistakes of the past in every passing moment.

Stepping into the future with our older citizens, wherever they live in our communities, whether alone or with others, is about making a commitment that no one will be left behind, no voice will be unheard because it has lost its strength, no contribution will be dismissed because it is articulated by age.

To be valued, to find a place, to be able to give, to contribute, to participate are fundamental to our health and well-being. Healthy ageing is not about keeping simply the body and the frame of skeleton alive, it is about enabling the passion and power of age to express itself in the whole of our lives and communities. So, as we all grow older in Scotland, I hope we can also tap the potential of every individual in order to maximise the health benefits which come from feeling you can still make a difference.

So, in your place of home, in your place of work, in your place of relaxation, think today about how you can include all the generations, and value especially the gifts, abilities, capacities of those who are older. Think not just about how we protect and keep safe but about how we listen to, learn from, allow to grow and critically allow older age to disrupt and contradict.

Let us all therefore work together to step into a future where every older person can find their place to give, share and be. Let us all  wear a red hat that doesn’t suit and learn to kick over the traces of conformity! It is time for all of us to start to practise for the days of purple.

Donald Macaskill

 

 

On Monday it will be 200 days since March 12^th/13^th when the majority of Scotland’s care homes shut down in order to protect residents from the emerging threat of coronavirus. It is a point in time which comes as the seasons change from a late summer into the shortened days of autumn beckoning in the coldness of winter. Spring and summer have been and gone and the world as we knew it at the start of the year is unrecognisable. These have been days of real pain and emptiness for thousands, and of waiting and yearning for countless more.

I feel it is an anniversary of time which needs to be marked and which should cause us to pause and reflect on how we should be planning and preparing, both practically and psychologically, for the seasons and days to come.

Since the first days of spring when Coronavirus started to reap its harvest, we have lost countless thousands across the country to this virus. We have learnt many lessons taught us in a school of pain and cruelty, sadly some have come too late for the knowing and others have been appreciated too slowly. The daily statistics have become like an inexorable tick of a clock with numbers increasing every day, yet their regular recounting hiding the true story of thousands whose lives have been changed for ever.

As we remember 200 days, we know that there are too many who have lost their lives before their time, too early for parting, too soon for absence. We know that there are thousands who have not been able to be present, to sit alongside loved ones to say goodbye, to hold a hand and caress a face, to wipe a tear and simply to be silent before endings. We know that there are thousands who have not been able to celebrate lives well lived, to spark memories with others and laugh and cry together in funeral and farewell. This has been the unbearable cost of these days.

During those 200 days there have also been those struck down by the virus who have recovered, both in care home and community, but who are marked by the legacy of the disease in a way that has forever altered their living. What has become known as ‘long Covid’ is a set of conditions and a legacy of illness, that we are only now beginning to appreciate, and which will result in extensive need for rehabilitation and recovery for countless years.

So, there has been no shortage of emptiness drained from life and community in the last 200 days. The emptiness of grieving, of lostness and aloneness. There has been the emptiness felt by those who have struggled with the full reality of lockdown, whose mental health and self-esteem have been shattered and diminished; whose hopes and aspirations for their lives have been set aside; whose businesses and careers have been wrecked or abandoned. This has been six-months of real desolation for too many – and yet for so many it has been pain endured in silence, in absence, in hiddenness and on the edge of noticing.

These have also been days of waiting. Waiting to return to normal only to learn the language of a new normal; waiting for life to re-start and living to re-open only to discover a reality unfamiliar and unrecognisable; waiting for exam results and university to start only to experience the pain of anxiety and a strange new beginning; waiting for furlough to end only to be told of redundancy and loss of role; waiting to be re-connected, for shielding to end and encounter to start; waiting for a tomorrow which feels more like our past.

200 days which have changed us all. 200 days which have brought out the best of humanity, have shone a light on the exhaustion of love and giving, but have also witnessed the predictability of ambition, selfishness and frustration.

So, what of the future. As we sense a slipping back into the inevitability of more restrictions, the fear of a return to a pain which is now one that we know all too well, a diminishing of the loss of hope – what now?

I have held many conversations over the last 200 days and in the midst of sadness and emptiness, the characteristics and emotions that have struck me the most, whether on the part of carer, manager, family member, supported person or care home resident, has been a sense of determination and hope, of energy and commitment of care to the other given to the point of exhaustion, of a deep yearning to survive and do better in the midst of the waiting and the absence.

So, the next 200 days can and must be better even though they may be harder – for if we do not believe that, then the sacrifices and loss of the former would be too much to bear.

We need to plan and prepare to a degree and extent which we have never before attempted. Of course, I am not naïve. I do not imagine that even with the best precaution and best planning that we can prevent yet more pain and yet more damage from this virus. But whether it be by getting a testing system that really works rather than promises and fails to deliver, whether it be through robust practice in terms of infection control in our communities and care homes, whether it be through supporting those on the edge of despair and hopelessness in our communities, whether it be through simple acts of neighbourly kindness,  then we can build on what we have done to prepare better for tomorrow.

And some of my personal hope would be:

That we recognise that we have to create opportunities for family members to better re-connect with their loved ones in care homes. We know the desolation and emptiness; we have heard the cries of lostness and have seen the signs of deterioration and decline caused by enforced absence and the loss of touch and contact. Whether it be through extending the time for visits, better resourcing care homes to have additional staff and volunteers to support visiting, by the use of testing to protect visitor and resident, we are all of us determined to learn and improve. We all of us need to make the next 200 days better and more connected.

That we really accept that we need to start to prioritise what happens in our communities as much as in our care homes. There is a growing awareness of all those who have lost their lives in our communities both to Covid and more significantly to other conditions in the last 200 days. We need to make sure we do not remove the homecare and supports which are the lifeline of so many as we face challenge of resource and workforce into the winter. We need to recognise that we have depended on family carers who are now exhausted and drained and cannot face the future without respite and recovery.

That we recognise that just as it was in March, so it is in October, that the first line of defence against this virus is the individual action and responsibility of every citizen. We need to rediscover a collective solidarity which strengthens us to sacrifice our freedom and intention in the service of and for the protection of others who need our loving and caring to be seen in our actions.

That we develop a testing system to protect all whether young person or old, whether care home resident or worker, whether schoolteacher or student, homecare worker or NHS staff member. The imperative of using testing as a protection has never been louder but so too is the importance of recognising that it is not a panacea merely a critical tool in the battle we are engaged in.

That all who can will take up the opportunity to be vaccinated for the flu recognising the real risks of overwhelming care and health systems in the weeks ahead.

That we recognise that there are thousands of staff in care home, community and hospital who are not simply weary but drained and exhausted, and that we do not just speak of support but show it in actions both large and small to alleviate, recognise and reward.

That we do not lose hope and that we continue to feed and foster our yearning for a better tomorrow, a brighter spring and a healed summer.

For even in the last 200 days life has won through against all the death and destruction. At 103 John fought off this pernicious disease and now sits laughing and story-telling with his fellow care home residents. At 38 Jane was able to come through weeks of intensive care and rehabilitation and is now able to hold her child and laugh at the small things of unimportance. At 17 and in a strange university experience there are students falling in and out of love with equal measure in the predictable rhythm of life; that in ceremonies across the country there are lovers committing to a future of togetherness; that in creative ingenuity ideas are being born out of hard work and reflection; that there are artists painting a future of purpose and poets ploughing the depths of emotion; that there is even in the midst of autumn a renewal which overcomes the decay and despair.

The next 200 days will undoubtedly be hard and there will be times of barren emptiness and pain but one lesson the last 200 has taught me is that we cannot make the journey onwards alone, but must all walk through into our future together, without casting casual blame, scoring points, asserting ego but upholding one another and speaking love into emptiness.

We pull ourselves forward together through our yearning. In the words of Seamus Heaney in ‘The Cure at Troy.’

“No poem or play or song
Can fully right a wrong
Inflicted and endured.…

History says, don’t hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

…

Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.”

 

Donald Macaskill