Next Friday in regimented moments of silence the nation will come together to remember all those who in a growing number of conflicts paid the ultimate sacrifice of their lives for the love of other. For the diminishing few who were alive during the Second World War this year’s reflections will have an added poignancy not least because a mainstay of connection will be absent following the death of Elizabeth the Queen. But perhaps an even more acute resonance is because we are remembering at a time when Europe is once again witnessing the barbarity of war and the evil which is humanity’s hatred of others. How little we remember.

Anyone who has been following the images from Ukraine will know well the horrors that tens of thousands have and are still enduring. You will call to witness the thousands of men, women and children who have had to flee to find rest and rescue in other nations of Europe including Scotland. It is beyond comprehension that in the 21st century we are watching on our television screens scenes of destruction and bombing resonant with those of the 1940s. How little we remember.

I suspect like many of my age who have not known war directly I have often asked of others the question as to why with such distance of time we still remember in formal gatherings. I’ve answered that query in part because of a personal need to pay tribute to those in my own family who fought and in some cases died in war, even if known only to me by name and story. But the older I get the more convinced I become of the importance of remembrance both as a collective act of solidarity and of commitment but also as something which needs to with ever greater energy become part of the rhythm of our togetherness. The act of remembering is an act of loving.

So what is it on Friday and every day that as individuals and as a community we should seek to remember and to piece together from the fragments of our feelings inside our hearts and minds?

That’s always going to be an individual response but for me at this time and in this place where priorities seem so skewed and when fear is so prevalent amongst the old and ill, those in my world who work in and receive social care supports – remembering has to be about active loving.

Remember as we silently stand the lives of those shut in by fear of not being able to pay their bills and who risk coldness and worsening health.

Remember all those working in homecare and care home, who try every day to soothe the hard memories of confusion and distress for those whose worlds dementia has shrunk.

Remember all who are sitting looking at an empty chair because love and togetherness has died and a routine of echoing sadness fills their home and days.

Remember those going without food today because they have chosen to feed their child or clothe their neighbour.

Remember those across our nation who have called our streets their place and our homes their hearth but whose love and loves are in a Ukrainian or foreign shore.

Remember those who feel no one knows their pain, hears their story or cares about their living.

Remembering is empty and is an action of avoidance unless it is accompanied by a focus to make memory real and to change the reality of pain. So as we remember let us focus with a renewed vigour on creating a tomorrow worthy of remembering.

Joy Haribo was appointed the United States poet laureate in June 2019, and is the first Native American poet laureate in the history of the position. She is a member of the Mvskoke/Creek Nation and belongs to Oce Vpofv. Drawing on both her upbringing and cultural knowledge and studies Harjo’s life and poetry is grounded in the natural world and by a strong emphasis on the spiritual. She uses native chants and prayers in her poetry which evidences both a desire to memorialise and as a call to action for the creation of an environmental and human justice. One of my favourite Harjo poems is ‘Remember’ which calls us to recognise and rejuvenate with the connectedness of our belonging to the natural and relational world around us. Remembering has to be an act of loving.

Remember

Remember the sky that you were born under,

know each of the star’s stories.

Remember the moon, know who she is.

Remember the sun’s birth at dawn, that is the

strongest point of time. Remember sundown

and the giving away to night.

Remember your birth, how your mother struggled

to give you form and breath. You are evidence of

her life, and her mother’s, and hers.

Remember your father. He is your life, also.

Remember the earth whose skin you are:

red earth, black earth, yellow earth, white earth

brown earth, we are earth.

Remember the plants, trees, animal life who all have their

tribes, their families, their histories, too. Talk to them,

listen to them. They are alive poems.

Remember the wind. Remember her voice. She knows the

origin of this universe.

Remember you are all people and all people

are you.

Remember you are this universe and this

universe is you.

Remember all is in motion, is growing, is you.

Remember language comes from this.

Remember the dance language is, that life is.

Remember.

Remember by Joy Harjo – Poems | Academy of American Poets

Donald Macaskill

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

These are the words of a carer this past week. She is an unpaid carer for her husband who is living with a progressive and degenerative disease which sadly is terminal. She has been his wife, carer, confidant, and lover for a long time. She is well used to the highs and lows of his condition and his mood swings. She manages and relates with a degree of positivity and optimism that friends and family around think to be astonishing and remarkable. But things have been getting progressively harder and harder over the last few weeks and months. There are so many things which have been the straw to break her back of positivity – the withdrawal of Covid protective measures which now make her feel she is imprisoned in her own home because going out makes her feel she risks returning with the disease and killing her husband. Added to that is her anxiety over how she is going to be able to pay energy bills even after the promised assistance because being at home all the time in a Scottish winter costs a lot. Then there are the rising food costs, crazy prices 60-70 % more than a few weeks ago. But most of all she is just tired and weary. Family are great and friends supportive but especially in the long dark nights the relentlessness  of compassion costs her so much and it aches into her bones. But all the time she knows that the tick of an invisible clock brings her closer to the day when she will be alone and that perhaps more than anything else stresses her inside and out.

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

These words sum up quite a few of the conversations I’ve had in the last few days and weeks with professional paid staff both in homecare and in our care homes. On top of the struggles to pay the energy bills, or the petrol to get to work in the first place there are so many pressures and stresses which folks often don’t get. Caring is a job like no other – it costs you and those around you because you are continually giving and sharing. Care is not about the task of a hand or the function of something you do, but it is rather the sharing of a heart and the solidarity of being with another in good time and in ill. But the thought which has held heavy for so many I speak to is the fear of going into another winter. The last two have been so very hard but the unknown quantity of a resurgent Covid – because if you care you know the truth that Covid never left in the summer and is now getting worse – and the anxiety of a virulent flu – is freezing out hope and optimism. And yet perhaps the most acute anxiety and stress is that there are so many thousands who receive care support who are already struggling. Jane told me of making five visits to older people supported in their own home that morning and four of them had turned their heating off because they fear the bills. She is really worried that one day she will find someone has died from the cold. Caring is becoming harder by the day.

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

John runs the care home founded by his father and mother. He loved playing there as a child and getting to know so many older residents. They were and are his family. He went away and did many other things, but the pull of care took him home to this special place. After training and qualifications, he ended up becoming the manager. He has been in the trenches of despair and loss with residents and families over the last two years but when I spoke to him a few days ago it was the first time he was on the edge of tears. He simply cannot see any way that he can continue to hold onto the staff he has, to continue to deliver the quality care he wants, and at the same time pay the energy bulls which are (even after support) thousands of pounds more; agency staffing costs which for one night are the equivalent of paying for a nurse for a fortnight; and rising costs for food and other supplies. And unlike any other business he cannot turn the lights off, close the door for a day or charge more, not least as his main client, the local authority, pays the same amount as before. John is in tears because he feels he has no option than to close the home which has been so much part of his life – but he feels he needs to do so to make sure he keeps his residents safe this winter

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

All these scenarios are illustrative of the very real stress those living with and in the world of social care are experiencing at this time. I was reflecting on so many more similar stories of stress being now experienced when I discovered that this coming Wednesday is the annual National Stress Awareness Day.

There are millions up and down the country who are feeling real stress and anxiety currently. The economic and political events of the last few weeks and months have added a real burden on to people and their communities. Such stress is deeply affecting the wellbeing of individuals and our society as a whole. Indeed, the Mental Health Foundation has stated that at some point in the last year, 74% of us have felt so stressed that we have felt unable to cope.

The experts tell us that stress is the feeling of being under too much mental or emotional pressure. ‘Stress is your body’s reaction to help you deal with pressure or threats. This is sometimes called a “fight or flight” response. Your stress hormone levels usually return to normal once the pressure or threat has passed. But in the world of social care we seem to lurch from one stress trigger to another with little or no respite. ‘When stress is overwhelming it can cause other mental health problems, emotional exhaustion and physical illness and can impact on work, relationships, families, and every aspect of life. When someone is suffering from negative or overwhelming stress, they may not act or react normally in some situations, for example driving or in an argument, with disastrous consequences.’

I cannot but conclude at this time that the women and men who care, both paid and unpaid, and the managers, nurses and supervisors in care homes and homecare services are under the most immense and intense stress that I or they can remember. What such stress needs is practical and concerted political and societal action to both recognise the reality of the stress, identify solutions to it, and to address these with an urgency and immediacy.

As we turn back the clocks and enter the darker days and nights of the year, we have to offer a light of hope and positivity to folks who are in such dire anxiety and distress. Platitudinal actions and referring people to self-help wellbeing mechanisms will not suffice – it is time for society to get serious and to actively relieve the stress on those who care because they are beyond the point of resilience, they are now breaking.

Donald Macaskill

Yesterday evening along with over 500 guests I attended the Welsh Care Awards in the City Hall, Cardiff. I was in Cardiff because that was where the Five Nations Care Forum had been meeting for a day. This is a Forum which brings together care representatives’ bodies from the United Kingdom and Ireland twice a year to share issues of mutual concern and priority. Clearly the cost-of-living crisis, the energy and fuel crisis, and the huge workforce shortage were issues which all the five nations shared. Because I was in Cardiff I was invited to present an Award at the Welsh Care Home Awards. It was a real honour to do so.

The evening was amazing not least because it was the first time that the Awards had been held since the trauma faced by the care sector in Wales during the pandemic. It was so good to hear such amazing stories of professionalism, integrity and sacrifice; to hear first-hand from the First Minister of Wales, Mark Drakeford, of the value and priority placed upon social care by the Welsh Government, and to be part of such an emotional evening graced not least by amazing musical contributions from Sir Bryn Terfel and Wynne Davies, the event’s compere.

Throughout the evening as I sat there listening to stories of great professionalism, about nurses and carers, about domestic and catering staff, about managers and supervisors, one word kept being used time and time again. That word ‘value’ – that these were people who we needed to value as an intrinsic part of society in Wales and that they deserved all the value that was being shown to them during the event and by the Welsh Government and wider Welsh society.

The dictionary describes ‘value’ as the regard that something is held to deserve, its importance and worth. It also states that value has a sense of moral or ethical character. Indeed, the root of the word in Old French has connotations of strength and worthiness.

I reflected on whether we really value social care and the workforce that represents that world? Or is our sense of societal value transitory and illusory. I reflected on whether one of the reasons so many feel a sense of lack of value is that in general terms if society is being honest, it does not value care in essence. Three brief thoughts.

I have heard from colleagues across the UK this week about the sense that social care services and supports, whether delivered in a care home or in a community setting through homecare and supported housing, is most certainly not valued. Otherwise, it is stated we would not be faced with the degree of ‘crisis’ that clearly is the current reality. People talked in their own part of the United Kingdom about social care being seen as the ‘Cinderella’ service, as the after-thought, the last to be considered when budgets are allocated and priorities are determined. There was also a sad consistency in that there was a feeling that social care continually was only seen of value in terms of what it could do for the NHS, to alleviate its pressures and strains, not least in terms of delayed discharge. Yet at the same time there is clearly a failure across the UK despite the policy reality and political rhetoric to both work as an integrated health and care system and to treat each part with the respect, professionalism and regard it is due. It is very much an acute NHS wagging the political dog which barks at social care – and then wonders why the system is not working or responding. As so many people in the world of social care know only too well – if we are every going to solve the crisis of a failing health system it is going to have to involve getting social care providers and organisations around the table – not continually treating them as a problem or issue to be sorted rather than as the solution and answer. The prioritisation of the NHS in the whole system shows little valuing of social care or those who work in that sector.

There is a second way in which this week I was reminded of value and that is the way in which a government or political leadership bestows priority and value upon one economic sector compared to another. It was a delight to hear from the Welsh Government Deputy Minister of the way in which social care in Wales, the role of providers and services, was seen as a core part of their foundation economy model. That is based on work of some age now which argued that social care rather than being seen as a drain and deficit, as a cost and charge, should rather be seen through the lens of contribution and capacity, as an enabler of community and a fosterer of citizenship. The very fact that services and supports exist do not just enable individuals to be personally supported but free family and others to remain economically active and contributive. The latter observation is so critical in a society and at a time which needs all those fit and able to work to be economically contributive and which has a population deficit. Social care is a driver for innovation and entrepreneurship. And yes, I have before lamented about the lack of priority in the Scottish Government’s fiscal strategies in relation to social care – in fact barely a mention and that which does exist sees the sector as a cost not as a driver for economic innovation and contribution. If we were truly to value social care, we would start to recognise the real economic benefit to be achieved by proper investment and prioritisation, not just for those directly impacted but by the wider community. This is perhaps especially the case when we think of community benefit – so many care homes for instance not only employ those who live in the local community, but they buy their food, source their support in terms of maintenance and repair, utilise community assets such as leisure and artists, and so much more. Care providers are a massive contributor to community wealth building, to community benefit and to community cohesion and maintenance. Yet this is so often ignored or overlooked.

Lastly, and perhaps the most visible issue last night was the extent to which society is paying but lip service to the contribution and role of social c are workers in our communities. Yes of course we clapped for carers (albeit begrudgingly) but can we honestly hand on heart say that as individuals and as a collective we consider the contribution of a care to be just as important and valid as that of a teacher, a train driver, a banker or a IT analyst? Because in truth the way we answer that question will evidence what we consider to be the essential requirements of a community built on valuing contribution. Some might say it is false to try to create a hierarchy or equivalence – and in an utopian ideal reality I would agree – but the fact that we pay what we pay, resource allocate what we allocate, fail to meet unmet need for tens of thousands who require care and support, are seeing care organisations going to the wall and collapsing every day – those facts speak to a valuing of social care which is wholly absent and negative. Part of the way you value anyone, or any sector is the extent to which you reward and remunerate those who work in that sector – I have said it before and repeat here that there is a perverse upside-downness of societal value and priority when social care, especially the care of adults and older people, comes into play.

Valuing in applause and sentiment, in word and rhetoric is easy, valuing in reality and reward, in recognition and regard is so much harder.

The American poet Christine Kysely perhaps sums it up well:

What is a person’s value?

What is their worth?

Can it be based solely

On what is found in their empty purse?

 

Can that one missing emptiness…

Take away a person’s pride?

Can it belittle,

The entire worth of their life?

 

Is there some value,

In the light in their eyes?

Is there some value

for the past loves of their life?

 

Is there some value

In the all the books that they’ve read?

The knowledge imparted

The words that they’ve said?

 

Do they get credit

For the beauty they’ve seen,

Painter of paintings,

Dreamer of dreams,

Taker of photographs

Creator of life,

Mother of children,

Lover of life.

 

Lover of wisdom, of knowledge, of men,

Friend to all people, both dark-skinned and light,

Lover of humans,

Meets all with delight.

Lover of all things,

Both known and unseen,

Champion of causes, of persons, ideals,

Believes in the future, values every meal.

 

Is there some value,

To someone who really loves life,

Whose laughter fills each and every day,

In spite of their ongoing strife?

 

To someone who looks to the heavens,

Always amazed,

Someone who has pondered the moon,

And watched it go through its phase.

 

To someone who has held the earth in their hands,

Who has felt the sun on their face,

Who is raising their own children,

Who puts on a brave face.

 

What is the value,

Of one who has financially hit a wall,

Who has often sat here and pondered,

And tried to make sense of it all.

 

What is my Value?

What is my Worth?

Will I be valued solely,

By what is contained in my purse?

 

(c) Copyright 2010 by Christine A Kysely,

 

Donald Macaskill

I’ve spent a lot of time in the past week listening, talking, and reflecting on issues of death, dying and bereavement. The primary reason for this is that the UK Commission on Bereavement launched its final report on Tuesday in Westminster and prior to this I chaired a session at the SNP conference on the topic whilst on Thursday a virtual event brought a huge number of people together to take part in Scotland’s Bereavement Summit and participate in great discussions and sharing.

Regular readers of this blog will know that I have over time written a lot about bereavement and have been very honoured to have served as a Scottish Commissioner on the UK Commission.

The report which was launched on Tuesday is one of the most comprehensive explorations of the nature of bereavement within modern British society not least in the light of the Covid pandemic. It is rooted in the lived experience of many people not least those who gave their time and inspirational insights as members of the Lived Experience Advisory Forum which worked alongside the commissioners. Some of those voices were present at the launch and their shared stories of loss moved and motivated the audience.

The Commission has made numerous recommendations rooted in a robust academic and sociological analysis of what its research had discovered. It strongly articulates the need for society to see bereavement support as a public health issue, avoids pathologising grief but yet articulates the pain and distress experienced by those whom we are failing as a society. I would encourage you to spend some time reading its findings. It is entitled ‘Bereavement is everyone’s business’ which very much sums up its focus. For today I want to reflect on one of its arguments which is of particular personal importance.

The Commission report is the first one of such depth and robustness, both academically and in terms of lived experience, to declare that the right to access adequate and appropriate bereavement support should be recognised as a human right. Again, I have reflected elsewhere why this could become the case legally not least as Scotland seeks to incorporate a right to health within a developing new human rights act. There is I believe a very real opportunity for Scotland to take a pioneering lead here both legislatively and in terms of empowering people’s ability to access bereavement support. I hope it won’t be missed.

But I want to respond to some comment as to what difference such a human right might make in practice.

Human rights are first and foremost about human relationship – our modern articulation of them is not least because of the traumas of the past when difference and distinction became the vehicle for hatred and holocaust. Human rights are there for the best and worst moments of our relating to one another – they are for the ordinary and extraordinary realities of living and loving. There is nothing which is more fused with the relational than the moments of our dying and the experiences of loss and emptiness, of connection and togetherness, of isolation and rejection, of tear and laughter, that encompasses the grief journey of so many. Yet the Commission’s report indicates that for 40% of those who sought support in their grieving that that support was not there for them; it notes that nearly 50% of children and young people did not find adequate support in their place of education, whether school, college or university; it further evidences that a quarter of those who sought support from family did not find solace. So, whether through formal or informal mechanisms we are clearly coming up short in offering and receiving the bereavement support we need to grieve in a manner which attends to our humanity. That may have a lot to do with societal stigma and a contemporary cultural divorce from death and dying, but it clearly is something we must address. A human right to bereavement support based on the right to be healthy and with a holistic concept of wellbeing, would help to root priority in declaring that our bereavement health is as intrinsic to our humanity as any other aspect of health and citizenship.

Such an elevation of priority and value would assist in the ongoing and at times shocking stigmatisation of death and bereavement. The report has shone a light on a shaming reality that so many on the grounds of poverty or knowledge, of race or ethnicity, or age and disability, find it much harder to access the bereavement support they need. The compounding of heartache because of cultural taboos which silence support and comment simply must be challenged. A human right to bereavement support would help to elevate the needs of all to ensure equality of access, fairness in provision and non-discrimination in delivery. We cannot continue to tolerate provision which treats some less favourably and which for many results in not moments or months of psychological hurt but in years of aching dislocation.

It is also important that people recognise that regardless of their circumstance or fortune that when they need support to deal with the loss of someone important to them that such support is there as of a right and most importantly that they can claim that right. The realisation of a human right to bereavement support will take time to reach fulfilment and included in that journey will be increased awareness of what is available, improved access which is appropriate, and an urgently needed societal discourse and debate on the nature of death, dying and bereavement. The silence of death and grief avoidance we so often witness in contemporary culture ill serves those who when faced with death especially sudden and tragic loss have no language with which to speak its pain, no resource and knowledge to understand what is happening, and no-one to turn to as they walk their journey.

Lastly and no less important is that articulating bereavement support as a human right necessitates the requirement to monitor and evaluate progress on the part of public and governmental bodies. Human rights do not exist in a vacuum – there are mechanisms (albeit sometimes inadequate) to ensure that State actors and governments are held to account for policies and behaviours which either act against the fulfilment of a right or progressively help to realise that human right. The recommendations within the UK Commission report are the baseline for the creation of a community and society which roots the human right to bereavement support as a marker of our citizenship. Of necessity this also includes the requirement to identify adequate resource, budget allocation and fiscal priority to ensure that the human right to bereavement support is achieved. This amongst many other reasons is why the UK Commission is calling for at least 0.79 pence to be spent per annum on each bereaved person. Rights are only achievable if appropriate resource is allocated not in the absence of fiscal and budgetary allocation. If we are to change both the nature of and access to bereavement support, to professionalise the response of all including employers and the workforce across so many sectors, then the bereavement support sector can no longer be holding out an annual begging bowl to receive the scraps of budget allocation like some Dickensian orphan but must be seen as a priority sector.

Human rights point to a better future and give agency and purpose to the journey to realise our individual and collective responsibility. This is not just for paid up politicians and policy makers – as the title of the report states – it’s everyone’s business.

The excellent Commission report is a starting point – but change only happens when words come off the page, statutes come down from the shelf, people stand in solidarity and say enough is enough – it is time to change and time to act. The thousands who are bereaved each year and especially those who are struggling with their grief deserve a society which listens to them, hears their pain, responds to their needs and offers adequacy of compassion, care and support. In no little way that is why bereavement support should be seen as an inalienable human right, as important to us as the right to physical or psychological health and wellbeing. The work for such change starts now.

Donald Macaskill

I have written before on many occasions about mental health and older people, about the struggles of those who I have known to navigate the no-man’s land between support as an adult and the gaps in provision they meet when they suddenly become ‘old’; about how an understandable emphasis upon child and adolescent support can sometimes make those older adults with life enduring mental health conditions feel that their lack of priority is because of age, contribution and value.

There are many challenges facing older people and in a time of societal uncertainty, cost of living anxiety and a general economic downturn- it is especially hard for those who have mental health challenges to keep going and to navigate a world of uncertainty and confusion.

Monday 10^th October is World Mental Health Day, set by the World Federation for Mental Health, and it will as it always does provide people with an opportunity to focus on just how significant mental health is for us all. In the shadows of a global pandemic, it can sometimes feel that an emphasis on physiological health has overtaken the importance of holding in balance our focus on both the psychological, emotional and the physical. That’s certainly what John was reflecting to me recently in some of the communication I have been having with him.

John is in his 80s and he has been a user of mental health services for certainly most of his adult life. Recently he has been experiencing some very dark times and it has been hard for those who love him and who attempt to support him to get him on what he would himself describe as ‘an even keel’ rather than drowning in the torrents of his moods and moments. John said to me that the last few months have been very worrying indeed; what with Ukraine, talk of nuclear weapons, the worry about not having money, the fear of the cold, the fact that so many new faces are coming to support him because staff are leaving his homecare organisation – all of it is creating a whirring headache for John and in his words, ‘’It’s stripping hope off my bones.” But what he worries about and says so much is that he believes he needs to stop talking about how he is feeling; that he needs to pretend to be better and healthier than he is.

Sitting as I do on so many talking groups and committees where mental health comes up ever more frequently, I try to hold on to the stories and exchanges I have with people like John. Because it is easy to become desensitised to the very real fear, the cold fear, which some feel with their mental ill health. It is easy to forget that rather than becoming better or more settled, or attuned to managing episodes of mental ill health, that so many as they get older feel drained and simply exhausted and feel they cannot imagine growing older with such feelings and experiences dominating their living and loving. It is easy to forget that the stigma of mental health is still out there for so many folks maybe especially perhaps for an older generation. It is easy to forget that there are too many people who sit in silent pain and in rooms of lonely, abandoned hope because of a conviction that no one wants to hear their story, feel their pain or understand their distress.

So those of us who are able to listen and hear what is said, and see what is shown, and take on board what is felt, on this and every day we need to make sure that in all the noise of our communities that people like John can still feel their words are worthy of being uttered and that a plea for help will not be ignored. If we do that individually and collectively then perhaps, we will make progress as a community of the fragile.

The Scottish poet and biographer J.B.Pick puts this all beautifully in ‘Old Age Blues.’

‘I don’t know what I used to know.

I don’t say that it isn’t so,

I’ve just forgotten. That’s a blow.

When you know nothing, then you go.

 

The world keeps changing, things must grow;

You spend life learning, but it’s slow;

Perhaps my status isn’t quo.

I don’t know what I used to know.

 

Well, I must watch, not let it show,

Greet the morning, say ‘hello’;

When you know nothing, then you go.

I don’t know what I used to know.’

 

From : https://www.scottishpoetrylibrary.org.uk/poem/old-age-blues/

Donald Macaskill

 

 

 

This past week I have had the privilege of spending time with some of the most creative global thinkers and leaders in the space of aged care and older people’s rights by attending both European and Global Ageing meetings in Vienna. It has been invigorating to spend time sharing issues of mutual interest and concern, and recognising the solidarity of shared action, resolve and priority.  One of the best contributions in the events was from my colleague Katie Smith Sloan who is the Director of the Global Ageing Network as well as being the CEO of Leading Age, the foremost older people’s care and support membership body in the United States. Katie delivered a tremendous keynote speech with much insight, but one observation which struck home to me was when she noted that one of the reasons that we are witnessing such an increase in age discrimination across the world is that on the whole people, whether policy makers, politicians, or ordinary citizen, we are uncomfortable with recognising the reality that the world’s population is ageing.

That fear of ageing and the associated reluctance to recognise the reality of discrimination against older people, lies at the heart of the International Day of Older Persons which we celebrate and recognise today, the 1^{st of} October. This year the United Nations is marking the day by encouraging us to recognise the amazingly resilient contribution of older women.

They state in recognition of the way in which Covid 19 has exacerbated older person discrimination that:

“While older women continue to meaningfully contribute to their political, civil, economic, social and cultural lives; their contributions and experiences remain largely invisible and disregarded, limited by gendered disadvantages accumulated throughout the life course. The intersection between discrimination based on age and gender compounds new and existing inequalities, including negative stereotypes that combine ageism and sexism…

Recognizing the vital contributions of older women and promoting the inclusion of their voices, perspectives and needs are critical to creating meaningful policies to enhance a holistic response to local, national, and global challenges and catastrophes, UNIDOP 2022 is a call to action and opportunity aimed to embrace the voices of older women and showcase their resilience and contributions in society, while promoting policy dialogues to enhance the protection of older persons human rights and recognize their contributions to sustainable development.”

That call and encouragement should have a particular resonance for the care sector not only because the majority of people who receive social care supports are older women but because the majority of those who deliver that care and support, whether paid or unpaid, are themselves women and many of them living with the challenges of older age.

As the United Nations states the population of the world is ageing and doing so at a faster and increasing rate.

“Over the next three decades, the number of older persons worldwide is projected to more than double, reaching more than 1.5 billion persons in 2050. All regions will see an increase in the size of the older population between 2019 and 2050… the fastest increase is projected to take place in the least developed countries, where the number of persons aged 65 or over could rise from 37 million in 2019 to 120 million in 2050 (225%).”

In Scotland our population is also ageing.

“Those aged 65 and older grow from being 20 per cent of the population in 2022 to 32 per cent of the population in 2072. 9. These changes mean Scotland’s population is projected to be 7.6 years older on average in 2072 than in 2022, in comparison the UK population is set to be 6.1 years older over the same time period.” Trends-in-Scotlands-population-and-effects-on-the-economy-and-income-tax-August-2022.pdf (fiscalcommission.scot)

So, is it true that we are frightened of growing old both as individuals and as a society? Is that why we fear to be honest with the truth because we have swallowed the quest of seeking the illusive fountain of youthfulness? Indeed, most societies have in literature and art, in design and fashion portrayed the allure of youthfulness, equating beauty and creativity, vibrancy and life with youthfulness. It is maybe not surprising therefore that when older age is reflected upon it is with a language highlighting decline and deficit, diminishment, and decay. It is about what can no longer be done, the limitations of body and mind, the past is viewed with a yearnsomness and desire which is lost forever.

I do not think we will ever address all the systemic and political lack of priority, value and status around social care which I often reflect upon, without alongside it challenging the pervasive ageism that afflicts our societies, not just in Scotland but in so many countries.  We will never meet the challenge of support, care and health care without spinning on its axis our age presumption and bigotry. This will not simply be achieved by the occasional fashion magazine employing older age models, or advertising being more reflective of its consumers, or ageist language being more frequently challenged in daily discourse – all of which are important – ageism requires a societal shifting of the sands. We need in the present moment to witness the same degree of popular and civic campaigning which in the 1960s and 70s led to us addressing gender and sex-based discrimination. We need to reach a stage where ageist behaviours, assumptions and stereotypes are as unacceptable as those against an individual’s race or ethnicity or any individual characteristic. But we also need to become more comfortable with age, revolutionise our thinking with a dose of positivity and a celebration of the benefits of older age as well as some of the limitations. We have a long way to go before we can truly say we are an age positive society, one that not only gets up and offers a seat to those who are old but lets that population take control of the destination. It will perhaps come when people stop asking what can be achieved in older age and reflect rather on the creativity of a poet writing her best work, an artist painting in a new style, a mother reconciled to a daughter, a father holding a hard conversation for the first time in his life, someone being able to be honest with themselves about their identity – all actions and experiences I have witnessed in the lives of those in their nineties. Positive change can happen until the last breaths of life.

The late Scottish poet Elma Mitchell with her usual directness describes the ageing of a woman’s body but tantalisingly wonders does older age lie to youth or is youthfulness the delusion of deceit? A revolution of ageist presumption is required by the whole of society so that we learn to see beyond the chronology of years to recognise the value of individuality without condition and without the label of age to limit insight.

Good Old Days

My neck, where love ran

Just under the skin

Is now an old rickety ladder to the brain.

My breasts, a full delight

For child and man,

The setting

To carry rival jewels,

Dangle now untidy,

Unharvested, over-ripe.

The wishbone of my legs

Has changed their wishes’ destination,

Shin repeats to shin,

Welcome, death, you may come in.

I should be cheerless

As a crow in winter fields

When the light is going

But up here, at the top of the spine, behind the eyes,

Curtained a little, but not blind,

Sits a young and laughing mind

Wondering which part of me is telling lies.

Elma Mitchell

from The Human Cage (Peterloo Poets, 1979)

Good Old Days by Elma Mitchell – Scottish Poetry Library

The following blog was the substance of an address given to the Highland Senior Citizens Network in Inverness on the 14^th September.

I am just going to say a few words and will be using the title of your event Keeping it Real as the basis of some thoughts about what I think are the challenges but also the opportunities for aged care today and tomorrow.

People who know me well know that I am somewhat obsessed with dictionaries and the meaning of words or phrases – and so I looked up what ‘Keeping it real’ meant.

The phrase is described as being authentic, true to yourself. But what does it mean to be authentic and true to yourself?  Those were some of the thoughts I had a few weeks ago on a visit to Skye. As some of you might know my family roots are there and I was back staying with family when I discovered that the Highland Council Archive Centre in Portree – was in the final days of an exhibition which centred on the sometimes-violent disputes between crofters and their landlords in the late 19^th Century. It was a great wee exhibition which not only contained the local Court Register all the way back to the 1830s but also the relevant copy of the Napier Commission report which eventually brought about a settlement to what had been the Clearances. I had not physically seen either before – and so -partly checking to see how many distant relatives had fallen foul of the law (and there were a few) I rifled through both documents.

I discovered that a direct descendant gave one of the most moving testimonies to the Napier Commission. In it he described the injustice and maltreatment at the hands of those who sought control over him and his land. He spoke for the local people and was later described as an ‘agitator.’ As I read his moving testimony, I could almost hear the cadence and rhythm of his Gaelic voice – especially when he said that ‘It would be better for Glendale (the place) that Hamara (his township) would be a lake of water than in its present condition.’

Being authentic for him (and indeed for so many who gave emotional evidence to Napier) was about being honest and true, not fake or false, not influenced by the pressure of factor or landlords, but to speak despite threat with courage and conviction. I can only admire that sense of keeping it real. It was a speaking of truth to power. It was about being true to the innate values that were those of his people and place.

And today I feel as we gather and spend time thinking about the challenges facing social care delivery in the Highlands – I think we have also to remain true, to keep being authentic to what it is which is the essence of social care, what it is which lies at the heart of what we are as a community.

No one can deny that there are enormous pressures facing us in terms of the delivery of social care in an area like the Highlands. To some extent it has always been thus. But the last few years and months have stretched the fabric of care to almost the point of breaking. Covid was hard, emotional, and traumatic, unsettling and fracturing of relationships and trust. The energy crisis and the cost-of-living crisis we are currently living though has been for so many smaller providers of social care the last straw, the thing that has broken them. I hope the measures outlined by Westminster will properly address the gaps between funding need and resource availability. But we are also faced with ongoing challenges of how we respond to the workforce pressures that we know only too well, not helped by Brexit and backward migration policies, for it is a real struggle to recruit and retain the gifted women and men who are the lifeblood of what we do in an economy where the draws of hospitality, tourism and retail are so strong.

Someone asked me recently do I not get depressed or downtrodden by the realities of what I see and hear – and yes it would be a lie to say it is not challenging – but people like me have to be positive – because current challenge can and will be the platform for a response which will take us to a future which might be different from the one we envisaged but which will be of equal worth as long as we keep it real.

To deny the realities of financial restriction, of workforce, and geographical pressures would be dangerously naïve. But to allow them to be the end statement, to be the full stop of our dialogue, would be to give in and give up, and I do not recognise that as a characteristic of Highland authenticity and response.

Four things mark social care authenticity for me:

Firstly, for me being authentic about social care – keeping it real – is making sure we do not throw the baby out with the bath water. At times of fiscal and operational challenge it could and would be so easy to stop being adventurous and trying the new – to be innovative and to invest in the ingenuity of change and difference. The role of technology for instance has so much to offer social care provision in the Highlands – so this is the time to invest and be creative in how we use technology to help someone remain independent for as long as possible in their own place and to maintain their independence. How do we use technology for instance to give more authority and autonomy to frontline care workers, so that we respect their professionalism and skills? We may need to change our regulatory and oversight systems to enable more risk taking, less paperwork and audit for the sake of audit, and to start trusting the women and men who work at the careface.

Secondly for me being authentic and keeping social care real – means that we have to encourage and embed new models of delivering care and support at local level, not just on environmental sustainability grounds but for community cohesion and collective support. Increasingly I think we will have to ensure that we give people the tools of compassion and skill to support one another. We may in the future need to rely less on formal approaches. We need to invest in our communities so that they can become even more effective at delivering care at local level. But critically that needs a population and a people because ultimately buildings or organisations count for nothing unless you have people.

Thirdly for me keeping social care real, must be about the wider political and fiscal system owning up to the reality that social care is a profound economic driver and contributor to our economy not least for our rural and remote economy, and it is embarrassing that we have politicians and financiers who didn’t even include social care in the Ten-Year economic strategy which was recently published. It is time to value the women and men who work in and who use supports and care.

And lastly and maybe most importantly, keeping it real means that at a time of economic and operational challenge we must never lose the essence of social care – which is NOT about just about providing services and supports, not doing to and for someone, but allowing that person to flourish and grow, thrive, and achieve their full potential. Social care is not about maintenance it is about creativity, it is not about speaking for but enabling someone to discover their voice, it is never predictable and safe but always risk-filled and unchartered. Because social care is an enabler of life not existence- so we must urgently discover its power to prevent, to keep people independent and to help them enjoy being part of their local community as full citizens.

In the making of our tomorrows, we must never forget the ground on which we have built our culture and communities. My antecedent John Campbell complained to the Napier Commission that the land left to them by the greedy and corrupt factors was too peaty and so not able to grow anything – all he wanted – all the crofters of Skye for whom he spoke wanted – was land which was able to provide not riches unknown, but a living fulfilled.

Keeping it real for social care is first and foremost not about creating new models and systems, new structures, and edifices, even if we call them a National Care Service – but about doing what matters to the disabled crofter in a Skye glen; the youth struggling with mental health issues in Dingwall; the care home resident in Inverness fighting her dementia or the person living in Wick who has struggles with getting up in the morning.

And if we keep it real for them then we will have done all that we should.

Donald Macaskill

 

 

 

This blog is the substance of a speech delivered to the Alzheimer Scotland conference a fortnight ago in Edinburgh and is published as part of World Alzheimer Awareness month and in recognition of world Alzheimer Day on September 21^st.

Right across Scotland this morning in a child’s bedroom, in a classroom or in a playground the phrase “It isnae fair” will be heard on the lips of a face of pure innocence – usually accompanied by “It wisnae me” – Fairness even when we are children seems to be a concept with which we are instinctively familiar. And you would have hoped that if we know what being fair is all about from as it were our mother’s knee that as we mature and grow in age and life that fairness would be at the heart of our interactions with one another, would be etched into our body politic like the writing inside a stick of rock. But it clearly is not otherwise I wouldn’t be standing here about to say what I am about to say.

There isn’t a lot fair about dementia. I remember when my mother was diagnosed it was one of the first things, we all said – that a woman who had spent her life for others, who had been there for her children and neighbour, pouring out love with her cups of tea turned into tar, that the epitome of goodness should be diagnosed with this most hellish of conditions – it certainly wisnae fair. But like countless in this room and undeniably mainly through the compassion of my sister my mother got on with it and we all walked the journey of the disease towards its destination. But even in that patterning there seemed to me and to us all an intrinsic unfairness to the way she was treated – not by us or others who loved her, but by the system of health and social care. A system which made her management of her condition all the harder.

I ran an equality and human rights consultancy for over a decade and a half – in that time I witnessed and come across the most blatant forms of racial, sexual, gender and disability discrimination, even hatred. But in truth and this shames me when I see and consider the way in which as a society in Scotland, we have treated people with dementia and their allies – it is as nothing to the discriminatory treatment of those with dementia. Indeed, in a recent blog I made the statement that to live in Scotland today with dementia is to be marginalised, diminished, and ignored. And you can imagine the brickbats for that one. But I really meant and mean it. I wasn’t playing to the galleries. I was pleading for some sort of change.

Honestly – if it is not discrimination – what is the unequal treatment of people with dementia? It is three years since I and others listened to Henry McLeish the former First Minister at the launch of Alzheimer’s Scotland’s report and work on Fairness and the echoing absence of commitment, and the vacuous emptiness of rhetoric has left us with no change, not an iota of progress and that which was even promised has been pushed into the long grass of political commitments to be revisited when other priorities are attended to and other agendas fulfilled.

Let us be completely honest here and I will say this in the simplest of terms so that those with ears can hear and those too stubborn to answer can respond. If dementia is not primarily a health condition, then what is it?

Yes, dementia affects our social interaction with others, yes it affects our ability to live independently, yes it affects our ability to be a citizen in our communities – all characteristics of social care and what social care seeks to address – inclusion, participation, and voice.

But my mother’s primary needs – over and above all else – were health needs. Her brain and body were bulldozed by a condition that is first and foremost a clinical disease. So why the dickens did we have to fight and so many of you have to struggle to get a political, fiscal and societal response to dementia which is fair?

At the apex of all this is the fact that if you have health needs then your treatment and care is free at the point of delivery. Dementia not only overtakes our living and loving, but the way we have structured our response in this Scottish society means it consumes our resources, it eats up our cash and removes our assets. In very real terms and especially now when we are faced with cost of living and energy crises it impoverishes families and pushes many into a poverty of finance as well as a poverty of heart and soul. I know so many who are worrying today about how they will be able to pay for the cost of a loved one with dementia – whether in care home or in their own home. That should not be – it is obscene beyond description that we should as a society have created a divide between those who are ill, those with different long-term conditions. It is wholly unacceptable. It is not fair!

To treat someone as different – to behave in a manner which diminishes them, which deteriorates their health and wellbeing, is discrimination.  As a society we are allowed, of course to treat people differently, but must only do so if the end is justifiable and provided that we do not treat someone unfairly because of their race or disability or sexual orientation and so on.

The experience of people with dementia is discriminatory – pure and simple. As a society we rightly call out and condemn the unequal treatment of someone who is Muslim or Jewish, or a minority ethnic person, or someone who is Gay or Trans – we even accept the necessity of hate legislation to call out the perpetrators of such abuse. But what do we do when it is our societal system which allows the abuse to continue against people with dementia – because people with dementia are discriminated against on the grounds of age and gender, as well as health condition and diagnosis? I have said before that the treatment of people living with dementia because they are primarily older and by a majority female is riven with blatant age and subtle gender discrimination. What we witness every day is a lack of political and social nerve, commitment, and intention.

Fundamentally this is a human rights issue, one of the major ones of our time and generation. Human rights are not just about the big macro things which impact on our society, they are not just about the way those outside our country are treated. Scotland is on the cusp of creating a new human rights legislation and we have a tremendous opportunity to do things differently and to truly walk the talk about human rights and dementia. For human rights to mean something more than simple words, they must come alive in the ordinariness of our loving and living. Where dementia is concerned human rights seem if not dead at least absent – it is time to resuscitate our commitment to making Scotland a human rights society, and to give new life to dementia strategies that don’t just pay lip service to human rights and think that by mentioning them the task is completed – we need to embed, enact and let our rights flourish. We need to act to make human rights real for dementia.

Fairness when you look at it in the dictionary has a range of meanings – yes it means to treat someone with impartiality, to be even handed and respectful but it also in its Old English derivation and in Old Scots has a sense of ‘beauty’ about it. Something which is fair is considered to be a thing of beauty. To stretch this somewhat there is something beauty about acting in a way which is equal, which considers that the treatment of individuals with dementia and their kin, should be about equality, free from bias and discrimination, of age or condition; that it should be about their human rights. There is something beautiful about equality – but what we have in the current system is not beauty but the ugliness of discrimination, of partiality and victimisation of a condition and those affected by it.

We can wait for others to wake up and finally listen, or we can together act, demonstrate, shout and campaign with even greater vigour. We have to recognise we have power, voice and ability beyond that which we know and that together we can and do make a difference. Human rights, equality, challenging discrimination does not happen on paper it happens in the hearts and minds of people; it happens when we work together to challenge the wrong. And this is all wrong. There is no alternative – for people like my mother now long gone, and for countess now living and those yet to struggle with dementia we have no alternative but to join with others to say ‘This isnae Fair’ and its time to stop!

Donald Macaskill

One of the consequences of writing a weekly blog is that it comes round inexorably every week. It also means that you cannot really avoid the events and what has happened in the week that has passed. That said I had decided not to write this blog today up until a few moments ago, not least as there have been so many words, memories and thoughts shared about the death of Her Majesty the Queen. But having spoken to a few folks and having read so much on social media, the traditional press and watched so much television I have been struck by a few thoughts and want briefly to share them.

Social media can be especially cruel and notwithstanding the fact that there is a very real diversity of opinion around the role of the monarchy what has surprised and also saddened me is the frequency of comments relating to the fact that we should mourn less the death of someone who reached the age of 96 compared to someone who was younger. I come across this all the time, indeed virtually every day. The inevitability of working in the care sector around and with older people is that death in latter age and very old age is natural. Associated with that is an ageist societal assumption that because someone is older that their death is of less value or significance and more than that that the sense of loss and grief and emptiness on the part of those who are left should be by consequence less severe. Too often have I come across people in their twenties or thirties made to feel guilty that they are struggling with the loss of a grandparent in their nineties. Such a presumption makes a mockery of the reality that when we lose someone we love the longer the length of that relationship the deeper the well of emptiness and the depth of sadness we mine. Tears are no less strong, the pain of not seeing that familiar face, the echoing absence of presence is no less diminished and intense simply because someone has reached a very old age. They still had so much to give and share, so much to achieve and be, that their absence is as acute as the loss of someone much younger. I think it is simply wrong for so many today to point to a life well lived and a long and healthy one and to somehow impugn that the pain of grief should by consequence be dictated by the chronology of time

The second brief observation I want to make is that I have been surprised by how much I have been personally touched by the death of the Queen. I am by no means the only one who has mentioned this or spoken of the sense of being caught out by the sadness of the hour. One of the main reasons for this, I suspect, for me is that her death has brought to mind the memories of my own parents now long gone and of grandparents even longer away from me. I have reflected on the struggles they had and the death of the Queen as one of the last of a generation who shared their days of history through war and renewal, has resonated deeply. There is a sense for many of us that a touchstone, a cairn of memory and moment, the security of a presence that affirms familiarity and belonging has passed with the death of the Queen. We need I think as a whole society to acknowledge the sense of individual grief people are feeling at this moment, not just for their sense of losing the Queen, but for the fact that her death has opened up for many of us memories of those important to us who are now longer alive. It is rare for the death of someone else to bring home the rawness and questions of our own grief, and such feelings need to be held and supported by the love of those around us and by the awareness of the wider community. The death of the Queen has made many of us face up to our own work of grief and so many of us are ill equipped for that journey. We will in the days and weeks ahead be faced with a collective and personal grieving which will require communal understanding and love.

Lastly – and this may be somewhat ironic given you have read up to this point – there have been so many words written and said, television programmes and films aired about the life of the Queen over the last two days and this will doubtless continue up until the State Funeral. It is only right, I think, that as a society we will continue to focus on memory and loss, recollection and insight, but I really hope we get some space to be silent, to grieve and to be quiet, that we can all be given space simply to be on their own, apart from the commentary and comment, cocooned from the sounds and words, alone from the sights of flickering film and footage.

A funeral is a marker and a moment, a ritual of remembering which even for someone we only know as an anchor in our communal togetherness, needs to be a time and a day apart from all others. The funeral of the Queen will touch so many people in such diverse ways. I really hope that we all of us have the chance to find a space or place to nestle into our grieving for whomever we are grieving; I hope we can find a way in which we are able to be supported and loved in our hurting; I hope that those living in the face of a dying loved one find the ability to be present with that person; that those who have in these days lost someone important to them have the sense that their death is as valued as the mourned one society is focussing on;  because when all the words are spoken, all the cameras are shut off, all the people wander off to the ordinariness of living, when friends return to their own lives, the bereaved are left to the emptiness of absence, to a room unfilled with love… it is then we must be present to hold each other up and that is even harder if the days before that moment are as full as they have been.

 

 the other side of memory…

 I close my eyes and remember…

 

all those days that we have shared;

when you brought a bright spark

to cold and damp monotony;

when we collapsed in side-splitting laughter

about the nothing things of life;

when we listened to a piece of music

and tears sounded to its rhythm.

 

I close my eyes and remember…

 

all those faces that we have watched;

the fearful thrill of cradling life

as young new-born parents;

the certainty of adult doubt

as teenagers looked for answers;

the aching loss as the bone of our beginning

shrouded itself into the earth.

 

I close my eyes and remember…

 

all those places we have wandered;

the homes that we have furnished

with the love of our welcoming;

the journeys we have made

whose destination was beyond a horizon;

the hearts and lives we have changed

though we were blind to the knowing.

 

I close my eyes and remember…

 

all those graces we have been given;

the gentle glimpse of your hand,

open to share and bring comfort;

the smile which put at ease the stranger

and made them a friend for life;

the timbre of your content

as music filled a room;

the fragility of your strength,

from knowing Love in our midst.

 

I open my eyes and recognise…

 

that as the sun sets on this day,

as dusk scatters light

into the encroaching dark;

so somewhere,

on the other side of memory,

you are there.

 

And in that place beyond all sense

the sun is already shining,

the light is growing,

as the dawn of new beginning

aches its way through love’s pain

and loss’s mourning.

 

I open my eyes and see

that you and I are

both here and there,

both memory and future;

 

a life lived,

a love shared,

a beginning started,

a light rising,

over there

on the other side of memory.

 

Donald Macaskill