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