Care homes beyond the headlines: a longing for renewal.

Next week for three days folks will pop in and out of the Care Home Gathering which is Scottish Care’s virtual event for the care home sector. It comes at a time of real continued challenge and uncertainty for all those who are residents, their families and those who work to provide care and support.

A lot has been said and spoken, written and commented upon in relation to our care homes over the last year. The headlines have been full of stories, many of which have been ones of sadness and loss as the vicious effects of the Coronavirus have been felt across the country. People who have never been into a care home have taken upon themselves to comment and analyse, with a real mixture from voices of strident certainty arguing their views to those of a more reflective tone. But whilst others have commented and observed and in the midst of all the debate and blame, the castigation and mud-throwing, there have been the tens of thousands whose homes these places are, whose place of work these communities are, whose loved ones call these places ‘home’. For so many of them there has been a real grief not only for those they have known and lost but also for the very place they call home, for its rhythm and sense of peace.

There is a real sense of grieving for what has been lost and is in danger of still being lost combined with a longing for a restoration and a return to the familiar and the trusted past.

One of the greatest contemporary writers on loss and bereavement, and a huge personal favourite is Brené Brown. Her words on courage, vulnerability and empathy are well worth a look. In ‘Rising Strong’ she wrote:

Grief seems to create losses within us that reach beyond our awareness–we feel as if we’re missing something that was invisible and unknown to us while we had it, but is now painfully gone…Longing is not conscious wanting; it’s an involuntary yearning for wholeness, for understanding, for meaning, for the opportunity to regain or even simply touch what we’ve lost.

‘Longing is not conscious wanting; its an involuntary yearning… to… touch what we’ve lost.’

The tragedy which we have witnessed in the last year tells only part of the story of what care homes are really like. In this job and over nearly five years of doing it I have had the privilege of seeing what care homes really are, small and large, in village and city, on island and in suburb, fragile and strong. No single one is the same as another, any more than the homes we live in are alike.

But in truth they are ordinary places of brick and glass where extraordinary people live; not just extraordinary because of their age or what they have done or who they have been, but because they are people who are still sharing and telling, still creating and giving, still full of life and loving.

I long for the day when we get beyond easy soundbites to understand what a care home really is. It is not a place to be garrisoned from life and risk, to be secluded from loving and the reality of pain. They should not be places of antiseptic cleanliness but the mess of living. They are not places to cocoon older age but to enable people to live out every ounce of breath until their last. They are in no way places where individuals go to die, quite the reverse, they are places where one lives to the fulness of your hours; where compassion sits down beside fear and strokes away hurt with a hand of assurance. They are often amazing places because they are honest – for there is nothing more authentic than in living in the last days of one’s life and doing so in a way that enables you and others still to grow, to achieve, to create new starts and new loves, and to share touch and tenderness.

I long for the day when we can end the silence in care homes. The last year has brought emptiness to care homes, a quietness of absence where we have separated family and resident in the name of safety and protection. This has been an aching and harrowing time for all involved. No one I know in a care home as a manager or staff member wants to be keeping family out, but they are many of them struggling with fear and anxiety that the virus if it comes in will destroy all that is good about the place. They are struggling with being blamed and investigated, fearing being dragged into the court of media and law. So, in the midst of all this fear and fragility, we must together find a way to use vaccinations, robust and trusted testing, PPE and good infection prevention and control to restore relationships and re-unite families. We have just passed ten months of a separation that has saddened and destroyed in equal measure to the virus. We simply cannot continue for yet more time to be lost to individuals who are not ‘visitors’ as if they were casual and occasional observers of life but are rather in many instances the very reason a resident has for living.

I long for the day that we can with confidence address the fear and anxiety of the countless numbers who write to me and who are frightened to go near the care home to visit loved ones because of the dread of the virus. I know these folks need to be supported by assurance and safety to re-connect and return.

I long for the day when we can see activities and entertainment, music and laughter return to care homes. Now I know that staff have been doing an astonishing job to keep the spirits of people up, to keep folks active and engaged, through a whole host and variety of creativity and involvement. But they would be the first to say that we all need other voices and experiences, sounds and songs, to stretch our memories and keep us going.

I long for the day when we start to respect again the skills and professionalism of care home staff, from managers to frontline carers, nurses to cleaners. There are times in the last year when it has felt to far too many workers in care homes that their professionalism, expertise and skills have been cast aside, ignored and neglected. The 50,000 plus staff who work in our care homes are dedicated and trained, compassionate and caring. They know what they are doing and at times it has felt that ‘experts’ from outside have been telling them how to suck eggs. But I have also lost count of how many visiting professionals have confessed to me how they now marvel at and respect the skill of the work which occurs in care homes. So, I hope in my longing for the future that greater collaboration, mutual respect and understanding of roles can be cherished and nurtured.

I long for the day when staff in care homes can have a rest and can be renewed and restored in mind and spirit as much as in body and muscle. This has been a time of emptying the heart, when there have been too many tears shed and moments of real soul-sapping sadness. Frontline staff facing yet more assault from this virus are exhausted and drained and they need space to mourn and grieve, to re-connect with who they are and with those they love.

I long for the day that we stop treating care homes as mini hospitals and that we recognise, because an awful lot of commentators, policy analysts and so called ‘clinical experts’ have wholly failed to recognise, that a care home is first and foremost someone’s home and not an infectious control unit. I am increasingly frustrated when I hear people talking about ‘institutions.’ A care home is NOT an institution it is the gathering together of individuals to live alongside others in a way that they can be supported and cared for, nurtured and loved. At its best it is a living out of being in community and togetherness with others.

I long for the day when the hypocrisy of our political and chattering class is replaced by a reflective honesty which accepts the fact that care homes and social care in general has been for too long the forgotten sector, under-resourced and under-valued. It is astonishing the degree to which some politicians have discovered their voice to comment about care homes when for decades they have at local and national level presided over tightening budgets and restricting terms and conditions. We need an honest debate about how we are to fund and resource our care or we will continue with the complicity we have had which has kept social care out of sight and out of mind, given the leftovers of fiscal allocation. We need a debate which goes beyond easy soundbites and gets to grips with the fact that workers are underpaid for what they do, charities are leaving the sector because they cannot continue to subsidise the State’s failure to fund, and where there is a desperate need to invest in both people and organisations. And let’s not make this about a debate rehashing old lines of defence – let us be honest about the need to work together, to build a care service enshrining the autonomy of the individual at the heart of all we do, rather than the needs of organisations or systems.

I long for the day when we centre the essence of who we are as a community and a nation around the women and men who receive care and support in care home and in their own homes. The way we care is a mark of the depth of our humanity and the extent to which we are open to others. At the moment I think we might be found somewhat lacking.

But most of all I long for smiles and laughter, gossip and rumour, memories and story to return to our care homes. These are amazing places with astonishing lives. I hope that when circumstances permit those who have talked so much about these places of brick and mortar, who have pontificated and judged, opined and observed, will knock the door, be invited in, walk around and watch, listen and learn of the loving and the giving, the sharing and the togetherness, because behind the headlines there is humanity.

We have the chance to restore and renew… lest we forget what we are in danger of losing.

‘Longing is not conscious wanting; its an involuntary yearning… to… touch what we’ve lost.’

Donald Macaskill

Please think of joining the Care Home Gathering for all or part of it – for debate and discussion, honesty and reflection, remembrance and creativity. See https://scottishcare.org/care-home-gathering/ and follow the hashtag #CareGathering.