Enhancing the lives of older people in our care homes

The following is based on part of an address given last Tuesday at an online conference organised by Faith in Older People and Anna Chaplaincy.

To begin with I have to acknowledge that any talk of care homes has to address the problem of image and stigma. Even before the pandemic but certainly since the very understanding of care homes is one that is too often associated with the negative.

But I want to start from the perspective of challenging the stereotypes that care homes are places where people (to use the language that is often used), are places that people are  ‘put in’, or ‘end up in’ … or even worse the idea that they are ‘prisons for older age,’ ‘locations of last resort’.

Yes, it is true that for the vast majority of people moving into congregated or shared living in older age is a decision which is not ideal, and it might be one taken as a result of a decline or deterioration; we acknowledge that most of us would want to remain independent or in our own home for as long as possible.

Yet whilst many more people are living longer, they are also living with multiple conditions or co-morbidities. Another truth is that people are entering residential care much later in their illness or ageing journey. We are therefore talking about a more frail and fragile population, the majority of whom are living with some degree of cognitive decline such as dementia and the majority of whom are on a palliative and end of life care pathway in one way or another.

For many residents their care home is likely to be the place where they end their days. Most care home residents today will be in the home for between 14 and 18 months rather than the 3-5 years which were commonplace a decade ago. In many senses therefore care homes have become ‘hospices in the heart of our communities.’

That awareness has changed the dynamic of many care homes yet paradoxically that has not made care homes places of quietude and sadness but quite the opposite – for many they have become even more places of enjoyment and life affirmation, of living life to the fullest possible extent.

In my experience many care homes are places where individuals flourish, where they thrive, where they come alive, where they discover an energy which they felt they had lost in the years of past memory; where some find a new direction and sense of purpose that they might have yearned for in the past.

It is no exaggeration – at least for me – to state that care homes can be places that change lives and bring a new dimension to the remaining days of life.

In other words, care homes are not places where the task is to exist but rather, and with compassionate support and skilled professionalism, they can become places where people grow until the end of their lives, changing and moulding their days to the new rhythm of their experience.

They are places where individuals are enabled to ‘tell their story’.

Care homes can in the words of this talk be places to enhance life rather than to simply survive – and the role of spiritual care in that enhancement is critical and central.

Enhance is a lovely and intriguing word. It first came into English usage in the 13th century and literally meant ‘to raise something higher.’

When it was first used enhance meant to mak something physically higher, but quickly it became a word used to describe making someone feel recognised, more valued, or attractive.

I love the image that the word suggests. How are we in our relationships and actions, in the dynamics of our happening times and in our silence, in the exchanges of our conversations and encounters – enhancing or raising higher those who we are privileged to spend time with?

Care homes should be about enhancing older age, about raising up, making attractive, bestowing value on age and individual and all that comes with it. They should be about scattering to the four winds the stigma and stereotype of being old, of becoming frail, of losing memory, of developing dementia, and even of dying. Because all of these experiences can each and every one be enhanced – be raised up, to the point at which someone feels heard and valued, affirmed and wanted, celebrated and seen.

Care homes are about creating spaces and places where people can discover who they are even in the last hours and moments of living and loving; they are about raising up older age as something worthy of being affirmed, as valuable in its own right, regardless of activity or ability, capacity or consent.

That is no more the case than when I reflect about dementia. A diagnosis of dementia deserves not to be a full stop in the story of your life, but rather with support and resourced focus it can become the start of a new chapter whose ending is still to be written, whose richness of experience has still to be encountered.

Too often we have both in care home and community limited people by diagnosis and labelled them by siloed response and action. Person led care and support is recognising the particularity and uniqueness of each individual – it is about changing the dynamic of the cared for and carer so the power, autonomy, control and choice rests with the person being supported (perhaps especially if the individual lacks capacity to ‘know’) – it is about not treating the condition but caring for the person.

The role of spirituality and spiritual care in the whole process of enhancing older age in care homes is simply inescapable and undeniable. In a real sense enhancing – raising up older age in care homes – is about recognising that the very dynamic of care and support is at its essence an act of spiritual care. And for me it focuses on several characteristics:

Firstly, that spiritual care which enhances older age should seek to discover and use a language that can be the means of real communication for the person being supported.

Many years ago, I was privileged to spend some time with Phoebe Caldwell who for many is the mother of modern speech and language therapy, not least because of her development of intensive interaction approaches. I have seen with my own eyes how Phoebe worked with individuals who had been ‘locked in’, who had never or had stopped using words as their means of communication. Phoebe used to say that every human being has a unique language and communicates in a unique way. I am on one side of the river- you are on the other – the art of communication is the building of the bridge of understanding from one shore to the other. It is arrogance and hubris of the highest order to assume (as we so often do) that in order to communicate you must come over to my world, use my language, my words. It is much better for us to garner the humility of encountering one another in the middle of that bridge where I learn what your sounds, or eyes, or motion, or jerks say to me and vice versa. Real communication happens when there is a mutuality of encounter. For me that has always been an essential part of spiritual care – I am about learning your language, being humble enough not to assume I have all the insights or answers, all the knowledge and sense.

Dr Maggie Ellis from St Andrews University has done so much to use Phoebe’s approaches in communicating with individuals who have lost the power of speech in the latter stages of dementia. I would commend her work to you not least because now and in the years to come there will be so many more who because of their dementia will lose the power of speech and communication – we can either dismiss them as used to be the case in the way we labelled people with disabilities and autism as ‘non communicative’ or we can enter a new world of self and mutual discovery and learn a new language of spirit, compassion and care. Learning a new language and new ways to communicate is key to effective spiritual care.

My second characteristic of care that enhances older age is a spiritual care that seeks to address the whole of a person rather than the elements that can be simply determined, recorded, and recognised.

In the words of the Scottish Government’s Spiritual Care Framework

‘We all have a part of us that seeks to discover meaning, purpose and hope in those aspects of our experience that matter most to us. This is often referred to as “spirituality”; informing our personal values and beliefs, and affirming that tears, laughter, pain, and joy are all part of the human experience.

 I believe that part of enhancing older age – of raising it up – is to acknowledge that questions of meaning, purpose and hope are as real and valid in older age – and whilst living with conditions such as dementia – as at any other age. These are spiritual questions which we need to give space to – and ignoring them, not encouraging them, or worst still avoiding them is a limiting of the person.

That might take us into uncomfortable territory because I fear that our risk averse attitudes to age and frailty have led us sometimes to treat older people as children, to avoid the totality of being human, to try not to be unsafe or take risks, or fail and not succeed; to somehow think all older people are like one another; to presume that older age has no capacity for the novel or new, has no appreciation of the desire to do learn or discover possibility. Caring for the totality of a person requires spiritual care but is in itself an act of spiritual care. I just wonder if we sometimes limit the shocking potential of spiritual care by being predictable and safe?

Lastly, for me a critical component of enhancing, of raising up older age in care homes is the spiritual art of being honest and real and raw in accepting the uncertainties of the unknown and in giving sanctuary to the deepest fears of individuals.

Care homes are much better at walking with people on the journey to dying than perhaps they used to be. Living in and through dying is a critical component of ageing.

Care homes are in an often-unique position in enabling the giftedness of encounter and relationship formation to build a sense of belonging that can heal the deepest wounds even beyond the tears of grief.

There is perhaps no greater act of care for the person than to allow them to die well, with choice and autonomy and control as much as is possible.

Enhancing the last moments of life, raising up the latter days of an individual, creating space for there to be acts to raise the value and worth of a life lived to the full are all surely the core of spiritual care.

So spiritual care is essential to enhancing – to raising up the lives of all who are older, but not least in our care homes. At its best it is an art that allows the person to become who they have the potential to be, to flourish and to thrive into wholeness.

The Canadian poet Rupi Kaur writes:

“it was when I stopped searching for home within others and lifted the foundations of home within myself I found there were no roots more intimate than those between a mind and body that have decided to be whole.”

Donald Macaskill

Photo by Alexander Grey on Unsplash