I want to go Home, by Rebecca Swift

I’m sitting in-between Ruby and Gloria – two residents in a local care home. We are taking part in a weekly creative session with residents and care staff, in a tiny communal room in a nursing home in New Cross Gate.

This cultural space, deftly facilitated by artists Charlene Low and Zoe Gilmour, allows me, Ruby and Gloria to meander our own conversation within an overarching activity – doing your own thing whilst simultaneously being part of the group.

My perception of this moment reveals as much about me as it may cast light on others; we might sense a resonance in someone because we know that quality within ourselves. This two-way process illustrates how meaning can be alive in the space between people and beyond the word dementia.

Gloria, to my right, speaks rapidly, barely taking a breath to an exhausted support worker who looks the other way. Gloria appears certain and the next minute not; past, present, people and place jumble together (Ruby to my left is quiet, unmoving). Gloria then relates her stream of story to me – and having the luxury of only popping in for a few hours I listen intently. I don’t know how to relate to her and this perturbs me.

Gloria’s words seem full of an urgent quest to pin something down, reminding me of myself when trying to sort out a problem that overwhelms me. I decide to assume that she is, in fact, trying to solve something – even if it’s not the case – hoping this will connect us both.

She frowns as if searching for meaning as if she sensed if she were to stop talking, she might completely disappear or not be held together. I grasp at reasons why: Maybe she genuinely did hold things together for her family or is dementia displacing her sense of self or maybe the transitory nature of a care home compounds the sensation of feeling home-less….

During coherent and broken sentences Gloria mentions Cornwall. ‘Cornwall’ feels like a passing fish in a torrent of water, so I catch hold of it. We talk about a place in Cornwall we both know, and with that Gloria seems to have stepped onto solid ground (me too). With heartfelt emotion followed by silence, she says, “I want to go home!”

My thoughts stream like hers with an urgency to alleviate her longing: Was home Cornwall despite us sitting in a care home next to a new housing estate bordering onto an industrial estate at the back of New Cross Gate? What about all the other names, streets and people that pepper her tale from now or the past? I begin to feel as disorientated as I assume she is feeling. Gloria conveys with absolute certainty that she knows the feeling of wanting to be home.

Many residents have expressed their longing for home with definite clarity. Sometimes they were returned to their room and it may have been the best sentence at hand to say, “can I leave please, I am tired”, or “this experience is overwhelming.”

But what if being returned ‘home’ to their room wasn’t always what that person meant, in its entirety? What could any of us mean by the word home in all its connotations?

Research arising from work with refugees identifies many-layered meanings and associations held within our sense of home, and the impact that loss of home can have on us. Comparing the transitions we might go through within frailer older age with the disorientation that refugees experience, could help clarify the enormity of the threshold – whether pleasant or challenging – that some of us cross when moving into a care home, whilst simultaneously dealing with complex life changes such as dementia.

In ‘Therapeutic care for Refugees, No Place like home’ (Karnac, 2002), psychologist Renos Papadopoulos writes that “Home is one of the most fundamental notions of humanity.” He suggests that our sense of home is made of complex layers – both concrete and imaginary – which symbolise different aspects of what it means to be human.

Home conjures a feeling of being whole, in one place, un-scattered; where being ‘myself’ might also translate as the capacity to draw together very different facets of experience into one place. The idea that our homes enable us to unite different parts of life and self is echoed by Papadopolous: “within the context and relative permanence of home, one can experience the co-existence of seemingly irreconcilable opposites” (Papadopoulos, p16, 2002).

It’s possible that our experience of living with dementia increases the sensation of being strewn apart. This feeling of not being held together in one place could be further compounded if our sense of self and what we are communicating is misunderstood or not engaged with. In addition to this disorientation, we are far away from the senses and feelings attached to our original homes, terrains, communities.

Home, ideally, is a ‘safe space’ in which to meander, dream, and relax our outer presentation of self. At an informal Entelechy Arts round table, the social scientist Tim Dartington in discussing his book ‘Managing vulnerability, the underlying dynamics of systems of care, suggested that in social situations “we all ‘perform’, even people with dementia perform.” Maybe there is a point in the social space where it is too exhausting to keep up the social presentation, especially if our memory doesn’t fit in with the accepted conventional norms and speeds of most social interaction:

How might our sense of home be manifest within social and cultural spaces whilst we are cognitively, emotionally and metaphorically ‘homeless’?

How can we re-build feelings of home when we are home-sick and refugees from anything we now recognise?

The phrase ‘home away from home’ often crops up when artists describe their experience of Entelechy’s Ambient Jam improvisations: dance, music, live-art improvisations which bring people together with and without complex disabilities, across abilities and ages. Many have said, “It’s like coming home.” These sensory improvisations value modes of expression and ways of connecting that may not always be verbal or linear. A social ecology infused with these particular ingredients can signal home away from actual home for some. For others these improvisations have been known to initially increase feelings of vulnerability as social etiquettes and norms of mainstream society, on which we rely and excel, are often turned upside down.

The following answers identify a few of those ingredients within the social ecology of an Ambient Jam which might help many of us, whatever our descriptions and labels, feel at home in the presence of strangers. They allude to a sense of home found in being physically present or embodied, situations where many different conversations in different modes can co-exist equally in the same place:

· sensory improvisation allows for multiple ways to co-exist. Ideally, it honours that there may be many ways into a conversation

· different energies and contrasts from pedestrian to aesthetic beauty, collide creatively in one place

· a natural sense of mindfulness ensues as we begin to bring attention to ordinary, fleeting, subtle or tiny moments, usually dismissed or not noticed

· similarly, there is a re-awakening of our physical presence (suspending the stream of thoughts in our mind) bringing attentiveness to incremental moments of agency arising from our own volition

· improvisation at its best doesn’t put a premium on any one way of doing things or on just achieving an outcome, but on how we might all, in sometimes imperfect ways, build something together in the moment

· we all can share in and legitimise disorientation together

· sometimes being able to make a mess, being wild and chaotic, releases us to be ourselves again

· a multi-layering of senses, such as stepping through a play of light, whilst hearing music and smelling mint, can be a fundamental element in bringing us ‘home’. Our physical selves can lead us to a feeling of home through the senses, and often through the natural world

· there is a release of the social pressure to always appear to be doing something – although this doesn’t exclude moments where we do try something out just to see what might happen

· opposites come together, such as sadness and humour, quite happily – some call this surreal

· let’s add pets, dogs, cats to this list – not Ambient Jam necessarily – but important facilitators in affecting how we interact and cultivate a sense of home through simply being.

Whilst chatting to Gloria – Ruby, to my left, murmurs to me. I wonder if she wants me to understand what she says and yet she seems to run out of muscle and memory.  I can’t distinguish the consonants in her speech. I suppress my sense of failure to comprehend – a fear of my inability to make things better.  I wonder if both of us are under pressure to get the communication ‘right’ from different ends of the bridge.

Moving into Ambient Jam mode, I am given a legitimate code to listen for tone and feeling as a way to receive indistinguishable words. This different way of listening – in a social space that allows for different qualities of time and both non-verbal and verbal communication – becomes a lifeline between us. She touches the material of her trousers with both her fingers. Her gesture is full of intention. Although it is a common gesture with many residents living with dementia, it seems full of meaning: her hands in movement remind me of a seamstress. This may well have been the case. Isn’t it better to assume so for a while, just in case? A creative line into communication is to sometimes imbue an action with meaning, simply to see what happens.

With a guess I mention sewing – a currency of many of her generation. Ruby nods and Gloria agrees too.  I assume ‘sewing’ is something tangible and familiar to them, although it’s hard to know whether Ruby is responding to the tone of how I say it, rather than to ‘sewing’ itself. Maybe it doesn’t really matter. Holding suspension of belief where it doesn’t really matter allows for a quality of play which facilitates a testing out of ideas together.

From her expression I feel I have done well to say it, which makes me feel better. We are both helping to make each other to feel better.  I then share the word ‘sewing’ with the whole group and to the facilitators. For a few seconds Ruby and Gloria connect to everyone in the group. Ruby then softly rubs the fore finger and thumb of her left hand together and reaches out much further to a definite place in front of her. She repeats the action and with focussed attention reaches further, repeats, and even further. Her repeated gestures as they grow in strength bring her presence into the room and the group, from the periphery.  Her movement has the quality of sensing or searching for the name of something, yet conversely knowing something, as if the reach of her gesture brings her back into being. She may be seeing something tangible that I can’t see.

Because of the easy atmosphere in the group, I can ‘listen’ to both her arm gesture and its grace as dance, not as a clinical symptom. I make a choice to believe that the way we listen to someone alters something, however miniscule, in each of us and shifts who we can be in relation to each other.

Ruby gives me a gentle, warm hug.  It’s a gift I happily receive.  I felt very appreciated, I assume, for listening. Maybe I remind her of someone in her past too. But then, surely this combination of past imbuing the present and vice versa is no different from the rest of us.

Registered nurse and lecturer, Dr Fiona Kelly writes “Laing (1961) suggests that the process of complementarity contributes to people’s positioning by others and to their acceptance of their positioning. Within this feature of “relatedness”, the “other” is needed to fulfil or complete one’s sense of self. Any action, gesture, feeling, need or role is the complement of a corresponding action, gesture, feeling, need or role of the “other”. Thus, interaction involves a reciprocal process whereby the self is both receiver and giver and the “other” is also needed as both receiver and giver. Our sense of self is constructed through such interactions.” Fiona Kelly (2007, Chapter 2: Theoretical frameworks. Page 25), ‘Well- being and expression of self in dementia: interactions in long-term wards and creative sessions’

Some nursing homes are over-stretched to bursting, and when resources are tight, it’s hard for anyone to create space to give time and take initiative beyond organisational systems and coping mechanisms; to really implant that complex weave of elements that can nourish a sense of home. We are always on the move in some form or another, always changing and dealing with multiple thresholds.

By the end of the session I felt close to Ruby and Gloria, despite any assumptions I might have made in translating their actions. Each of us might have stretched beyond our present selves to connect – it was hard work. I haven’t forgotten them since. I felt the three of us achieved a sense of real communion between gesture, searching and tumbles of words made legitimate because of the ecology created by the artists and residents in the group: The odd word ‘struck a chord’ and being received by them with a gentle hug or a direct look was something I felt I needed too, and therefore I was not exempt from the communal narrative of the space. It felt like whatever our mode of expression we came together as 3 women searching for meaning and different individual senses of home, in a transient place.

“Our relationship with awareness of our own vulnerability is far from comfortable – we have a natural tendency to locate it in other people – it is he, not me, who is in need, it is she, not me, who is vulnerable.“ David Bell, ‘Welfare State expresses an ideal of a good society’ (The Guardian, November, 2010)

By Rebecca Swift, 2011

I want to go home comes from field-notes about a session facilitated by Entelechy Arts artists at Manly Court nursing home in New Cross gate:

Visiting the work gave me the freedom to listen from a place of being a member (not a facilitator) of a group. Being part of the group created the opportunity and privilege for me to learn and listen in a different way. In this vein the work in our care home settings and in Ambient Jam continue to be a ‘university of life’ and embodied research, in conversation between all parties: residents, artists, family and staff.

With thanks to lead artists Zoe Gilmour and Charlene Low, and peer mentors Lillian Bartholomew, Rosie Wheatland, Sybil Reid, and Pauline Payne for creating such a happening, fertile space.

Notions of Home can be viewed and downloaded here in full as a PDF