Written by Anne Laney, Us in a Bus Interaction Practitioner
“Within our work we are privileged to support the people we see through all of life’s ups and downs. This includes spending precious time with people at the end of their lives. How can Intensive Interaction maximise the preciousness of these times and be useful in coming to terms with feelings of grief?
The nature of what we do as Interaction Practitioners, means that we recognise and value the moments of human contact above all else. How best can we support someone who may be expressing fear, sadness, regret, anger, and when they may not understand what is happening to them? What is our role when someone is moving towards the end of their life?
Dealing with terminal illness is pertinent to us here at Us in A Bus as we come to terms with the fact that Emma, someone we’ve known for many years, is dying. In asking ourselves these questions, we have concluded that they are ultimately often answered with further questions!
As Emma moves through her illness, the changes in her physicality and personality are becoming more pronounced and the distress she shows almost constantly is, to us, extreme and upsetting. As Emma has always had a considered and restrained approach to physical contact, the fact that she now seeks out our hands to hold (anyone’s hands to hold we suspect) indicates to us that she is anxious at the very least, may well be fearful and possibly terrified. Our opinion is further reinforced when we hear her distraught sounding voice and observe her pained and frightened expression. She is clearly experiencing pain (we know she is receiving the strongest medication to reduce this so probably considerable pain) and is, we suspect, recognising that this is ‘different’ from other experiences from her past. She reacts to this knowledge by becoming fretful and afraid and by seeking comfort.
The route of our dilemma is this: do we have any responsibility, to anyone, to help this person understand the notion/concept of her death?
In the relationships we foster with the people we work with, we aim for equality during our time together. We value what people offer us, celebrate their personalities and share parts of ourselves too. We keep our communication honest and our focus on the person we are with. We sometimes draw support from those we’re working with as we tune in so carefully to the connection we have. This is an uncommon dynamic within ‘pmld land’ as people with complex and profound disabilities rarely have the opportunity to provide emotional support for others. Suddenly being in receipt of knowledge about the person we are with (i.e. they have a terminal illness……and all the details that may go with this) and not knowing if they have the same knowledge feels very strange, unfair (to them) and in truth a little emotionally burdensome. As humans we want to help, to ‘make things better’ and to be honest. What do we do?
Our starting point is that we do not and cannot know what level of understanding our wonderful lady has. We have our thoughts about it, as everyone does, our hunches based on our observations over the years. But, she doesn’t speak and uses no formalised communication so we do not have a definitive answer. She is, without doubt recognising pain and fear and difference but whether this is the result of an intellectual understanding of the situation, an emotional response or a combination is impossible to tell.
Is there ANY benefit to her in having an explicit conversation about dying? In doing so would we be meeting our needs rather than hers? Would we be adding to her distress with our openness rather than alleviating it? What purpose would we be achieving by openly confronting death?
Because of all these unknowns we have concluded the approach we will take is one of ‘responding in the face of death as we respond in the face of life’. For us this means supporting Emma in her times of pain and fear and empathising with her, not trying to alleviate her worries by trying to cheers her up or ‘jolly’ her along. This is how we always work. Intensive Interaction works when we are mindful of someone’s emotional state and join them in their feelings landscape.
If someone is having a particularly uncomfortable day which we cannot alleviate in a physical way, maybe saying “Aw, I can see you’re not comfy today” and mirroring their facial expressions is a respectful way of showing we are listening and that we care. We will make extra time for her, believing the others she lives with would want this for her. We will explore the recent changes in her desire for physical contact by holding her hands and ‘dancing’ with them. We will tell her she’s beautiful. We will stroke her hair.
We will reminisce with her about the past: good times we’ve had and people she has known. Celebrating our history together seems especially important at this time. This may lead onto the fact that some of these people have died and we have decided to focus on the fact that this means they are no longer in pain. We think Emma is a person of Faith and are still debating what her understanding about the ‘transition from life to death’ might be. There may be a moment when ‘words’ about this seem appropriate but for now we will use Emma’s language, as always, to express our love of her and desire to comfort her in the best way we can.”