I love seeing children hug one another when they share feelings of happiness. It is also profoundly moving to see children share feelings of sadness. I wish adults could carry on sharing feelings with such disinhibition.
Our collection of feelings grows, becoming more complex as we age, depending on the experiences we have had throughout our lives. Our ability to empathise, and our inclination to demonstrate empathy, when we see someone in distress, is equally complicated.
Sometimes as an adult it’s tempting to rush in and demonstrate empathy towards someone else when we witness their distress. Often that isn’t empathy but a kind act with a temporary solution. On the other hand, sometimes, we turn away because seeing someone else’s distress feels uncomfortable – it reminds us of something we would rather not think about.
Those are sadly the common experiences of people living in formal care services. A brief hug delivered in passing, a cheer up conversation delivered with good intentions, the offer of a cup of tea is the classic response.
For some people, reliant on the support of others, happiness and pleasure comes from knowing the care relationship is meaningful and genuine. Undivided attention `designed just for me’ and provided by a care person who understands me. Those precious moments when two people, the person with dementia and the care giver, are in tune with one another.
We understand that whilst dementia can restrict our ability to explain our feelings in a way that is easily understood it (dementia) does not restrict us from feeling emotional pain. This is understood by the Butterfly care giver who has gone some way to develop their own `experiential resource’ – to understand their feelings. Kitwood identified these moments in his seminal work Dementia Reconsidered. He refers to the requirements of a care giver and identifies the importance of agreement and harmony between the care giver and the person with dementia.
We cannot all have had the same experiences as everyone we meet. But we have all had episodes that cause us pain. Often though, we carry on without dwelling on our hurt because going back over it can mean reliving painful feelings. But when buried at the back of our minds the feelings remain ready to resurface. A development of dementia makes it much harder to interpret those feelings.
Butterfly care is not provided by a well-meaning care giver with good intentions. The Butterfly care giver has reflected and learned about their own painful experiences. Recognising the links to the lived reality of the person being cared for, loneliness and loss, the powerlessness of dependency, outpacing and objectification. From personal self-examination of our own similar experiences and feelings we can learn to understand. We call this developing our emotional intelligence. If we fail to `recognise our own areas of damage and deficit’ we continue to carry the scars and hurt that those unhappy experiences caused us (Kitwood 1997. p 128-130).
Once, while I was chatting to someone in a bookstall queue, we asked one another what we did. When she told me she was a Macmillan nurse tears immediately sprang to my eyes. I had recently lost my Dad to lung cancer and his final hours were not as I would have wished. I hadn’t properly worked through in my own mind how the experience left me feeling. I’d bottled it all up.
Bottling up feelings is a very common adult way to ‘deal with’ emotionally painful experiences. We can fool ourselves into thinking we’ve moved on until we have a ‘Macmillan nurse’ moment and the feelings bubble to the surface and we realise the pain is still there.
Making care experiences, the Butterfly moments, meaningful for both the care giver and the person living with dementia can leave both people feeling fulfilled. Both people in touch with their own vulnerabilities, whilst supportive of one another.
Let’s make it more like this.
Associate Consultant