Don’t Bottle It Up

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.

Our collection of feelings grows and becomes more complex as we age and, 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 someone 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 (Butterfly moments) when the two people are in tune with one another. One the person with dementia who feels sadness without sometimes being able to easily explain and the other the care giver who has gone some way to develop their `experiential resources’ – 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, we carry on without dwelling on our hurt because going back over it can mean reliving the 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. 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, when 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 worked through, with the rest of my family, how we all felt about it.

Another example, from Jeremy Clarkson, in his article in the Sunday Times (08/06/2021), referenced Keir Starmer’s recent TV interview and suggested, `bottling it up’ as the best way to manage feelings. I couldn’t agree less.

Making that care experience, the Butterfly moment, 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.

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.

Our collection of feelings grows and becomes more complex as we age and, 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 someone 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 (Butterfly moments) when the two people are in tune with one another. One the person with dementia who feels sadness without sometimes being able to easily explain and the other the care giver who has gone some way to develop their `experiential resources’ – 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, we carry on without dwelling on our hurt because going back over it can mean reliving the 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. 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, when 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 worked through, with the rest of my family, how we all felt about it.

Another example, from Jeremy Clarkson, in his article in the Sunday Times (08/06/2021), referenced Keir Starmer’s recent TV interview and suggested, `bottling it up’ as the best way to manage feelings. I couldn’t agree less.

Making that care experience, the Butterfly moment, 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.