Love is not a word that is commonly used in association with a medical model of professional care, or care in general. It is however, an experience that is often shared between supporters / carers and the person being supported / cared for. There are feelings of love between one another. Perhaps some of the issues with the lack of discussion around love in care is that it is so often associated with romantic relationships, and assumed to lead to the crossing of professional boundaries. Love doesn’t have to equal attachment and the crossing of boundaries, it’s a felt experience, it can be a gift extended from one person to another, that when unwrapped it says, I see you, I feel you, I am here for you.
We know there are many ways in which we love and many different expressions of love. We are of course not just interacting with biological conditions, we are caring for people, and there are matters of the heart involved in good, genuine, authentic and unconditional care of others. Not acknowledging this, doesn’t make these matters absent, doesn’t erase the felt experience for the person being cared for and those caring for them, it just suppresses them leading to levels of ill-being for all involved. Love is closely allied to the concept of acceptance. Accepting the reality that feeling exists in care could open many doorways to resolving much of what is currently not working in the way we care for and support people living with Dementia.
“People with dementia, who so often labour with feelings of stigma and the reality of rejection by others, have a desperate need of acceptance. In this they are not really any different from the rest of us. We all have deep fears about being found unacceptable and being excluded. At its best, then, the practice of loving acceptance can be fully mutual – in celebrating the other we can enlarge our appreciation of ourselves (Killick).
It could be said that the things we remember most in life are those that have been felt in the heart. The joys and the sadness, the most exquisite and the most painful experiences, the triumphs and the losses, the forming of friendships and relationships and sometimes the breaking down of these. The ways we have embraced life and how we have perceived and felt the embracing of ourselves in life. It’s not always in the extraordinary but in the ordinary that we find love and that we are deeply moved. Often it is the simplest of things that can touch someone deeply, leaving them with a feeling of being seen and valued.
When we cast our thoughts to those living in care environments or needing to receive care we can easily understand a need for love and for human connection beyond the actions of daily living tasks. With a disability or illness that requires support and care in the current health system, life can very easily become just about tasks, being showered, dressed, medicated, and fed. It can become just about a disease rather than a human experience. It is true that physical care is an important part of staying healthy but aren’t we forgetting the other important parts of being healthy?
We all search for more than physical needs in our lives, we look for fulfilment, for meaningful and deep relationships, for joy, for new experiences, for connection with others. This is also true for people who have a diagnosis of dementia. They are still a whole person, they have not become the disease they are diagnosed with, it is just one part of the whole of who they are. This may seem obvious, but somewhere along the journey the person can get lost – not within themselves, but within us. We can lose them, by the way we perceive them when we meet them within the health system and in care environments.
How would it feel and what might our lives be like if the people that were in our lives focussed predominantly on our physical needs being met and neglected our psychological, social, spiritual and emotional needs? How would that change us? How might we respond to them?
When we connect with the person living with dementia from a deeper more connected place within us, beyond the focus of task or action or intervention or meeting a physical need, we facilitate a connection that is much more respectful, normal, considerate and loving. We connect empathetically and start to perceive elements of what the person’s experience of life in that moment might be. In turn we become more aware of our own experience and the part that we are playing in what is a shared experience between you and another. We have then opened to the opportunity to respond from a place of authenticity, awareness and holistic understanding – true unconditional positive regard.
If a person with dementia experiences this in the moments they are engaged in care and in care environments, their whole experience of living with dementia and adjusting to the changes in life this brings, has more chance of being one that enables wellbeing and supports growth and healing.
We are likely to see and experience ourselves and the person in a new way.
Love has the power to awaken love in return. Increasing numbers of people are learning, through direct experience, that people with dementia have a very great deal to teach and to give us, that relationships need not be characterised only by dependency and self-sacrifice, that both parties can grow through the experience. Perhaps part of what Tom Kitwood meant when he used the phrase ‘morally committed’ was the idea of finding and giving the best of ourselves to the work. This surely is Love. (Killick)
“Coming into close contact with people who are living through a profound and poorly understood condition as dementia certainly demands that we tolerate uncertainty, practice the qualities of hopefulness and faith, and be open to possibilities for which we cannot always plan or prepare ourselves”. (Killick)
So why are we so afraid to acknowledge and speak of the elephant in the room – the love that resides and is present in good quality holistic and person centred care?
It really is not so much about what we do but how we do it, it’s about how we are being with others and how others feel being with us.
Reference: Communication and the care of people living with dementia, John Killick, 2002.