Our response, our gaze, and our being with a person living with dementia can af rm or negate their personhood, status, autonomy, being-in-the-world. What goes on in our minds when we engage with a person living with forgetfulness will determine the interaction. Not only do people living with different abilities become super sensitive and alert to the way that the world sees them, but they also hide away from negative interactions or blatantly react to them. (The bath-time rituals that so many of us have witnessed that end up in a screaming, hollering fight.)
The physical body and the way that it is positioned/placed/affirmed play a major role in well-being. When the body is aching or cold, one can physically see a person cringing or going into a foetal position, drawing inward. When they are not able to verbally communicate their aches, pains or discomfort, it often shows in facial expressions or body language. The sight is familiar to many of us, seeing Elders sitting hunched, their legs crossed, arms folded, heads bowed and shoulders slouched. The entire body is showing a need to be protected.
In all my years of working with people living with dementia, I have once only been told: “Do not touch me”. When I visited a “frail care” on Wednesday, I noticed again how Elders living there reached out to me. The minute I make eye contact, really look them in the eye and engage with my whole being, they will open up, a hand would reach for mine, and the ice would melt.
Physical touch is one of the most powerful ways of affirming a person. Not the touch of wiping a mouth, changing incontinence wear or washing a body (although these can be incredibly affirming as well it seldom are.)
I am a big bear hugger – full body, not just shoulders touching and pushing away after a second. A full body, every part of it, embracing, holding. A hug is useless if it lasts less than 20 seconds. And what is so magic is when you can feel the hug starting to melt…. At Huis Ina Rens in Paarl (a small home for people living with forgetfulness) some of the ladies came straight into my embrace when I arrived, holding on for dear life, sharing the warmth and energy of my being with them, right up against them, with them, becoming one person for a moment.
Many years ago I watched a BBC program (Anneke Rice was the presenter) about a group of experts going to Romania to help upgrade an orphanage. The manager told the cameramen that they had more and more cot deaths. After much investigation, they realised that it was the babies who were not being held on a daily basis that actually just died… When they got in more volunteers to hold the babies, the number of deaths plummeted.
The same goes for older and vulnerable people. When they are not being held in a meaningful, present, warm, embracing way, they will wither away, becoming living dead people. We ALL need to be held, daily. Some perhaps more emotional or intellectual, but when your world has become so small, being held physically is essential. It affirms your presence, your aliveness, and your physical connectedness. It grounds you, and makes you feel secure, as much for the giver as for the receiver. Take the time to hold the person, you will affirm their Being in more ways than you can imagine.