Would I lie to you?

Ian looked utterly bereft. Shocked.

This can’t be right I think as I try to offer him comfort.

I have just told him, again, that his wife died. Ian grieves her loss, again, as fresh as the first time. I feel his anguish. I too am in knots because he had forgotten she’d died and each time he is told he grieves anew.

Ian lived with Korsakoff’s, a condition which comes under the dementia disease umbrella. It’s usually caused by drinking too much alcohol which stops the body getting enough vitamin B1.

Ian usually enjoyed his massage each week and would happily sit while I smoothed away tension he held in his upper back. It was also a chance for him to natter and tell me about himself, his work, his past life. Recently he had been talking about his wife more and asking where she was. I wondered if deep down he knew something was amiss, but that the painful truth wisped away before he could fully grasp it.

When I first started working in a nursing home back in the noughties, a staff member gave me a 3-page handout on dementia and how to treat people who lived with it. It was all about reality orientation, telling people living with dementia the truth no matter what. I discovered the hard way that it could hurt a person over and over again. That it was often brutal and left the person in a state of illbeing no matter how gently I tried to speak truth.

After the second or third time of sending Ian reeling into a state of fresh grief I tried another recommended tactic. I tried diverting his attention, but Ian became agitated at being dismissed, and rightly so. As a therapist and fellow human, I felt awful that my client’s wellbeing was being compromised by my approach.

Imagine my relief when I discovered another way to handle Ian’s question. This approach eventually became widely known as “therapeutic lying”. It was deliberately lying to a person living with dementia to avoid hurting their feelings and the consequent fallout.

Therapeutic lying was widely justified, described as lying to be kind. I too adopted this tactic. After all, one professional justified, we lie all the time to our children about Father Christmas. Feeling more comfortable, I adopted the technique and for a while it seemed like a less painful way to navigate a tricky situation.

When Ian asked where his wife was, I would answer that she was at the hairdressers or had gone shopping. At the time I taught this as an approach in my course “Massaging People Living with Dementia” whose capacity meant they struggled with retaining recent information. Some students rightly challenged me and affirmed those niggles.

This was never more apparent when I used therapeutic lying to appease my grandma who lived with Alzheimer’s and vascular disease. We were trying to take our leave one day, but ensure she was settled first. Grandma wanted to come with us, but having already been out that day, we knew it would be too much for her to come out again. If she did too much in a day it could overwhelm her and she would become increasingly disorientated, confused and anxious. I remember the discomfort of the deception as I tried to soften the anguish of our leaving. She accepted my words on the surface, but I could see she was questioning them. Grandma was shrewd like that, but she was struggling with the details and how to call me out.

When words escape us, we often rely more on our body language, facial expression and tone of voice. When we are not truthful, lies leak out somewhere. So, when our mouths say one thing and our bodies say another, that incongruence screams out. This may be picked up more acutely by someone who has become practiced in non-verbal communication. If incongruence is the message they pick up, trust fails and when trust fails, we don’t feel safe. When we don’t feel safe, our behaviour reflects that (see my previous blog, A Symptom or a Human Response? (Link to dementia care cornwall (massagefordementia.co.uk)).

I think that was what grandma was picking up on, and why Ian was unconvinced. Grandma, Ian, I’m sorry.

I believe now, having listened to people who live with dementia, that when a huge bereavement occurs, those feelings are held in our bodies if not our brains. I think we hold it within our very bones, flesh, cells and chemistry.

Thankfully, I found other approaches such as compassionate curiousity and gentle validation which I feel are kinder yet remain in truth. It was also about me maturing as a therapist, as a fellow human to sit with others’ discomfort, grief, sadness, all the uncomfortable, inconvenient stuff.

Nowadays, depending on the person, I may ask, “Ian, are you missing Sandra? Tell me what you miss about her?” or, “what do love about her?”, “where do you feel it when you’re missing her?” It really changes the power dynamic in the relationship. It can open a therapeutic conversation that enables a person to work through their feelings, rather than holding them inside or channelling them as behaviours which can be misinterpreted as symptoms of dementia.

For me, improving my practice and teaching has been rooted in reflective practice, being endlessly curious especially when something doesn’t sit right and trying new ways. It’s about listening deeply with my ears, eyes, hands, and heart to the experts and most often, that’s the person living with dementia. I am always listening, re-evaluating, and that is why I am always “tweaking the manual”.

With love, Nicolle x