Break Down!

It’s safe to say I’m an advocate for people’s voices to be heard, especially when they’re less able to speak up for any reason. This is particularly the case given my line of work. I take pride in leading by example, venturing offroad, listening to the passenger alongside me (i.e. the client) with all my senses, responding appropriately to bumps in the road and changing gear to improve how I support an individual.

I have a few bugbears, and a big one is speaking about a person as if they are not in the room. I think it rude not to include a person who is in our presence in a conversation, and especially if it’s about them. It’s exclusive! Imagine then, oh horror of horrors when I found myself speaking to a carer about some of mum’s past experiences without directly including mum. She was helping mum with her lunch when I arrived, and we got chatting. The conversation had started so well with me steering conversations with prompts in mum’s direction to make sure she was involved, no matter the topography. But then I did it. I found myself talking directly to the carer and not involving mum. Oh the car crash of shame! Excluding my own mum from a conversation. How had that made her feel and me with my reputation too! I had fallen short of my own standards!

I could make excuses saying I got carried away with reminiscing about mum, or that maybe I was a bit low on fuel (have I taken the metaphor too far yet?), but the point was I was no longer reminiscing with mum.

So what did I do, apart from redden with embarrassment? I apologised directly to mum, “I’m sorry mum. That was rude of me talking without you.” Mum responded appropriately intoning that I was right to apologise. Something wonderful happened though, mum’s carer also apologised affirming further that mum was right to be revved up at us. We agreed with mum that she had every right to be annoyed up with us, meeting her where she was making sure we tuned up and tuned in. She softened, agreeing through the tone of her voice even when words failed her. The point is we repaired and this seemed to make things better with her.

So, no harm done with our wee bump, this time, but what if mum or the people we support experience exclusion time and time again, micro-rejections which build and compound, validating that you are not important, dismissing you, your personhood, sending you a strong clear signal that your voice doesn’t count. What would we do? Well, we might get proper pi**ed off and communicate this through angry or agitated behaviour. I know I would, at least for a while until I was too exhausted trying to hold my own or fighting to be heard. This behaviour might then be considered as a symptom of the dementia rather than feeling righteously cheesed off. I might be given sedatives to calm my demeanour, make me easier to “manage”. Really, as humans, we all simply need to be heard and have our frustrations acknowledged, but more than that we need to be validated and understood. Some empathy would be welcome.

It may be that after prolonged exclusion we feel it’s not worth engaging any more, and we want to get out, run away. If this isn’t physically possible, we may start to shut down and travel inwards, especially if words are hard to come by. We may become more and more dissociated. Maybe our supporters will consider us depressed so again medication may be considered to address our state of mind. Who are we medicating for anyway, to fulfil the needs of the person we support or soothe our own discomfort. We may be thinking, “what’s the point, no-one cares anyway. I’m just a burden,” and switch off. It’s a human response to how we are treated and it’s our environment which is depressing.

This is where parts of Dan Hughes’ PACE model come in useful. I’ll exclude the P for Playful for now although it may be appropriate depending on your relationship and how you both navigate repair. However, we can definitely employ A for Acceptance of our shortfall, C for Curiousity about the person and how they’re feeling, and E for Empathy to help repair along with a heartfelt apology. Wondering aloud about how a person might be feeling and sharing how I would feel if I were in their shoes can be a powerful salve. Remember too to allow space and time to listen to the tone of a person’s voice, their body language and facial expression to really hear them.

Upon reflection, my wee hiccup was a healthy reminder that we can find ourselves going down roads we wouldn’t normally take, especially when we are worn out or spend a great deal of time in organsiations with powerfully engrained cultures, but rather than rolling on without consideration, we need to check our relational satnav and make sure our direction is true and that all passengers are aboard and on board.