SIT DOWN TED!

She told him for the umpteenth time.

*Ted didn’t want to sit down. Ted wanted to walk, but every time he tried his attempts were hampered. He was becoming quite fed up! Another cup of tea was not going to cut it! I suggested to the lady that maybe Ted, who lived with Korsakoff’s dementia, wanted to walk. He may have had any number of reasons to walk without needing to justify himself; to move his stiff knees, connect with other people, go to his room, go outside or just walk on a whim. The possibilities are endless and as expert Wendy Mitchell stated, “walking might be the only thing they can do that preserves the little autonomy they have.” The lady attending to Ted and I talked about enabling him rather than disabling him.

I don’t know about you but sometimes when I forget stuff, I like to retrace my steps or get on with my day hoping the thought will return to me at some point. In fact, it happened a few times to me just while I wrote this blog. Room to roam, the space in between, movement, it all helps me remember and stimulates thoughts and ideas. The difference is, no-one stops me from having a wander.

Anyway, the next time Ted stood up from his chair, the lady, his carer followed Ted to the bathroom where it became apparent he had needed the toilet.

I understand the dilemma. Carers are overworked, underpaid and often groomed by an institutional residence to practice in ways that carry echoes of control and containment from past decades.  Experience and, “this is how we’ve always done it,” are often worn with pride, quietly commanding respect, deference and compliance even though times have moved on.  It’s hard for fresh faces to challenge current practice and care, trying to create space for more compassionate person-centred approaches.  Also, if as an employee you are not treated in a person-centred way and valued, why would you practice in that way? It takes a lot of energy to challenge and change baked in cultures. Easier to follow precedent, make no waves, after all carers are not paid enough to carry the stress involved to bring about culture change. This, I believe, is where bold leadership is needed at all levels with permission to change culture and see the person before thinking about tick box lists.

My point though, is that it would have been quicker and easier to listen to Ted and accompany him to do what he needed to do rather than respond in a way that caused him to become agitated and restless. Not allowing autonomy, the freedom to make a choice, and then agency, the ability to act may not only be against the law (eg. Mental Capacity Act 2005, Human Rights Act 1998, Equality Act 2010, Care Act 2014) it is bad for our physical, mental, emotional & social health. Ted utterly had the capacity to get up and walk to the toilet, signalling if someone was able to listen, that he needed the loo.

Imagine if I had not been there, what might have happened. Might Ted’s behaviour have “escalated” expressing increased frustration & righteous anger? Would he have ended up being isolated, sent to his room like a child triggering goodness knows what? Would he have been medicated if his anger escalated? Would he have needlessly worn a wet pad? I wonder.

If Ted’s situation had been met with compassion, curiosity and empathy, I am sure the situation would have panned out quite differently. Imagine if the carer had organisational permission to take the time to ask Ted if they could walk with them, maybe ask for his hand or arm if need be? What if some lightness and humour was enjoyed along the way? Maybe then Ted’s needs would have been met. Not just his physical needs, but his need to make decisions in his life. He would have been treated as an equal with dignity. He would have been moving his body on his terms, after all use it or lose it they say. He would have felt in control of his decisions and this in turn improves mood and mental health. He would have been physically comfortable having met a basic need.

There is always a reason for a person’s behaviour. It is not for us as advocates, supporters, carers or enablers to stop or stamp out the behaviour by the quickest and most convenient means necessary. It is for us all to help a person fill in the gaps, lightly join the dots if needed so the person can continue to enjoy not only autonomy but agency in their lives. Lacking capacity for a person living with dementia isn’t total, it’s an ever changing and fluctuating landscape which we need to tune in to.

The more autonomy and agency we generally have over the little things, the personal stuff, the bodily stuff, the happier we generally are. Whether that be a wish to go and look out the window, go outside, get a drink, talk with someone, be in company or alone, we need to be able to make those decisions and we as supporters, organisations, communities, councils and government need to genuinely facilitate that.

I wonder if we could re-write Ted’s story more from a place of we and let’s, more from a place of power with, rather than power over. From a place of enablement rather than disablement. A place where the person comes before the system …..

“Ted. Hi. It’s me Lydia,” she smiled.

*Name changed to protect person