Watch out for your own negative influences

Written by Simon Kerrigan for Australian Ageing Agenda, June 11, 2020.
View original article here

Don’t let assumptions get in the way of resident making choices.

In life, we all make assumptions. These assumptions are often related to how we view or categorise other people. We then make decisions based on these assumptions, which affect the way we interact and communicate. 

In the aged care setting, I often seen these assumptions made with our residents who experience cognitive decline. But we’re all guilty of it from time to time, even with our most physically and cognitively abled residents. 

Over the last couple of weeks, I learned a valuable lesson about the assumptions I make when working with my older clients.

Late last year I started working with Olive*. Olive, who is in her 60s, is a resident of one of our partner homes. She is living with Huntington’s disease, which is an inherited disease that causes the progressive breakdown of nerve cells in the brain. 

Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking and psychiatric disorders.

When I first met Olive, she was laying on her bed and her arms and legs constantly twitching and writhing. Her head swayed from left to right as her facial muscles pulled at her cheeks and she forcibly blinked. Olive would verbalise noises, seemingly without meaning. 

I mostly directed my questions towards Olive’s husband, Jim. I learned that Olive had been bed-bound for more than seven months due to an acute illness and a subsequent deterioration in mobility. 

Although she loved to be outside, Jim was concerned about her ability to sit up in a wheelchair for prolonged periods and about her compromised immune system.

Over the following six weeks, I recognised that Olive actually had well-maintained muscle strength and was able to follow my instructions very well. After this she progressed quite quickly from bed based exercises, to postural strengthening work, sit-to-stand practice and eventually to mobilising for more than 15 metres. 

Significantly for Olive and Jim, the progress gave them the ability to go for walks outside and to enjoy a meal sitting up at a table, among other things.

Strangely enough though, my worst assumptions weren’t made in relation to Olive’s physical capacity. 

Whilst I’m embarrassed to admit it, I initially presumed that Olive had a limited capacity to understand what was happening around her as well as a limited capacity to make decisions effecting her life and care. Boy, was I wrong.

We’re always taught as physios to ask our patients how they are experiencing or feeling about any intervention. It is part of the ongoing process of informed consent and it becomes second nature. 

So, whilst working with Olive I naturally began to ask questions such as ‘is this ok’ and ‘would you like to keep going’. To my surprise Olive would respond with ‘I do, I do, I do’ or ‘I am, I am, I am’. 

Slowly I began to realise that many of Olive’s idiosyncrasies of sound and language were actually words.  

From this point forward, it seemed necessary to explore Olive’s wants and desires. It provided a platform for Olive to make choices about what she would like to do in physiotherapy for that day. 

Of course, this is exactly what we should be doing with any resident. Unfortunately for Olive, this choice had been seemingly taken away from her for a significant amount of time due to people’s assumptions, including mine.

Initially, I grappled painfully with the knowledge that Olive had a very sound understanding of her predicament. And of course in part I still do. It seemed torturous that Olive could be trapped within a body and mind that was slowly deteriorating. 

Then about seven weeks into our new rehabilitation program I came in to ask Olive if she’d like to go for a walk and to head outside. Almost immediately, Olive began to smile and laugh. It wasn’t a small gentle laugh, but a cackle that made everyone else around feel uplifted. 

It was incredible to see someone who I once almost pitied be so vibrant, beautiful and full of life. Through patience, optimism, active listening and an innate desire I got to know Olive, and that’s exactly what I achieved. 

And it turns out she’s nothing like the person I assumed she was during my first visit eight weeks ago. I believe the journey that I’ve taken with Olive will stay with me forever, and I’m extremely thankful to her for taking me on that journey. 

*not their real names