‘Going with the flow’
– there is no ‘right way
I never thought he ‘wasn’t there’ – that was just him now.
Meg helped care for Charlie for the last 9 months of his life. He was 88 years old and had been diagnosed five years before with Alzheimer’s. She had her first experience of dementia and aged care when spending time with her Nanna, before she passed away. Meg was studying youth work and had completed a degree in Anthropology – so it helped that she loved to explore how people and cultures make and find meaning through their lives, from their varied experiences.
I began to help to care for Charlie at the start of 2018. You could say that I had a bit of a baptism of fire. I spent only a few hours with Charlie and his wife to get to know some of the routines and quirks of being with Charlie and then I spent 5 full days with him.
At that point Charlie was super mobile and in the following week he took me on many-houred walks around (and sometimes out of) his suburb. Looking back, I think he might have been trying to find his wife and escape me because this unknown woman was forcing her presence on him!
As we walked, I would try and get Charlie to turn around, he’d go, ‘nah you can go that way’ motioning with his hand and would continue on his way. I tried warning him as we got up to each corner, saying that we’d be turning left ‘up there’. This strategy worked once or twice, but I was still this random woman following him and so he went back to his classic, ‘nah you can go that way, but I’m going this way’. As he got more tired, he’d walk faster, I’d try to get him into a taxi or an uber, but again, I could get in but he ‘was all good’. A couple of times I was rescued by Charlie’s wife or a friend a few kilometres away from the house.
I was a bit stressed walking along with Charlie, trying to get him to head back home. I was stressed because I was unsure how long we would go for, how tired Charlie was getting and whether he’d be able to make it back home. However, once I felt like I had a feasible plan in place – calling the taxi, calling his wife to be picked up, I felt better, and could just walk with Charlie in a pretty enjoyable fashion. When I was unsure, however, it was a constant trying and experimenting different ways of negotiation to see whether he might be ready to head home.
This seemed to be a theme in my care for Charlie. Charlie might not be keen to do something one minute, but if I left it for a few minutes he may have liked the idea.
Often there was a process of checking and thinking, ok now he might be fine, to take his medication, or eat some breakfast or come back inside. It seemed to be a constant flow of potentially strategic plans and thoughts.
I now wonder whether I was too worried that he wouldn’t get enough food, that he would get a cold if he stayed outside, that he would get a heart attack if he kept walking. I also think some of these worries originated in my care for what others may’ve thought about how I was caring for Charlie, I was aware that they might be judging me.
I wonder whether I should’ve just left him be and gone with the flow more. The thing was, without realising it, he did put himself in danger sometimes – he would cross roads without looking. It was obvious that he did want to get somewhere, but not obvious to me where that was.
As Charlie got less mobile, one thing I really enjoyed was getting to just sit beside him and relax. I love long train rides – I love not having to do anything else, because I’m doing all that I can, there is purpose in the sitting there and waiting for my destination – there is nothing I can do to speed it up.
Although, it was easy to get caught up in the tasks that I had to do for Charlie and the house, I think I had the same kind of ‘train’ experience when I got to sit with Charlie. It was relaxing for me and I have a sense or assume that Charlie enjoyed it too, it felt like there was purpose in spending this type off time with Charlie.
I also loved how Charlie and I had little moments of communication. He had a great sense of humour and some classic facial expressions – which I often would mimic and exaggerate, and we’d have a ‘conversation’ with the different facial expressions.
One thing I found interesting was to know how to communicate to others to not be self-conscious around Charlie when they were communicating with him. In many respects it was a one-sided conversation. In a conversation between two people without dementia it would be awkward if there was seeminlgy only one person participating in the talking. I think this awkwardness was transferred when others would try to ‘chat’ with Charlie.
There were great times where people did recognise his confusion. A few times Charlie was convinced that he had to go into a shop or that he had an appointment. I had shop assistants pretend along with him and me, saying things like ‘oh yes, your appointment is tomorrow’ or they helped to lead Charlie out as they reassured him. And so we would slowly manage to move through the shopping centre or along the road.
I don’t think I ever thought Charlie ‘wasn’t there’, though I did not know him before he had advanced dementia, I just acknowledged that this was him ‘now’.
One of the big things I took away from the experience of helping to care for Charlie, was the idea that there was not necessarily a ‘right way’ to do so, instead it was a constant process of ‘going with the flow’.