I have learned many things doing the Camino. Perhaps the most significant thing that I have learned is the importance of good communication and the problems that can arise from the lack of it. I know that I’m not good at it even though many think I am.
My experiences on the Camino have also reinforced my belief that many people know very little about dementia apart from the fact that they think that a diagnosis of dementia means memory loss.
My dementia is caused by my brain’s inability to process effectively information which may come from various sources, particularly visual and auditory modes. This leads to difficulty with decision making, problem solving, and confusion. Skills that are required every day to function effectively at home and in the wider community.
It was these skills that were tested during the Camino, particularly during the cycling stage of the journey from Pamplona to Astorga, when I was becoming more physically and cognitively tired. I made some poor decisions then.
My cycling and walking companions have no knowledge nor any understanding about the way these cognitive deficiencies would have on me on a daily basis, and the more exhausted that I get, then the more confused I become.
This happened one night when I was asked by a travelling companion to simply order a table for 10. I couldn’t speak, I became agitated and confused. I was frightened.
Please realise that they still helped me each day, with other things that I found too hard, eg I know how to change a tyre, but I can’t do it! They were always there to help with this. And helping me turn on the shower in many Hotels. Plus other things that I can’t remember.
My difficulties were starting to happen earlier, even some days at breakfast time, as there was a buildup factor starting to impact on my ability to think.
Also even at home, at night my brain is fatigued which can led to confusion and lack of ability to undertake simple cognitive tasks. But at home I can rest during the day but not on the Camino, with this regime.
I really don’t always want to talk about all of the problems that I experience, but given my advocacy about it and my awareness mission, for this Camino example, others didn’t see it or want to hear about it.
But I was struggling with so many aspects of daily management that I haven’t experienced before, and I wanted them to know to support me by not asking more than I could offer.
The lesson I have learned is that I need to get out there more and educate members of the community the sorts of things that can present major challenges for those people living with dementia. Or at least my Dementia because I’m the expert on that, not what they think it only means.