The increasing load of living with a person with the symptoms of dementia on the BUB (back up brain or carer).
The experience of travelling is becoming more difficult, especially for my BUB. He remains on red-alert as my distress levels and confusion go up due to the crowds, the noise and the lack of my usual routine. Traffic is also a problem as I am prone to ‘taking off’, not always realising the complexity of the traffic situation. We’ve called it Dementia red-alert!!
When I’m travelling I am less rational, more on edge, more likely to stop paddling because I am too tired to work out how or what to do.
The other challenge when we travel is my dear husband is more exposed to my daily struggles, and the worry lines and furrows on his forehead become permanently set. During our usual weeks at home, he works 5 days a week, and our weekends are relaxed and quiet most of the time, which keeps him away from seeing the symptoms of dementia in full flight.
When he more stressed and anxious, his mood makes me worse.
The effect of his very understandable stress level on me is not something we have worked how to manage yet, as it is a very difficult time for both of us. For now, I can still see his side of the coin.
Is it progressing, or are we imaging it? We don’t think so, and the struggle of paddling has become very tiring. Sometimes I even give up, as the energy required to work out how to has gone. My brain and body shut down, sometimes with not even any lights on inside. It is certainly unnerving, and worrying and our fears for our future are more tangible. More real, making us more acutely aware of the dreams we are losing.