As our time in New York comes to an end, we have discovered a few new things about living with dementia. Whilst I have managed to post two blogs since being away, and a few photos onto Facebook, they do not tell the true story, and in some ways have been a cover up for what is really happening, as we’ve been trying to ignore some of the changes. The denial bubble is not working, and so I decided it is time to fess up here, and tell the truth of how our travels are going.
Firstly, this trip has highlighted the deterioration, which sitting home in my small cocoon like life, does not show up as clearly. Spending most of my time at home, and more often than not alone as my husband works, it is not easy for him to see how much I struggle, and in many ways, not easy for me to see it either. When things get tough at home, I usually just lay down and rest for a while to ease the pressure of paddling. Here, it is not easy to do that as getting back to a hotel quickly is no easy feat, and the effect of the noise and traffic is sometimes overwhelming. Pete said yesterday, “I can now see how much you must struggle at home while I’m at work all day.” On top of Mr Dementia, my other health issues have also played up more than usual, making walking extremely difficult, and therefore our ability to play tourist rather challenging.
We have also learned there is a lot more to managing the symptoms of dementia than me paddling furiously below the surface, like a duck or swan, who appears calm on the surface. It is a major juggling act for us both, every waking hour. Don’t get me wrong, we are having a good time and both love New York, and enjoying this trip as much as possible, but the strain of travelling with Mr Dementia is showing on both of us. My darling husband has made every effort to make sure we do things together, and even spoilt me with a helicopter ride yesterday, something I’d not done before, and was lucky enough to sit in the cock-pit with the pilot. But below the surface, or hiding behind our seemingly happy holiday snapshots, is a lot of very strained paddling by me, and a large amount of juggling by both of us to manage our time on holidays without things like me getting lost or run over..