Juggling and paddling through New York City

jugglingAs 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..

24 thoughts on “Juggling and paddling through New York City

  1. Hey ‘Action Barbie’ keep paddling Maria!!! as I know you will in spite of the difficulties that this trip has highlighted. Love and hugs to both of you and I hope there have been more good times than exasperating moments.


  2. I really appreciated your honesty Kate. Hope that attending the conference won’t be too hard for you. You’re such a go-getter ….. hope that you can put your feet uup a bit when at the conference. Big hug ❤


  3. Don’t push things my friend….Put on water wings and float a bit as well as paddling. Wish New York were closer to Vermont than it is. At least we get to meet via the internet. Keep remembering how well you are actually doing Kate! So many with ‘D’ are not out traveling, keeping up with blogs and working hard to make life better for those with ‘D’….You are ahead of of the game and don’t forget that 🙂 I send you love….VK


  4. Like you said Kate, one doesn’t always realise our shortcomings whilst in our own enviroment, once we’re removed from our safety, Mr Alz comes running ! Take care both of you xx


    • Yes, I get a shick every simgle time I go away! Such is life living with Mr Dementia! We are in San Juan now, and had breakfast with Gill Phillips and her husband Colin – who does exist, I have now met him!! Take care… xox


  5. Hey Kate, thinking of you two on holidays. Love the comment “looking after child with adult determination”
    a hug from me to you


  6. You are a brave soul Kate Swaffer. Honesty takes courage — and heart. Hugs to you during your time in NYC. Take it all in & be presence. And know, Mr. Dementia aside, as lovely as it is New York can be overwhelming for many of us! Peace & ease.


  7. You are providing such rich information to everyone who is associated with dementia. I am a professional and my job is supporting people with dementia and your blog is so honest and helpful to those of us who try to understand dementia


  8. Hi Kate, I sypmpathise with you, as we all struggle with this, but I think we tend to hide things where we can, until it gets to the stage where you have no option but to admit, things are starting to get worse.
    I struggle when travelling these days, but I fight this as much as I can, because like you I don’t want to give in.
    Take good care of yourself and enjoy your holiday while you can.


    • Hi Ken… yes, we need to hide things as much as possible, for our own dignity!! And we have to face up to things truthfully also… a hard ask for us all! We are enjoying the good bits, and trying to ignore the bad bits!!!


  9. Kate, you speak so truthfully. It makes what you say very powerful and takes a lot of courage. Everything you commit to print helps others. You’re a very special person. And I haven’t even met you! Well done – and keep paddling. And writing. xxx


    • Thanks dear Pippa… I feel like I know you too! And I’m glad my writing helps others. I sometimes feel awkward writing the reality of my and our world, but there is no point at all if I’m not honest… take care xox


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