Looking ahead I see another 10 day stretch of living my days between 4 am and 10 am, at least any outdoor things., which is ok but it definitely further isolates me. Somehow I am learning to embrace the isolation which is so far from how I lived in my pre dementia life. This morning I woke to a lovely email, from someone, thanking me for writing my blogs, one of my recent blogs really resonated for her. It did my heart good to know that in some small way by opening myself up and being vulnerable and real it can make a difference for someone. It is not always an easy thing to do, often people take issue with people who do just that, but I have learnt that for those people the issue around it has little to do with me and a whole lot to do with them. But when people reach out and share bits of themselves it is such an honour to read or hear their words, unbelievably humbling, and I am for ever grateful for they keep me humble, grounded in why I do what I do. It was a truly beautiful start to the day. Another nice start to the day an early phone call, followed by another phone chat in the afternoon. So all those things help ease the isolation. Getting busy working on upcoming events and conferences are another thing that really helps and looking forward to meeting more people I have only ever met on line at meetings and working groups, support groups. Making plans with someone for a lovely outing in Sept when the weather affords me more outdoor time, with a friend whom I haven’t had opportunity to spend time with for quite some time. These things are immeasurable in the value and quality they keep in my life. Isolation has made the effects of loss of my sister more intensified for myself. so without those other events it would be too much to bear. I think about all those people who didn’t have the ability to stay connected through various channels, and what that increased isolation during and since the pandemic has meant for them.
I just realized as I was going to type something how much more Difficulty I am having spelling, I want to spell a word but trying to recall how or what that word looks like fails me, I very often have to use Siri to get words for me, I know the word but cannot figure out how to write it….changes, more changes, it’s been happening more and more frequently, oh well, just like losing days and hours, you learn to do what we here in dementia land call “ work arounds”, so more work arounds coming up, fascinating to me that our brains take away so many things but somehow teach us other ways to manage. The brain truly is a remarkable thing and even though it may be faulty in some various ways for many of us, it is still brilliant and fascinating, in all its brokenness.
Wednesday is my day with my specialist at the hospital, so don’t know if that will result in any other changes, but I have great trust in him so will see what’s next, feeling deeply grateful for the care I receive given the crisis in health care these days. I am deeply appreciative of all the effort that goes into helping me stay well enough to continue to be on my own, I am sure if I didn’t also put in the work that situation could likely be very different.
I have forgotten what my original thought for writing today was, so I will just say that not everyday is bad, not are all good, some are downright horrible, but learning to laugh at ourselves, cry when we need to be dementiafried when that’s all we’ve got ( a term coined by my dear friend Dallas Dixon) and know that it’s all ok.