KNOCK KNOCK - WHO'S THERE?
Post 65 - August 1st, 2026
With a memory like the one I was fortunate to have across my life and now living with this cognitive void of Lewy Body Dementia is to say the least, rather disappointing. Yeah, disappointing and it is a struggle, an epic struggle to have so many blank moments in everyday life, moments of just plain blank, a nothing blank. That creates an emptiness which just sits there. The disappointment is not a poor me thing, definitely not but rather it is a realisation in understanding what is lost.
Cognitive decline in this form is difficult to adjust to. Life teaches you to accept that over time your memory falters, you forget things sometimes and that is mostly ok, especially in older age, it sort of goes with the territory. It is annoying but fact.
But having no idea what you forgot and why you forgot it is something totally different. Because if my thinking allows me to understand I have forgotten something, why does it not allow me to remember what it is I have forgotten?
And with my decline in LBD the blanks are bad, total moments of nothing, trying to form a thought in my head is not something I can always manage. And I am talking thoughts not memories. From the inside it is like staring at a blank wall, not literally but that is the concept, I see and understand nothing. I just cannot form a thought that has any meaning at all. I sit, or stand and have nothing, I know I am searching in my mind, but I come up blank. It is not until later that you understand what just really happened.
With a muddled mindset, a mind with jumbled thoughts, that can be about making sense of those thoughts, trying to put a finger on a particular thought as things race through the mind, but this issue is not like that. This cognitive void is a nothing, I can try as hard as I like but I get nothing in my head, no thoughts at all, there is nothing. And that is both awkward and scary, really scary. Oh, and very frustrating.
It is no wonder people with dementia get frustrated, like angry frustrated. My decline has been gradual, and I am very thankful for that process. I understand there are differing forms of dementia and different levels of cognitive decline within each form of dementia but the frustration this blank void creates is at time overwhelming.
Because in my case when I am trying to form a thought, trying to gain and understanding of what I am thinking, but come up with nothing, it gets overwhelming. And knowing about having nothing in thought is the frustrating bit, it is darn awkward. If not at the time it definitely is as you sit and ponder what just transpired in your mind.
Sadly, for me personally, I am at the point where frustration is something I experience across many of the thought moments I have. How sad and how crap that is, really crap to be honest but my reality is that this is the new me, and I am frustrated with that. Lay down and cry type frustrated, it is depressing and really testing in every way possible.
The smarts in my clever brain has all but gone, well, that's a touch wrong because at times I can still get my cognitive thinking to work well. The downside at this time is it requires so much concentration and focus, but I get there ok, the end result is satisfying. Meaning it is probably worth all the effort. Conversations and social interreacting are possible; I can do good. But when I go off track, oh boy then I have lost the ability to correct the waywardness my mind dishes up. Hence the frustration and dare I say, the anger within that frustration.
I don't mean this in any way other than how it is. God gave me an incredibly smart and clever mind, He really did. As I have written before that was not necessarily a good thing, with the clever mind came pitfalls, came awkward personality traits and yeah over the years, I definitely got lots wrong. But a sharp, clever super intelligent mind is the one I had.
Now, I guess I still have same mind, but, so much is missing, so much of the cognitive smarts have gone out the window. I am struggling, not just in this LBD void but with knowing I have lost my intelligence, lost my ability to just be smart and that hurts. Sadly, seeing it unfold is no fun, it is depressing on many levels, because we all know this ends bad.
Earlier last week we had a day op shopping, yeah, anyone who knows me will tell you I do NOT do the op shop rounds, it has just never been my thing. Love the op shop concept but it has never been for me. However, at the moment I am looking for certain items to help with my off grid living and as it happens, op shops are a great place to source items on my list.
Even did the local Ballarat Council secondhand come junk shop at the tip, and surprising to me, but not to others, I actually scored some bargains there including a collection of used plastic garden pots, some bits and pieces for my camp garden and a solid cast iron hot plate that will get good use over the campfire at the lake. Total cost for all items, seven bucks, now that is what I'm talkin' bout.
And I came home delighted with the day, yep, as said, scored some bargains and social I managed reasonably well. I was able to limit face to face contact to what I was comfortable with. Again, Ruth was my logistics guide and allowing for a couple of misplaced incidents I know I did ok. Came back to the unit with the goods and my mind was happy with the outing.
Guess the good days are still the good days and that is a massive blessing. Ok, that's it for now, I have some more thoughts added to my JonnyG Remember Blog, that is another blessing. Writing this blog as therapy is as good as it can get for me, I love writing and the record of my LBD journey is here for all to see. Positives all round.
So, I am going now, but I leave you with a JonnyG funny, well a JonnyG knock knock type funny, hope you get a laugh or at least get to smile, I know I did ...
Who's there
Spell
Spell who
WHO
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LIFE AS IT UNFOLDS LIVING WITH LBD
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