KNOCK KNOCK - WHO'S THERE?
Post 65 - August 1st, 2026
Going from having a memory like the one I was fortunate to be given across my life to now living with this cognitive void of Lewy Body Dementia is to say the least, rather disappointing. Yeah, disappointing in many ways, and a struggle, an epic struggle having so many blank moments in everyday life. Moments of nothing, just a nothing blank. That creates an emptiness which just sits there, sits and reminds me about this LBD journey.
The disappointment is not a poor me thing, definitely not but rather it is a realisation in understanding about what is lost. Cognitive decline in this form is difficult to adjust to. Life in general teaches you to accept that over time your memory falters, you become forgetful. 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.
However, 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 getting bad, total moments of that nothing I mention, trying to form a thought in my head is not something I can always manage. And I am talking thoughts not memories, not names, not places, not events but thoughts. 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 emptiness, I stare, I guess I am searching in my mind, but I come up blank. It is not until later that you understand what just really happened.
I might be halfway through a conversation, halfway through writing a blog post or a message to someone or an email and I not only forget what I was going to say, I forget forget, I cannot form a thought. Just like that my mind is blank, there is nothing at all. It is not forgetting something, it is having nothing as a thought and being lost in my own mind.
This is new with the LBD. Throughout life I have always had a muddled mindset, a mind that races with many jumbled thoughts at the same time, in that scenario it is about making sense of those thoughts, trying to put a finger on a particular thought as things race through the mind, and I have managed to do that. I guess it is a form of ADHD. I would wish at times over life for my mind to slow down but as the years rolled on, I accepted this was how things went for me and with a somewhat gifted mind comes some pitfalls.
But this issue is not the same. 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, just a blank mind. 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 slow 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 times overwhelming.
Because in my case when I am trying to form a thought, trying to gain an 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 dramatic, a touch wrong because at times I can still get my cognitive thinking to work well. I can still participate in life. The downside in these better cognitive moments is that it requires so much concentration and focus, but I can get there ok, the end result can be satisfying. Meaning it is probably worth all the effort. Conversations and social interactions are still possible; I can still 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 inward anger within that very same frustration. Thankfully most of the time I can laugh it off, downplay the awkward moment, but I can feel the frustration bubbling away.
God gave me an incredibly smart and clever mind, He really did but as I have written before that was not necessarily a good thing, with the clever mind came those 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 and the one I badly miss.
Now, I guess I still have the 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, how about that, because 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. Who would have thought hey???
Even did the local Ballarat Council secondhand shop, come junk shop, come scrap junk place, at the local tip. And surprising to me, but apparently 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 socially 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 happy with the outing.
Physically the times like the Geelong trip and the op shop days are a test, again plans and strategies are so important and Ruth knows my physical limits so times like this are managed meaning lots of fun. For me, emotionally, they are super important, and we make so many fun moments during and after these times. Keeping the fun is a key to survival it seems and thankfully we laugh often as we navigate through and play out these LBD moments.
So 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 Remembers 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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