LEWY BODY DEMENTIA CLOSING THE WINDOW

Post 55 - Sunday May 18th, 2025

Every day is like a new day for a dementia sufferer. How cool is that. You start each day with no idea what is happening, with no idea what is going on in your life and you have no understanding of, well, basically no understanding of anything. There are many blank moments across any given day. The window of life slowly closes.

However, with dementia, one great advantage we have over everyone else is we meet new people every day. But with that said, sometimes I actually get deep and meaningful about the medical hand I have been dealt, and I wonder if it may be better to have Parkinsons than dementia, I mean, seriously, wouldn't it be better to spill half my beer than to forget where I left the darn thing? 

Sometime though, for me, I really hate this dementia journey, because to be honest, ok, well, to be honest, I can't remember why I hate it. And as an added thought, I wonder why I was diagnosed with 'early onset dementia', I mean, I am 70 years old, so it's hardly 'early' in life.

Yet on this Lewy Body Dementia journey, Ruth and I always do the best we can with the tough days. For as much as we have fun with how things progress, the flip side is the awkward times are sad and not so much fun. Life is tough at times and our focus on day-to-day living has most definitely had to change. Yeah, that life window closes with LBD,

We certainly don't travel as we once did, look, the days on the road are still fun, they always have been fun, always will be and we go to some great venues and have truly great adventures. But the fallout in staying focused and pain free when out and about or on the road takes an awkward toll. It's just simply hard yakka staying afloat. 

Recovery time after being active on these trips and outings can be tough, recovery is not something that happens quick, it is slow and tiring in itself. So, we tend to stay put thus minimising the awkwardness of long days away from Wendourie Lodge. Sad, really sad, but it's easier that way.

This LBD journey for me in terms of being physically and mentally available is starting to narrow, by that I mean the window of life is starting to close. Life is getting progressively tougher, and I do notice so many cognitive changes that are not easy to handle. Things are moving in an awkward direction for me, still slow in time but certainly noticeable and yeah, that window is closing. Bottom line is I know things are headed down hill and we all know this does not end well. And that day of reckoning draws closer and closer.

So, before this post gets too heavy, lets tell of the fun and meaningful story of our weekend away in Adelaide and country South Australia. Then we can look at how the recovery time went and the negative impact recovery has on living.

Last week Ruth and I had 5 days away, 5 days on the road and 5 days of full-on activity that was so much fun but oh so tiring. Look, it was a great trip, it really was. We did fit a lot into the few days, and I am so pleased we took the time and made the effort to head over to SA. The days away were tough physically and emotionally and the challenges were certainly there. But we did well with managing the time at the time and things ran rather smooth.

We travelled over 1600km on the round trip, went to a 70th birthday, had times out with friends in Adelaide, caught up with family on both sides and more, then even more friends and did Mother's Day with the Green and Hall families. Overall, we did so good, we managed it well.

This was a trip we had to take. Ruth's longtime friend Raija was celebrating her 70th birthday on Friday night at Seaford Meadows. The party was important to the girls and our trip was built around that celebration. And it was a great night.

We had travelled over to SA on Thursday and headed to Mick O'Shea's Motel at Hackham to spend three nights. Raija and another longtime friend Wendy met with us later in the evening and the party had begun. It was like three days of party time. We did good.

Spending time with different folk was fun, lunch at Mick O'Shea's pub on Friday for Ruth and I with Raija and Wendy was an adventure. Chat, fun and many laughs, so meaningful for the girls as they recalled times past.

This outing was super exciting, great company and the food, well, not bad, not flash but ok. And apparently, some things never change so while my memory is still mostly intact, I did recall my 'go to' eat out food was fish and chips and yep, I had a decent feed as a pub meal. Even had a beer to celebrate with Raija on her birthday.

The 70th birthday party was just a really good fun night of celebration. As party MC Ruth was at her best, she made things happen, she was the shining light for all who came to spend the time with Raija. A good mix of family and friends meant Raija had the best time, her daughter Annie was the perfect host, great food, plenty of drinks, the house was perfectly decorated and that helped the night be so successful. A most enjoyable party celebration.

It wasn't an overly late night as parties once were but at our age it was late enough. I mean, actually age does weary them, we are not the party animals we once were. But that's ok, the next day one wakes with a clear head as opposed to the day of party hangovers, fuzzy thinking and panadol. Mmmmmmm.

Saturday was a good time for the girls in the friendship group to have another day together, lunch, Op Shop time, chats, laughs and just sharing good company. These types of days make the heart sing, just the best. For me, I was under house arrest back at the motel, my movements in an unfamiliar surrounding were curtailed for my own safety, apparently, so it was footy and races on the computer. It was a good, relaxed and slower paced afternoon at the motel room. Ah, easy peezy, I can handle that.

I got to do this LBD journey during the best part of the Saturday as a solo traveler. And it came with some fun JonnyG moments. I mean, imagine this scenario if you will, looking for your phone while using the torch on the phone, so you can use the phone torch to help look for your lost glasses, that are actually on top of your head, so that you can then read the phone screen clearly. Bummer, I mean, if it wasn't so funny it would be serious. Mmmmmmmm.

So, the birthday celebration part of the weekend was over, we said our farewells to Raija and co and we hit the road. First stop was Hope Valley and a late Mother's Day morning tea and lunch with Ruth's mum Joyce.

Mums are so very special and for Ruth and Joyce the catch-up on this special day was extra meaningful. We ate, had lots of chat, some laughs and really enjoyed the time spent at the nursing home. Sadly, Joyce at 93 is struggling with her own health and ongoing issues, she is finding life tough. 

Then having the chance to head to Barmera for the night was important for me. Yeah, family time is always good and again this being Mother's Day made the Sunday afternoon visit to Barmera just perfect.

As a family we had the chance to go visit mum at her resting place and to spend some time there was ideal. And of course, Dad is with mum so that was an even better reason to show our respects to both parents as they were very special in our life. Happy Mother's Day Joan Winifred Green, great lady and very dear mum.

Sunday night in Barmera was another great part of this trip, pizza tea, family chat, laughs, footy, well we won't mention the footy, Cats mmmmmmmm but that result aside it was a good overnight stay. By Monday mid-morning it was time to be, as Willie Nelson would sing, 'On the road again' and for Ruth and I to head back to Ballarat.

As I write often here on my blog posts, our times on road trips are fun and always enjoyable even when the trips are long and we cover so many miles. Ruth has the driving duties but I get to help with making sure her time behind the wheel is fun and never dull. Our love for music and how that plays out is so important, it helps in so many ways as we listen, as we sing, laugh, sing some more and just take the piss out of what we are doing with each other and the music. Ok, maybe you actually have to be there to understand but gee, it's entertaining and it's a laugh a minute and we both enjoy the fun.

Now, on a sad note, we did have a stop in Loxton, for me this was important as I had the chance to spend some respectful moments at the local cemetery sitting with a couple of lads who very sadly lost their life in an accident back in November 1973. These brothers have in many ways travelled with me on my life journey and I have never ever forgotten them or what happened on that awful day. They may be gone but are definitely never forgotten, Graham and Richard, please be at rest. 

Back on the road our trip took us down through the SA mallee, Paruna, Pinarroo and then Bordertown. Next, we crossed the border back into Victoria which is, apparently our new home state and with a stopover at a favourite roadside stop near Dimboola for a stretch and fresh airtime moment. Yeah, lots of miles covered but we do this part pretty darn well.

A special memorable moment for us was heading through Stawell, it was just on dark and as luck would have it, this Monday night was a full moon. We stopped at traffic lights and wow, right there on the horizon was this perfect fully formed massive bright full moon heading up above the horizon, God's natural glory at it's very very best and we sat and marveled at this special moment in time. 

Ruth made an executive decision as we drove into Ararat, she took us to Green Hill Lake and out to Camp Recluse where we had spent 292 days living off grip before our February move to Ballarat.

And we went to look for Mumma Possum, she had been in our camp for the time we lived off grid and as an added highlight, she has stayed with us on both previous stays at Green Hill Lake. And bingo, after 10-minutes of calling her, there she was, in the tree and waiting for a feed. It had been 84 days since we left Camp Recluse but when Mumma came to visit on this night, well it was like time had stood still. She just loved to have a feed with us; we had missed you Mumma and it seems she had missed us. Ah, what a special moment in nature.

And with that, our trip had come to an end, we drove back to Wendourie Lodge in Ballarat to unload, settle in, have a coffee and finally to get some much-needed sleep. Yep, a tough yet eventful 5 days away, so many highlights from what was a fabulous time in SA. Well worth the effort, things had gone so well, we had an absolute ball in all we did.

Now, how to unpack this time physically and emotional. This is where things get touchy for me on this LBD journey. Older age means I am slowing down; I am no longer able to bounce back quickly when exhausted but with my cognitive impairment and physical health being as it is with pain and fluid problems then it means recovery time is really testing.

So once back the next couple of days were hard. Lots of rest, lots of sleep, I spent time just chilling and trying to repair particularly the mental exhaustion the trip had created. The first 24-hours back at Wendouree Lodge was lost, I stayed in bed for the great part of that period. Getting energy back took time, I was physically struggling and mentally I had that 5 days of putting myself out there and now things were rather mushy. I guess I hit the wall.

This is the part that is hard to manage psychologically. On one hand, trips like this are so good, out and about, fun, good times, great adventure versus the recovery time and the process needed to get things back on track. And that recovery happens away from the eyes of the world, what others see with the fun and adventures when out and about is a far cry from how time is needed to put things back together both physically and mentally.

Going through any period of recovery on this LBD journey is private and personal. It scares me, I am scared of how it messes with me on a personal level, I am scared to let that side of me going out for public view.

Because I reckon, for now, it is not something others need to see. In recovery mode with LBD life gets funny. At times I feel somewhat detached from reality and it can be hard to tune in and make sense of what is actually going down. It is a time of detachment, I mean, if someone threw a rock at me, I wouldn't know what hit me.

LBD brings many different life experiences to the table, so much of this centers on cognitive impairment and the challenges that surround this issue. It can be full on difficult being so darn messed in the head. It is complex. On the surface I guess it could be dismissed as simply the things I forget because in essence, they are likely not much more than any 70-year-old male experiences. I mean, we all have blank thought moments, senior moments, we all have moments of forgetting and being absent minded.

But, for me, I know sadly it is more than that and sometimes, emotionally, that is tough to grasp. As said, I do see things collapse cognitively before my very eyes.

Writing this post has had difficult moments. I know I do not have to explain myself and this LBD journey to anyhow, it is personal, and I understand that nobody asks me to share things with them in a negative way. Writing here explaining my recovery times after having times like the recent road trip and fun moments has been hard.

It gets to the point where I feel I am trying to justify how I can have such fun moments if I am in fact losing this LBD battle. It is somewhat of a contradiction I guess if you are the one looking in from the outside.

Again, I know I don't have to explain or justify anything, but for that said, as I write this, I do feel that need. Now, I have to own that, this is about me, not about anyone asking questions but in my fragile mental state that is not so black and white. I live this LBD cognitive decline issue so I know, I see it unfold in my head, and I guess others on the outside must look at me differently. By different I mean, they see the good and fun times but naturally don't see how the fallout impacts on life quality.

Well, that ends another JonnyG Remembers blog post, while things continue to change and remain challenging, it is so darn good for me to use my writing smarts as therapy and continue to record my LBD journey. Despite the challenges that present, I do feel blessed, very blessed and as always, thanks to everyone who reads my blog posts, I do appreciate. And I leave you all with this little thought ...

In the early days of investigating this LBD journey, I would Google symptons and links to this illness, but somehow, for some reason all the links would already be purple ...

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The road to trip last weekend was centered on the 70th birthday for Raija ... she and Ruth has been mates for around 30 years and it was important to be at this party, and it went so well ... Raija, originally from Finland, had never had a birthday party and the theme for the 70th was a 'kid's party' ... the girls had such a great night, as did all who attended ... Ruth as MC was outstanding, she helped make the party such a success, brilliant job MC RC Hall, and the games she helped organise and run, they were such a hit ... everything was perfect, great night with really happy, fun people ...

And with the Sunday being Mother's Day then that added extra significance to the time in Adelaide and country SA ... first stop Hope Valley in Adelaide's east to have morning tea with Joyce Hall, Ruth's mum, it was a good visit, Joyce and Ruth had a productive chat and catch-up time ... then on to Barmera and a visit with my family to the Barmera Cemetary to show respect to my Mum Joan, it was so good to share this special time on the day we appreciate all mum's, Joan sadly passed in 2012 ...

Random pics from the trip but each has a story to tell ... we spent many hours on the road, Ruth has to do the driving these days, but she does a great job, we had our usual fun times and shared many laughs ... road trips are our thing ... time with my sister Jan and her family in Barmera was special to me, Barmera being my home town ... we had a full moon to guide us home on Monday evening, coming back into Victoria was well, like returning to our adopted state, sort of anyhow, and generally the 5 day trip was just a great time away ...

And at the back end of the road trip we had the chance to swing by Green Hill Lake in Ararat, the timing was perfect, just after 7pm and Ruth and I went to the Camp Recluse site to see if our possum family was around ... and bingo, our favourite possum from all our four stays at the lake was there for a feed, Mumma came to see us ... that was super special, she came when I called her, took maybe 10-minutes but there she was, it was such a good time to share some food with Mumma' ...