MOTHER AND SON

Post 31 - Thursday October 5th 2023

When my dear Mum was struggling with some issue around Alzheimer's in her latter years, I would think it was rather sweet when she made a gaff or got that lost look about her. And I suppose it was sort of funny how this person who had been a rock-solid constant in your life was now this somewhat dithery old lady who looked to be off with the Fairies.

I know that will sound harsh, it has truth of course but to counter that, I also believe we went on the journey with Mum by trying to involve and embrace her with comfort and humor during the sad yet funny moments.

Mum, Joan Winifred Green, lived 90 years and 14 days and when she passed in August 2012 it was a huge loss to the Green family.

Look, she was just the best Mum, and it was such a blessing to have her across all the years. Mum went home to be with God in the best way possible, she had not been physically ill at all other than showing some of the old age signs that take hold at that time of life. In the end Mum became sick on a Thursday morning and by late Saturday night she was gone. She died of old age.

As a family it was a tough time of course but we all had the chance to be at her bedside in the Barmera Hospital and every family member did get the chance to be with her in the last hours. We all got to say goodbye to this dear lady in our own way and while Mum was in a coma over the last 48-hours we all live on with the comforting thought that she knew she had her loving family with her until that last breath.

What was sad about Mum and her ending was this cognitive issue that took hold in the last few years of her long life. Mum was mostly ok; she had her memory of sorts, and she was able to live out this time at home. The issues in her mind were awkward for her but she was always one who took life as it came and had this remarkable ability to laugh at herself, so she played the game when things got odd.

Mum handled the time as best you can, and I know we as a family embraced this time and helped her stay level. But sure, we did take the piss out of her, however we did our best to help while laughing with her when things went pear shaped at times. It was an interesting time for her and the family.

I think if we could ask Mum what that time was like, she would just smile and say it was a fun ride.

If I could have the time over again then I do believe I could have been better in having an understanding of what Mum might have been feeling. It is easy to say now that she was ok with everything, but I would like to have had the understanding to be more on her side with how she really felt, how things really were for her.

But I know we tried at the time. For me, I did the best I knew how to do, not sure that is right, but it is all I had to offer. I do wonder though if I could have been better in knowing how Mum would have liked me to be when the mind was failing her. Mum never complained, she was still fun to be around, and she was still my Mum.

Now, as we know I am on my own journey with Lewy Body Dementia, and I can honestly say being on this side of the illness gives me such a different insight. I embrace my journey in my own way and do what I believe is best for me and those who care.

But I see how others do or do not embrace my cognitive issues. This is not a poor John thing, far from it, it is simply me expressing how I see people embrace what my life is now about. I seek no sympathy; I am very happy in my own little world be that somewhat confusing at times.

With the many who do interreact with my journey I thank you and I am glad you are all there on my side. Please know how dear you all are.

But, here I go now dumping, because being on this side of the cognitive battle then I see how different people treat those who are are battling with the mind.

This week I had another hospital stay following bladder surgery on Tuesday. That came with the usual awkwardness of pain and discomfort, that hideous catheter inserted for 24-hours meaning my doodle was attacked and forced to endure many things it was not designed to do. Yeah, lots of man pain and lots of blood.

The teams at Flinders do a great job medically, I was well cared for in the main and the skill of the urologists is not lost on me.

But when this LBD is a factor then things are different. Everyone in a medical capacity and on the hospital wards will say they understand what the journey means for me but sadly, very sadly very few can actually then help. They do not really embrace what is happening.

I am sure they try, I am sure they all think they are doing what is best.

Times are hard in the SA health system, I get that, staff shortages, bed shortages, workers stressed and workers trying to make the best of shitty situations. They are under loads of internal pressure with their job so when a 68 year-old nutter comes on the ward, well they are often not in the best head space to deal with the fall-out. Well, that is how it seems.

But for me with my head confusion that is just darn difficult. I see the dedication of the staff, that is never questioned, they all do their very best. But for most of the staff they simply do not understand this LBD journey. They are not cruel nor unkind, they simply don't understand. As soon as things go off track with my head issue and I struggle then the staff lose their way.

On Tuesday afternoon back on ward 6C things were ok, I had pain relief, I had a coffee and a sanga' that was so appreciated after the long fast for surgery. Look all the peripheral things were good.

But the empathy and understanding were missing. Some of the staff, sad to say, believe they know what is best for people in my position, but reality is they do not.

As the evening went on and Ruth was told to leave the ward it was just a bloody long night of confusion. Once the staff were left to doing this their way, the wheels fell off. I was really put in my place and all the understanding the ward staff said they had, they didn't.

Once the lights went off, I was told to just sleep, and it would be better for me. Well, the pain alone and that awkward catheter attached to the tubes from the fluid bags and the drain bag meant that was not going to happen.

If I tried to stand out by the bed because it helped the pain, the staff insisted I get back on the bed, no help just demands, the more I asked for help, well, you can guess how that went down.

And it seems I had the chats with myself in the night and that upset the nurses because they thought I had someone in the room. They had no understanding of what was going on in my head. I do talk to myself at times when I am lost in confusion and that is not something I can control.

And when I asked for Ruth, the nurse simply said, “Who is Ruth, I do not know what you are talking about” and she walked off. Blah, blah, blah.

Ok, that is painting a bad scenario but what I take from this is the LBD is not understood nor accepted as being this major issue around behavior of the patient. The staff, it seems, believed they knew how to handle this situation but no way, they were coming from the wrong side of this. Disappointing.

Look, I have enough memory of the night to recall the things I did. But I also know that off in the distance of my mind I was lost and distressed in what was happening for me. It was really ordinary because I do recall some of the tough moments, some moments I guess I don't recall but I am still well enough with my cognitive problems to know generally what is happening. For the most part.

The nurses still needed to do their hourly obs on me, blood pressure, heart rate etc so I did see plenty of them. No need to sleep it seemed when they needed my attention. And this was by far the worst situation I have faced in Flinders. Since January I have had four surgery and ward stays so I have been in this position a few times recently.

I do not try to be difficult, but in confusion then I am sure I am difficult.

And for the record, back to Ruth for a moment, I will add, she slept in the car in the Flinders Medical Centre carpark so as to be close if needed. And then she was back on the ward by 7am. Dedication.

But the lack of understanding around my confusion was crap. It showed very little to me and it most definitely disrespected Ruth because staff actually knew what the situation was. They knew how this night may play out. Sadly, again, what is said to us in the daylight hours is not necessarily what happens in the night hours.

Now, on to a slightly different track and thought. This time around with surgery the team took a cutting from my bladder about the size of a 20-cent coin and once analyzed then I will know my fate. I will know what happens next with the bladder cancer and what options I may or may not have.

One of the things I have been told is that if the tumor has grown into my bladder wall muscle, then an option would be having the bladder removed and live with a bag. Now, I am sure that many have had that scenario and carry on in life by making the best of the awkwardness.

What I am stressing about here is that with my LBD and a bag to pee into and out of, then I would not physically or mentally cope. I can only imagine the mess I would get myself into, it would be very tough, very embarrassing.

This will really test my resolve; I will really need to rally my inner strengths and get on top of this. Maybe it won't come to that, maybe the pathology results on my bladder sample will be ok and I am being a stress junkie for nothing. Obviously, time will tell.

But if this plays out bad, then I wish with all my heart that I didn't have years to go in this journey. Hey, I do not have a death wish but I also know I definitely do not like how this journey is progressing in my mind. It is not an easy time. Please don't take this as a cry for help, it is not, but it is a genuine thought.

Maybe if I could just drift off into the oblivion of dementia then things would be better. Because I do know this does not end well. How to manage the time in getting to that stage is a daily battle, my mind can be all over the place and gives little rest.

Hey, I often talk here on my blog about the fun times, seriously they are all great, I really do love the fun and laughs this LBD journey gives. But sometimes I don't love them because I know where this is headed. Again, this is just me unloading, it is not any sort of cry for help.

I do wonder if it would be best to let the LBD take hold and move quick so as I get to that stage where I have no idea what is going on.

The Flinders experience from this week has not helped, it has sort of blown my mind apart. I do, rightly or wrongly, believe that talk is easy yet positive and meaningful helpful actions for some are not possible. That is what I take from my time at Flinders. Some do not really understand what happens in the mind of the confused. How could they?

Wow, that was difficult to get out. I am sure it was a long read, a bit jumbled to read and difficult to follow. So many threads and I went off on different tracks. Started with my Mum and her journey and progressed to my battle earlier this week at Flinders.

Ok, then, now, let's try to get this finished up. Let's try to tie it all together.

So, Mum, I do wish I had taken the time to go about getting a better understanding of what you may have actually wanted from me and not just what I thought you wanted when you went through your journey. I do know you were ok, you lived strong until the very end and never once gave any indication that your struggle was overly difficult.

But I do wonder how I could have helped understand you better and ease you through that time. Going through my own LBD journey certainly gives me a much better understanding of how the world looks from this side of the illness. Not just how the world looks, but how that same world then looks at someone with dementia.

One thing I have not forgotten is the footy, it seems that Brisbane did not win the AFL Premiership … what a tough week for a footy tragic having to go into a total news and social media footy blackout … but, just 160+ days to go until the opening bounce in season 2024, the Cats will be back …

Now, how do you finish this difficult post with a JonnyG funny? … mmmmmmmmm, let's see, ok, how about this one …

When I was being booked into Flinders the other morning for surgery the lady at the desk asked, “Who should we notify in case of emergency” and I thought, what silly question so I replied, “Probably the team in the emergency room” ...

A couple of extra pics with Mum ... the top pics are not very often seen, they are special for me and show my Mum at different ages in her life ... and of course pics of Mum and my boys, with Bradley James back in our Vasey Street days at Barmera and with Mitchell and Jacob at the Green Family home 132 Nookamka Terrace in Barmera ...