DOCTOR DOCTOR GIVE ME THE NEWS 

Post 8 - February 12th 2023

Hospitals are enough to make you sick

My journey down this Lewy Body Dementia path has been really tested this past 15 days.

Surgery on January 27^th to repair a medical problem in my tummy at Flinders Medical Centre seemed to go well. Operation done, sent home. For a few days recovery went to plan but slowly the pain and discomfort became unmanageable.

Fast forward to Monday last week and our local GP decided I needed to head to Emergency at Flinders and on admission that evening it was further decided my original surgery had failed and was now acutely infected. So, Tuesday night about 8pm I was wheeled off to theatre for corrective surgery.

Sadly, things like this happen. Medically this is not the norm but it does happen.

Meaning for me, lots of pain, lots of discomfort, lots of stitches and staples and even tubes and bags inserted to drain the muck from the surgical wound.

Really though, the fallout over the days has impacted most on what this did to me in terms of cognitive confusion.

Medically what happened happened. That is all good. But the problems this past 15 days has raised with my LBD journey has been significant.

For Ruth and I it has totally tested our resolve and ability to navigate through tough moments. To have 15 days of doctors and nurses poking and prodding, being so sore and unwell was difficult.

And the pills, so many bloody pills.

But as said, away from the medical issues it was tough navigating the different wards, the different clinical understandings, the hospital food, the lack of sleep, the times of cognitive confusion.

Staying of sound mind was tough. Being lost and confused made the time for me rather unsettling.

But, not only was I under enormous pressure to cope, Ruth also had to navigate her own path trying to protect me and keep me safe and at the same time keeping herself in a frame of mind that allowed her to be present and relevant.

For the most part the Flinders staff were understanding and helpful but yeah, every now and then the ego driven clinicians failed to listen and understand what was happening with confusion. Things would get awkward. They couldn't or didn't understand.

It seemed like Ruth and I had to plan each movement within the hospital and try to convince the staff to accept that planning. Having to deal with staff on different wards and theatres and intellectual levels really did come with complications.

For me, being safe in my mind was paramount, I had to at least feel that I knew what was happening and what I was doing. For Ruth, she worked on remaining close at hand to help guide me through different procedures and medical understandings.

On one occasion Ruth had to leave the hospital for the night and after making sure I was comfortable and settled around 11pm, she went and slept in the car at Flinders so as to be close on hand if I got in trouble and to make sure she could be back on the ward by 7am next morning.

Knowing that I was in familiar company and feeling at least half cognitively calm was so darn important and Ruth was a key player in this understanding. Pain and discomfort aside the head space was my major priority. To lose control of the mind in this setting would have been catastrophic.

At times we did feel lost moving between GP clinics, Flinders, even had a day at Victor Harbour Hospital. Both Ruth and I had to remain on the front foot to be able to encourage the clinicians and hospital staff to stay on our page with limiting the times of cognitive confusion.

Being unwell and battling this infection always meant things would be baffling. The mind is affected by the body pain and all the medication being pumped in just takes the confusion to a different level.

Yeah, it was awkward getting through this time and in particular the last days of hospital admission.

So, on this Sunday morning as I write this post it seems that we have finally been able to exit somewhat from the awkward times.

I was able to sleep 12-hours last night with just the old age men toilet trips but after 14 nights of struggle through pain and discomfort, it was a blessing.

I mean, last night, not once was I asked my name and date of birth, not once was I woken at some ungodly hour for obs like on the hospital wards, not once was I asked to rate my pain score out of 10 with 10 being the highest and not once was I asked to stare down that horrible hospital food.

Being home and after a decent sleep it is no wonder my appetite looks to be returning this morning. Toast, Vegemite and coffee, so darn good.

And the understanding for me from this couple of tough weeks is about knowing I learned some different strategies to be used going forward. This LBD journey will at some stage get unmanageable but for now coping in the minute is how it will play out.

The journey is testing but still unwritten. Making time for laughs and time for new adventures will remain my aim.

See you all next week. Thanks for checking in. Go Cats 

But now, today, for a touch of funny I will leave you with this classic.

A man goes to visit his doctor and says, “Doctor, I think my hearing is a bit off”. The Doc said, “Can you describe the symptoms?” … the man says, “That's easy, Marge has blue hair and Homer is bald and fat”.