I have heard of ‘Sundowning’ … a worsening of dementia symptoms in the evening. But only recently have I read about ‘Showtime’ and LBD.
I began to wonder what was going on when I would head out into the world and things would seem fairly ‘normal’ only to crash and sleep for hours when I then returned home. One, it seemed terribly unfair to Ede. I would head off to help a friend – sometimes for the entire day – and then when I got home I would fall asleep on the couch, at the table … or would allow myself to crawl into bed. It was a fatigue I had not experienced before. My head was simply too heavy to hold up. I could relate to those pictures of kids falling asleep with their face in their bowl of macaroni! Two, I began to feel a real urge to ‘get out’ … ‘do something’ … Not in a positive way. It was a scramble … a real fear that IF I sat down, or dared to read something in the daytime, or watched a tv show, or sat at my desk … I would simply lose focus … and then desperately need to sleep. I found myself pacing – or shaking my legs – or tapping my feet – anything to keep moving – anything to stave off the feeling of my energy swirling down the drain.
WHY was I able to spend a great day at our family reunion – laughing and talking and soaking in the familiar faces and voices – only to then have to sleep three hours when we got back to the cottage? WHY was I able to be one of the girls kayaking and sunning and chatting and goofing around for a Sunday and then sleep from Monday afternoon at four right through to Tuesday at five? A twenty hour ‘snooze’?
WHY was I able to smooth my speech and muscle movements with strangers but then crack into stuttering, slurred shaky weak kneed me when with dear friends or my sister(s)? WHY did I sometimes sound so perfectly fine at one doctors appointment and was a confused, bleary eyed nincompoop the next?
‘Showtime’! Showtime can last a few hours or even a day or two. Early on in LBD some may experience much longer periods of improved cognition. Some research suggests it may be an adrenaline kick that gets the brain working in a higher gear. One theory suggests that as certain areas of the brain die the brain re-routes nerve responses to work around the non-functioning area. This re-routing can help the brain adjust for days, weeks or even months. But eventually the ongoing destruction means there are fewer options for re-routing and the ‘showtime’ periods become fewer and last for shorter periods of time.
This ‘Fluctuating Cognition’ is unique to Lewy Body Dementia. Other dementias present with a steady decline. Personally I was finding this aspect very confusing. For the first few years I would hit periods where I concluded, ‘Phew! Glad THAT is gone!’ and then become quite depressed when the confusion and lack of focus and real troubles thinking and planning started to creep up again.
Now I know to relish those gifts of returning brain power. I pull out my keyboard and play as long as I can. I get my calendar out and plan – deliberately – to keep going on my ‘joyful’ projects (Art Journal, writing blog posts for my future self and family, drawing, playing ukulele, kayaking, arranging walks on the beach). It is a little like a surprise ‘vacation’ that I pack with adventures.
Accepting these waves of improved cognition and then dips back into slowed thinking and rest days can be a challenge. I’m sure it is not only for me. I’m very fortunate to have a loving wife who is willing to have those tough conversations. I’m grateful to know that our current approach of welcoming the ups and resting at home together through the lows works for both of us. I need to keep space for her concerns when I ‘overdo’ it. Sometimes I do that consciously and deliberately. There are certain ‘expenditures’ I feel are worth the cost of the hours of recovery sleep and days of rest to build up more brain power. There are also times that I am oblivious to my ‘rally time’. It is only when I hit the wall that I realize my brain has a ‘score to settle’ with me.
Then I retreat to my daily routine. I am getting a little better at this. After lunch (whether I eat or not) I hit a wall between one and two in the afternoon. A sleep of two or three hours gives me a recharge that will last again until around eight or nine. This wall is a phenomenon that even makes reading, talking, listening, or sitting upright impossible. I love to read – especially before bed. I can feel the approach of my finish line. A rising tide of brain cells turning off … as real as a giant wave heading for me on a beach … It will take me down even mid-sentence. Trying to push further makes me feel ill. Green faced and sweaty needing only to close my eyes and stop … any … more … thinking.
I’ll pop this into my Lewy Body Tool chest:
* carbidopa levodopa to keep my muscles moving
* sleep when I need to – which is often
* enjoy ‘showtime’ when it appears!
* plan for repair time when the curtain falls
Here are a few links for further information. Or Google ‘Showtime and LBD’. There is a growing body of research out there.
Lewy Warriors – https://lewywarriors.wordpress.com/2016/02/22/its-showtime/
Lewy Body Life Podcasts – https://podcasts.apple.com/us/podcast/when-outsiders-think-youre-the-problem-its-showtime/id1673164226?i=1000777241150
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