The Carnival Ride of Dementia...

I called my mom the other day, we were chatting as we usually do each day.  About mid-conversation, I heard what could only be described as carnival sounds in the background of her home.  At first, I thought, no it must be a passing ice cream truck or some such thing...but it was like 8 am.  

I inquired...”Mom, what is that sound?”

She laughed.  “It is the alarm on your dad’s bed monitor...he just got up then he went back to bed...”

“His bed alarm sounds like a carnival??”

“Yes, there are other alarm sounds but I selected this one..”she replied.

Now, I found this odd.  I mean, who in their right mind CHOOSES to listen to carnival music, ever?

This was made even more bizarre because my mom is not a carnival person...not even when she was younger.

But the more I thought about it, the more I was convinced that a carnival sounding bed alarm to signal your loved one (who is not in their right mind) has left the confines of their bed and is now either headed for the bathroom or parts unknown, is pretty apropos.

Dementia is a carnival ride.  The tenor and pace of the disease not unlike the meth addled carnies who labor in speed induced mania to put death defying rides together as quickly as possible.

Sundowning not unlike the nodding off of those same carnies as they come down due to the complete and total boredom of watching happy families with children board their rides, with the ever spiraling carnival music tapping out an insane tempo in their minds all day, every day for weeks on end.

The agitation, the despair, the perverse thrill of it all.  Never knowing what the day is going to bring.  Is your loved one going to be in a bad mood, combative, angry, volatile, or will today be a docile day with little engagement from them, their world far removed from ours?

One never fucking knows...

So my initial bracing at the carnival music coming from the background of my mother’s phone, morphs into something else...a universal joke, God’s attempt at humor in a situation that remains unfolding and less fun or funny every day?

A taunting reminder that dementia is quite the carnival ride for all it impacts.  The loved ones who are left to sort through the remains and remnants of the demented’s abstract and fractured mind.  How exactly does one make sense of sentences like this?

“I have to move the people!  Askhadklhg;afdhf, right?”

Or while at dinner, asking with a completely straight face while gesturing towards the aisle between the table and the wall, and referring to it as a submarine with all the confidence of someone who just won the Boston Marathon.  There is no knowledge, no acknowledgement that the word is even wrong, and there is absolutely no way to discern what was actually intended.  Instead, you are left to decipher what remains, which most of the time is completely, totally undecipherable.

Dementia is a carnival ride for those afflicted.  Moved through the various and sundry connections and synapses of their minds without rhyme or reason.  Movement towards an end that seems all too close and so far off at the same time.  The frustration of still being with it enough to know that things are off but being too far gone to communicate anything particularly effectively.

And dementia is a carnival ride for the loved ones who watch in daily horror as their loved ones falls deeper and deeper into the confines of their own minds.  They are right there, you can touch them, hug them and talk endlessly to them but they cannot hear you, or perhaps, maybe they can hear some of what you say. But their ability to respond intelligently or even intentionally is severly afflicted.

My own mind wanders to the manufacturer of the bed alarm.  Whose idea was it to put a carnival tune as an option?  Clearly someone who has watched a loved one succumb...because no one else would ever think that a carny tune would be a good fit to awaken anyone in the middle of the night.

I think of my mom who was awakened sometimes eight times in an evening by that carnival sound.  The theme music for a life that she never wanted but now has to live every single day with him, caring for him, while be slips further and further into a world in which we have no means of accessing.

Dementia is a carnival ride...to be clear.  Except I know of no one who would willingly buy a ticket.  Dementia is a side show that would remain horribly unattended if offered in some sort of midway novelty or freak show.  No one with any kind of knowledge about the disease would ever dare cross the path, let alone pay money for a ticket.  

I guess it is a good thing for all of us that dementia seems to be a wild card, a ill timed and placed lottery ticket that bestows upon the afflicted a slow procession from their own lives, while the loved ones stand by in increasing levels of caretaking, watching their own lives not so slowly erode into nothingness, until all they do, all day and all night is care for the person who is quite clearly out of their mind.

It isn’t fun.  Or funny.  It is hard, excruciatingly painful and wretched.  For all involved.

It has been called the long goodbye and that I can attest is very true.  It is a new kind of pain to be required to say good bye to tiny bits and pieces of your loved one everyday while also saying good bye to large chunks of your own life and vitality, stamina and wherewithal.

Yes, dementia is like a carnival ride, death defying drops followed by long periods of feeling stalled out, knowing there is no real forward progress to a place you would ever want to go.  It is kind of like standing in line at the ferris wheel and watching bolts rain down upon you, knowing that the ride isn’t safe, but knowing that you have very few choices other than to board the ride and let it take you where it will.

Yesterday it took us all to a memory care facility for my dad.  His needs and care reaching beyond what my mom could provide.  It is a nice place.  He is safe and comfortable and cared for.  But he is not going to get better and the level of care for him is only going to increase, bleeding out my mom with every passing day as she endeavors to care for someone who is quite literally less and less able to care for himself on a daily basis.

It was a sad day.  I think we all feel emotionally overwrought.  We will never be sure what he thinks or what he knows. His ability to communicate with any thread of sense long being surpassed in the foregoing months.  It was a hard decision.  It was a brutal reality.  And it was a hard truth.

No one wanted this particular carnival ride...but here we are, again, still...doing our best to live in congruence with the spiritual principles we aligned ourselves with...and doing our level best to practice those principles in all of our affairs...even the carnival ride of dementia...