The last few days I have been struggling with how much Matt sleeps

Most of my thought patterns were around “what must I be doing wrong”

Is he sleeping because I am robbing him from quality of life, should I be doing something different, what am I missing?

So I stopped that self flagellation for a bit and started a dialog with my buddy ChatGPT, who I will name Kathy, simply to use the “chatty Kathy” saying as inspiration for a nickname

I asked Kathy to dive deeper to find research on who someone with LBD would sleep so much

What I learned was interesting, confirming and affirming

His retreats to bed may well be more about hitting his limit of ability to process things, the world, stimulation

We all reach those points where it’s too much, I know I do, I know those close to me do too

With Matt’s situation these days, he just reaches that point a lot faster, much quicker, more frequently

Based on my conversations with Kathy, she pulled together some examples that helped make sense of this by thinking of his brain having a battery that runs it

Years ago, eating a hamburger cost 1% of the battery.

Now:

• figuring out the wrapper,
• identifying the ketchup,
• sequencing the meal,
• carrying on conversation,
• filtering restaurant noise…

…might consume 20% of the battery.

By the time dinner is over, he’s spent an enormous amount of mental energy on tasks that used to be automatic.

Add to that the process of getting dressed to go, walking through and out of the house, getting in the car, putting on his seat belt, visually processing the drive, then getting out of the car, choosing what to order, finding a table or the table I am at…..it all builds up to a lot brain battery use

Ha! It’s like the battery of my 8 year old iPhone X that I just upgraded because I was charging it multiple times a day

Unfortunately we can’t trade in our brains for new models…..yet

My learning here is important: rather than worrying about how much he is sleeping, my energy should be more focused on the times, the “islands” of time is awake, his brain battery has a decent charge to have an experience

Quality of life is filling those times with meaningful moments as best as I can

The other thing that was really affirming, good to hear was while the brains ability to process things in the environment is being impacted, his emotional control and response capacity hasn’t been affected much

He still can enjoy things, he still wants to hug me, tell me he loves me

He still from time to time says thank you for all I do for him

It’s important to put that in context, to realize the thing that isn’t lost

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