A Little Less Managing. A Little More Living.
One of the wisest people I ever knew (he was 92 when we met) once said:
"Life is like a roll of toilet paper. The closer you get to the end, the faster it goes."
I laughed then.
I'm not laughing quite as much now.
Another trip around the sun is behind me—67 of them!—and, for a brief, glorious moment, I felt invincible.
I celebrated by taking a few solo bike detours on my way to work. Mt. Tam? Just a little bump in the road.
I politely ignored them.
To prove who was boss, I climbed San Geronimo Ridge right after.
Somewhere along the way my balance disappeared, and I sort of... gracefully... accidentally... dismounted my bicycle. It seemed odd, but I shrugged it off.
Two days later the mystery was solved.
A virus flattened me.
Two weeks of doing absolutely nothing
Two weeks.
Anyone who knows me knows this is almost unimaginable.
Being sick is one thing.
Being sick while caring for someone with a progressive disease is another.
I kept bargaining with my body.
"Okay, one day. Maybe two."
My body replied,
"Cute idea."
So I surrendered.
I became useless.
Cranky.
Impatient.
Rather pathetic.
The one bright spot? James never got sick.
That still feels like a small miracle.
Wimbledon needed a vacation
Just when I started crawling back into the land of the living, our cat Wimbledon disappeared.
For five days.
Five very long days.
James took it especially hard. One morning he quietly started crying, which turned into deep, heartbreaking sobs. Losing little pieces of normal life hurts more than we sometimes expect.
Then, on the exact day I returned to work...
...Wimbledon casually walked into the kitchen.
Well-fed.
Completely unbothered.
As if to say,
"What? I just needed a few days off."
Classic cat.
Becoming full-time case managers
Somehow we've become busier than ever.
Doctor.
Therapist.
Insurance.
Phone calls.
Appointments.
More appointments.
One dental "evaluation" lasted three hours.
I don't think dentists are used to treating someone with Lewy Body Dementia. James endured far more than I or he was comfortable with while I wandered outside trying to keep our entire life moving by phone.
When it was finally over, we learned the "evaluation" included a tooth extraction and a $1,700 bill.
Apparently James had agreed.
Where was I?
That's the hard part about Lewy Body Dementia.
James is still perfectly capable of making many decisions. But sometimes processing information, understanding consequences, or speaking up becomes much harder.
We're learning that I have to be more involved—not because I don't trust James, but because we're navigating a disease that changes the rules almost daily.
Choosing life over appointments
Lately it feels as though everyone has another treatment to suggest.
Another specialist.
Another therapy.
Another evaluation.
We appreciate every doctor who wants to help.
But somewhere along the way we realized we were spending more time managing illness than actually living.
So we've started saying "no."
Not to everything.
Just to enough things that we can still say "yes" to life.
Instead of another appointment, we'd rather sit together on a rock somewhere in nature.
That sounds like good medicine too.
This morning James wanted to skip physical therapy.
Normally I might have agreed.
But his stiffness and body pain have become so much worse that I gently insisted we go.
Sometimes love means saying yes.
Sometimes love means saying, "Nope—we're going."
Lewy keeps changing the rules
One of the hardest changes lately has been James losing more control over his bladder at night.
It's messy.
Embarrassing.
Humbling.
He's discouraged and sometimes exhausted by all the little indignities that come with this disease.
The medication against hallucinations helped for a while.
Then it helped less.
Then we accidentally ran out altogether.
Lewy doesn't stand still.
Neither do we.
The gift hiding inside all of this
As strange as it sounds...
James and I have become even closer.
His hallucinations are incredibly real to him.
But instead of hiding them, he now tells me about them.
He'll describe exactly what he sees and then quietly ask,
"Do you think that's really there?"
That kind of trust feels sacred.
We navigate his reality together.
Sometimes I enter his world.
Sometimes he lets me guide him back into mine.
My own medicine
One lesson from getting so sick...
Take care of yourself.
So I keep riding my bike.
And now...
I've discovered surfing.
I just laughed.
I needed that.
Beautiful.
Exhausting.
Heartbreaking.
Funny.
Sometimes all in the same afternoon.
Thank you for continuing to walk beside us.
Thank you for your kindness, your messages, your generosity, your encouragement, and for carrying us in your hearts.
Here's to keeping going.
To loving deeply.
To finding moments of joy.
To staying afloat—even when the waves get big.
With love,
James and Margit
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