The doctor gives it a name, they tell you Lewy Body Dementia is the diagnosis

They give you pills with a long name and send you home

He uses some big fancy medical words that can’t land in your brain while your head is spinning

They say “come back in 6 months”. They don’t even say “good luck”

Each time you visit the doc, its 30 minutes of check the gait, check reflexes, see you in 6 months.

I have to come up with all the questions

Sometimes they add a new prescription, sometimes increase a dose

But they leave you to really have to figure this out on your own.

They are just dispensers of medication, not interested in helping you live between visits

Our doc, while not giving us much advise about how to live with the day to day, has done us right

His prescriptions have been well tolerated by Matt and have had a positive effect.

We visited him a couple weeks ago

Matt always says he is fine, not giving the doc anything to work with much

I explained evenings were rough: disorientation, pacing, confusion

Doc said Sundowners, which I accepted at face value

We got a new “as needed” RX

But then I thought about it, after we were back home

Sundowners, like its name, happens, well, as the sun goes down

This degradation of being was happening around 3 or 4 pm, the sun goes down around 8 pm these days

I wondered, is this happening because his meds are wearing off?

Maybe an 8 hour cycle would be better than a 12 hour cycle

So I message the doc, can we go to 3 times daily with him meds?

He said yes, I was amazed

So I gave Matt a 2nd does around 3pm yesterday

The most amazing thing happened!

I actually had a wonderful date night with my husband!

For the first time in …… years it seems…..its been so long

I feel like we now have a new lease on life!

There is so much you have to figure out on your own

I am go glad I asked and it worked out this time.