Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

sista

Mary and I try to talk every weekend

Since 2021, its 2025 now

It doesn’t always work out

We are in different time zones now

We used to be in the same time zone

Then she moved to England

So we were 5 hours apart

I moved to California

So we are now 8 hours apart

So what?

We used to talk both in the morning

Now, its my morning, her afternoon

It means so much, these calls

We talk about anything, everything

Encourage

Challenge

Share

Express

Dispair

Reclaim

Nothing is out of bounds

To be loved by a friend like this

To be heard

To hear, listen

This is life

My eyes water up writing this

There is so much love flowing from my heart as I express what this is for me

My words are inadequate

The love I feel is so great

Today is her last day of an incredible career

Spanning all the continents, seriously

She has been everywhere

Many days of stress, frustration, many days of running with the big dogs, involved in headline things

Even when she is trying to call someone in the White House or working to get something done for a household name celebrity

She is still my friend, grounded, special, very special to me

Helping her plan her special retirement party has been a very very lovely distraction from my day to day

Being happy, joyful, excited for her lifts me from this place

It’s a ladder up from a pit of dispair, reminding me there is a lot of life yet to live

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