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.

Language of love

There is a poem, hand written, faded ink, in a frame:

A Poem to Matthew

He’s just a guy who can’t say no

No matter what you ask

Will you do this? can you do that?

To him its not a task

He does it with good humor

He doe it with aplomb

He always sys “hey, no pain”

Even if its dumb

Now he’s no goody-two-shoes

Say that and he would faint

He does, at times, sport a halo

But after all, he is named after a saint

So here’s to Matthew, tried and true

For all the special things you do

For all the times, you seem to know

Jus when we really need you so

We think this was penned by Barbara Slattery, his aunt

Oldest of the 4 sisters

Matt’s language of love was serving others

We all know that

Now, he can only dream of being able to help others like he used to

It saddens my heart in a deep dark place that he isn’t able to fully express his language of love the way he used to

With all that we have had going on to move, settle in here, sell the Virginia house, etc. the effort of getting things done has been my focus

Some times, crazy making focus

But as things settle down, as we say goodbye to the Virginia house

Maybe things will become less intense

Maybe we can find a way he can continue to express his language of love using the tools he has today

Without worrying about all the tools he used to have

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