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.

Delicious Ambiquity

The antidote to much anguish is sheer connectedness.

People are terrified by what they cannot understand, but meaning and hope are most easily found in the company of others.

“Having permission to NOT find a solution has helped me enjoy the time I spend with my mom—just as she is and who she is now. It’s liberating.”

When you live with someone with dementia, your existence is not an issue of rational thinking but of being able to see some wonder and delight in your relationship. When you see good moments—perhaps even delicious moments—you are no longer captive to the terror.

Selected quotes from chapter 8 of “Loving Someone Who Has Dementia” by Pauline Boss, PhD

I pick up this book and digest a page, a paragraph, a chapter at a time.

There is so much here in these fractional excerpts

Apparently, Gilda Radner, one of my favorite SNL players used “delicious ambiquity” in her book “It’s Always Something”:

Now I’ve learned, the hard way, that some poems don’t rhyme, some stories don’t have a clear beginning, middle and end…Like my life, this book is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.

Perhaps application of this is so much broader than dementia, general aging too

We may think they want to do as much as they used to, but maybe not

Permission to let time flow by, like sand thru your fingers, might be just the thing

Overthinking might be a bad fit, distracting

Just being there, smiling, drinking in the moment….together

Reading words like these makes me feel more student like, less like a victim

That is a welcome feeling.

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