A Day in the Life with Lewy

Some people imagine living with dementia means every day is the same — slow, foggy, confusing. But with Lewy Body Dementia, every day is a new negotiation between what I planned and what my brain and body will actually allow.

Here’s a glimpse into what that looks like for me right now.

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☀️ Mornings: Faith, Fog, and Finding My Feet

Opening my eyes in every day is always a revelation – I never know how it’s going to go! While rare mornings find me clear-headed, most days I wake foggy – sometimes very foggy.

I love sunny mornings, because I can open the blinds next to my bed and the sun streams in, often giving me a much-needed perk. 

 

An open window allows me to hear the birds when they start their day, and the spring brought the smell of the lilac bush right outside my window. 

 

Now the summer brings the smell of freshly cut grass, or in the evenings sometimes the unexpected skunk cameo! 

Many days it takes quite a bit of time for my brain to clear before prayer, which is deeply important to me. I start with the Liturgy of the Hours on my iPad and reflect in the Hallow app. These times of prayer in the morning have a profound effect on me – helping me center and prepare for the rest of my day.

 

Michele often brings me breakfast or a drink, depending on how functional I am. Then I get up, wash and get dressed. 

 

Just this small level of activity can be taxing on some days, as everything I do now requires conscious thought and planning – nothing is automatic anymore. 

 

I then try to do exercises (4–5 days a week if possible) and move into the rest of my day.

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🧠 Managing Energy and Focus

Lewy has forced me to need many things – but flexibility and adaptation are two of the ones I need the most right now. And sometimes those are the two things most lacking with this disease!

 

My day runs on a flexible structure — routines help, but Lewy makes them unpredictable.

Mid-mornings are usually my clearest time, and I use that window to write blog posts, prepare for advocacy meetings, or record videos.

Afternoons require a nap. Without it, I crash. Evenings are winding down: some quiet TV with Michele, evening prayers, and getting to bed early.

Light matters too — summer’s long days are much easier for me than winter’s dark ones. I have often wondered if spending some time in a sunny environment during the darkest winter months would be beneficial. 

And when I crash, I crash. I’ve had to learn to give myself grace and stop pushing through. I have come to appreciate that rest isn’t a failing, it’s a vital part of my progress. 

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🌫️ Hardest Moments

Even in the hardest moments, there is always the glimmer of hope that things are going to turn the corner and get better. 

Oddly, mornings — once my best time — are now my hardest. The fog can last hours. I used to be up-and-at-’em. Now, I have to wait for my mind to wake up.

Early afternoons are tricky too — by then, I’ve used up most of my energy, and naps aren’t optional anymore. Pushing through doesn’t work. I’ve had to learn to stop and recharge when I hit the wall, even if that means plans change or I can’t finish what I started.

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❤️ Small Joys, Big Meaning

Joy comes in little and big ways. 

 

Morning and evening prayers anchor me. Deepening my Catholic faith has brought a renewed peace. 

 

Hearing the bells intone the beginning and ending of prayer, listening to the Psalms and the hymns, and participating in the structure and beauty of the Liturgy of Hours has truly blessed my life in ways I had not thought possible at this point. 

My greatest joy? My family. Michelle and our two daughters are everything. Our grandson Theo is a light in our lives — playful, affectionate, pure joy.

We recently lost our little Shih Tzu, Pippin, after 14 years, and I still miss him dearly. The house feels empty without him, but his memory is everywhere. 

Music used to bring me a great deal of joy, but it’s now harder to process. Still, certain songs evoke sweet memories. I heard an 80’s song the other day by Steve Miller and was transported back to my high school days and made me think of the gang of friends I had (and still have!) and the times we had together. 

 

Creating brings me joy again — writing, blogging, and now exploring video. This blog started as a way for Theo to one day understand who I was — and still am — beyond Lewy. That purpose gives me meaning and keeps me moving forward.

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🔍 What People Don’t Always Understand

What surprises most people is how much my days can vary. I may look fine, sound sharp, but that can change in a heartbeat.
Bad days make even small tasks impossible. Sometimes plans get canceled. Sometimes I just can’t follow through.
And that’s hard — for me and for others. 

Lewy is unpredictable. But I’m learning to live with what each day brings, to forgive myself when things fall apart, and to find light in the middle of the fog.

 

Please leave me a comment below or on Facebook – I love to hear from you! What small ritual brings you light when your day feels foggy?