Lewy, Dewey and me

A blog on our experiences with Lewy Body Dementia and how we navigate this difficult disease.

His Voice Still Sings in My Memory’s Ear

What spurred me on was a voice in my head:“Get outside. Do something,” rather harshly, I thought.But yes. Go outside. Clean the spot in the corner.Where Jupiter’s Beard hangs over the curb. I pulled the last of the weeds and roses.The sun shot beams between the clouds and hills,Darkening them even as the colors dancedIn…

October 19, 2023

Still, I Await Instructions

It was a year ago that my sweetie entered into hospice care. His decline had been steady since late 2021, but in January of 2022 the slide became steeper. He was weaker, the hallucinations were more frequent and more severe. He would wake up many times a night, insisting that he was expected to “go…

February 28, 2023February 28, 2023

The Story Continues

The unreal reality of my first Christmas without my sweet Dewey is behind me, while the vast expanse of a new year – the first full one – as his widow stretches before me. It’s hard to know where to look. As the trauma and grief ease ever so slightly I realize there is so…

December 27, 2022

Put the Best of the Worst on First, My Friend

That line is from a song written by John Hartford – a nonsensical patter song with a driving rhythm. These early days of grief are a lot like that; words and thoughts and emotions tumble and roll, often making no sense, yet driving one on. Snatches of sentences punctuated the dark like lightning, both comforting…

May 19, 2022May 19, 2022

Loading…

Something went wrong. Please refresh the page and/or try again.

About Me

My name is Sandra. I care for my husband, who was diagnosed with Lewy Body Dementia and Atypical Parkinsonism in January of 2018. We walk the Lewy Road together.

This blog is an attempt to share some of our experiences dealing with this truly frightening disease. I have done some reading, but have no expertise in this area. Therefore, I do not offer advice, only what we’ve encountered, and how we manage them. It is and will continue to be messy, frustrating, sweet, tender, heartbreaking, funny; all the things that life is.

I’m pretty open and honest. What I am not is religious. Not even spiritual, really. One of the reasons I decided to start writing these experiences is because I need a space to share that isn’t dominated by the prayer circles and calls for divine intervention that seem inevitably to flood most online fora I’ve seen. But please, don’t let that bother you. I understand we all have different needs, and those things are important – vital – to a lot of people who are dealing with similar difficulties. Just not me. And I profoundly acknowledge the positive energy that wafts from the hearts and minds of compassionate and caring people of all faiths and non-faiths. As an old friend once said, it’s in the air.

I also swear sometimes. Okay, a lot. Please accept that. It is part of my self-care. Really.

My hope is that this blog be a help to those who are also caring for a loved one with LBD. At least may it offer a bit of insight into what someone with LBD – and those who care for them – endures.

Empathy is powerful.

About Mr. Dewey

Mr. Dewey is probably the sweetest person anyone knows. Everyone who meets him adores him and instantly sees his sweet, gentle, kind, generous nature. We are lucky Lewy has not seen fit to change that fundamental sweetness.

So far.

It could happen, and that is my greatest fear, really, through all of this. It would be an unbearable heartbreak, indeed.

Mr. Dewey has been my husband, companion, friend, sweetie pie, for more than 30 years. He is smart, funny, disciplined, determined, introverted.

He is also afraid.

So we walk together, hand in hand, looking for joy where we can.

LBD is robbing my Sweetie of his past and his future. It is my mission that it not rob him – us – entirely of Now.

About LBD

Here are some resources I’ve found helpful:

Lewy Body Dementia Association

Alzheimer’s Tennessee, Inc.

Mayo Clinic