A (nameless, please) caregiver posted this recently and gave me permission to use it in our blog. Since the holidays often bring out the worst in Lewy, this might be a good time for all of you out there in Lewy Land to remember that you aren't alone:
I've been of late thinking this dreadful feeling I always have is familiar. Is it from childhood? Some event I've forgotten? A repressed memory? I was in all the big and small earthquakes in Los Angeles and actually worked in disaster response for several years. It hit me a while ago. That's the feeling. Living with Lewy, at least this last year, is like waiting for an earthquake.
When will it hit? Stop? What kind of damage will it do? I can't prepare. So everything has to be left to chance. Nothing planned. Something as simple as thinking I better do laundry tomorrow. But tomorrow comes and there's a 6.5 on the Lewy Scale in the form of a major emotional upheaval. 10 hours. All time and energy has to be focused on containing the situation. You know the drill. Laundry out of the question. Recycle the towels and wear the same PJs for a third night.
I invited people over for dinner this week. Don't I ever learn? Thinking I'll be able to clean AND cook is practically taunting Lewy. Sending him an engraved invitation. And right on time, here comes another one and it's a big one. The wolves are outside. He hates everybody including me. The dogs told him I tried to hurt them. Why is the moon out instead of the sun? Can you see thru me? Look at this. What's that? Where's my wife? If I try to put salt out this winter, that's it. He's out of here.
So instead of slicing and dicing, it's soothing and placating. Instead of hearing praises for my signature smothered short ribs and 5 cheese mac & cheese, its pitying looks when I put out the paper plates, pizza and a side salad. No dessert. No clean cups for coffee. Out of cream anyway. They already think I've let myself go. Gained 30 lbs., don't get my hair, nails done anymore. If I tried to explain life with Lewy they'd think I'M insane.
I say a prayer that this earthquake subsides and some part of the visit can be salvaged. That he doesn't start trying to menace and intimidate the people he always loved most and would protect with his life had Lewy not possessed him like some evil spirit. He doesn't. He stays quiet. They leave. He says, "That was fun. How come people don't come over like they used to?" Gotta love him. Gotta be thankful he's oblivious to most of it and forgets quickly. LBD should have a subtitle: "Waiting for the Big One."
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.