Uncle Lewy

Living out loud with Lewy Body Dementia

Our Angels

We are so so lucky, we have a family of angels, in heaven and here with us on earth

Matt woke up Monday morning and after Nora got here, got in a bit of a tangle with her

He was resisting his usual medicine routine, was refusing to let Nora put his patch on, Nora yelped as he held her hand too tight

I jumped up from my desk, came to where they were near the dining room table

Matt’s eyes were wide, pupils were constricted

“What’s going on?” I ask

“She’s trying to kill me”, he says

Clearly, he is having a delusion, a horrible delusion

Its been awhile since he’s had one of these in the morning, in reflection, it may have been triggered because I had a wonderful phone call with a life long dear friend earlier

He used to get all delusional when I had work calls at the Virginia house, Uncle Lewy would manufacture a set of circumstances that felt threatening to him

I reassured him that she wasn’t trying to kill him, he responds “so you are in on this too!”

I tried to reassure him, hug him, tell him I love him, we are just trying our best to care for him, he was struggling to believe

I asked him if he wanted to talk to anyone, he said Susan Barbour, his cousin

I reached out to her and she was available, so I sit here, now, listening to them have a conversation on speaker phone

She’s so so good with him, listening to him, reassuring him she understands how scary this must be, calmly talking about what’s happening and distracting him with other topics

What an angel she is!

Her suggestion is maybe he take a little nap, reset the stage so to speak, see how he is doing after that

She tried to compel him that its the disease that is causing him to think these scary thoughts, that he is one of the most loved people on this whole planet

It was wonderful listening to them talk, listening to her patiently try to guide him to a better place

After the call ended, Matt was nearby, I hugged him, told him how much I loved him, that he was safe

He was my person, wasn’t I his person? Yes, he said. We have to stick together, we are each other’s person

He was still reconciling all that was going on in his head, but he seemed better

He let me put the patch on, eventually

I’ll stay close by for a bit longer, wait for a signal that this has passed…….then I am going to set about my day, taking care of myself, taking the day of respite as designed

<–Back to Uncle Lewy

Leave a comment