Early signs

I was inspired by Cynthia Malone’s journal Slammered to look back a bit.

I am calling our endeavors a literature of grief.

I couldn’t put Cindy’s moving account down until I finished reading.*

Grieving is a normal response to loss and so we grieve even before the final separation.

Caregiver Teleconnections offered excellent guidance for anticipatory grief in a recent seminar.

It is not only grief we are exploring in our blogs. We are looking for insight.

Sometimes, I feel I am also searching for forgiveness as I think Cindy Malone mentions in her account. [*For instance, I managed to ignore Burt while I was engrossed in Slammered.]

All right. So, what are these insights I seek.

One is when? How long has this been going on? What signs did I miss?

The pandemic provided focus and time together. It also made going for a diagnosis harder. Officially, Burt’s first neurologist regretted to inform me that it was DLB in October 2020. (I always reverse Dementia with Lewy Bodies to LBD.)

He had been listless for some time before that. From March, when I was home with him, he was confused. Before we could even get to an appointment, Burt was questioning who I was or wondering where I had gone. The latter while I stood by his side in the lobby or next to him as he called a trusted (and very patient) friend to ask if she had seen me.

He suffered benign hallucinations. My friend T asks “why are they always little people?”

Diagnosis was a necessity. For me.

Since he often was puzzled as to who I was, we had endless flirtatious encounters in which he recounted his life story.

I ask, “Why is that so exhausting?”

Nonstop talking is a thing with LBD. He mostly sounded lucid and happy to get better acquainted.

It took a while, but his excellent Nurse Practitioner convinced him to take Aricept. Burt, ever the contrarian, resisted. I said ok if it won’t cure the disease, so fine if he doesn’t want it….

Was I ever wrong! The “brain pill” made a huge difference. He was pleased because he felt sharper. The hallucinations decreased, although they had a less straightforward path. [I will talk about them anon in another post.] The losing me/where’s Tamara stopped.

So what did I miss? What were earlier signs I could have caught? More on that soon, too.