Here’s what happened. First, Burt seemed listless. That was unusual for him. I was out at the gym a lot and he was at home a lot.

He had fallen and cut his cheek badly a year earlier. He had had a bout with never-explained double vision. That was a couple of years before. And on one day in an incident we laughed off, also a few years prior, he got lost as he emerged from Central Park.

Listless and lonely as he was, it seemed that Burt was still okay. True but then came the pandemic and I was home with him. Now, I noticed odd behaviors. He was our tv guy and one day he could not figure out how to use the FIOS interchange. I had stepped out to a store (masked of course). He had been on the phone with a very patient tech the whole hour I was out. He was still listless and lonely although I was at home with him.

Not so long after these behaviors started rolling along, they took on a stranger turn. Burt couldn’t find me although I was standing next to him. On occasion, I had to go look for myself. Sometimes he would call our friend S so she could tell him that she thinks she heard my voice over the phone. “Tamara’s at home with you,” she would say. My being missing and never there was often a theme over the next nearly five years. That makes me sad for him.

He started imagining small people in our kitchen. They annoyed him because they were free-loading. Their use of our electricity was his peculiar and particular concern. The hallucinations were an annoyance but not a threat to Burt.

He developed an extreme case of Capgras, which means in his case that he had alternative wives. 13 by my count. Technically, Capgras is imposter syndrome, but Burt accepted each of his Tamaras (all of us shared the name) at face value. I only realized that it worried him when he asked our lawyer if he was in danger of arrest for bigamy. Burt met each new Tamara, probably because of my preceived absence, asking me who I was as I served lunch. I blamed myself for introducing him to so many women named Tamara, although I didn’t tell him  to flirt or get married.

The diagnosis was sidelined by a suspicion that Burt had multiple myeloma. We tested for that first. Then we had idiotic diagnoses of his cognitive impairment like his then primary suggesting it was anxiety. “Burt’s always been anxious,” was the excuse. Our friend M. suspected LBD. We switched primary care doctors. №2 offered schizophrenia on the grounds that it was treatable and Lewy Body was not.

Finally, we had an appointment with a well-respected neurologist at Mt. Sinai. Burt resisted going for fear the doctor would operate on his brain. Several calls to clarify followed including one with a helpful Alzheimer’s Association 24-hour hotline operator. We saw the doctor, whom Burt did not like, and his Nurse Practitioner, whom he adored.

Lewy brought forth the flirt in Burt and he continued a path of flirtatious exchanges with health care providers almost to the end.

Meds were miracles for us. donepezil, [aricept] a drug which had been developed for Alzheimer’s, was more effective for LBD. It was.

After some resistance, Burt let the medication serve him. He reported that it made him feel clearer.

Initially, I had decided if he didn’t want to pop a pill, and if it wasn’t going to cure his dementia, it was up to him. We were so glad to have donepezil help us.

We weren’t so lucky with seroquel. It was introduced to combat aggression and agitation. In this phase, it made Burt sleepy but he was still aggressive. It was easier for me to get out of the way because the seroquel slowed him down but we stopped using it except as a sleep aid.

He “outgrew” the aggressive stage which was our good fortune. Not everyone with Lewy does. It’s also true that not everyone with Lewy gets combative.

Eventually, he also outgrew the medications. Donepezil wasn’t working for him during the final slide. Last December, we took him off it. We had cutback on blood pressure pills as orthostatic hypotension seemed to kick in. He basically no longer had the  high blood pressure that had always plagued him

In the meantime, we had three maybe three and a half years in which Burt was diminished but functioning. He’d had a fall after I got Covid and was sure he had it too. A long stint in rehab followed. Incontinence was a 50- 50 proposition after that, but he could walk with his Neuro UStep Walker.

He was social. He enjoyed his PT and OT. He chose to hang out in our lobby so he could see the neighbors.

There were little losses and declines but we were chugging along. Sleep, a problem from early on when he felt 3a.m. and 3p.m. were silly constructs, became an issue again. We tweaked it until he mostly got enough sleep.

At the end, even before the last 4 days, he was sleeping a lot. There was a big decline from mid October and then a little more. And he was bedbound. And those last four days he didn’t eat because he just slept. He was  breathing hard and each intake was loud.

He didn’t hold our hands as he used to in that strong grip.He was reaching with his hands for the way out, searching.

I am so relieved for him that he found it. Our short/long journey ended with peace. He passed with dignity.

He gave me the privilege of caring for him. I learned how much I loved him through this journey. I might have learned that anyway and I wish I could have learned it any other way.

Nonetheless, I am grateful to have been there with him. All the years before. All the time during. And now.