There is actually a name for what your loved one with dementia is going through when s/he first denies the diagnosis.
It’s not denial but something like a not knowing. My sincere hope at that point was that Burt would know, that he would understand.
If he accepted the dementia, we could work together on his care and treatment, I thought. If he knew, he could accept some of the decisions I made for him, I thought. I don’t know what I was thinking.
Burt was very appreciative when his neurologist showed him a computer screen on Dr. Lewy’s findings. This interesting new information made him feel included. But included in what?
Eventually, Burt went through a phase in which he acknowledged he had dementia. I winced every time he shared “do you know what that is? It’s a brain disease.”
He said it matter of factly and flatly, with no affect. And I think it made him sad; I know it made me sad. Early on he’d had some sway in introducing a new med into his regimen. It had nothing to do with his understanding of the nature of his illness. It was simply presented as something that would prove helpful.
Donepezil was. Burt liked that it made him feel clearer. I credit it with giving him a better quality of life. Less confusion, fewer wives [usually], more clarity. The hallucinations, mostly benign, also cleared out.
The hallucination story requires a digression but is well worth it: I have chronicled Burt’s plunge into Lewy. He started with mild confusion and apathy, but that was just to get a running start. The Capgras was extreme [hence the multiple and multiplying wives]. He misplaced me often and would have to call up our dear friend S to locate me; she’d say I think I hear her standing next to you. We often had to walk around the hall to come to our real apartment.
There were little people living there with us, apparently. Lots of them, and they were using our electricity. This was annoying to Burt.
We had moved into a studio apartment when we came into the building. Burt’s displaced chronology was urging me to find an extra bedroom for us. His circadian clock was awack and I was awakened at 3am because… time was one of the realities he’d lost. Our doorman helped me find a one bedroom that would soon be available.
I worried his hallucinations would bother him in the new space. Burt was on it. He told me that he’d gone into our studio; sat the whole lot of them down and told them we were moving and they weren’t welcome in our new apartment.
He was so proud of himself. And honestly, I was so proud of him. Some years later, after he told the neurologist, no, I never had hallucinations, I chose to tell him about the little people. Burt was fascinated, then he said “I knew you wouldn’t put up with anyone in our house like that.”
Hallucinations joined him again towards the end. Burt spoke with someone or ..ones in the ceiling fixture those last months. They were company. His aide and I were loathe to interrupt these conversations, not that we could. It was more likely that Burt would turn from speaking with me to address an imaginary friend at that point.
Let’s get back to the days he knew he had Lewy Body Dementia. The worst part of that was that he knew. Burt understood that he had a brain disease and that the brain controlled everything. He sort of knew but only in the way that was scary and sad. He said the doctors knew nothing and could do nothing. In other words, he couldn’t process anything from the knowledge. It didn’t help him make decisions or choices; he had lost that capacity.
Burt was stuck with bad news. It was one more area over which he had no agency. It was sad, his knowing. It served no purpose. When he forgot that he had dementia, it was a huge relief.
