Over the next nine days he experienced two cycles where we really thought he’d lost his mind. He saw people all night long, some who shook him and screamed at him. They told him they were going to kill him or one of his children if he didn’t shut up.

In his mind my brother had been the assailant that night, threatening with the knife. We were called terrible names, insulted many times during one phase. I thought the insults hurled at me were quite funny, actually. This wasn’t my father. He may have thought I was a dumbass from time to time, but he rarely showed anger with me. This was a man trying to escape a delusion. My brother felt sorry for him, sitting in a chair in the hospital with his arms tied to the chair, and loosened the restraints; he ran out the door.

This was my father after losing the ability to process his world. He descended into a cycle that continues to this day, with varying cycle lengths.

Baseline

Can watch TV, recognize your relation to him, but he may use the wrong word in a sentence (aphasia). Can recall many memories that are correct, but time sense is way off. Each day is new, but he can recall topics from a prior encounter. Forgets if you’ve visited in the last 48 hours.

This phase can last for up to a week or more.

Agitation

When he seems to be zoning he’ll become angry. He might tell you he’s told you that already, but with annoyance in his voice. Visions begin, but he doesn’t mention them unless he does it without thinking. He might ask about the man at the door, realize he isn’t there, and say “I guess he wasn’t really there.” His first waking moments are confusing. If this goes on for more than three days we start to slip into delusional behavior.

Delusional

Continuation of hallucinations. Can’t recognize personal effects, like his TV or phone. Dad might not see you leave for a few minutes. He might develop strength enough to walk away, but after he lost 30 pounds that pretty much stopped. Ends in a sleeping phase where he fades in and out of wakefulness.

Crash

Spends 24 to 48 hours asleep unless you wake him. You can get him to open his eyes but he probably won’t focus on you. His eyes will fix on a point far away from you. He’ll remain in this phase for a day or more and wakes hungry and at a new baseline.

Repeat as required

This is why they call it the “roller coaster.” We experienced this cycle over 8 times in a three month period.

Time To Go

As a prize for walking 400 feet, he was discharged from the first hospital. To their credit he did appear awake and aware, so my brother took him home. He didn’t make it another 24 hours without a trip back for issues related to his catheter. His new pattern involved fiddling with his equipment, which he could avoid when at baseline, but during any of the other three phases he might tug or yank at it incessantly. Over the next four days this fascination resulted in the removal of a medical device to address sexual function which he had implanted in the 90’s, followed by a drowsy senile period.

This situation wasn’t working. After some emotional discussions, my brother and I decided to place dad in an Assisted Living facility where he’d be cared for and forced to interact with people. He needed engagement. My wife and I spent some time and found a place that satisfied the need to feel good about it.  He qualified for limited support at the time of interview. The place was close to me, smelled fine, and was filled with kind women, something he appreciated. I checked him in on a Tuesday. He signed every piece of paper and seemed to enjoy the atmosphere. In retrospect I know he was barely holding on.

Alas, it wasn’t meant to be. Three days later he was delusional, mistaking corners for bathrooms and cursing at the staff. On the fifth day they called. He’d been moved to the memory care unit due to his nearly zombie-like state. His stomach was distended and while his eyes were open he didn’t see or hear us. My brother and I rushed him to the hospital.

At hospital number two they replaced his catheter, resulting in a lot of blood and cries and anguish. An agonizing amount of urine flowed from him, surely the cause of his delirium. And sure enough he awoke the next day happy and alert.

It was here we discovered not all hospitals are the same. The difference was stark. They promised to find out why he kept slipping into dementia, whether it be another infection, something related to his damaged urethra, or just another symptom of his Lewy Bodies. For another five days he struggled in the hospital. For 48 hours we watched him go from happy and alert to befuddled and writhing in bed. And then came the call to meet at the hospital.

The neurologist, very familiar with Lewy Bodies, said our father was not coming out of this condition. Too much weight had been lost, severe dementia was apparent during wakeful times, and the infection wasn’t going away with the strongest antibiotics they had. He was dying.

And so we went to hospice.