My father moved into his last home on a Wednesday morning while my brother and I filled out forms. Filling out forms, a necessary evil no doubt, consumes the greater part of the time you spend in a medical facility I think. Worries over the mark of the beast aside, it’d be nice if we had IDs so one could just fill out a form once and transmit it when needed. It’d save so much time!

After the final signature my brother and I found him in his new room. He was semi-conscious but could communicate. If you stopped talking to him he would fade away. We spent some time meeting the nurses and the staff, informing them of the peculiar nature of Lewy Bodies, and trying to get a sense of how the facility worked.

To my surprise I got a better sense of caring from this staff than from some of the places that looked measurably nicer. They listened and tried to understand. They smiled and called us by our names.

But Dad still suffered from his missing catheter. Visually you could tell he was suffering by his distended belly. We gave them the history once more, explaining he’d need his catheter back. By the time we needed to leave Dad was sleeping, having eaten some of his lunch.

You can spend a lot of time talking about how you feel. You can crumple under the weight of the guilt for not doing all the work yourself. Or you can quietly ruminate over the exact minutes you spend dealing with an illness like this. I ended up deciding no amount of thought ever truly satisfies. There’s always one more thing you could have done. I worried silently that people who claim they did all they could simply hoped it was true. As my brother and I ate a quiet lunch in an Indian restaurant, we consoled ourselves.

I received a call that night around 10:30 saying when they tried to cath him copious amounts of blood poured out. As I said, I was expecting to get this call so off to the hospital we went, with Dad heading in an ambulance and me coming from home.

The stay didn’t last too long. By 3:30 AM they’d put a new catheter in, stopped the bleeding, and taken a record amount of fluid from his bladder. As he usually did after these events, my father collapsed into an exhausted heap, sleeping and hopefully out of the current round of delusions. If history repeats itself, Dad will wake tomorrow with some clarity and get better over the next week. Afterward we watch and wait.

For the next two weeks we visited every other day, bringing Dad new clothes, setting up his TV and getting cable installed. We took him around the facility and out into the courtyard. We watched his favorite DVD, Mama Mia, though this “new” version had many “errors” in it. He became sullen and grumpy a week into his stay, though he’d usually apologize when we got up to leave. I couldn’t blame him.

While he did come out of the fog after the hospital visit, he still cycled rapidly from day to day between alert and asleep, clear headed and clearly delusional. He called one day to explain the nursing home was closing in two weeks and he’d convinced them to let him go early. Would I come get him. By this time my brother and I were simply responding as best we could without trying to explain things too much. Usually we could just say, “I’m coming by tomorrow anyway. Let’s talk about it then.”

But two weeks into his stay he pulled out his catheter again, and again no one was there to see how it happened. I maintain he did it by getting out of bed and forgetting the bag was tied to the frame. We’ll never know the truth, though. I drove to the hospital closest to the facility this time.

When I found him he was highly delusional, clearly in distress, and I went to work keeping him calm. In my father’s head it was probably the late 70s. He asked if we could sit outside and smoke cigarettes while we waited for the test results. Next he asked if we could wait in the car; he’d parked it right outside. It wasn’t until later I figured these were attempts to get away from the building. like he’d done with my brother.

And yes, there was lots of blood. They even asked me if I’d ever assisted with a blood transfusion. I stood by, watching them put a new catheter into my father and trying to stop the bleeding, and this sense of heaviness fell upon me. I knew this cycle couldn’t go on much longer. His body couldn’t take it. My father couldn’t leave himself alone long enough to heal, which sent him into these great spirals. If he did manage to stay healthy long enough to think clearly, his disease muddied those waters to the point where he sat like a tiny paper boat, bobbing in the ocean.

I held him and whispered to him, sometimes angering him, hopefully giving him comfort in a terrifying situation. He cried and sobbed and thrashed until exhausted he collapsed.

He stirred only when they transferred him to the room where he stayed for the next two days. They treated my father like a friend, whispering gently and easing his pain. They bathed him and covered him in warm blankets. And as I left they understood to watch him and his hands.

That’s hard to tell someone to tie your father’s hands down so he can’t harm himself. It’s even harder to see as they struggle against them, in a fog and unsure why they can’t move their hands. My father didn’t really wake up much during his two days in the hospital. His hands would reflexively move toward his catheter but stopped shy due to the straps. My brother reported he began to speak to people not in the room, cousins and old bosses. Memories teemed, tumbled, and collapsed at his feet all the while he refused to eat. He lost more weight.

The doctors told us most nursing homes wouldn’t take patients who needed restraint, filling us with concern that another hospital would drop him back at home where he could potentially worsen without medical care. But they said he seemed very ill to them. Perhaps we should consider hospice.

They returned my father two days after admitting him. We visited him that Saturday and found him awake, but completely gone mentally. No talking, no recognition, no desires of his own. He sat in a wheelchair, head tilted to one side, looking around as if he were 2 years old. We moved him to his bed and discovered his legs were swollen and he seemed a bit bloated still.

With the help of a worker we got food in his mouth and got him to eat half a cup of sherbet and some yogurt. He didn’t say a word to us the entire two hours we remained, only occasionally wiggling his eyes without regard to any event. We weren’t overly concerned; this seemed more awake but less present than usual. We left hoping he’d simply sleep it off and emerge the next day tired but hungry. That was always the plan since hoping for anything else bordered on madness.

Two days later my brother found him unchanged. When food was offered he refused it, a sign the end was coming. When I arrived the next day to take him to a urology appointment, even the staff were dubious he could make it. His body was stiff, his eyes vacant, his mouth perpetually open, though he did still look about somewhat. And with a heavy heart we decided to place him back into hospice care, this time inside the nursing home. That was a Wednesday and by Friday she was speaking in terms of days, not weeks.

We visited again that Saturday and found him on oxygen. No food, no water for three days and no change. His urine was a dark, murky trace amount and we couldn’t see how he’d make it another day. And yet, he survived the weekend.

I took the Monday off due to Columbus Day, a school holiday. My plan was see Dad in the morning and again at night if time warranted. If he lasted another day I’d go again tomorrow. My brother planned to come by after work and together we’d spend several hours with him.

I arrived to find him breathing rapidly, as much as 60 times a minute. I texted my brother and he asked about something called the death rattle. A quick Google search revealed it to be a horrible, throat rattling sound made by people close to death. Thankfully he wasn’t doing that just yet. Time for everyone to still chat with him.

But life is cruel. I sat, reading articles on the stages of dying, and thirty minutes later the rattle began. The nurse didn’t think it was imminent and I planned to come back anyway. Dad’s body fooled us so many times till we became complacent. So I prepared to come back either that night or first thing in the morning. The hospice nurse gave Dad hours, but probably not past the morning. I whispered at long last to my father it was okay for him to leave. It was okay to go and be with his family and leave us behind. Snapper left work to relieve me. Dad was too far gone to know we were there. He was trapped deep within the walls of his shrunken frame.

Four hours after later, with my brother by his side, my father took a sudden breath, followed by a pause, and then another deep breath and died.

One week shy of three months from the first trip to the ER and he was gone.