The call went out that my father was dying. His remaining siblings traveled 7 hours to see him. It became a veritable family reunion as we all paraded in and out of his room. My father lay in the bed, eyes closed and lips dry. Intermittently he’d twitch as if in some calamitous dream, arms thrusting skyward before collapsing back to his sides.

His brother prayed over him, giving him permission to leave us. His sister told him of all the people from home asking about him. They talked about how he used to have so many girlfriends, how he loved to go to the skating rink. And they left. And we were alone with my dying father.

I’m still struck by the surreal nature of the experience. It all seemed so sanitized, so clean. The hospice facility was beautiful, professional, and kind to everyone. During his stay in hospice #1 we got to know them very well. You learned who the regular volunteers were and who made up the permanent staff. They cared for my father and put up with a lot over the coming weeks, because much to our surprise my father emerged from his catatonia 48 hours later.

For the next three days he struggled to return from his outage, alternating between quiet yet seemingly alert state and a sleepy fog. During these episodes we’d visit every day, sitting for a couple of hours each, watching TV and eating free cookies. Dad might ask a few questions or not, but eventually slipped back into the end stage.

Not knowing what the future would deliver, we treated each stage as if some fight raged inside him. We could only wait for the door to open and the victor to emerge. This went on for another two weeks until he hit us with a question. He asked, “What is this place?”

“You’re in hospice, dad.” I decided not to sugar coat it. “We thought you were dying.”

And he sat there, staring ahead for another 30 or 40 seconds before continuing, “And how long have I been here?”

“Going into the third week.”

As he digested this information I took note his skin was normal, his cheeks flushed with nutrients. Coke was the drink of the day and food was an interest again. But we discovered the cycles of his disease robbed him of taste. Even his favorite meals were like cardboard he said. But he continued to gain strength and we could man-handle him into a chair and wheel him about the place.

My father seemed on the mend. This could happen and did, they told us. People get better. But not my father. His body may appear to others on the mend, but they didn’t know what he was like before the crash. This was a far, far cry from his capabilities a month before.

One night at 2 AM he called asking where I was. He told me I got up, went to the bathroom, and never came back. He was calling to find out when I was coming back to the room. He did this for a couple of days, randomly dialing me or my brother, looking for a connection. It didn’t matter that he saw us both every day for several hours. You could leave for five days or five minutes and he’d swear you’d been gone weeks. This disease robs you of your sense of time in the strangest of ways. Still, sitting in a bed for the better part of two months can do that to a guy. But he has LBD and that’s different.

He became convinced he was in the apartment we built for him in the garage. He was also convinced someone moved him in the middle of the night to an exact duplicate of the room. He was amazed at how they reproduced it down to bringing him the same books. That’s common too with LBD.

And then came the hammer. The doctors told us my father was no longer terminal and could go home. Home? He couldn’t walk, could barely communicate, required constant supervision both medically and mentally, and would only get worse. He was clearly headed into another cycle, but it turns out hospice is palliative care, meaning only comfort given in death. No longer dying, my father had to leave.

So began the saga of finding a home for him. He needed to be close and they had to take Medicaid. My father saved no money, had no assets, and together my brother and I came up short by a long shot. Had he just been bed-ridden the story might have turned out differently. He’d only need someone to come by and help with the basics, allowing him to live in the new apartment. But with the dementia you can’t do that. He had to be watched so he didn’t wander off, harm himself or others.

Medicaid, however, would pay for it. The problem with this strategy is few places take Medicaid. It turns out when you’re a for-profit center you don’t have many slots open for the poor. They don’t make as much money on Medicaid patients, so you take fewer of them or none at all. This means only the saddest of the sad, the most financially needy centers are options. This means dirty, crumbling homes with indifferent staff and sparse medical coverage. Throw in the LBD and the number of willing centers effectively dries up.

I’m not joking when I say we contacted over 45 nursing homes in the greater Atlanta area, faxing his 50 page file for review. Out of those 45 we found only four willing to take him. The first two reeked of piss and cried out for bleach and paint. One had such a horrific reputation I didn’t even tour it.

But the final one, the only one left, squeaked by. It had a nearly perfect rating, something the others clearly didn’t have. But the building was old, a little tired, and almost an hour away. Visiting him every day wasn’t possible now, as the extra hours each day didn’t exist. Every other day was the best we could do.

It was with the move to nursing home care when we began to face reality. Our father was awake only 25% of the time. The rest of the time he’d spend either ignoring those around him or sleeping. If you did manage to catch  him awake, he immediately asked how you found him or comment you were just there. If he could only stay present there were activities to do, people to chat with, and he could always call us.

With a heavy heart we planned the move while we worked on finding a place closer to us. Though we mentioned it for nearly a week before hand, he startled when we announced it would happen the next day. He was already showing signs of a decline with some babbling speech. I was sure he’d relapse before we could move him, or right after.

Two days before leaving hospice my father removed his catheter. He was forever fiddling with it but he was out of it enough to do anything. For some reason they decided to leave it out to determine if urinating was something he could do on his own again. They assured us he was voiding, though his stomach was beginning to bulge. They promised to cath him again to make sure he was empty.

And after four weeks of care in a beautiful home like environment, my father moved into the nursing home. Sadly, it was his last move.