My father is dying. Slowly.

As he lies in his bed at hospice I sit here in comfort in my office wondering how in the hell I’m going to process this in some way to make it digestible. It’s a nebulous thought, still detached from my reality like the trip one plans to take in six months. You know you’re going, you even know the time of year, but you’ve got so much time to think about it. And then something happens. The worry sets in. You have this nagging feeling you should already be packing. This lump of panic sets in about the hotel or the agenda. And then you realize you’re leaving and it doesn’t really matter what you forgot. You go with what you have.

This trip leaves whenever it wants. As the analogy leaves the station and the train settles into a rhythm your mind syncs with the low, ephemeral hum of the tracks. The view out the window becomes a blur and the traveler slips between waking and sleep.

I’m awake during this trip. It’s been three years in the making, almost to the day.

It was 2007. Dad was on his own after his third wife left, gone back home to her boys to manage her own dementia. His last job ceased when the factory closed, ending a 25 year career and leaving him on unemployment and social security. There wasn’t much a 65 year old man could do at that stage of his life. He filled the time with child education classes at the local community college, hoping to teach kids some day. We thought it was a fabulous idea, using his brain and keeping it sharp. He did this for two more years before we started noticing changes in him.

Dad’s left hand began shaking, barely at first but developed into a full-on shake by 2009. We confirmed with relatives they noticed, which made us feel better, just in case we were too sensitive. His sister confronted him about the shake and he told her he didn’t notice it. His doctor told him it was an “age related tremor,” and we relaxed. That made total sense. He was getting older for sure but he still had his faculties. What we didn’t know was his penchant for understatement. It would be years before the truth was revealed, that our father told everyone who asked “I’m ok. Doing great,” which was what everyone clearly wanted to hear.

Our father habitually fed this soft lie to everyone about his condition, or at best downplayed the symptoms. We were told “I’m on medicine for it.” Dad lived so far away we couldn’t verify the effectiveness of the treatment and with a reluctance to question a parent we let it drop. The thought he may have Parkinson’s was only beginning to dawn on us. We weren’t ready to care for Dad, who was only 68 at the time. Instead we asked local relatives to watch it.

By early 2010 we noticed he didn’t remember a few basic computer skills, something he was actually quite good at in the previous decade. Then he called me asking for help with a few bills, confused how he’d been unable to make ends meet. With Social Security not enough to cover his bills my brother and I had to make a choice. We couldn’t afford to pay extra money for an apartment so he moved in with my brother.

Over the next three years we discovered the difficult and heart-wrenching truth; my father had Lewy Body Disease, something that mimics Parkinson’s, throws in some dementia, and is far more brutal on the body.