My father says, “I don’t know why they keep putting me in these leather pants.”

Of course he isn’t wearing leather pants, he is wearing his Levis, the same pair he’s worn for the past twenty years, but that doesn’t matter. I play along because it’s easier and less jarring. Contradictions only upset him more, adding to the confusion that surrounds him like a thick fog. Once a man firmly rooted in logic and rationale, facts have now become elastic, shrinking and stretching to accommodate whatever delusions plague his reasoning. Earlier there were elves running rampant in his room, and now we have the mystery of the leather pants.

“Where did you get those cool leather pants anyway? I say, you must be the hippest guy in here." I play along.

He cracks a smile which rolls into a belly laugh, “Geez I don’t know Steph, but the damn things are hot.” He pulls at the pants, adjusts the waist tentatively. He moves more robotically now, like someone just waking from a long coma.

“ I bet the ladies like your leather pants dad. I say, joking with him, trying to make him smile. “What do you wear with them anyway, a silk shirt?” He senses that I am trying to be funny but remains convinced that he’s dressed like Mick Jagger.

“No, no, I don’t wear anything with them. That’s the funny thing, it’s just the pants.” He is standing in the middle of his room, lurching forward a bit, smiling slightly, his eyes focused somewhere slightly behind my head. He suffers from a rare variant of Alzheimer’s called Posterior Cortical Atrophy. Rather than launching a direct attack on the cerebral cortex first, PCA strikes the brain’s visual centers, effectively blinding you while simultaneously erasing your life. The added gift is that my father's insight into the disease process will remains intact allowing him to bear witness to his progressive deterioration.

No matter where he is, he is lost. I mean this not only figuratively but also literally. Often he can’t find the bathroom which is located no more than ten feet from the side of his bed. Despite the fact that we’ve now installed motion sensitive lighting, accidents happen on the long, obstacle filled gauntlet from bed to bathroom. If he can manage to find the room he may not manage to find the button on his pants, or the zipper. He may pull them up rather than down. He may sit in the bathtub rather than on the toilet. There are many perils to which he can fall prey. He is forever ensnared in a maze of dead ends. If he needed help he wouldn’t be able to find his phone.

“So you go down to eat dinner shirtless in your leather pants?” I ask.

He laughs again. On some level he recognizes the humor in this, he knows I’m kidding. I picture his hippocampus lighting up like a slot machine. I rejoice in the fact that a part of his brain still works. He knows when something is funny. This might not be true of a typical Alzheimer’s patient. I console myself with the disease’s small kindnesses: He still has a sense of humor. He can still sing you are my sunshine. He still knows I am some member of his family, that I love him.

Later we are walking down the hallway holding hands. He turns to me and says, “ You are my daughter, right?” He craves the comfort of this reassurance. Yes, I am your daughter, I say, the oldest one, Stephany.

I’m not offended that he can’t remember me, exactly. I am happy that in this moment he feels a sense of family, proof that our efforts have not been in vain. For the past year my sisters and I have developed an elaborate scheme meant to a) alleviate our own guilt about not being there with him and b) visit him often enough to assure him he actually has a family, not just a group care givers that shuffle in and out of his room to dress him, bathe him and stir up his Benefiber.

Flying back and forth to Michigan from all over the country, my sisters and I aim to revolve around him like planets. Our plan, which sounded great in theory, has proven remarkably stressful, especially for those of us commuting to and from the West Coast, but our determination to prove ourselves right trumps our desire to truly give our father the home he deserves.

There are all sorts of face saving excuses. We are too busy. We are too tired. We live in cities. We have kids. We have jobs. We have husbands.

We don’t have room for our father.

None of us steps forward to make the kind of sacrifice he would’ve made for us. We each remain cocooned in our little worlds, with our reasons. In the meantime we pay our mother, his ex wife, to take him for walks. Ironically, of all people she holds the key to what little freedom he has, and fortunately there are benefits to his forgetting. Hers are paid acts of kindness that he views as loving gestures, thankfully.

The downward slide of his disease has brought with it an avalanche of responsibilities, fears, and guilt. We continue to try to negotiate safe footing with the ground continually shifting beneath us. There is no balance. There is no place of respite. Our father’s disease represents the end of dreaming, a long and unforgiving one way journey for each of us.

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