“The things you own end up owning you. It’s only after you lose everything that you’re free to do anything.” ― Chuck Palahniuk, Fight Club

Part 3

January 2008

The new year brought with it a new set of patterns. I would call my father every day to check in and the visiting nurse would call me every other day to provide a status report. She made sure he was eating and that he had clean clothes. His executive functions were gone and it seemed he functioned on habit alone. He would shop, but would buy the same things each and every time. He continued to go to work, the notion of him driving a car every day terrified me.

Talia and I worked in concert to try and find a solution. We spoke to elder care attorneys and doctors. We learned that the Commonwealth of Massachusetts would take him into an elder care center that neither we nor my mother could afford otherwise. We learned that what little resources my mother had would be protected as long as she remained married to my father. We worked to set up the doctor’s appointments that would be necessary to confirm our suspicions of dementia and take control of a life my father insisted was just fine, knowing we were running out of time.

I got the message from Danbury the Monday after the Super Bowl. I’d been out at a friend’s house and hadn’t seen the blinking message light that night or the next morning. I wasn’t expecting any news. My sister, Amy, and her husband had just visited my father that weekend and reported he was doing okay. He had an appointment that week to finally see a neurologist and I was driving to Danbury to ensure he went this time. I felt that we were finally ahead of the curve.

The short message led to a longer call with the minister from my father’s church. As we talked the story came together. My father, tired from keeping up appearances for Amy’s visit, had fallen asleep after she left. Later that evening, waking up in the dark of early February in Connecticut, he’d mistaken 7pm for 7am, with the additional complication that his watch was running four hours slow. He rose and went to open the church for Sunday service, believing it to be 7am in the morning.

Another member found him as she was departing from the homeless shelter the church hosted. As luck would have it, Annie was a registered nurse and recognized that something was off with my father’s midnight activities. She got him home and back to bed and the next morning she raised the alarm with the minister. I drove there mid-week to take him to the neurologist and started the process that would, if not get him better, provide him with the oversight he needed to keep him safe.

The neurologist’s visit was typical, in that there was a specific medical process that had to be followed and thus no way for them to help in the short term. What I desperately needed was a doctor’s note I could use to trigger long term disability with his employer. We needed more time to find him a room in the Massachusetts care system and some way to cover the costs before his benefits kicked in.

My father, seemingly oblivious to the frank conversation about his mental health I’d just had with the neurologist, took himself to work despite my insistence that he should stay home. I called his employer and they refused to discuss the situation, citing some statute about employee confidentiality, clearly over their heads when it came to dementia and durable power of attorney. I called his primary care doctor and brought him up to speed on the weeks events.

He agreed to write a letter stating my father had a dire medical emergency and needed to be on long term disability. Feeling grateful for the lone medical professional who recognized that leaving my father driving around was a greater ethical failure than short-circuiting state medical process, I called my sister. She agreed to take him for a couple of weeks and I went to pick up the letter from the doctor’s office. He’d dropped everything to write it.

HR still refused to meet with me and sent my father out to the lobby upon my arrival. I gave him his doctor’s letter and asked him to bring that to HR. Without question he took the letter and walked back inside. I sat and pondered the strangeness of the situation. He’d just carried his own termination notice into the HR department of a large medical device company that was employing him to do quality checks. The entire thing was a Venn Diagram nightmare of public relations, health care confidentiality, and regulatory law. He returned 20 minutes later with another letter and a grin on his face. “They’re giving me some time off!” he said. “That’s great Dad, now you can go and visit Amy for a couple of weeks.” I replied.

And so, that afternoon, just two months after moving my father into this apartment, I’m repeating the scavenge and abandon process, taking only the stuff he needed to get by at my sister’s for a few weeks. I took the glider rocker and hassock that he enjoyed sitting in, the small color TV he got from AT&T as a twenty year bonus back in 1987, and the last of the tools I couldn’t fit into my car on the prior trip. I left everything else.

The neurons in the back of my head were quiet this time. I didn’t have any ties to that place.

Part 5

Thanks to Kate for the Venn Diagram!

“The things you own end up owning you. It’s only after you lose everything that you’re free to do anything.” ― Chuck Palahniuk, Fight Club

Part 2

December 2007

I stepped back and over to open the door to the adjacent room. I reached in and turned the light on. My father’s workshop, a shared space with the furnace, once covered with tools and electronics and piles of stuff that had been interesting or promising or in need of repair, is now only a bare workbench overseen by yards of empty pegboard. I remembered the remote controlled Jeep I’d tossed away this summer, powered not by the required D-cells, but by empty Polaroid instant film packs. My father had figured out that the batteries they contained would power the toy and for whatever reason, he’d kept dozens of empty film packs.

He eased past me with his find, the empty plastic package for the new thermostat he installed four years ago. He put it back on the peg it had occupied before I tossed it into the trash pile that morning. He seemed satisfied at having completed that task. He had no reaction to his empty shop. At least no reaction that he shared, his natural stoicism and silence were a factor in how far his dementia progressed before anyone noticed. I thought about telling him the packaging didn’t need to be saved, but realized that nothing inside the house mattered at that point.

“Let’s get some dinner dad.” I didn’t bother to ask him if he wanted dinner, his default answer to everything at that point was yes. Another strategy he used to conceal the disease. I turned the light off and checked the garage to ensure it had been closed up. The neurons at the back of my head continued to crackle as we left the house. I chalked it up to last goodbyes and the haunting sensation that comes with knowing it is the last time I will be in my childhood home.

We ate at a nice place in Danbury. It was expensive, but I was sitting across from a demonstration of just how suddenly life can be shortened, so I had no qualms about treating myself. I thought about that word as I sat across from my silent father. Myself. It’s a concept that might hold no meaning to me in the near future. I wondered if frontotemporal dementia was hereditary. I did the math in my head.

Seven to ten years for the disease to progress to the state he’d reached. He was sixty three. I’d just turned thirty eight. I might have seventeen years before the slow moving disease began erasing me. My sons were only five and seventeen years was significantly less time than I had expected to spend with them. Would I be on my way out just as they finished college?

I pushed that scary thought away and drove us back to his apartment. It’s packed with those things I couldn’t bear to throw away. Odds and ends better suited to a garage, all stuffed into corners under the sharp angles of the Victorian roof line. I felt bad about leaving him alone, but it’s after eight and there was still a three hour drive in front of me, plus unpacking the car the next morning, the young kids I hadn’t seen, and the mounting tension between Talia and I as our basement, already in a state of post-dead-water-heater-flood disarray, continued to fill up with the salvage from Danbury. I reminded myself that the visiting nurse would be stopping by tomorrow.

I cleared off a chair and my father sank into it. I’m shocked by how exhausted and old he suddenly appears. My father had been a young man my entire life. He was 26 when I was born and I can remember him being laid up only from the rare sinus headache and one wisdom tooth removal. He was otherwise indefatigable, up when I went to bed and somehow up before I woke up every day. In the space of an afternoon, he’d become an old man. The disease that was destroying his brain had finally started to manifest itself physically.

The guilt I’d felt in tossing out all those touchstones from the house paled in comparison to what I’d felt that evening. I was going to have to leave him there. Between his stubbornness that everything was fine and my lack of preparation for his sudden incapacity, I had no idea of what to do next. I ignored the larger problem and dealt with the immediate one.  

I spent another hour rummaging through unmarked boxes to make sure that my father had the necessities: plates, cups, bowls, and silverware; his lunchbox; toothbrush, floss, soap, a washcloth and a towel; socks, underwear, pants, and shirts. I found myself once again astonished that he was going to drive to work on Monday, more so that he was still working. I hugged him goodbye and started the long drive home with another carload of stuff. I was certain that I wasn’t doing the right thing and equally certain that there was nothing else I could do.

Part 1

“The things you own end up owning you. It’s only after you lose everything that you’re free to do anything.” ― Chuck Palahniuk, Fight Club

December 2007

By the end of the summer I’d finished the heavy purging. My mom held a few tag sales, donated a bunch of stuff, and then moved out herself. My father remained in the now mostly empty house as it sat on the market through the fall.

We hired a visiting nurse to stop in every other day and check on my father. He continued to work, somehow running quality checks on digital mammography machines and driving himself to and from work. Terrifying notions on both a global and local level. The house sold in October, but my father hadn’t done anything to find a new place to live. Luckily, the visiting nurse quickly located a nearby apartment and so I drove back to Connecticut to help my father move.

We spent the day moving the last of my dad’s possessions to his new place, a tiny, third floor attic apartment in an old Victorian, whose winding, cramped staircase forced me to cut his new bed frame in half and then Frankenstein’s monster it back together with steel plates and screws. It was late in the evening when we finish moving all the important stuff to the apartment and I returned to my childhood home for the last time. Even after filling those three dumpsters, my mother taking her stuff, and moving my father’s remaining things out, the house somehow still has stuff in it.

The large radio cabinet had been the centerpiece of the living room and served as a TV stand my entire life. It was probably worth something as an antique, especially with the tube-based radio still embedded in its interior. But I had no way to move it. I removed the radio and left the cabinet behind, with the scratch-built amplifier my father had assembled in his twenties abandoned on the bottom shelf. I stowed the radio in the car and walked through the top floor, empty now save for the cabinet.

I paused for a long time in the kitchen, staring out the window at a familiar view I wouldn’t ever see again. I paused for even longer in my childhood bedroom, it’s walls now bare of the full page black and white movie ads I’d cut out from the Sunday New York Times, the giant poster of the Manhattan skyline at sunset, and the Carol Alt poster hidden on the back of the door. I stared at the tree in the backyard whose wind-blown leaves had always provided the background soundtrack to the neighborhood kids playing in the late summer light as I laid in bed thanks to my parents’ ultra-conservative approach to bedtimes. I left my bedroom and walked downstairs.

The basement, my childhood retreat and playroom, felt small. I didn’t know why. Was it because I was bigger? Because it’s empty? How could it feel smaller when it’s empty? Was I feeling guilty at having thrown away nearly everything that had been in that room? Was it because I was judging my parents? Nearly empty, the house had revealed its many needed repairs, delayed improvements, and decades of neglected spring cleanings, all put off until time ran out. The neurons at the back of my head crackled, there’s the notion of an idea there, but it won’t reveal itself.

There’s a large pile of trash on the floor near the sliding doors, the large glass planes reflected back my image. I’d thrown the green, insulated drapes away and the cold December night was pushing its way into the basement through the glass. I skirted the pile and walked to the laundry room. Everything was as familiar to me as my own hands.

The number of steps through the basement to the laundry room, the smells, the angled turn through the already narrow doorway, made smaller by the large set of shelves crowding the opening, pushed closer to the door by the enormous 1950s freezer sitting next to them, the distance I reached to grasp the butcher’s string stretched across the room to the light fixture, the tension in the string as I pulled it, the sudden brightness of the naked 100 watt bulb on the far wall. The room it illuminated had changed.

All of the familiar things were gone, even the shadows were wrong. I stood still for a moment. My father was quietly pacing in the basement, unsure of what he is supposed to be doing. He doesn’t ask. He doesn’t ask questions anymore. In a few months an active MRI will show the part of his brain that should have been a riot of thoughtful color as an empty blackness. So profound is the damage that the doctors are able to make their diagnosis of frontotemporal dementia solely on the images. They make note of that rarity in a report that is, given the images, both too late and pointlessly long. It confirms the suspicions of the last year, but it can offer no treatment, no recovery, no hope.

I stood still for a moment longer, knowing he can’t tell how long I’ve been there, knowing that this man who had been my father will wait and follow me like the happy toddler he’s become, and I tried to make sense of the crackling in the back of my head. I heard him rummaging in the large pile of trash in the middle of the basement. I pulled the string again and the empty room went dark.