I do well when I’m charged with a project that has a natural endpoint, a collection of discrete tasks to check off my list. When the list is done, the project is complete. I find this very gratifying. Perhaps this makes me a simple person. I’m not bothered by the nuances of what’s ahead of me. As long as I can articulate the steps and get at it, I’m content, even if the project is not a pleasant one.
I am a strong woman. I have fought for my place in high tech, a field that is often unkind to women. Deciding to move Robert to Daylight Memory Care was gut-wrenching. Preparing to move him was disheartening, but with a list, I could turn it into a project. I could do this.
I stood in the doorway to his office, the front bedroom. The room is small with a large window overlooking the street. I flipped on the light switch and then thought better of the artificial light, flipped it off again, and opened the blinds to see a pack of high school kids racing to beat the morning bell.
Letting go
Fully illuminated, I studied the flotsam of this room, so well lived in by Jackson when he was small and then by Robert after Maddie moved out of the house and Jackson moved to her bigger bedroom.
This space had been through so many iterations. Jackson’s changing table and crib were long gone, replaced by his bunk bed and ceiling-high wardrobe. We minimized furniture footprints to get the most out of the space. The wardrobe had been speckled with stickers picked up on various outings which charted Jackson’s progress from toddler to pre-teen.
I rarely scrutinized the space too closely. But this day, I found remnants of Jackson in the room as I rifled through my catalog of memories.
The space would change again when Robert left.
Studying his lair
A dingy, rubber-coated underpad sat in the middle of the bright blue duvet cover, slightly crumpled and depressed where Robert had sat down that morning. Freshly laundered jeans and shirts were neatly folded and stacked at the head of the bed, his favorite T-shirt with a proud photo of our dog, Kenya, on top. The clothing discards of the previous few days were draped over the walnut footboard. I closed my eyes and imagined the duvet smoothed out and cleared. My throat constricted. No. That was uncomfortable. That wasn’t right. I tipped my head to the ceiling and changed my focus.
The desk against the wall was littered with scraps of paper, prayer books, and piles of spiralbound notepads. Any bits of its surface not covered were tacky to the touch. Robert’s monitor was speckled with the spittle of months of open-mouth guffaws. I was the only one who cleaned the space. My duties were piling up.
I pictured Robert’s inert but happy form, lazing in his overlarge office chair as he watched an episode of Real Rob.
Robert loved this chamber, his sanctuary. In the cradle of this room, he let his declining mind wander, his attention flitting from one imaginary interaction to another. When I encountered him in this space, his joy was palpable.
What was important to Robert?
I sighed, hands on my hips. In this mess of a room, what did I need to move to Daylight Assisted Living and Memory Care to make Robert’s transition as seamless as possible? How could I recreate the joy he felt in this room? What would make Robert’s new space a home?
He loves listening to music. Bob Dylan, the Beatles, and Cat Stevens are his favorites. Robert could no longer figure out how to turn on a stereo system, but he could tell Alexa to play The Beatles. Alexa needed to travel with Robert.
He could no longer navigate the complexities of his desktop computer or recall the intricacies of a multi-function remote, but he could click a few buttons on a screen to play a Netflix series. Robert needed to have access to a simple video streaming device.
He needed to have access to his favorite books, the texts of his faith. He needed a writing tablet and pens to scribble down ideas as they came to him.
Robert could spend hours gazing at an intricate poster, discovering and rediscovering elements of its rich story over and over again. His walls should be decorated with art that would occupy him.
Taking his family with him
Above his desk were two photo collages of the kids I’d created for half-page “recognition ads” in each of their senior yearbooks. Robert spent hours gazing at these 8x10s often uttering his standard exclamations of “Wow” or “Incredible.” He needed photos of his family within easy visual reach either on the walls or in an album.
I imagined that at some point, Robert would lose us, and labeled photos of the family would remind him he was loved and make it a little easier for us as he drifted away.
Beyond recreating this space, there were ancillary spaces at Daylight that needed to be outfitted too. Since we would be rearranging his entire world, he needed to be able to find things simply without a lot of confused hunting about. His clothes needed to be easy to discover each morning. He needed a place to collect each day’s discards and lay out his clothing for the next day.
He must be able to prepare his own breakfast and find snacks to munch on between meals in the dining room.
A project to complete
My assessment was complete. I compiled my list. I’d find some items thrifting, some I’d move from our house to Robert’s new apartment, and still others I’d order online. Daylight Memory Care could receive shipped items two days before Robert’s target move-in date of May 8, 2021. Maddie would help me unpack and put everything together.
This was doable. I could direct my energy to completing these tasks and move forward with the “Robert Relocation Project.”
I think I handled this well, the planning for Robert’s comfort. Task list prepared? Check. Clearly defined goals? Check. Obstacles removed? Check. Gratified? No.
The man I’d lived with for the last 38 years was moving away. He would not be coming back at some point in the future. There was no alternate reality, a more forgiving path on which he recovered his mind. The married, cohabiting stage of my life was coming to an end. I was washed in an overwhelming fatigue. A deep, dark well pulled up around me. I wanted to rest in its hollows, disappear. My throat constricted again. I needed to cry. Otherwise, how would I go on breathing?