It wasn’t until much later, after I brought Dad home from the hospital, after I deposited the plastic bags that said “personal belongings” on the living room floor, after I set up appointments from the visiting nurses and physical therapists, and after he were getting resettled in our family home, that I realized the notebook was gone.
It was a 5-inch by 9-inch three-ring-bound loose-leaf notebook with a yellow cover. I bought it for him at a CVS next door to the rehabilitation facility where he stayed for a month to undergo IV antibiotic treatment for a septic knee.
It had been a rough several months since Mom died. At first, I thought that despite the sadness, it would be freeing for him, a chance to catch his breath after 5+ long years of caring for her at home. As Mom was completely devoted to the two of us for so many years, he was devoted to her, specially preparing meals and administering medicines, dealing with her bed-ridden state and training a steady parade of nurses and aides who came through to offer varying degrees of assistance.
Despite the loss of his soulmate, he would now have a respite, a chance to take a drive to buy groceries without having to worry about leaving her alone for 30 minutes. There was now the opportunity to go out to Starbucks for a cup of coffee and be out in the world again (so to speak), or to go out for a relaxing meal. He had now been set free, to look after himself and consider his own needs first, instead of always being focused on someone else’s well-being. However, when we came to that moment, the reality of the situation bore no resemblance to my hopeful imaginings.
As I realize now, when Mom died on that cold January day, Dad lost his raison d’Ãªtre. And another painful truth: there was nothing I could do to change that.
Dad was never particularly good at retirement. Some people aren’t, especially those as committed to their careers as he was. When he went to work every day, researching and designing medical imaging systems that would go on to detect breast and prostate cancers and save people’s lives, he was in his own world. When I was young, Mom often felt he didn’t spend enough time with his young daughter, and she encouraged him to bond with me more (so I was told, by him, many years later, when we had grown much closer). But he would always be more comfortable in the realm of science and physics and electronics than with the everyday concerns and social niceties of human existence.
In his retirement, Dad was always working on something — collaborating with a former work partner, designing devices in his basement workshop, writing computer programs to track his sleep apnea and scouring the internet for articles about technological advances, scientific inquiry and human consciousness (which he would forward to me).
What is the significance of the notebook? It was, or rather would have been, a glimpse into just what happened in those last six months of his life; a window into a life that had been significantly diminished, likely occurring gradually, in degrees. Would the random lists, reminders, telephone numbers and other minutiae read like notes from a trapped soul yearning to leave its earthly confines?
These notes began as an accounting of the challenging experiences in the nursing facility. It was the first and only time he had to live in such a place, albeit temporarily. I had my own notebook, in which I kept a detailed account of Dad’s health status and my ongoing battles with the staff. He wanted your own record, just as he had kept notebooks for his work projects, even in later years. He kept notebooks to keep track of Mom’s doctor appointments and other care, and later, these notes became an abstract of daily chores, parts and supplies to order, phone calls received and placed and other scraps of information.
But this notebook was Dad’s companion during his most difficult hours. I visited and called multiple times a day, but even so, I wasn’t always privy to his innermost thoughts and concerns.
I wonder now, what would have filled its pages? At first, it would have been important numbers — mine, my cousin’s (who lived nearby), and the names and contact information of doctors and nurses at the facility. There would likely have been scribbled notes about the goings-on there. My own notebook had pages upon pages comprising a litany of complaints — from the doses given of Oxycodone, to Dad’s difficult and demanding roommate who commandeered the facility and its staff, to the move to the long-term wing of the building where he and his new roomie, an elderly gentleman who had trouble walking, were often left to fend for themselves.
There was a middle of the night fall from bed, when Dad’s knee was still weak, and the bed side rail was loose. He laid on the floor for a while (so he told me), yelling for help, until maintenance workers finally heard him. There was the argument between the two men as to whether the bed was properly put together or not, and then a subsequent cover-up the following day. There were my endless attempts to encourage the kitchen staff to give him food that he was able to eat. And late one night, Dad very likely saved his roommate’s life, by checking on him in the bathroom after he noticed he wasn’t in bed. He found the man lying on the floor, blood seeping from his head. The grateful man thanked him, and he was told by nurses the next day that he “did a good deed.”
The notebook may have had information pertaining to those events. Or maybe not. Dad didn’t write prose, like I do, but even those small, seemingly insignificant snippets might have given me insight into his thoughts and concerns.
That nondescript notebook might have given me an inkling as to the depth of his grief over losing Mom, and how he felt about the nurses and aides that came to the house to care for him. I know it wasn’t easy, to be on the receiving end of the caretaker/patient equation. He seemed annoyed at being disturbed from his peace by endless phone calls and visits, but I suspected that he liked the company and maybe even secretly liked being fussed over. He certainly enjoyed complaining to me about all the hoopla and activity. I was so grateful that he wasn’t entirely alone and was kept busy, so that I could go back to my life in Massachusetts every other week or so.
Something happened, though, in those months after the rehab. There were times of great disturbance and anxiety, an onset of various physical ailments that were there before but became more pronounced, and momentary periods of confusion. There were a few trips to the hospital with gout attacks and a minor car accident from which he emerged unscathed (though the car was totaled, and with it, his dignity). That might have been the final humiliation, or perhaps it was just one more step of deterioration for a fiercely independent and self-sufficient individual.
The cause of death wasn’t given as â€œprofound heartbreak and extreme fatigue,” though it might as well have been. In one of our many philosophical debates, Dad said that he thought a peaceful way to die would be to freeze to death, since you just close your eyes and go to sleep. To me, a person who hates being cold and dreads every New England winter, this sounded horrible. In the end, that’s basically what happened. On his death certificate, “stroke” was offered as an explanation as to why, as hard as they tried at the hospital, they could not keep his body temperature from dropping. Several possibilities were raised and then discounted during that week in hell, where I watched a person I loved, whose life centered around his sharp mind, quickly and steadily lose his mental faculties in what is commonly known as hospital delirium. There were moments of clarity in between bouts of paranoia and confusion. Thankfully, he was always aware of who I was, though there was little I could do to help.
As for the stroke, there were a few hints along the way in those final months, though it wasn’t severe enough that a small army of professionals, a helpful cousin and an overly protective daughter noticed as being anything other than occasional old-age forgetfulness. Dad remained mostly sharp, his cynicism and acerbic wit intact.
And yet, that lost notebook. It represented a missing piece of the puzzle that will forever remain a mystery to me, inadvertently left behind in a hospital room after one of those emergency visits. It was stupid of me not to double-check, but at the time I was frazzled, dragging bags of clothing and supplies out to my car.
I bought Dad a new notebook, so that he could continue to document his daily life. Forlornly written on the first page was “lost notebook.” This broke my heart. It was as if he lost 3-4 months of his life. There was to be no record of it, no accounting for anything that happened during that span of time. I will never know the full extent of how he coped, or failed to cope, on his own.
Was it for the best? It’s a clichÃ©d and trite concept, though in a more enlightened moment, I might be convinced that the universe interfered so that the notebook was left behind in that hospital room. Perhaps I was spared of the discovery that Dad was having more difficulty than he let on, and so I continued to believe he was ok living on his own and not in need of immediate intervention.
What would I have done with a man who was antisocial and fiercely proud of his independence? Could I have done anything differently? Better? These thoughts continue to haunt me.
Whenever I visited, it was a battle to keep my strong personality and concerns in check, so as not to have constant debates over lifestyle choices. We were clearly very different people, diametrically opposed in everything from religious beliefs (deeply spiritual versus steadfastly agnostic) to diet (organic pesco-vegetarian versus meat and frozen food aficionado). To live there full-time was unthinkable — for both of us. An assisted living facility? He had an aversion to the neighbors and any social activities. Unless there was a community of retired engineers and scientists who spent their days pondering the creation of the universe and the meaning of existence, that would be highly unlikely.
And so, the story of the lost notebook — that missing time in between visits and multiple daily phone calls, when Dad may have been quietly battling the slow loss of mental faculties and life force. That missing documentation flies in the face of my obsessive need to know everything. And yet, he remained master of his own destiny until the very end. For that alone, I must be satisfied, and indeed grateful, to remain in the dark.
After all, as Dad would often say, “there are things in life that we will never be able to fully understand.”