Last night a Facebook friend was using the Archaic Rap meme to obfuscate some song lyrics. I challenged him to start using only Steely Dan songs, and soon, we kinda had a party going. His friends were into it; the things people were coming up with were not only funny, but really challenging, and I was having fun texting the results to Tuck, Ben, and my brother-in-law and sister. I thought: wow, my dad would have been cracking up at this. He might have even tried to make some up. I pictured his big round Charlie Brown head, all red with the exertion of laughing.
I slept in today, and when I came downtstairs, Ben told me he “had an update”. That is the tacit wording for news about my dad’s condition, and since I’m on the special voluntary “last to know” plan, This was an update Ben had gotten in the middle of last week. For this I am grateful; rather than have to ask a bunch of anxiety-producing questions, Ben has already asked many of them — either speaking to my father’s legal guardian, or to his own father, who is an attorney and helps us with a number of family legal issues — and has answers.
The update was that my dad was home after a visit to the hospital, but that his care now was considered hospice care. We understood that he was no longer mobile, and had not been verbal for some time. The colorectal cancer which had been going untreated as a way to hopefully expedite his passage had, indeed, spread to his prostate.
The eminently practical guardian had given what Tucker called “pizza delivery” timeframe in which to anticipate his death. “Could be two weeks, could be six months.” There will be papers to sign, decisions to make about what to do with the house my sister and I will suddenly own, and a lot of hours spent wrapping things up.
From an emotional standpoint, there is nothing much to wrap up. Not knowing when things will happen is like driving a stick shift but not having any idea which gear to put the car into. I am ready to do what is necessary, if somebody would just tell me when I’m supposed to start. Knowing all this action will likely be taking place during what is already an almost laughably busy time — owning a new business that is growing fast, Tucker preparing to apply to Doctoral programs, the holidays and Parade of Spirits Liberty Lands coming up… hours, and energies, will have to be put into the practicalities surrounding my father’s death that will undoubtedly put stress on us all.
Early on in this particular journey, a few years ago, Tucker had said that when the time came for Ben and Tom had to go to my father’s home to assess personal property and make decisions about what would be put in storage or sold, he wanted to accompany them. He reiterated this desire tonight.
When he had originally said this, it had worried me; I did not want Tucker identifying any part of himself, or my father’s house, with what an aging adult with Asperger’s Syndrome, would be like. Of course, a big part of my early relationship with Tuck was explaining to him how much of my father I saw in him, and that led to important discoveries for Tucker, but only in relation to defining his Asperger’s Syndrome.
Like anyone on the spectrum, Tucker’s Asperger’s Syndrome is inseparable from his identity, his personality, and is part of what makes him who is “is”. But it’s not all of it. This was also true of my dad, and unfortunately, much of what my dad “was” wasn’t very good. From a purely civil rights standpoint, people on the spectrum have the same right to be saints, savages, or abusive assholes as any neurotypical person does. But while there may be personality “traits” associated with autism and Asperger’s, it is my father’s actions throughout his life — and his inability or refusal to take responsibility for them — that define him more than any of his “quirks”.
In 2015, Tucker and I attended the Neurodiversity Initiative in Washington DC, we were super jazzed to be hearing John Elder Robison speak. He had inspired us both with his books, and in that day of the conference had lit a fire under both of us in regards to activism. When we all introduced ourselves around the table on the morning of the conference, I said that my father had Asperger’s, and now also had dementia.
Everyone at the conference ate lunch together at Panera when we broke halfway through the day, and on our walk back, John kept pace with me alone for a few minutes. He wanted to let me know, he said, in reference to my father, that it was very unusual for someone to have both Autism Spectrum Disorder and dementia or Alzheimer’s. He said that the autistic brain was more neuroplastic than the neurotypical brain, and that the statistics bore out that the likelihood of either of those diseases later in life was much lower for an autistic person.
He wasn’t challenging me, just stating the research. It is no surprise that my dad would be an outlier when it came to co-diagnoses. He was an outlier in everything. I feel certain that his rigid and repetitive lifestyle, particularly during the years he lived alone (and then worked from home, alone), had some effect on the progression of his dementia.
While the comfort in routine may be typically Aspergian, the extreme degree to which my father was permitted to carry it out, because of his isolation, was, thankfully, atypical. Sometimes he did bad things, sometimes he did good things, frequently he did things that were misunderstood by others, but my father was more alone in life than anyone else I can think of, and he worked hard to keep it that way.
I didn’t like the idea of Tucker wanting to go to my dad’s house, certainly not the way I remember that house once my dad had full reign of it. The deflated black balloons tacked to the spot above his desk. The kitchen ceiling, with its “damp spot” which my dad had chosen to remedy by creating an intimate and enabling relationship with it over the years, not by fixing the leak, but by continually scraping away at the damp discoloration it created, with a spoon, until about a third of the ceiling was no longer there. He liked this progression, and was always quick to point out his latest efforts with it.
Things like this had, and have, nothing to do with the person my Tucker is or will become, and I didn’t understand (or like) why he was so set on going to that house. Maybe it was just because the other “men of the family” — Ben and Tom — were going to it. But sense of duty didn’t seem to be the main draw. “I want to see,” he had said.
I understand now that there are not the same things to see. For the years my dad has been sick, the house has been being prepared for sale. It’s probably in better condition than it ever was when I was growing up there. Still, Tucker wants to go. While we still can’t place this particular day on the calendar, we know it is sooner than we might have anticipated it was a week ago. If Tucker and Ben are there, what will I be doing, and who will I be with? I’ll have to make a plan.
Early in the day, this “update” had given me a surge of relief, but also a migraine. Medication, and hours of watching “Space Ghost: Coast to Coast” with Tuck and Ben while the kids played Minecraft doesn’t seem to have hurt, or helped. I will just have to wait and see what tomorrow brings, and accept that it may not be anything to act on, just like every other day so far.