I was thinking a lot about a scene from the West Wing episode entitled “Two Cathedrals.” It’s an extraordinary bit of television and the most captivating scene is when President Barlet is alone in the National Cathedral and address God in with a eloquent diatribe. At one point, Bartlet used the phrase “Feckless Thug.” The way that Martin Sheen delivered the line just stuck with me.
I loved that show, but that scene popped into my brain as I’ve watched my mom struggle since primarily with multi-infarct dementia since last fall. One of the most do-good of do gooders has been getting punished regularly, slowly and cruelly. To paraphrase Aaron Sorkin, her sole religion is decency. Her sole goal make the world the best it can be for her family and the followers under that umbrella.
I’m 55 and fortunate that my parents are still with me, when so many family and friends have had their mom or dad taken too soon. When you are this age, you are playing with the proverbial house money.
That imagined scene sticks me as much as a harder real one does. The scene is this past February 9, a day after my 55th birthday. On said occasion, I was at a local er with my mom and dad as mom was rushed there with all the evidence of a stroke (at that point, a whole new avenue of ailments). We collective spent the 8th (my 55th birthday) as my mom got assessed. The following morning she had been moved upstairs for observation and consideration for rehabilitation therapy. The choice was where. A good family friend is the chief of medicine at the hospital and recommended the facility that connected to the hospital. Late in the day, we relocated to a room at the facility. Mom could be cared for, evaluated and a VIP patient all in one swoop. The circumstances left her quiet and a bit disconnected to what was happening, which was hard to watch. We got her belongings stowed in the room and took her out the common area where dinner would be served. The image of her sitting at the table by herself with the windows behind her full of the night darkness will never leave my mind. I felt like it was the best possible thing that could be done and I’ve never ever felt worse doing something supposedly noble.
Her ability to get around had been suspect for awhile. It was largely chalked up to increasing arthritis, then a misdiagnosis of Parkinson’s then the realization that is was something else entirely, something that eventually killed her mom.
My dad and I skulked the winter conditions to our cars, parked back by the hospital, both with the same realization that Mom might not be headed home anytime soon. We each made plans to get comfort take out after the long day. After collapsing into tears and a hug goodbye, I found myself at my take out joint awaiting comfort sweet and sour chicken, with a side of malaise and as I realized this morning (4 months later) grief.
Instead, I’ve got a ring side seat to watch bits of my mom getting taken away by dementia. It hits in phases. Foggy in the morning, clear and mostly herself midday and then the fog settles in the evening. It’s cruel and unrepenting and seemingly never satisfied. And never predictable. It’s the cruelty of the disease that gets you.
She is still here, but bits are getting taken away, painfully, slowly, cruelly.
That makes me both angry and morose at the same time. I’m told that on my sunniest of days, I’m not exactly overflowing with mirth. But this tends to curdle even the sunniest of dispositions. In sitting with her the other night, she looked at me and answered that she was getting depressed and that obviously I am too as she could see it in my eyes. Even then, she’s still trying to fix other people. While at the same time, asked me to write as snotty an email as I could to get staffers at her place reprimanding for patient neglect. She wasn’t wrong. Staffers who could sit and finish their dinners before helping patients back to their rooms. The patients would have to wait. I wrote the email. I can be snotty. I know that is a shock
It’s been a couple months since I started writing this and the similar scenes have been replayed basically every few weeks, a new variation gets staged. There gets a new issue to be dealt with from movements, to falls, to phobias. As her spaces increase in familarity, it dawned on me with the latest trip that my knowledge as been taken for a shuffle. The track order of “Darkness on the Edge of Town” has been replaced with how to find the “good cafeteria” in one hospital. The Yankees’ lead in the AL East has been supplanted with where exactly the coffee stand is in another hospital. And I actually have developed parking strategies for various medical facilities. She tells me that she can see despression in my eyes…I just thought I had the bags. She’s still in there, but it sucks on a scale I can’t measure that she has to fight through such a fog.
Fate doesn’t seem to have much regard as it ought for souls. Nobody deserves the battles brought on by these afflications
“It’s been a real lousy year, Michael”
“Yes, Mom, yes it has.”