Moon River: A reflection on living until you are not with Alzheimer’s

It was Christmas 2020. I played the annual phone tag game with my family from overseas. Coordinating with my brother, video calls were arranged to touch base on this special day. But I couldn’t get through to my mother. I continued involving my brother, wondering where she was and why she wouldn’t answer, so he called her himself and she answered. He explained that I had been trying to call for a while and implored her to answer my calls. This was the first time she proclaimed I was dead. She told my brother that she had seen my corpse in the snow. It wasn’t even snowing.

Years ago, I became suspicious that my mother’s brain was not degenerating in a normal, old person fashion. Confusing my son’s camel with a giraffe and asking with surprise why someone would put sugar and milk out when serving coffee seemed to be in a category slightly different from forgetfulness. I begged her to let me take her to a doctor, but she became angry and suggested this was all part of a plot to “put her away.” By the time I convinced her to see a doctor, the doctor certainly didn’t help. She asked my mother who the president of the US was and what her phone number was and called it a day, saying I was overreacting. By the time my mother was finally diagnosed, she was already in the late stages.

Alzheimer's has no cure. The only thing you can do is treat the symptoms and try to delay the process. So we got started on that, very late in the game. About a year after being diagnosed, my mother became delusional. It is estimated that around 25% of Alzheimer’s patients become so. Delusions are categorized as a type of psychosis. There are drugs to treat psychosis, but the USDA strongly warns against prescribing them to patients with dementia because it increases the patient’s chance of death by 1.7 (as compared with a placebo).

So when my mother’s neurologist prescribed anti-psychotic drugs, I asked him about the risks. He replied sarcastically that “if Denmark (where I live) has a better idea, he is all ears.” I took some deep breaths before responding that it wasn’t my opinion, nor that of the culture where I live that prompted my inquiry, but rather the USDA who advises against using them for patients with Alzheimer's. He casually replied that it was a necessary trade-off but we shouldn’t see them as a permanent solution. I wondered why he didn’t start with that when writing the prescription. And if they were not permanent, what is the next step? We made the choice to chemically restrain my mother. And that is literally what the drugs do, the drug restrains the sense-making activity that we do in our brains.

The anti-psychotic drugs left make my mother “a shell of a person” but without them she was psychotic, and experienced violent, graphic delusions. We needed to restrain her for her own safety and the safety of others. Around September, the doctors told us we cannot hope for anything else besides nature to be graceful in taking its course.

When she was off the drugs, my mother continued thinking I was dead. She would gets understandably quite angry when I would try to talk to her. If I were alive, why did people tell her I was dead? When she would be chemically restrained, she would play a script, telling me how much she loved and missed me and asking me to tell my family the same. It felt nicer, more sane, but it was also very clearly a script. Sometimes she would even play it on repeat over an over again without me responding. In October, when she was off the drug, her delusions were so graphic and personal, that what started as empathetic tears from me, snowballed into a panic attack that rendered me grasping for breath. I sought the help of a therapist.

The psychiatrist made me feel even worse by saying that I need to just realize that the person I am talking to is not my mom. This tends to be a common expression I have since learned, when people are trying to help you grapple with a loved one losing their mind. But the reality is that it was my mom, it always was. It bothered me that what people felt fine recognizing as my mom was the drugged up scripted version of her that made everyone comfortable, but when she was drug free, what she said was too difficult to handle so we were expected to just write it off as “not being her”.

When she was in the bouts of an elaborate delusion, I could see in my mind’s eye the neuropaths from her life and perspectives that led to each part of the delusion. In some ways, the more delusional my mother became, the more I realized that what was coming out of her were repressions of her perspectives that she had never been able to make sense of. Traumas that she never felt allowed to process, with perhaps one or two tiny but crucial neural pathways fizzling out between.

There was rape, but she would confuse who was involved. Losing children, but confusing which child and how they were lost. Being a victim, but confusing who the perpetrator was. Slight confusions of space and time can make whole stories seem invalid, when in fact, only the way facts are connected are false. In some ways I felt like my mother was finally trying to express her truth, but her brain couldn’t keep up. Like a child or a drunk person, the constraints on truth were loosened, but the logical structures that should come with the constraints were also gone.

My mother spent her whole life playing a role that sane people are supposed to play. Only in her last year, did she step out of the role playing, and this absence of conformity to common characteristics rendered her psychotic. Robert Pirsig, who had the precious insights of a person classified as insane, describes how a person telling the absolute truth does not get points for sanity. In Lila, he tells that

“sanity is conformity to what is socially expected. Truth is sometimes conformity and sometimes not.”

In my mothers case, it took a disease to allow her to apply sense-making that she had not allowed herself to do before, but unfortunately it was too late for her to find the complete truth. Instead of declaring her non-existent, in a weak & tragically binary attempt to offer support, it would have been more comforting if our society and psychologists could think like anthropologists or linguists, or maybe even autists, and explain this important nuance. Maybe it is not easy enough to simultaneously maintain the scripts we are all complicit in shaping, and accept that the truth is often way off of them.

My mother died on December 3rd. I shared the below at her funeral. If you are experiencing the decline of a loved one to this horrible disease, know that you are not alone. Your loved one’s mind is changing but the nodes in their brain are still theirs. They still exist until they do not.

I went to the US in November, knowing it would be goodbye. Doctors gave Mom little time and, due to Covid 19, it had been over 2 years since I last saw her. In that time Alzheimer’s changed her mind. Doctors told me “Don’t worry, it’s not her”. But it always was. Facts don’t change just because we lose the connections between them. And maybe sometimes the energy we spend trying to make sense of things, can be harder than our biology deciding it is time to stop.

I sat beside her as she drooled and closed her eyes, unaware of my presence. This closure was just for me, her last actions as selfless as her life. The Hallmark channel played an unrealistic drama, as the other patients in the lobby sat in varying degrees of discomfort, the lack of realism comforting them as they waited to die.

The next thing I know Frank Sinatra started crooning:

Moon river, wider than a mile I’m crossing you in style some day…

Suddenly, Mom lifted her head up and her deep blue eyes set on mine in a way that was crystal clear.

“Mom,” I said.

“Yes, Dear.”

“You know who I am(?)”

“I definitely know who you are,” she mumbled to me as if to say, “how could I not know who you are?” She then told me she loved me before closing her soul off to me for good.

Oh, dream maker, you heart breaker,

Wherever you’re goin’, I’m goin’ your way

My Mother had dreams but she gave them away, watering unknown seeds to grow another day.

Two drifters, off to see the world

There’s such a lot of world to see

Her sacrifice unwelcome, an unwished for gift, made shapes in our relationship I wished I could fix. But these same patterns, I came to deplore, pushed me to dig deeper, to wander & explore.

We’re all after the same rainbows end

Waitin’ ‘round the bend…

Through her pain, I find courage, to become & to be. She never told me how, just adjacent possibility. Symbiosis a desirably difficult ingredient to love.

My huckleberry friend, Moon river and me