If I title this story, it becomes final.
So I won’t title it.
I’ll just tell you about 12 days ago.
12 days ago was Tuesday, August 5th, 2014. I went to see my paternal grandmother. My grandmother is in assisted living, currently under hospice care. She is dying. She’s 84 years old.
She’s a victim of Dementia, of the Alzheimer’s variety. When I say to people, “My grandmother is demented,” they think I’m an asshole.
I’m not. She is. Demented, that is. It’s a terrible and awful disease. It’s funny the connotation the word “demented” carries. I digress.
She first started displaying signs probably 15 years ago. It really kicked in 10 years ago. Her propensity towards forgetfulness and lack of conceptual grasp was a slow and steady creep. My grandfather died in 2005, and we all sat and witnessed from that moment, her slow and steady demise. To say it was heart breaking would be a disservice and disrespect to the English language. In any vast vocabulary, I have yet to find the words to describe the deterioriation of a person’s human being in the raptures of neurological disease. Over the last decade, I have watched her unlearn everything she’s ever known. From how to read a sentence, to how to set the dinner table, to how to pronounce a word, it’s all a breakdown of the simplistic and everyday skills that we all take advantage of. Being able to add 2 plus 2. Being able to connect the dots, and I mean that in a literal form of “Connect the Dots” game. Understanding that a rabbit has two ears, two big ears. And those two big ears is how you might describe a rabbit, and use those big ears as a starting point to draw a rabbit on a piece of paper. You wouldn’t start drawing a rabbit with a bunch of squiggly lines that ran in nonsensical order to get to two big ears, a bunny rabbit face, a round body and big bundle of cuddly cuteness, but a bunch of squiggly lines is how my grandmother started drawing a rabbit when I gave her that simple task as something to do, so that my mother could continue making dinner, because my grandmother had asked approximately 75 times, “Can I help with anything?” but could not actually complete a single, mundane task given to her, such as…setting the table.
So we sat down with a pencil and paper, she and I, and I tasked her with drawing a bunny rabbit. She couldn’t do it. We walked through it step by step. Slowly and with a little coaxing, “What does a bunny rabbit have?” I would ask. She would respond, “Big ears?” And I said yes. So we started with big ears. We moved away from the squiggly lines to two big ears, but my grandmother at this point is, well, my grandmother, meaning she’s an adult. This childish activity requires a lot of patience and deep breaths. Lots of deep breaths. So many deep breaths.
I think this was in 2007. So, 7 years ago. She was 77. 77 in 2007. That was like, the thing of our family in 2007. “Dot is 77 in 2007!” Except she had the mind of a 7 year old. Maybe less. I watched her lose her grasp of simple things, and she became completely child-like and not the woman that I knew as my grandmother. This woman was infantile, trapped in a rapidly aging body.
But, embracing the idiomatic language of the American culture…I can only say, “This isn’t my first rodeo.” My first experience with the effects of Alzheimer’s came to true light in the summer of 1991, just before my 12th birthday. My maternal great-grandmother, Gagar, (This nickname is thanks to my mother, who couldn’t say Grandma, so “Gagar” it was), was in the throes of the demise. I will never forget, going with my Granny, (her daughter and my maternal grandmother, who also happened to be my favorite person in the entire world, whom I lost in October 2013), to the nursing home to see her. Gagar was just a bag of bones, in a hospital bed. Completely immobilized. She was a skeleton with skin, but with eyes that screamed, “Help me,” and me, there as my 11 year old self, could do nothing. I stood there confused, a bit scared, and helpless. I will never, ever, ever to this day, ever, ever ever ever, forget that image. That samskara. That face of just…need. Hurt. Pain. She couldn’t move. I couldn’t help. I was 11. I didn’t know what to do.
She died 6 months later, in January 1992. I was 12.
Here I am, 23 years later, in the same position. With that memory of Gagar, I take it to the other side of my family, to my Grandmom, Dorothy Fleming. My namesake. To the woman that birthed my father. To the woman that only ever did good, and was always the sweetest and nicest soul. The only time she ever got mad at me was when I came to her house, sleepily, and let her dog out without a thought as I entered her house because I was an asshole teenager and it was 7:30 in the morning and all I wanted to do was to go back to sleep, and not hang out with my grandparents. I wanted to sleep. It’s the one and only time she was ever mad at me, which lasted for exactly 30 seconds…I think you get my drift.
So, 12 days ago, I went to see her. She was in her bed. She couldn’t speak. She couldn’t sit up. Her arms were immobile because she had suffered a few mini-strokes, a byproduct of the disease. I sat with her, and could not help the tears flowing down my face. I looked her in the eyes, and I told her what was on my mind. I told her I had traveled many parts of the world over the last year, and that I no longer lived in New York.
Full disclosure: When the disease first set in, she would ask over and over again, “How do you like New York?” I would always say, “Good! Fine. It’s great.” Once, because she asked so many times, I said, “You know, Grandmom, it’s crazy. There was a big, gigantic ape that invaded the city and climbed the Empire State Building, and everyone was terrified…” Needless to say, my dad was less than thrilled with this response. My grandmother, as sweet as she could be, just giggled. Yes, I’m an asshole for the King Kong inference. But this disease is a motherfucking huge asshole, and you deal where you can. Sometimes, you make inappropriate jokes and responses. It’s the only way to cope.
So anyway, 12 days ago, I told her all the things I had done, I had seen. I told her about my cousin’s accident and how he couldn’t come down to see her, but he was going to be okay, and that we all loved her. I continued, even through my tears. And even though she can no longer respond, her words come out as just noises, she looked me in the eyes, and she got teary eyed too. I sat there and held her hand. She started to doze off, and would spring her eyes open. I told her it was OK, and she should get her rest. She finally relented, and I repeated, “It’s okay to let go. I love you. We love you. Let go. I’ll see you soon.”
I went home after about an hour, when she finally dozed off for a nap. I told my mother, “Not yet. It won’t be this week. Two more weeks, and she’ll let go.”
About a week ago, they started her on morphine for the pain. She has abscess under both arms, due to the mini-strokes making her motionless. Even though she couldn’t express it, the pain in her face was obvious.
And here we are, 12 days later, and she’s letting go. We got the call this morning: She has a fever, and she’s stopped breathing a few times. Hospice put her on oxygen to make her more comfortable. No extreme measures. It’s time.
My family and I went to say goodbye today. She was asleep. Her face was drooped to the side, and she was limp. She’s already started the process of going. The lines in her face…the lines of age, the lines of disease…they are gone. Her skin has started to smooth, her eyes are almost glued shut.
I am completely freaked out that I said, 12 days, ago, “…two weeks.” I knew then, and my prediction was right, nonetheless…
I’m relieved. I’m sad. I drank a bit with my father tonight. Tomorrow I will meditate. I continue to pray. I hugged my father as much as I could. I am crying. I am letting go as well.
Hell does not exist beyond the borders of earth. It does not exist for people with bad karma. Hell exists in the form of Alzheimer’s, and it does not discriminate. It does not care who you are, what kind of person you are, who you were, who you want to be. It is relentless, it is brutal, and the only blessing is that it can’t last forever. But a decade can seem like forever, and when it finally ends, you, the living, are made to feel guilty for wanting to flood the streets and scream at the top of your lungs, “Dear God, thank you. Thank you for making this be over. Thank you for the intervention, no matter how long it took.”
I am thankful for my intuition, for my spiritual connections and my ability to leverage these to shed some light on what is happening through my cognitive lack of understanding of what is happening. My spiritual understanding lifts me higher than my cognitive, and I find balance and peace in that.
Through my spiritual being, I accept who I am, I accept this position, I accept what is happening, and I can only let go, and be grateful and relieved for where we are now.
But honestly, sometimes I wish I was a neuroscientist and not a spiritual being. Because as a neuroscientist, maybe, I could help discover a way to find a better understanding of this stupid, awful, condescending, dogmatic, debilitating, narcissistic and life-altering disease, and perhaps find just a little help in this suffering. This disease is a life and invasion of its own. It’s not of the person that suffers from it. It’s an enemy of a very dark and very disguised outfit.
Alzheimer’s, you are a Dick. You take too many good lives. I hope you find the peace you need to stop this madness, because what you are doing to people is truly disgraceful and awful. It’s mean. It’s inhumane. I guess that’s your thing.
(The picture is with me at about 5 with my 2 grandmothers, and 3 of my 4 great-grandmothers.)