Alzheimer’s is a terminal disease that changes the brain. Along the way, many who have it go, what is known in the common vernacular, as completely crazy. This is the main reason the disease is severely stigmatized. It’s why some who have Alzheimer’s end up in psychiatric hospitals, and are prematurely placed in memory care. It’s why many of these folks get medicated (medical restraint). I’ve read on the spouse forum on www.alzconnected.org about the spouses that become psychotic and wanderers, become violent and even criminally insane, and are institutionalized. I myself have been to the edge and back, my poor family members have witnessed behaviors in me in this disease, I shudder to think about when I remember. The difference between the crazy of Alzheimer’s and the crazy of say, schizophrenia or psychosis is that they are not fatal illnesses (although they can and often do shorten a person’s life). Alzheimer’s does and will kill a person along with making them nuts as they live through the stages. As it progresses it affects all bodily functions…mobility, talking, swallowing, excretion, and ultimately breathing. The brain rules the body and the brain tells the person with Alzheimer’s to slowly (or quickly, depending on how fast the pathology progresses) to stop remembering everything from thoughts to basic bodily functions. That’s a simplified version of the process, but that’s what happens. So why is it thought to be a memory disease? Because the brain is losing it’s ability to hold onto itself in the present…everything it has ever learned. Early on that is often recognition and the memories of learned experiences…how to do things…making decisions, complete tasks. Later walking, talking, using one’s hands, swallowing are affected. It’s a reversal of everything one has learned from the time one is born. It’s an unlearning. It’s time in reverse.
At this point regression in the disease has manifested in many ways, but new and markedly, I notice my changed voice. Along with word finding (aphasia), I now hear a child’s voice when I speak, an alien voice, in place of the mature voice I had. I was trained initially in the dramatic arts. As a teenager at the High School of Performing Arts in NYC, I had classes in English Standard Speech, a form of elocution. I prided myself on not sounding like I was raised in the Bronx! When I speak now, I hear my voice and it’s not the voice I recognize. My thoughts form but when I speak there is a disconnect. I’m disconnected from my former self. It makes me feel stranded.
There is only one way out of this illness and there’s no getting around it. I am still here and able to write and communicate, entertain myself, put a face on this disease, de-stigmatize it by humanizing my experience for you, as much as I still can. I make no bones about it though. It’s a horrible disease, and awareness of the losses as I progress are devastating. Life loves life, and nobody wants to say goodbye, but this insidious and treacherous thing called Alzheimer’s is a Holocaust of the brain, and I get to a point…where…
I am using this vintage image of a poster made in 1971, originally made as a parody of the U.S. army’s ubiquitous First and Second World War “I Want You” recruitment posters. I took a photograph of it while visiting an exhibition, Remembering The 60’s, I went to after attending the last Alzheimer’s Association early stage support group. It works well in the context, don’t you think? Me and my dark twisted sense of humor.
I led the way. My husband encouraged me to not take his arm, but instead walk way ahead of him. I read the bronze plaques installed in the cement on the library walk on 41st Street, and snapped photos as we approached Fifth Avenue.
The New York Public Library Beaux Art facade beckoned majestically. I crossed the street and climbed the stairs and entered. My husband followed me. The exhibit was free and I wanted not only to see it, but to be in that space, a place I’d last been in over 3 years ago before all of this started to happen to me. I’d last been there with Raphael, my student, and the memory of my normal self vs. my Alzheimer’s self, was jolting. My sense of occupying this grand space was different. Skewed.
The exhibit is a perfect example of how one can’t really experience another time period. We can vicariously go back to the Civil War through the graphic daguerrotypes of Matthew Brady, who photographed battlefields, camp life, and portraits of some of the most famous citizens of his time including Abraham Lincoln and Robert E. Lee. But we can not experience what he and people of the period experienced. Those of us who lived through the 60’s, recognize the memorabilia, photographs and posters in the exhibit. We lived it, we experienced the emergence of that new cultural Zeitgeist, and were altered by it. I watched the young people who looked at the artifacts, the preserved remnants of that era. I thought about how remote that time must be to them. Those who lived through it might be their parents or grandparents. It also made me think of the saying coined by French writer Jean-Baptiste Alphonse Karr, “plus ça change, plus c’est la même chose, the more things change, the more they stay the same. War, famine, political unrest, the refugee crisis, racism, economic inequality…all factors in today’s world.
Now the idea of hippies and radicals, the counterculture that confronted societies restrictive attitudes towards sexuality and gender, has been subsumed by subsequent generations and the new New left. Conservatism and liberalism, radicalism – categories and types. Current radicalism is #MeToo, an international movement against sexual harassment and assault. The New Left and the Black Power movement of the sixties reinterpreted Depression era Marxism and inflamed America’s conscience and it’s rage. It extended it’s scope to civil rights, gender roles, environmentalism and the use of psychedelics. The old left moved into leadership roles at the academies and nurtured the new New left. This new New Left can live with its contradictions, because of postmodernism. It finds contradiction politically useful.
I am no longer a regular active citizen of the hustle and bustle world. Sounds and the tumultuous stimulus of dealing with life as it was, are beyond my ability. I’ve retreated, I’m retired, but it’s not really a retirement, and it was not my choice. I became ill and withdrew. Now when I go out I’m an observer. I pick fragments of experience and piece these experiences together into a kind of holographic quilt in my mind. I juxtapose everything I encounter, and rearrange the meaning of everything in an attempt to understand. I try to understand what is happening but the world no longer makes sense to me. It’s a dizzying place of activity. I call it an Alzheimer’s circus.
People with Alzheimer’s become increasingly crazed because they do not understand why they are changing, why they need support. I was so independent. Now a sink full of dishes is confusing, and I attack the problem by doing half of them.
I walked leading the way, while my husband followed, but couldn’t be there if he was not there watching me. At the moment I’m directing my care, an oxymoron. If I need care, am I directing it?
I describe my experience, and see that my own words fail me. I use words like hyperreal, fragmented, hallucinatory, but they don’t adequately define this experience.
Why can’t I simply enjoy watching the birds in my garden? Sitting on a bench in the park? Being mindful and meditating? It’s because I was a doer, and I stopped being able to do. I had places to go and things to do. I loved to learn and think and go and meet the day and be surprised and keep my eyes and ears open. It’s quite terrifying actually for sounds to alarm me, for people on a city street to look like obstacles I need to navigate around, to be afraid I will fall because my legs feel wobbly and I’m afraid I will forget how to walk. I have to go slow in a world that is spinning fast. I am trying to keep up…I don’t want to be this frightened old child I have become.
I hear Jim Morrison of The Doors, another relic of the sixties, singing in the recesses of my mind…
This is the end, my only friend, the end
Of our elaborate plans, the end
Of everything that stands, the end
No safety or surprise, the end
I’ll never look into your eyes, again
Desperately in need, of some, stranger’s hand
In a desperate land