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
10 thoughts on “The Alzheimer’s Circus”
Reblogged this on zuzusays and commented:
Your writing is so honest and real. I don’t know how to thank you for sharing such intimate thoughts with us, but I believe it will be really meaningful to so many people for many years to come. I wish I lived close to you so we could spend time together talking. You are teaching us to walk with you on this journey and walk with those we love as we care for them. Thank you.
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Zuzu, Thanks for reblogging the post and for your appreciation of my writing and posts. I too wish you lived close by. – Minna
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Reading your posts is heart wrenching. But you are a brave lady for sharing your thoughts, and share you must. Best wishes and regards.
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Jaya, I wish that I were funnier and earlier in the disease, like Greg O’Brien who just sent me his Mea Culpa: An Alzheimer’s Admission which posted on Psychology Today https://www.psychologytoday/us/blog/pluto/201805/mea-culpa-alzheimer-s-admission
I’m the drama queen of Alzheimer’s and really wish I retained more humor, but my situation is not funny to me. Greg’s is, and it shows another angle on this disease. Thank you for reading and commenting. I write because I am still here and can.
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Thank you so much for your blog. I’ve learned so much from you! My husband has early-onset dementia (Alzheimer’s and Vascular). He is in Fisher’s 7th stage. His speech is very limited, but I often wonder what is going on in his brain. What is he thinking about? What are his fears, frustrations? I’m doing my best for him; no one deserves this cruel disease.
Your writing is helping me to better understand the thought process of someone with this disease. You write beautifully and eloquently.
So glad that you are taking control of your care as much as you can. Do take care, and know that you are helping so many with this blog, as you continue to share with us your experiences.
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Carole, My heart goes out to you and to your husband. You know only too well the tragedy that this disease is and how it takes away all that a person can do for themselves. May I ask how old your husband is, and is he at still home with you? If not at what point did you pace him and how did he adjust? Is he still ambulatory (walking)? Is he able to feed himself? Does he fit the Fisher’s 7th stage in all respects?
I am thankful that my writing helps you understand how daunting and complex the world becomes for us, though I do know we as human beings, even with this disease, are different.
I would like to hear more about your husband. When was he diagnosed?
Thank you for writing to me.
Hi Minna. My husband is in Fisher’s Stage 7A. He does fit the criteria in all respects for this stage. His speech is just 3 -4 intelligible words, he is incontinent, and he needs help with all activities of daily living. He still walks, but his gait is quite slow and he is a bit unsteady at times. He was a psychologist, and the irony of it is not lost on me.
He is 69. I saw signs many years ago, but I didn’t know what it was. There were personality and behavior changes and he seemed depressed. I believe he had some cognitive reserve that allowed him to “cover” for a lot of what was going on.
About 2 years ago, things started to progress at a rapid rate. Things escalated behaviorally 18 months ago. For his safety, and for my safety, I placed him in residential care last October. He is content, always glad to see me, and they are able to provide care for him round the clock in a safe, caring environment. I am able to see him every day; he is always happy to see me.
He is still my sweetheart and always will be. If you are interested, you can check out my blog at http://www.oneoflifeslittlesurprises.blogspot.com. I haven’t posted in a while, but I am due to post again real soon. Do take care dear Minna.
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Thank you Minna, your blog always helps me so much to understand not only alz but more importantly what is happening with my wife. She too is a doer and and an active relaxer. So when there is nothing happening she really struggles. She hates being alone.
Connecting with you has been a God send to me. Your comment about learning in reverse and time in reverse really puts it simply but so succinctly
Keep Lookin Up
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Oh Jack, I hate this disease and what it does to me and those of us who have it. You’re a great husband and care partner who is so sensitive to her needs. She’s lucky to have you on board. -Minna
Eldridge Cleaver right?Your intro painting is to die for. Wrong metaphor? You used to be funnier? Dallas
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