A Lack of Emotional Concern

a·no·so·di·a·pho·ri·a

(ă-nō’sō-dī-ă-fōr’ē-ă), Indifference, real or assumed, to the presence of disease, specifically of paralysis. [G. a- priv. + nosos, disease, + diaphora, difference]

I learned a new word today: anosodiaphoria. It is a medical term, not even in the Oxford English Dictionary, that means “indifference, real or assumed, to the presence of disease, specifically of paralysis.” It was coined by Joseph Babinski, discoverer of the famous Babinski, or plantar, reflex in which scraping the sole of the foot determines spinal cord damage. Babinski first noted anosodiaphoria in 1914 in a few paralyzed patients who were all “meh” about their paralysis. Another, more general definition describes anosodiaphoria as a “lack of emotional concern.” A recent medical paper on the subject is titled “Blissfully Unaware.”

My dad and I took my mom to the doctor today–specifically, to the neurologist to receive the results of her annual memory evaluation, an extensive battery of tests performed last week. It was pretty much unnecessary, given what we know:

  • That her mother died of Alzheimer’s.
  • That her sister had early-onset Alzheimer’s and was robbed of seventeen years of life starting in her late 50s.
  • That my mom gets lost and can’t drive a car and can’t remember why (two accidents).
  • That she has trouble forming new memories.
  • That today she asked us at the breakfast table, as we were leaving, twice in the car, and again in the lobby of the doctor’s office, “Now, what is this for again?”

My mother’s neurologist is a young man of south Asian ancestry with luminous brown eyes and a quiet, fastidious mien. He spoke in soft, measured tones, and his approach to delivering news to patients in layman’s terms was studied, as he though he carefully considered each ten-cent word before he said it. His hipster bowtie was flawless.

After addressing my mom’s mysterious dizziness (I’ll tell you about that some other time), he summarized his colleague’s report. Memory exams are administered by a specialist, and the scientific literature has shown a preference for having the same doctor administer the tests over time, such is their subjective bias. According to the neurologist, the exam showed improvement in some areas, decline in others, and stasis in still more. It struck me that he was building to something, but was remembering back to that day in medical school when they explained how using certain words can cause your patients to shut down. “Cancer” is one of those words. “Alzheimer’s” is another.

Last year, this same neurologist told us my mother had “mild cognitive impairment,” but I knew there was nothing mild about her deficits. He described her condition as a “gray area” between normal and not normal and offered hollow assurances that lots of people find themselves there who do not end up with dementia. Today, he was a little more assertive.

Overall,” he said, “there did seem to be a mild trend of decline.”

Such gentle language: the passive voice of “there did seem” rather than “you have.” The uncertainty introduced by the use of “seem.” It’s not a definitive, yes-or-no thing that has happened like, say, getting impaled by rebar that has fallen off the back of a speeding flatbed. Rather she’s just experiencing a “trend.” A trend is a process, a direction, but not necessarily a destination. The cruelly optimistic implication is that trends can be reversed. Furthermore, hers is a “mild” trend, like warming springtime temperatures or rates of marijuana use by senior citizens.

But the neurologist was just warming us up. My mother’s test results now point to “a mild stage of something more progressive, likely some form of dementia.” Whew. That’s a relief! I thought he was going to sell us car insurance there for a second. Dementia, yes, we’re familiar. My mother recently asked my dad if Jeb Bush was president.

Lest we get hopeful, though, he then offered that this form of dementia was likely not of the vascular type. My mom, who did a fantastic job of following along, interjected and asked for clarity about the form of the disease that she does not have. After explaining how some forms of dementia are due to blockages in the vascular system that nourishes the brain, the neurologist finally reached the crescendo of his plodding andante.

“The change in those domains [that she exhibited in her exams] are more associated with Alzheimer’s.”

Well then.

It was the first time that word had been used by a clinician to describe my mother’s condition–the closest we have gotten to the Dreaded Diagnosis thus far. She took it like the taciturn Midwesterner that she is: stoically, silently. As far as she is concerned, there is nothing more to be said, and nothing more to do.

A few hours later, I asked my dad if I could read the report, which the neurologist had promised was written in “accessible” language. That’s when I learned my new word. And that’s when I realized how random and fragile the art of neurological diagnosis really is.

The report found that my mother’s memory did not decline. Great news! Except that her memory was “poor” last year and remains so, as does her learning function. She did experience decline in language (the ability to come up with the right word on queue) and in executive function (the ability to plan, organize, and conduct a task to completion), which I have often summarized as my mother “falling off a cliff, cognitively speaking.”

She asks sometimes about words–today she mixed up “affluent” and “effusive”–but thankfully her ability to her express herself has not yet been compromised. We have noticed the executive function thing, though. That’s when your mom is supposed to be getting dressed for her Golden Anniversary party, a fancy catered affair attended by fifteen out-of-town guests that was months in the planning and has cost thousands of dollars, and the guests have arrived and are all downstairs waiting, and she disappears into the bathroom for too long, and when you find her, everything in the bathroom closet is on the floor, because she started doing her makeup but went looking for a Q-tip, which she has in her hand, and then she got sidetracked somehow, and now she doesn’t really feel like “going out to dinner” anyway.

Her recent evaluation was neurological but also vaguely psychological, in that the clinician endeavored to understand my mother’s mood. Unfortunately, the test was conducted the day after said Golden Anniversary party weekend, when my mother was still high on being around people she loves for two straight days. She did great! The neurologist reported a “confound of any potential mood changes,” and he smiled adorably when he told us there was no sign of depression.

Really.

There was no sign of mood change when my mother raged at me and the front desk lady for no reason on the night of my father’s surgery?

There was no sign of mood change when the anniversary guests were waiting and my mom announced to my dad and me that she didn’t want to go, that she had nothing to wear (she said this while wearing a brand-new, custom-tailored Talbot’s suit purchased specially for the occasion), and that she wished my father was married to someone else so he could take that lady instead?

There was no sign of mood change last night, when my dad and I emptied the kitchen pantry trying to find the dog’s bowls–my mom hides things–and had the audacity to discard her priceless collection of 50 carryout containers and some of the 10,000 cafeteria napkins she’s hoarding, and in response my mom put herself to bed, hilariously fuming, “Fifty years of running my kitchen clearly aren’t good enough for you, so I will never go in there again.” No sign at all?

Not even on Christmas eve, when my mother told me that she thinks about killing herself every day?

Such a relief! And really good to know.

The doctor who did the report also noted that she showed signs of anosodiaphoria related to her condition. My dad and I looked it up together, and we puzzled over its application to my mother’s situation. But on the drive home, I think I figured it out.

My mother can’t remember my name, and someday soon she won’t remember me at all. But so long as she is still herself, she will never, EVER, think that it is ok to disclose the dark thoughts that plague her mind–and certainly not to a doctor, a person in authority, a man. She thinks her dementia is her fault, a terrible, embarrassing failure of her own making. And, while she will admit that it is real, she would rather die than talk about how it makes her feel. Hence whatever it was that she said or did to indicate anosodiaphoria, or “indifference to the presence of disease”: a shrug, a refusal to answer, or perhaps a firm statement like, “It is what it is.”

This isn’t the cheerful acceptance of the green-tea-swilling, yoga-pantsed, meditating Buddhist. No, this is the grim resignation of Ohio farm folk, people who canned their food, darned their socks, and survived barren winters in metal sheds while their babies died of typhus. That’s an actual thing that happened, to my mother’s great-grandmother, but the story’s impact on subsequent generations was profound. There are other stories too–like, the story of how my mother’s grandfather was such a cheap sonofabitch that he wouldn’t let his 40-something year old wife have her baby in a hospital, and he refused to summon a doctor until just before she bled to death. And the half-born baby died of asphyxiation. And my mother’s mother witnessed the whole terrible scene as a girl, and she never told her own daughter, my mom, that she loved her, until the Alzheimer’s devoured the part of her brain responsible for remembering that our people don’t show emotion. Yes, grim resignation is coded in our DNA.

Anosodiaphoria. You could tell, the doctor thought it was curious that my mother doesn’t seem to mind that she is losing her mind. In fact, she’s mad as hell, and since there is no rational place to direct her anger, she takes it out on everyone around her. I feel for her, I really do, at least in the abstract. But in the moment, I often find myself incapable of accessing the empathy, kind words, and genuine emotion I would bestow on literally any other human being in the same situation, up to and including Saddam Hussein.

The reason is because I still can’t quite separate out the fragile old woman my mother is at present from the passive aggressive nightmare she has been all along. As long as I can remember, her default setting is to cast everyone else as her tormentors while she bullies us all into compliance. My whole life, no matter what she said or did, no matter how terrible, I never received a single word of apology from her. And any suggestion that perhaps some elements of my childhood might have gone a little better (or just, you know, my failure to empty the dishwasher in a timely fashion) always resulted in outrageous, sarcastic accusations designed to pathologize any utterance of dissent: “You hate me. You think I’m the worst mother ever. You think I’m a monster.”

It’s a brilliant strategy, actually, because every fight ended with me apologizing. “No, Mommy, I love you, I’m sorry, I love you, I do, I’ll empty the dishwasher right now, I’m sorry, I’m sorry, I’m so sorry.”

At present, this tendency manifests as my mother’s refusal to offer any hint of apology when her memory problems inconvenience other people–like, say, when she compulsively threw away a bag containing $70 worth of hearing aid batteries, or she made me late for work when she hid my car key. Instead, she gets angry at us. We don’t respect her, we don’t care about her, we ignore her–when really, our entire lives revolve around her. My sister says I should pretend our mom has the words “I’m sick” written across her forehead. But what I know is true is that she was sick long before she lost her mind, and I am having trouble forgiving her for that.

Still, I rally. I take time off work, I show up, I eat shit for as long as I can stand it, and then I run away, often after saying something I regret. Then I hate myself for being unable to stay perfectly poised in the exact fraction of a moment where my mother lives, with no before or after, no old wounds let alone fresh ones, as though last night’s Great Tupperware Meltdown and the last forty years never happened.

I admit it, I have become hard. I exhibit a lack of emotional concern. I am indifferent to the presence of her disease.

I guess I have secondary anosodiaphoria, if that’s a thing. But none of us is blissfully unaware.

 

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110 thoughts on “A Lack of Emotional Concern

  1. Thank you for sharing your heart. Standing in the corridors where the generations pass on is not an easy place. But in a sense it is an honour, for the Elderly and the Frail, often the tiresome, forgotten and misunderstood ones, can nevertheless reveal to us our very own humanity. You are not
    anonssodiaphorria…. that word !! Love will carry you through this tough time.

    Liked by 1 person

  2. Although I just came from the neurologist, She had claimed that the usage of marijuana can cause loss of memory, however, after researching it online there are many doctors believe park and Alzheimer’s and be treated for medical marijuana and his assessment. Don’t believe everything the doctors tell you. Unchainthetree.com if not for you then for your family.

    Liked by 1 person

  3. Beautiful and so close to home funny. I thought you were talking about my family! I totally understand where you are coming from and have seen other mother/daughter relationships like you describe. I too practice yoga and it was there that I decided what I needed to do for me. I worried that my mother would die while I or my siblings were angry at her. I dug deep for those times she held me as a child and I adored her. I viewed her as an outsider would not with my own baggage. I decided to defend her case. I thought about what being a woman was like in the 40s and 50s. What it was like to have a mother die at the age of 54 knowing there was a house of children left behind. I thought of raising a family with no money to spare every week. I thought of my own failures instead of asking if she met my expectations I asked if I met hers. This was the most humbling question. It was the question that changed my approach to caring for her. I will never regret the relationship I am creating with her AT THIS MOMENT. Peace.

    Liked by 1 person

  4. I love this! Well, sort of. Its the worst watching one of the people who was always so strong for us melt down like that, but it is nice to hear that other people go through those same emotions. I totally shut down in times of emotional need, complete disconnect. Maybe we are just more normal because we do this? Hope all is well.

    Liked by 1 person

  5. A little over a year ago I lost my father to Lewey Bodies Dementia. His mind faded much faster than his agile body. Physically he was so youthful, which also made life quite dangerous as he would mistake tables and chairs for the hurdles he ran in high school track. He never seemed to lose awareness of his disease, and would seem anxious if we stayed too long to visit, as though he didn’t want his children to see him slowly lose his mind. As a dementia nurse for 20 years, I realize just how diverse the symptoms can be and how the late stages seem as though the death of a loved one occurred long before death itself. Seek as much advice as you can absorb, take a break when you need one and always remember deep down, below the dementia that your mother still remains.

    Liked by 1 person

  6. Such a powerful post. I am in awe of your honesty and to put it frankly- lack of bullshit. It really resonated with me as someone dealing with her her own mother’s diagnosis and also recovering from a serious traumatic brain issue (a stroke) herself. I remember clearly thinking that I will not put my two young children through hell, and I will overcome, even thrive and definitely not be coerced by her less then ideal circumstances. Thank you for sharing this.

    Liked by 1 person

  7. I read this with great attention, because I don’t have a parent or relative (yet) who has suffered from dementia or Alzheimer’s, I can’t fully empathize or appreciate what you go through. What I took a lot away from was how you described your mother (and I am paraphrasing and I don’t wish to insult her or put words in your mouth) as not being the nicest person before she got ill and after she got ill, that veneer or mask when one puts up to hide our less savory bits was gone. She was just her unvarnished self, selfish, self-victimizing, passive aggressive – the lot, without even the slightest of facade to hide the worst parts of herself.
    I am referring to this passage:
    “The reason is because I still can’t quite separate out the fragile old woman my mother is at present from the passive aggressive nightmare she has been all along. As long as I can remember, her default setting is to cast everyone else as her tormentors while she bullies us all into compliance. My whole life, no matter what she said or did, no matter how terrible, I never received a single word of apology from her. And any suggestion that perhaps some elements of my childhood might have gone a little better (or just, you know, my failure to empty the dishwasher in a timely fashion) always resulted in outrageous, sarcastic accusations designed to pathologize any utterance of dissent: “You hate me. You think I’m the worst mother ever. You think I’m a monster.”

    But in spite of it all, you show up and do what you need to do. This is courage and I applaud you.

    Also, as I am sure you are aware, many new studies have shown that family trauma can pass through the generations even if the same kind of trauma isn’t inflicted on the current one. The previous generations trauma you described was horrific and that kind of horror, even if unspoken and in the past, lives with you. And I think your mother inherited some of that trauma from her mother and her mother inherited from her mother etc. Watching your mother die from childbirth is traumatic,and horrific, anyone who allows that to happen to a child is a monster, in my view. To allow your wife, your mother’s children to die because you can’t be bothered to call a doctor or bring her to a hospital until it’s too late to save some money is abusive, it shows that he doesn’t care about his wife and the mother of his children.

    Liked by 1 person

  8. Beautiful post!! My Grandfather had Alzheimer’s disease and it was so hard to watch his mind deteriorate. I was just a child then. I grew up to become a caregiver. Many of my clients also had Alzheimer’s disease. Working with some of them was definitely challenging, but rewarding as well. Thank you for this wonderful post!

    Liked by 1 person

  9. Writing something about your mother in this tone and anger is a very brave act. But I’m sorry for my choice of word it isn’t anger but your frustration which is because of the fact that she is your MOTHER. Stay brave you’ll sail through it.

    Liked by 1 person

  10. My Grandmothet had the same in her early 60’s was a hard pill to swallow but we got through it and on the days she couldn’t remember that was okay too, love heals all wounds and gets you through hard moments and times, hang in there

    Liked by 2 people

  11. Your mother sounds like my mother, but cancer took my mother before dementia could have set in. You have my utmost respect and admiration for sharing ( when it must have been hard to explore, never mind write) with such exquisite precision.

    Liked by 2 people

  12. I’d hardly call your alleged lack of emotional concern as secondary anosodiaphoria. You are aware, probably too aware, of the little you can do about it. Guilt is a good thing anyway, shows you care. Keep at it. Thanks for sharing.

    Liked by 2 people

  13. Wonderfully written. Being the child of an ill parent is always challenging and when you must become caregiver the lines between parent and child blur quickly often leaving you feeling guilty and angry. Just don’t allow it to cloud your mission or rob you of what time you have left.

    Liked by 2 people

  14. So beautifully written, even though I know the topic must have been difficult to move through. I can’t imagine what it must feel like to watch a parent decline like that, but your words have given me a painful glimpse into that reality. You write with honesty, and that is always a wonderful thing to see.

    Liked by 2 people

  15. I am a “green-tea-swilling, yoga-pantsed, meditating Buddhist” — sans the “cheerful acceptance.” Yet, I can *completely* relate to your Ohioan “grim resignation” because I was born and raised in Michigan.

    I lost my father to Alzheimer’s in 2012, and since then, there has not been a day that I haven’t teared up for at least a few seconds as he’s crossed my mind. He was all I had in the way of close family, though I have other family. It took the two of us a long time to “find” each other. He wasn’t always the most sensitive guy, and I didn’t invite him to my wedding back in the 1980s.

    In the 52 years I’d known him before he died, I’d never heard him curse, or seen him lose his cool. By the time he died (before he was no longer able to talk), every other word was the f-word. Yet, by the time he’d received his Alzheimer’s diagnosis, sometime in 2010(?) (a diagnosis he didn’t want to “trouble [me] with” until a year later), he and I had become the best of friends. Unlike you, I was not witness to the daily frustrations of his deterioration because I’d left Michigan more than a decade before that.

    So, though my acceptance isn’t “cheerful,” it is acceptance, nonetheless. Birth, itself, is the beginning of dying, and something will and must eventually take us out. We celebrate our children’s birthdays; yet, each birthday truly symbolizes that they are, in fact, one day closer to death — as are we all. As a Buddhist, I realize that suffering is an unavoidable part of the human condition and that nothing, not money, not fame, not the perfect “boo,” or all the cocaine in the world can change that. My stomping grounds in Michigan were but a few paltry miles from where the comedian/actor Robin Williams grew up, and he was just nine years my senior. If anyone had the opportunity to find happiness, and to give it to so many others, it was he. Depression and the inevitability of suffering were just too much for him.

    When the Lord Buddha entered his paranirvana (*final* death from which he would never be reborn), this was the truest form of “liberation” that Buddhists seek. Many people don’t realize that “liberation” is the goal of never coming back… not as another life form, not as a “ghost,” and not even to stand for a “final judgment.” My point is that life can really “suck,” and it sucks more for some of us than others… It is upon such knowledge that my “acceptance” is based, but it’s far from cheerful. I would describe it as more of a “calm” acceptance based on the fact that I know, without question, that everyone suffers in some way. In fact the “system” that Buddhists follow, known as “dharma,” means something close to “the truth of the way things really are.” So, there is joy in not living in delusion, but not necessarily about our actual suffering…

    Your post is brilliant, and I am so deeply moved by your unabashed honesty and obviously analytical bent. I, myself, blog not only to connect with others, but because for me, “writing is thinking.” My father’s demise was fairly quick in comparison to your mother’s, and many miles away. One minute he was walking and talking, the next minute, he was confined to a wheelchair and permanently inarticulate. I could not, at that time, find a voice to describe my feelings, much less deal with all that it meant. And even today, every time I forget to put my watch on, I wonder, “Is it Alzheimer’s?”

    I have dealt with my father’s illness, after his death, in a somewhat meandering, less up-close-and-personal way than you. I just want you to know that your post has been of inestimable value to me, and that I grieve with you. There is nothing wrong with your grief, not the intensity, not the quality, and not the color. There is no need for you to be cheerful. All I ask is that you realize that you are never alone, and that you consider that it is possible for you to come out of this a stronger, wiser, and more compassionate person than you obviously already are.

    As for your assumed anosodiaphoria, I hate to get all “Zen” on you, particularly because I am not a Zen Buddhist, but what we think (or don’t think) is not necessarily what we are, though it does determine what we become; yet, we are free to change our thinking. You are now taking care of your mother in ways that she, apparently, did not take care of you. She is now the child. There is a type of rare victory in not becoming the type of suffering that someone else was for you.

    Namaste,
    Vivien

    Liked by 3 people

  16. Seriously well written.

    Before she was sick, there was probably the hope she could change*

    Unfortunately that sense she can change probably still lingers along with the behaviors that triggered that desire for change, leaving you angry.

    * Though keep in mind no body wants to become a guilt slave of someone else, where suddenly they have to do whatever someone else says because of every act they committed in the past.

    Liked by 2 people

  17. I understand this -the dementia and Alzheimer’s,which my grandmother had, but also the passive-aggressive parent, the internalized anger, the need to run away after you’ve officially Had Too Much. It’s nice to feel like someone else understands in a weird way. Thank you for posting.

    Liked by 2 people

  18. very eloquent writing… We love our mothers and if we are strong headed as them, we butt heads quite a bit. All we can do is love them, dont hate them or ourselves…. Now that dementia has set in, don’t get the guilty feelings, and continue to be with her.. Thank you for sharing…

    Liked by 2 people

  19. I have zero experience with Alzheimer’s but I have plenty of experience with crazy family and loss. I actually decided to walk away from the crazy. My parents are both gone now but it’s my siblings that are hat sh@! Crazy. Anyway I feel better and more at peace without that crap in my life.

    Liked by 2 people

  20. To learn and deal with a parents developing dementia is a difficult thing. The constant side stepping through mine fields, hoping to avoid outbursts and sudden shifts of moods when in fact there is no declination of where the mine field begins and end, and it seems every day we discover a new form of a mine–a new trigger that just yesterday was nothing… But to have lived a life of abusive via passive aggressive oppression and manipulation, without a moment to catch your breath, to heal from these wounds that seem bottomless, before falling into what must seem an ever bigger pit… Do not hate yourself. Do not hate yourself when you cannot keep your composure. Do not hate yourself when you lose your temper. Do not hate yourself when at times you find yourself thinking even that you hate your mother… Because, what I find so incredibly courageous and honorable is that you remain. Despite the tumult and pain, you do not do what may seem such an easier choice and abandon your mother or even turn away from responsibility and presence. Amidst everything, you are going to doctors appointments, tending the best you can to your mother, and doing the best you can to help and take care of her. You are practicing the model of “the Good Samaritan,” and a model that I look up to. Do not hate yourself. And though I do not know you, and you are a complete stranger, were it possible I would give you a great big hug and tell you I love you. And though the words are hollow and cannot possibly give comfort, know God loves you and you are in my prayers. Thank you so much for your frankness and honesty.

    Liked by 3 people

  21. I hope you’ll be able to see beauty in other aspects in your life that will bounce in this situation and make it lighter. It is hard, but you gotta keep going. Remember those days when you’re still a cute little baby. That woman you are taking care right now is the same woman who held you in every tiny steps until you learned to walk on your own. And even you feel like you’ve become hard, may you be blessed for still being there for your family or anyone who matters. More strength for you…

    Liked by 3 people

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