Kiddo and I had an archery lesson. I managed a few bullseyes. The rest were hers.
Today is my 51st birthday. If I ever have moments of doubt about how well loved I am, all I need to do is remember how, each year on June 10th, the tiny computer in my pocket practically explodes with messages—texts, emails, calls, and DMs from every social app I use. It’s such a treat! But more than that, it’s a true gift, a kind of medicine you all offer me. It gives me a deep, healing sense of gratitude and relief: that I am loved, that I can love. There were times in my life when those truths weren’t as clear as they are today.
My 50th year was split in two by the death of my mother. When I think about those rugged first six months and compare them to the relative ease of the past six, the contrast is so stark it’s hard to comprehend. Those heavy hospice months feel hazy as a dream lost upon waking. Maybe that’s a blessing. What has remained clear, however, is the unwavering support I received from my community. Not once in the past 365 days did I feel alone or abandoned. I knew, in every moment, that comfort, help, and connection were always just a tap away on my phone.
As I begin my 51st year, I’m gonna keep working to earn that love and support. We all deserve it, but it also takes time, care, and attention to cultivate. That’s clear to me. May each of you receive the love and aid you deserve, and, most importantly, may you find the grace to welcome it in.
[Nine of Swords from Tarot of Mystical Moments by Catrin Welz-Stein]
My mom died six months ago, right before Christmas of 2024.
And I have a confession.
But first, allow me to state a few things before I share my admission. I want and need to, so you have a sense of how things came to pass and what it was like.
What it was like, sadly, was a long, lingering end brought on by dementia—a fate, if I may be melodramatically idiomatic, I would not wish on my worst enemy. And before that was a steady, six-year decline that decimated every aspect of her cognition as well as her physical and her mental health. It was also a state of affairs that ground our lives into a surreal, pandemic-fueled, twilight zone of isolation, lost memory, and fading abilities.
To say that my mother’s dementia, decline, and death also impacted every aspect of my mind, health, and happiness would be fair.
There seems to be some confusion, even among her providers, about what type of dementia my mother suffered from. Alzheimer’s? Vascular? Lewy body? All these diagnoses were bandied about in the last years of her life. The distinction, or at least the diagnostic codes in her chart, did ultimately impact the care timeline and her access to hospice, but generally speaking, as far as I was concerned, not much else. Dementia is dementia is dementia, and it’s all fucking awful.
***
In the spring of 2018, we did not have one of those labels, but it was still clear, beyond any shadow of a doubt, that what was happening to my mother went well beyond “normal age-related cognitive decline.”
My stars were aligning… I was laid off from my job of 23 years, had split with my ex, and the kid was bound for kindergarten. I moved back to my childhood home, took over the management of the household, and became my mother’s primary caregiver. I remained so until the end. 6 long years.
Let me be clear: caregiving for a person with dementia is different from caring for someone with other disabilities or even another kind of terminal illness. The death of someone’s mind is something no one is prepared to witness, and we are all depressingly ill-equipped to cope with.
In Travelers to Unimaginable Lands, Dasha Kiper writes about how our innate cognitive bias makes us incapable of fully believing and adjusting to a loved one’s cognitive decline. She explores the caregiver’s brain’s staunch refusal to accept certain fundamental truths about the situation and their loved one’s own brain and personality as it is destroyed by dementia. This inability can cause bewildering suffering for the caregiver.
On the surface, we understand what is happening and how our loved one is changing, or at least we claim to, but underneath is a current of denial and refusal that cannot, for all our efforts, be consciously dismissed. We know things about what is happening, but that knowledge does not help us feel differently and thus does not help us act in ways that would be most helpful and healing for ourselves or our loved ones.
If you have any inclination to care for a partner or an aging parent with dementia, I recommend that you read Kiper’s book before you do. I wish I had read it before I took on the role. Not that I could have changed the way my human brain was wired to think and understand what was happening to my mother, but perhaps I could have met myself with more grace and kindness as I began to experience how the impossible nature of the situation was impacting me.
***
Six years. Things could have gone so many ways. There was always the possibility that she would die suddenly—a heart attack, stroke, COVID, a fall down the stairs, anvil out of the sky… Anything. But in the end, it was the heart-wrenching slog through hospice: four months of around-the-clock care, aides, nurses, volunteers, chaplains, social workers, diapers, chucks, bed baths, spoon-feedings, and on and on.
When hospice began, I noticed the unsolicited advice from people in my family and community shifted from kind, encouraging calls to mind my self-care to stark warnings about preparing for the inevitable. Statements vaguely suggesting or pointedly insisting that one’s world is inexorably altered with the death of a parent, especially one’s mother.
I was informed on more than one occasion that a person’s life is divided into two parts: before their mother dies and after. I was warned that grief would consume me in ways that I couldn’t prepare myself for. I was told that there was a part of me that would never be the same. The dire prognostications came thick and fast.
Part of me imagined this could all be true. I was, of course, familiar with the similar unintentionally unheeded warnings around pregnancy, birth, and parenting a newborn. Warnings that, though my ears heard the words, my heart and mind remained somehow oblivious to. There are things in life that cannot be accepted without the perspective of experience; realities that must be experienced to fully grasp. I get it.
Like the deprivations of the fourth trimester or that biased denial baked into dealing with dementia, I can acknowledge that grief must be lived to be believed.
***
My mother’s final months in hospice were, unsurprisingly, the most difficult stretch of caregiving yet, and arguably the four hardest months of my life. Not because I was emotionally preparing for my mother’s death, but because tending to the bodily necessities of someone who is slowly wasting away—as well as my own emotional needs is, frankly, enough. There was absolutely no room for planned or spontaneous grief—anticipatory or otherwise. At least not for me. Even if my responsibilities had been fewer, my needs met, and if I had increased bandwidth to manage more feelings, I don’t believe things would have been much different.
When she finally passed, a new chorus of kind, well-meaning voices reiterated many stories about what mourning a mother looks like. Some reasserted the non-linear process of grieving. Others warned me of unexpected transformation and profound longing. I braced for it—but it never came.
This is the first time I have publicly admitted to something that has been troubling me. Here is my confession: I am not grieving my mother’s death.
If I were worried about the impact that statement might have on your opinion of me, I might quickly add that seeing the end of her suffering was enough to mitigate my grief. Or I might try to explain that the end of hospice and the grueling work of caring for her brought such a complete sense of relief that there was no room to feel anything else. These things were indeed true. I did experience waves of intense relief for both her and me after she left us.
I might expound eloquently on all that and avoid sharing the deeper truth that hurts my heart more than most. Here, I’ll say it again so we are clear:
I am not mourning my mother’s death. But I am feeling something…
A hot flush of shame when I remember that my mother is gone, and I am not grieving the way the world expects.
A wicked envy that swallows up my heart when I hear people speak of the great sadness they experienced when their mothers passed.
A brokenness that has been part of me for as long as I can remember.
***
Folks have many incorrect assumptions about what my grief looks like, how wild and vast it must be, or that I have been forever changed by the loss of my mother. I don’t always correct that last assumption because it is true. I was forever changed by the loss of my mother. But here is the god’s honest truth: I lost my mother when I was a child.
Due to what I can only assume was a staggering confluence of inherited and generational trauma, birth order, nature and nurture, unexamined and masked neurodivergence, and just plain shitty circumstances, I never formed an attachment to my mother.
In fact, I resolutely rejected any attachment to her.
When my young mind was forming and learning, I intuited that my mother (and my father, but that’s a different essay) was not safe to rely on or allow myself to love. At some point, before I had memories, before words even, I determined that I would rather hide from her and any affection she might offer to keep myself safe.
This was not because of any overtly cruel or violent behavior from her (never mind the spanking). She was not a mean or malicious person–not by a long shot. My mother was well-loved by many, many people in our extended family and community. People thought she was wonderful.
Confoundingly, those who knew and cared about her have made some of the most erroneous assumptions about what she left behind and how I am grieving.
I think my deeply avoidant/disorganized attachment is related to the sad reality of what she was incapable of offering—because she was, like me, so fundamentally wounded by her own traumatic upbringing—with the loss of her own mother at the age of four and the subsequent abandonment by her father. Rugged stuff.
Moreover, in the time immediately before my birth, she was grieving the loss of her first son, a newborn who never came home from the hospital. By the time I arrived, I imagine her firmly overwrought by her own grief and caring for her two existing children while rigidly tending to the needs of an emotionally abusive husband. It’s no wonder she couldn’t meet my needs. I felt rejected by her, and my young mind and nervous system, in turn and quite automatically, rejected her.
Smart strategy, right? If I did not leave myself open to further pain or emotional abandonment, then how could I be hurt or rejected again?
***
I know I am not the only person in the world with attachment trauma, but I have spent so much time thinking of myself and the lack of maternal love in my heart as aberrant. So, I worry you might read these words and judge me, or worse, not believe me.
I imagine you could consider what I’ve said, and the very nature of the love that you shared with your mother might preclude your understanding of how real and injurious this early loss was, and how it derailed the course of my life.
Please don’t think I am being hyperbolic. I have lived with grief. I have experienced chronic pain since I was five years old. I have struggled with depression, anxiety, low self-esteem, and toxic shame since I was an adolescent. I cut and burned myself. I fantasized endlessly about how to end my life. I’ve bottled up so much fear and self-loathing that it flavors everything I do, feel, and say. I’ve self-medicated with food, drugs, and alcohol for almost my entire adult life. And even after decades of therapy and hard fucking work, I still entered my 40s playing host to one of the most damning self-critics I can imagine. Some of you might know exactly what I am talking about. Some of you may find this all too hard to believe.
Let me assure you, this kind of wounding and its impact are quite real. In her book Mother Hunger, Kelly McDaniel outlines the life-alteringdamage this type of attachment injury can impart. McDaniel argues there is literally no part of a daughter that is not warped and stunted by this “hunger” for the nurturance, protection, and guidance assured in a secure attachment with one’s mother. Furthermore, it’s generally acknowledged that chronic pain syndromes like migraine and fibromyalgia, as well as gastrointestinal conditions like IBS–all of which I have been diagnosed with—are linked to childhood trauma. How very textbook of me.
In all these senses, perhaps it’s true that my life can be bisected into two—before I lost my mother and after. I just happened to have stumbled around the vast majority of my years after a slow-moving, hidden calamity.
***
The term “ambiguous loss” was coined by Dr. Pauline Boss to describe a type of loss that occurs without clear understanding or a likelihood of emotional closure, like attachment injury caused by rejection between mother and child, or, likewise, the slow decline of a person with dementia.
I’ve lost my mother twice. I have no explicit memories of my childhood loss, only implicit memory buried in my body, expressed as fear and pain. And even as dementia stole her away, I don’t have a clear understanding of when she was finally taken. At the moment of her physical death? When she became nonverbal? When she stopped recognizing us? Who can say?
***
Mother’s Day has come and gone.
Many kind souls reached out that day to extend love and care, specifically citing my mother‘s passing and assuming I must be feeling a certain way. When the first message arrived, I was disconcerted by the shame that surfaced. It hadn’t even occurred to me that I should feel a certain way just because it was Mother’s Day and my mother was gone. It hadn’t even crossed my mind. Her February birthday didn’t register either.
***
Platitudes like “Grief only exists where love lived first” make me wanna growl with displeasure.
Really? Is that always true? The jealousy I feel when a person emotes about the love they share with their mother (or father) eats away at me in a deeply toxic manner. It also doesn’t hold up to much reasonable scrutiny. When I consider the enormity of what they must feel when their beloved parents dies, my envy is replaced with relief—relief that I will never have to face such pain. But then the jealousy returns.
How do I mourn something I never had? When I allow myself to soften around this, I realize that grief, no matter how or when you lose your mother, is just filling a hole where love should be. It doesn’t matter whether the love was ever there to begin with. I’m sure that feeling active, engaged love being stripped away when your mother dies is unbearably painful. Beyond words. Of course it is. But so is the pain of feeling nothing stripped away when she dies. It’s awful and it’s unjust. And what, if not the pain of grief, have I been experiencing all these years?
***
I recently read about the concept of disenfranchised grief—a form of mourning that, due to societal or familial pressure, cannot be openly shared or expressed. There’s no validation, no public ritual, no collective mourning. This kind of hidden grief can lead to profound isolation, difficulty processing emotions, and trouble finding closure.
Ambiguous loss. Disenfranchised grief.
I’d give my eye teeth for something straightforward and clean, something that made sense, so I could feel in the ways others, and our culture, seem to expect me to. The way I wish I could.
Sometimes, I imagine there’s a fixed allotment of pain that everyone is destined to feel over the loss of their mother. For some, it’s a hurricane of sorrow after losing a beloved parent. For others, it’s the slow, steady drip of shame and despair from a life devoid of their love—or love for them.
Neither is easier. Neither is harder. Both are awful. The shape of the grief may differ, but not its impact, and either way, you spend the rest of your days trying to rebuild what was ripped away with their loss.
***
My mother did her best. She loved me in her own way. I know that.
I owe her a debt of gratitude: for my life, the roof over my head, my intense and fruitful love of nature, my excellent cooking skills, and more. Most importantly, she served as a model of what it means to be a decent, conscientious human being. I must also acknowledge that the suffering of my childhood passed through our generations, linked by a heavy chain forged by the trauma she endured in hers. We both suffered, and arguably, she had a demonstrably harder time than I.
But none of this changes the way my heart aches, nor does it soothe the burn of a lifetime of sadness and pain. She was lost to me. And in losing her, I lost the person I was meant to be. It wasn’t entirely her fault, nor was she blameless. I will spend the rest of my days trying to find my way back to myself—and to prove to myself that I am safe, that I am loved, and that I am not alone.
I’m grateful for the work I did—and for the struggle of caring for her as she slowly transitioned from this world—because it illuminated so much of what was broken in me and in our relationship. Once I truly see something, once I get my teeth in it, I work to accept and heal it to the fullest extent possible. It’s what I do. And without the recognition and processing of this lifelong grief, I wouldn’t have any real chance at healing.
I began writing this hoping that it might make me feel better. That if I were transparent about the disconnect I felt at the time of my mother’s death and if I acknowledged the quiet, relentless grief that has been with me for so long, something might shift. Perhaps I can take some of this disenfranchised grief and sanitize it with sunlight.
If nothing else, I’ve come to understand that some closure doesn’t look like grace or peace. Sometimes, it just looks like telling the truth. I’m going to keep looking to that truth, and loving myself as fiercely as I can manage.
Friends, if grief is a hole where love should be, then maybe healing is learning to live honestly and gently beside that emptiness.
Last week, in a revelation that may surprise many—but perhaps make good sense to a few—I received an autism diagnosis. This would have come as quite a shock to me two years ago, but in the year and a half since my ADHD reveal and bombshell dys-agnoses, so much neurodivergent sand has shifted beneath my feet. I plan to share much more about these discoveries and my experience with the DysAuDHD neurotype, but I need some time to collect my thoughts.
In the meantime, please wish me luck as I begin the liberal arts program at Delaware County Community College this fall. Living with the internalized shame of multiple undiagnosed disabilities, higher education always felt inaccessible to me. Now, not so much. Now, I feel more discerning and capable than ever before. Part of that is maturity, but the lion’s share is knowing there’s a reason why my brain works (and doesn’t work) the way it does—and a reason I feel the way I feel. A reason that isn’t just me being a neurotypical failure. This diagnosis is supremely validating, and it has brought me so much relief. The more I learn about myself, the less I have to be afraid of.
I’m still sad (to put it mildly) that I didn’t find—or wasn’t offered—the support that could have made a difference in my younger years. The truth is, most of my life has been ruled by a set of rigid, self-limiting beliefs that I was the author of. Or perhaps trauma was the author, but my inner children and I set about rigorously defending them. Time to do things differently. Time to try some new, previously impossible things. I can’t wait to see what I’m capable of once I get out of my own way.
P.S. If you are laboring under any suspicions and are considering a neuropsych eval or assessment for yourself (or a loved one), DO IT. The process can reveal things you didn’t even know you were hiding from yourself—conditions that might be holding you back or causing hidden shame, even as you plod along blissfully(?) unaware of their effects. Look and see what you can find. Knowledge is power, friends.
It’s like sunlight—illuminating, in my case, the dark alleys and gloomy cul-de-sacs of my learned limits. And sunlight, in the words of a very wise friend, is a powerful disinfectant.
P.P.S. Oh, and goodness. Ugh. Some of you may be wondering if it was smart to share details about this diagnosis with a certain reprehensible individual talking despicable nonsense about abhorrent registries. I can’t know whether some ethically dubious, patently illegal, or straight-up diabolical reason will someday make me regret this admission, but I refuse to live in fear of that possibility, especially when honoring and sharing this knowledge is so affirming and healing for me.
I have consciously and unconsciously hidden so much to protect myself. No more of that, thanks.
So, for reasons I’ll go into later, I have been trying to learn some stuff
A few weeks ago, I took a deep dive into relearning some rules about sentence structure and punctuation. It was challenging. It took loads of repetition and practice to lock in some of the grammar rules that I have been missing since my school days. Still, I was rewarded with some new (old) insights and a burgeoning confidence around my writing. It felt hard but rewarding.
This week, I attempted to do a refresher of some basic math skills.
Fuck me, man.
All the work and review I have done has felt wildly ineffective and frustrating in ways that make me want to scream and jump off a bridge. Grappling with elementary-level math problems has made me weep. Piteously. Several times. And while I stumbled around the edges of my dyslexia when I was learning about sentence structure, I am *drowning* in my dyscalculia. I can feel my brain struggling in ways I have worked assiduously to avoid for most of my adult life. There is an engine seizing abruptness to when I hit a learning disability wall, and when I do, there is little room for course correction. It’s difficult to articulate, but there is this sort of silent white noise that takes over my mental processes, grinds my processing speed to a halt, gums up my working memory, and leaves me straight-up reeling. And friends, the emotional stories tied to those sensations are brutal. I have, historically, seen them as proof of my profound ineptitude and confirmation of my well-earned shame.
This week has been a lot.
So, I am still slogging away at math that my 11-year-old can do with ease. It’s not making me feel very good about myself, but I’ll keep trying. And if I can take any pride or satisfaction from this godforsaken process, it’s in that I have just not given up yet. Send me fortitude, friends.
I have everything and nothing to share about this. I am not even sure what kind of post I want or need this to be. About her? About me? I am left living with only one of those things, so here we go.
As most of you know, I’ve been living with my folks and have been their primary caregiver since the summer of 2018. The decision was largely made because, though she didn’t have a formal diagnosis at the time, it had been clear for years that my mother was developing some manner of dementia.
There were so many moments in the past 6 years that will live, branded into my heart and mind. Tedious, Sisyphean days and excruciating stretches of time that were heartbreaking and frustrating beyond all measure. And throughout all of this, bright moments of joy, reward, and growth that took my breath away.
And in the end, hospice was the stage when I had the most support but it was also the most labor-intensive and emotionally draining. I worked so hard each and every day to provide the hands-on care that was required and to do right by my mother. I plumbed the depths and scoured the dark corners of my heart and head to find acceptance around our relationship… and the lack of it. I lost my mother in pieces over years and years. Ultimately, I did the best I could with what I was given and the tools I picked up and honed along the way.
I am deeply gratified that I could grant her wish to stay in her home until the end. Glad too that the care she received was offered by her family and a small group of dedicated and loving professionals.
And despite all of this, in the end, she was so profoundly diminished and she was truly suffering. And when it came time for her to pass, she slipped away into death in the same manner she lived her life – gently, cooperatively, and without much of a fuss.
I see how grief will stay with me for as long as it chooses; grief over the trajectory of my mother’s life and her final years, grief over the stress and drain of being a caregiver – especially through the entirety of the pandemic, grief in unexpected colors and flavors. Let it come.
But I also know that I am not mourning my mother’s passing. I am glad for her. She has been released. And this atheist heart knows that this is a gift. Even oblivion is a kindness compared to an agonizing end brought about by dementia. I am relieved for her and for myself.
Let her rest in peace and wholeness.
And may I remember the lessons I learned, the grace I tried to inhabit, and the privilege it was to endure this trial while simultaneously reaping the immeasurable rewards.
Yesterday, my dad used a Le Creuset baking dish to try to fry an egg on the stove top. When he cracked the egg into the dish, it shattered into 30 pieces.
Not a fry pan!
Today, my mom put toothpaste on a bar of soap in order to brush her teeth.
Not a toothbrush!
THIS later insanity, I caught in the nick of time. I was not so timely as to prevent the demise of my favorite little baking dish.
That my mom can no longer eat certain foods, and/or needs help in the bathroom and on the stairs.
That I have begged him on more than on occasion not to watch violent or sexually explicit tv while the family is likely to walk into and wish to spend time in the kitchen.
What the hell happened? How did I just drop off the map in March and, quite literally, forget that this blog was sitting here? I’ll tell you. COVID happened and they sent my kid home from school and she has not been back since. A spring, a summer, a fall and it’s now December. So much has fucking happened. When the pandemic started we said wishful things like,”by the time it’s our birthday” or “by Halloween”. God. It’s so bad with no end in sight.
Let see, first weeks of what I called Homeschooling, then a month or two of actual virtual school, and then summer vacation. That went smoothly enough. It was hard, but we escaped to play outdoors with friends from time to time, we swam in a river in Maryland several times, and we waded in our own like a slice of kiddie pool heaven in the backyard. The most noteworthy thing was my hair growing back. Sounds easy enough, but it was a long slog to be sure. So much anxiety about staying safe and healthy. The kid took up all of my free mental bandwidth and I honestly think I completely forget about this blog by April 1st.
Half a year passed. September brought disaster. My mom got sick with sepsis and spent a week in the hospital. Had I been writing here during any of that, you would have heard an earful about hospital delirium and how shocking it is to finally see a dementia patient so confused they are willing to poop in a cupboard. But during all of that, I steadfastly did not remember this blog!
I chose to keep the kid out of hybrid learning in order to keep us all less exposed and that has been a fucking nightmare. Months in, I think we are finally hitting our stride, but it’s still not easy.
So, things are changed so much. Life was turned upside down, not one but three times.
What, you might wonder, got me thinking about this place again? What prompted me to return? I got the bill for the hosting. It really took an invoice to jog my memory.
So that it. The quickest, bare bones update I can muster. I have decided to pay the bill and see what I can offer. Stay tuned.
My Aunt died today. A quick and intense battle with ALS. I guess if I could choose 5-month struggle with ALS or years and years with Alzheimer’s… oh, man.
So I told my mom first thing in the morning. She is weirdly spared her grieving today as she can’t seem to remember for more than about 5 to 10 minutes. She remembers the hours we spent with my aunt last week. With driving, It was a whole day affair. My aunt was mostly immobile and asleep much of the time we spent together. We spent several sad hours that way and so my mom has a firmer memory of this. As such, mom knows something is up and has asked me about her sister several times today. “How is Weezie? Is she still with us?” Little things are filtering down. It will be interesting to see how the coming days play out.
My folks don’t spend a lot of time together outside of the kitchen and no one spends much time in the kitchen except my dad and this first and only love, the TV. I speak with about 90% certainty when I say that my folks only had brief moments together today and that I was with them for most of that time. My father had nothing to say about his sister in law’s death. He did not ask my mom how she was or what she might need or what she might be feeling.
Grant it, I did leave them alone after dinner and they are both still down there, but my dad also turned his favorite TV show in at 7pm. So Yeah. Not much conversation is happening. Some might be tempted to suggest this is because he knows her limited memory will make this questions pointless or triggering, but to this, I can only say that he denies her dementia in almost every other way and insists she can retain memory in the most routine fashion (like suggesting she can be left home alone to deal with arriving plumbers and the like. Yes, this really happened.)
So just a tiny peek into my father’s world – too mortified or uncaring to actually ask my mom how she is after her sister has died. It’s sad. Just plain sad.
In the days leading up to the covid-19 social isolation, I felt a distinct thrill like you might on the eve of a snow day or the moment the lights go out and you have to find the candles, but as I face this first full day, I just have to say that I am tense beyond what is called for. I think as an adult I’ve always faced uncertain and exhilarating times like this with company that I wanted to keep – with my housemates or my partner, but now I find that I’m facing potential weeks of such isolation with people that is effectively my job to take care of. I don’t want to spend this time with my parents. I don’t hate the idea of spending this time with my daughter but I wish I had somebody. Else.
When I decided to move home to be the full-time caregiver for my family, I expected the hardest part would be to manage my mom’s ever-increasing dementia. Of course, this would be hard. The world tells you how hard this will be and I had few illusions. I also wondered if being a for-real stay at home mom to a then 5-year-old in half-day kindergarten might be a close second. I had always had breaks from the kid for at least 4 hours a day while I worked. Half-day K was basically 2.5 hours a day. She had had longer pre-k days. Anyway, those were my expectations and I guess at first that’s how I leaned into my new circumstances. Adjusting to mom’s increasing dementia will always be a challenge and a process. The year of kindergarten and that first real summer vacation were intense. I relied on screen time much more than I care to admit.
BUT, all this said, the truth of my situation took some time to solidify and become clear. Months had to pass before the wool started to shift away from my eyes. The hardest part of my situation was not my mom or my kid. It was my dad. The 80 something-year-old man whose house I now lived in. And this is an important distinction. My daughter and I live in his house. Not our house. Not even my childhood home. An important distinction. I am really not joking when I say that the hardest part of my life now is because of fucking patriarchy and how it has allowed this man to be in charge for his whole life without really doing all that much to earn that control. I wish I was joking.
A year and a half later, there are plenty of humorous or frustrating anecdotes I can share with you. There are also things too sad or rage inducing for me to want to even share. But please let me be clear – My Dad is the perfect product of the patriarchy. It’s just that simple. His needs and his comfort come first at the expense of all else. This is his house and these are his rules. In his house, what he says goes and our is not to question why. Ok, even as I type these words, I have a sense that they might be misleading. He does not say these things outright. In fact, he is remarkably distant and checked out, but man, this is the unspoken agreement that my father brokered with my mother decades ago. Before they even had children and I bet. And it was handed directly to my father by his parents and it was impressed upon me and I presume my siblings with a certainty and finality that leaves me breathless at times. It can be difficult for me to put into words something so enormous, that I was taught without direct instruction or acknowledgment. It’s gonna be tricky for me to convince you (and likely others are my family and community) how profound and pervasive my training was and what the expectations in this house still are. But I can easily insist that the hardest part of my life now is how the dominance of this male figure looms for me and my daughter. And for my mother. She has tacitly enforced all of these assumptions and programing and so to some degree, I feel inclined to say, “She made her bed” because honestly, I learned the importance of my father’s position FROM HER. But it’s still heartbreaking to see how little care my father is capable of offering his wife. How easily he can disregard her medical condition, her emotional needs, even her physical presence.
So there we are. My dad is a dick. He has his kind, funny moments. He is a lot freer with his money than I ever expected him to be. But that’s about it. Most days, even his version of clam and laid back seems toxic to me. And that is mostly because of his media consumption. From 7:30 am to 10:30 pm, he listens or watches. Right-Wing talk radio. Youtube. Fox News. Law & Order SVU, Forensic Files, Court TV, Chair throwing talk shows. And all of it is at TOP VOLUME. He does not stop to think about how triggering or simply annoying this might be. Even after being told time and time again, he is confused about, for example, how a tv show about children being molested or women being murdered by their husbands is unpleasant and best and at worse, grossly inappropriate when a 6-year-old is in the room. But he wants it, so he gets it.
And the absolute worst part? I watch as my father scolds and diminishes my female child and I am both enraged on her behalf and my own. Because each chastisement and belittlement, each insistence that our needs are less important than his, are a repeat of what was offered to me at her age. It makes my blood boil.
When I was a teenager I hated my father. I just did. Did not have much love for my mom either honestly. I left their house with a “good fucking riddance” on my lips and thought I would never look back. And for years I stayed away for everything but major holidays. More years passed. Feelings were tempered. At some point, I returned home and everything seemed so quaint and kind that I thoroughly second-guessed my own experience. God, I was an angry teen. What the fuck had my problem been anyway? I told myself that the most significant difference was that my dad had retired and “gotten nice”. By the time I was in my mid-30s, I had forgotten my anger and told myself it had all been in my head.
Now, a year and a half later, I am completely blown away by how on point I had been as a young woman, how justified my anger had been. In the 90s, I did not have the literal or emotional vocabulary to express what they had done to me. I do now. I don’t want this blog to be a place where I only talk about how difficult my life has become or how much I hate my dad, but I am pretty sure I am not gonna be able to keep it all to myself.
It’s the thing that will probably keep me from telling my friends and family about this record. We shall see.
This week, I took my dad to the ER for what looked like a heart attack (it was not). My aunt was moved to hospice and my cousins have no idea if she will be 5 days or 5 months. I scheduled an appointment with a lawyer for the first time ever to make sure my dad’s will/estate is in order (it’s not). My mom’s doctors are insisting that we get her to sign a DNR cause “elderly patients with dementia do not recover from CPR”. I had a memorial for a friend this weekend that was just canceled due to covid-19 worries. AND they are closing public schools in all the counties all around us because of the same. This week can eat shit.
I want all of this to seem shocking and unreasonable, but the truth is it’s totally mundane. Millions of people in this country alone can’t remember simple or profound things of this nature. It blows my mind over and over, but then it doesn’t. Then it’s perfectly par for the shitty course.
My mom started showing signs of dementia right around the time my kid was born. Maybe even before. That was six years ago. I took her to see her first neurologist 5 years ago. We were sent home with the advice that my mom should exercise more. “There was nothing to be done,” they told us. I know now, of course, that they could have medicated her and that could potentially have slowed her dementia’s progress. It’s frustrating to think about that. It’s embarrassing to admit that for much of that time I could not even bring myself to use the word “dementia”. I thought that since no doctor was saying it, that there was some flavor of normal aging-related memory loss that was just that – memory loss, no more, no less and that “dementia” was something else entirely. Dementia was something doctors would recognize and take steps to treat or at least diagnosis. For the first few months we lived at home it seemed like my mom was just the same forgetful self she’d been for years. When we moved in, my mom could accomplish the following :
She could fill her own pill holder and remember to take her twice– daily meds.
She would regularly bathe herself.
She managed to feed herself her meals and occasionally succeeded in making a meal for my dad.
Get dressed on her own.
Do limited housekeeping like cleaning and maintaining a grocery list
Weekly Laundry, including ironing, and changing sheets
It only took a few weeks for me to see where she was slipping. I took over the management of her medication almost immediately. Other tasks became mine as she demonstrated more and more trouble with the job or others that she simply one day stopped doing for no discernible reason. For example, she has been doing weekly laundry. It was not even on my radar as it was part of her regular routine. Then one day, about 5 months after we moved in, I realized that their hamper was over following. She had managed to do some laundry in the weeks past, but my dad admitted it has been almost two months since the sheets on their bed had been changed.
More and more she would stay in her pajamas later and later in the day. I would have to really push for her to head upstairs and get dressed. Then one day, after I had shooed her upstairs after breakfast, I was playing with Pem in our room and Mom wondered in half-dressed and said, “I don’t know what I am doing.” It was at that moment that I realized that there is no such thing as just memory loss. That single statement hit me like a thunderbolt. This was dementia.
I took her straight to her primary care and explained how things had changed. They recommended a new neurologist. After waiting what seemed like ages for her new patient appt with the new neuro, we were sent home with a prescription anti-depressant and a single drug to “slow cognitive impairment”. What we were not sent home with was a diagnosis. I was frustrated and confused. My mom could not even remember these appointments and no one had anything to say about that!
When we were leaving the appointment with this new neuro, I asked the person at check-out a visit summary for our records, but for some crazy reason, there was not a single piece of paper available for us to take home. The receptionist gave me the card for Doc’s assistance and when we got home I emailed her and asked her to mail the summary for the visit. She did this promptly and also included the physician’s letter to my mom’s primary care. In that letter, the neuro spelled out her diagnosis of Alzheimer’s. But that word had not once been used at our appointment.
When I demanded to know why we have not to be informed of this, her neurologist and primary care doctor each blamed the other. “Oh,” they basically said, “I thought the other doctor had told you”.
Can you even imagine? “Oh! Sorry I never mentioned that cancer diagnosis” says your oncologist “I thought your primary care told you.” Yeah, like that.
I insisted that I bring my mom back in so he could deliver that diagnosis. I insisted my father join us for that appointment. I got all three of us to said appointment and the neuro talked to my mom and dad for over 5 minutes about “normal aging” before he uttered the word “Alzheimer’s’. I watched their eyes glaze over. When he was done talking at them, he asked if either of them had any questions and they both politely said “no, thank you for your time doctor”. No questions. None.
My mom received the diagnosis too late to remember the diagnosis. She still does not even really know that she is sick. She thinks her memory loss is because she is growing old. She also seems to think that if she tried harder she might remember more. That part sucks.
Recently, my mom’s primary care doc retired. I can’t say I was sad about that. When I took the steps to find a new doc, I was mindful to engage a practitioner with a specialty in geriatrics. We saw her a few weeks ago and she asked me very directly if anyone had ever really talked about the results of my mom’s MRI from 5 years ago. I said I supped they had and recounted that we were sent home without a diagnosis or any plan of action all those years ago. The new PC seemed a bit flabbergasted. She explained that my mom’s brain is riddled with strokes (They did mention this 5 years ago, but wrote it off as an HHT thing and made zero connection to her burgeoning memory loss), but that it’s entirely likely that her dementia is vascular. WHICH IS NOT EVEN ALZHEIMER’S. She went on to clarify that my mom probably suffers from mixed dementia as so many do. Nothing really changes now that we have this information. But is just another example of how poorly informed I feel like we have been.
So where are we now? I’ll start getting to that soon.
