by Jenny Rose | Jun 24, 2023 | Connection & Community, Emotional Intelligence
My work team and I provide services to patients and the public in our aquatic rehab facility in Central Maine, which means it’s impossible for me to live in a bubble. Thank goodness.
I’ve been complimented, praised, flirted with, yelled at, accused, and blamed. I’ve listened to a wide range of political and religious viewpoints with a polite face on. I’ve dealt with tears and tantrums (not talking only about the kids here). I’ve heard about medical and family history in excruciating detail, often repeatedly. I’ve watched patrons and patients get better, and I’ve watched them get worse. I’ve watched them lose weight and gain weight. I’ve met grandchildren and siblings when they visit Maine. I interact with people who are confused, struggle with memory loss, or are affected by dementia, either their own or a loved one’s.
I’ve seen a variety of sexual identities, gender presentations, and body dysmorphia (and no, I’m not conflating body dysmorphia with homosexuality.) My team has served patrons who are listed on our state sex offender registry.
We serve deaf patrons, autistic patrons, anxious patrons, mentally ill patrons, special needs patrons of all kinds and ages. We serve an occasional minor who gets dumped in our emergency room and lives there for a time while the authorities try to find placement.
Image by Bob Dmyt from Pixabay
People. All kinds of people. All colors, shapes, ages, and sizes. All different.
People just like me.
I notice a thing in the present cultural discourse. People who browbeat others about inclusion and tolerance invariably are the least inclusive and tolerant.
Talk (and typing) is cheaper every day.
As a writer and lover of words, I notice a deluge of new terminology and labels, many of which strike me as ridiculous, redundant, and/or meaningless. Their sole purpose appears to be to increase the ways we can despise and exclude one another. At the same time, there’s an ominous drumbeat in the background about ideas and words some person might find offensive and therefore must be forcibly eradicated. A few months ago one of my adult sons said to me, “Mom, you can’t use the word science in public,” as though explaining socially acceptable language to a child. All I could do was look at him in disbelief.
Science is not a dirty word. Disagreement is not hate, and respect and tolerance do not equal agreement. Asking questions is not a call to arms.
The Word Police are out in force, trolling online and hijacking us in public places. Virtue signaling has begun to take the place of authentic discourse. We’re harshly and instantly judged and labeled by the language we use and the ideas we express.
Toni Morrison said, “Definitions belong to the definers, not the defined.” I think about that every day. Another phrase frequently in my mind is “I’m okay with your disapproval of me.” People have been disapproving of me since the day I was born. I’m used to it. The sky hasn’t fallen yet and somehow I manage to continue to exist.
I’m not the slightest bit interested in disapproval, labels, or sweeping generalizations, which are increasingly idiotic as labels proliferate.
I’ve been reading lately about the “tribe of one,” the logical endpoint to the cultural mandate to divide ourselves into ever-decreasing groups until we’re each completely isolated, believing no one can possibly understand our particular experience as a self-defined ______, _____, etc. Therefore, the world is against us, we’re marginalized and oppressed victims, and we’re owed power, respect, and tolerance no matter how egregious our behavior is. No one is included in our little bubble. Everyone is excluded. Yet we expect and demand inclusion, which is to say, accommodation.
Who benefits from this solipsistic isolation? Is this the kind of human experience we want for ourselves, for our children? Is this social justice?
There are other paths to take. We could focus on our similarities, on the common human experiences binding us all together. We could build a new lexicon of connection rather than division. We could stop using labels, even in the privacy of our own heads. We could value curiosity more highly than outrage, confidence more than a constant state of offense. We could value authentic expression more than virtue signaling.
We seem to have forgotten the real world is not a set of disconnected bubbles. An infinite number of labels (including pronouns) cannot describe the entirety of a human being. Experiences define human beings. Birth. Death. Connection. Feelings. Living in a body. These bind us together. The life we are living defines us, not labels.
Every single one of us in this moment is included in the human family. We all have that in common. Why are we so determined to slash that root into pieces? I ask again, who benefits from this brutal severing? Why are we participating in it? How have intelligent, well-meaning, compassionate people become machete-wielding destroyers, all the while mouthing words like ‘inclusion’ and debating pronouns?
At work (and elsewhere), I’m focused on people. Of course I notice skin color, sometimes eye color, hair, body type, spoken language, cognitive and physical ability. I also notice tattoos, scars, stretch marks, skin tags, moles, and the occasional blood-bloated tick! Swimming suits are revealing clothing. None of these details define anyone, however. For me, they’re value neutral. I don’t connect or disconnect because of someone’s appearance. I can’t make valid generalizations about anyone based on the way they look. We treat everyone who comes in the door with the same respect; our expectations in terms of adhering to our safety rules are the same for everyone. We accommodate differing physical abilities and needs without fuss.
Wheelchairs, walkers, prostheses, oxygen, health status and injury are details, not definitions.
Now and then I interact with someone I hardly know who makes it plain they disapprove of something I said, or wrote, or chose. They were triggered. They were outraged. They were offended. I’m met with a curled lip, judgement, and criticism. I’m made to understand I’m hateful and bigoted, which I don’t take too seriously, as I’m neither. Anyone who knows me at all knows that.
By Landsil on Unsplash
In short, I’m immediately excluded, and there is no court of appeals. There’s no mutual bridge-building. Because of a word or an expressed point of view I’m entirely rejected, now and forevermore. Most of the time I consider the source and shrug off this kind of interaction. In certain circumstances, however, it’s destructive and hurtful in a more personal way. We can’t always choose the people in our lives. I can’t build connections alone.
Situations like this invariably catch me off guard. When someone expresses a view or belief I disagree with, I simply step around it. I change the subject, probing for connection points. I don’t concentrate on our differences or potential disagreements. I don’t expect others to fall in line with my beliefs. I don’t shame or shun others because they have a different point of view. I don’t think of myself as being on higher moral ground, and when others come at me with moral indignation, it makes me smile inwardly. Good grief! Get over yourself already.
I’m willing to include you. Will you include me? I ‘ll give you tolerance and respect. Will you give them to me? I’ll give you the benefit of the doubt. Will you give it to me?
I’d rather be curious than outraged. I’d rather have confidence in myself and my experience than maintain a hair trigger on my sense of offence. Most people don’t mean to be offensive. If they do, it’s best to ignore it. Life is too short to spend my days in a constant state of outrage and offense. It doesn’t change anything and nobody cares. Cultivating a sense of humor is more fun.
We’re not entitled to have our triggers, sensitivities, and ideology accommodated.
If we’re all especially vulnerable, broken, or traumatized, none of us are. If we’re all oppressed victims, none of us are. If we’re all vile haters and bigots, none of us are.
What we all are is … human beings. As human beings, not a single soul is excluded. Isn’t it enough to simply be the best human beings we can be and allow those around us to do the same?
Questions:
- When you think of a person in your life, do you think of a list of labels or do you think of a human being? Once someone is labeled, do you ever feel you’ve mislabeled, misunderstood, or misjudged them? If so, do you admit it and eradicate the label?
- Can you describe someone you know without using a single label? Try it!
- In the first five minutes of contact with a stranger, are you seeking to build connection or mentally applying labels to them? Which labels do you check for first?
- Do you turn away from anyone who disagrees with or questions your particular ideology or belief system? Do you view such people as hateful? Is it possible to disagree with you or question you and still be a good person?
Leave a comment below!
To read my fiction, serially published free every week, go here: 
by Jenny Rose | Jun 10, 2023 | Connection & Community
I’m living inside this poem right now:
Ozymandias
I met a traveller from an antique land
Who said: “Two vast and trunkless legs of stone
Stand in the desert … Near them, on the sand,
Half sunk, a shattered visage lies, whose frown,
And wrinkled lip, and sneer of cold command,
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them, and the heart that fed:
And on the pedestal these words appear:
‘My name is Ozymandias, king of kings:
Look on my works, ye Mighty, and despair!’
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare
The lone and level sands stretch far away.”
–Percy Bysshe Shelley
I want to escape this haunted place, walk away, never look back, forget, and wander among green trees, feeling their breath on my face. I want the blessing of the rain on my skin, to plunge my hands into rich soil, lie open to birdsong and the sun’s touch.
I want to be free.
Yet, again and again, I find myself crouching in front of that shattered visage, tracing the frown, the wrinkled lip, the sneer of cold command, unable to leave it or look away. I remember, and weep, and try to understand how something so mighty, so powerful, can fall and break apart, become nothing more than a colossal wreck in a desert in an antique land, unvisited, unremarked, nothing but time’s debris.
I was born in the shadow of those stone legs. I watched the sculptors at work, perfecting, shaping. I learned to worship Ozymandias, to make myself small before him, to endure his stony displeasure and indifference.
I did not know his name for a long time, not until I read this poem in high school. He was called Money. He was called Status. He was called Power. He was king of kings – that I never doubted. He required unceasing sacrifice; though I sacrificed everything I had, the sneer and wrinkled lip looked down upon me in infinite contempt. I looked upon his works and saw destruction and anguish. I saw lies and shattered lives and I despaired.
By Wei Gao on Unsplash
I left. I crawled away under the weight of my own inadequacy and unworthiness, across the lone and level sands, feeling his stone gaze upon me. I left, and one day I got to my feet and walked, and then I remembered how to dance, and swim, and the world opened up for me, showing me friendship, healing and joy.
Then, across the years, across the miles, Ozymandias fell, and the ground of my being has shuddered and convulsed with the impact ever since.
Understand, when he fell it all fell. Secrets lay revealed. Lies tumbled naked in the desert sun. Ozymandias, so carefully sculpted by generations before me, disintegrated. I understood then what I was taught to call Money was really named Fear. Status was in fact Shame. The wrinkled lip and sneer of cold command were not love, were never love. The king of kings lay forgotten, impotent, slowly wearing away to sand.
“Look on my works … and despair.”
It’s all gone, the gods of my childhood, the king of kings, the money, the status, the false power.
All gone.
Except for me. I am not gone.
In Maine, I eat and sleep. I journal and write. I walk to work, talk to people, laugh, teach. I sweat on the elliptical and exercise in the pools. I pay bills, make plans, file papers. I buy groceries and cat food. I do laundry and clean. I work in the garden. I’m distracted and absentminded, prone to sleeplessness and unexpected fits of tears welling from some deep unaware place. Or, on the other hand, maybe that place is all I’m truly aware of right now.
I talk and text and email to staff at the memory care center in Colorado where my mother resides, to her hospice team, to people at the agency we’ve now hired by request to provide extra caregiving. I hear about dementia, combative behavior, falls, sabotaged bed alarms, incontinence, sleeplessness, anxiety, medication adjustment. I am called to calm Mom down as though that was ever possible, as though she trusts me or ever took any comfort from me.
And part of me kneels in the desert, watching the family money (a mere pittance, judged by today’s standards rather than those of 100 years ago) and pride, that towering edifice more important than love, more important than health and happiness, more important than anything, sink into the desert like water. Is the desert powerful enough to cleanse it? Shattered Ozymandias still frowns, wrinkles his lip, sneers his cold command, but his works have disappeared even as he himself wears away.
Do I grieve or rejoice? I try to understand. I try to feel something more than despair at the waste of lives, at the dearth of love.
One thing I know: I will not stay here, beside Ozymandias. It’s a cursed place, a dark place. I will leave it to the circling vultures, the sun, the wind, and the silence. I will leave it to Time to wear away the sneer, the frown, the wrinkled lip, the trunkless legs. I left once, and I will leave again. I know this desert is a small place and the world is wide. I know who I am now. I know what love is, and that I’m capable of it. I am no longer alone.
I would have saved my family if I could have, but my gifts have no monetary value. What I have to give, what I am, cannot be bought or sold. I do not accrue a good rate of interest. I was not judged a sound investment. I did not increase my family’s status. Ozymandias, king of kings, was incapable of seeing or knowing me, being far too dazzled with his mighty works, dissolving now into sand while I myself, still vital and alive, pause to find absolution and mourn, groping for a way forward, watching it all decay.
Questions:
- What idols have fallen in your life?
- What family secrets have you discovered?
- Do you find comfort in the eventual fall of what once seemed all-powerful, or does it frighten you?
- How have you challenged your family’s definition and expectations of you?
Leave a comment below!
To read my fiction, serially published free every week, go here: 
by Jenny Rose | Apr 8, 2023 | A Flourishing Woman, The Journey
Delayed closure is a wound treatment strategy in which complex wounds with extensive soft tissue damage and high levels of possible contaminants are treated with initial control of bleeding, cleaning, and debridement, and then left open for a period of time during which the possibility of infection is treated proactively. At the time of delayed wound closure, further debridement of scar tissue or dead tissue takes place.
As I count down the days and prepare for my second trip out to Colorado this year to manage my mother’s recent admission to memory and hospice care, the phrase ‘delayed closure’ reverberates through my mind.
Photo by Ryan Moreno on Unsplash
Delayed closure.
I have recognized for some weeks the significance of this second return to the place I called home for more than 20 years and my frail, confused, aging mother. At least, I have begun to recognize the significance. Every day brings added clarity. Awe is not too strong a word for what I feel.
When we flee people, places, or situations (and my flight from Colorado to Maine eight years ago was all three), it’s not an elegant, dignified process. It’s a frantic life-or-death flailing and thrashing, a single-minded determination to survive, whatever it takes.
The process leaves wreckage behind, a lot of unfinished business, a lot of rending and tearing, misunderstanding and hurt. It leaves, in other words, a complex psychic wound, not a clean laceration.
When I found myself in Maine, I thought I would not survive the trauma. I had torn myself up by the roots and gone to ground in a strange place I’d never been before. I felt like skin and hair wrapped around a suppurating wound of such longstanding duration and composed of so many different kinds of damage it didn’t seem possible it would ever heal. I didn’t think of healing. I didn’t hope for healing. I was a feral creature in survival mode.
I had no idea I had in fact saved my own life and taken the first steps to transformation, and I wouldn’t have cared if I’d known.
All I was doing was surviving.
In medical care, part of the strategy of delayed wound closure is giving the body’s natural defenses a chance to overcome infectious bacteria rather than sealing them in.
What were my natural defenses?
Photo by Aaron Burden on Unsplash
Water. My home in Colorado had been enduring a years-long drought. The wind blew all the time. Gaunt, dusty cattle stood sunken-eyed on plots of hard-baked ground. The wind blew relentlessly, scouring the land with flying sand, dust, and debris. We prayed for rain as we hauled grey water to our gardens. The city imposed restrictions on outside watering, car washing, any outside fires. Trees died. Fires consumed the land. It was apocalyptic, a hellscape with no relief in sight. Our water bills went up and up for simple household use. The rain didn’t come, year after year.
Maine was a revelation. Water. Big water, like I’d never seen before. The Kennebec River. Puddles everywhere, each with a duck. The people here call an enormous lake (to my eyes) a pond. Huge trees. Hip-high ferns. Moss.
Moss!
Rain. It rained. It actually rained. Measurable rain falling for hours, sweet, cool, life-giving. Mist. Fog. To breathe was to absorb water like a desiccated sponge. My cracked skin healed, drinking in the moisture. I lived in a house with a hand-dug well. No water bill. Free water! I trained myself to flush the toilet every time! My hair curled, growing out rather than down.
I lived in the country in Maine. No one knew me. No one knew I existed or any member of my family. For the first time in my life I escaped everyone’s expectations. No one demanded anything from me. No one watched me with critical eyes. No one told stories about me. I had no reputation. I was free, untethered from everyone and everything. I could think my thoughts and feel my feelings in safety and privacy. I could read, or work, or sleep, or take a walk, or garden without interruption or someone telling me I was failing. No one demanded anything from me. I had no emotional labor to do. I rested in the healing solitude of nature, laying my hands on trees, sitting on rocks watching little spring streams trickle, sitting in the sun listening to the birds, lying in bed listening to the owls, coyotes, and spring peepers in the pond.
Writing. In 2016, a year after I arrived, I began this blog. I had no expectations. My sole intent was to write my truths in my own uncensored voice without trying to please anyone, in spite of my fear. I had done some writing in Colorado, but always with a sense of guilt and shame, always with the fear of what others would think. I knew everything I wanted to write would be looked upon as unforgiveable betrayal or wildly shameful.
Photo by Angelina Litvin on Unsplash
In Maine, so far away in a new life, I discovered my courage and started, week by week, recording my journey from a broken, cringing creature, filled with self-loathing, to a strong, confident woman. At the same time, I pulled together my scrawled notes and the stories I’d written in the dim, hidden edges of my life and finished a book. Then I started another one. Then I finished the second book and started a third one.
These were my natural defenses: water, nature, and writing. Slowly they overcame the infection in my ravaged soul.
Yet the wound did not close. It stopped stinking and bleeding. Scar tissue formed. But I had lost too much to pull the edges together and make a neat closure. I had saved my life. I had survived and gone on to thrive. But I knew I was not done.
I know an old story about amends; it says only the hand that dealt the wound can heal it. Sometimes we must flee in order to live to fight another day. I fled, and I was right to do so, but flight leaves no time for closure. For closure sometimes we must go back.
Delayed closure.
The first time, in January, I was afraid to return. Afraid of judgement. Afraid of old pain. Afraid of what others would think, or say. I was afraid to have my memories stirred up. I was afraid my wound would tear open again, and this time I would not survive.
What happened instead was acceptance and love in the arms of old friends. My love for them was met by their love for me. The place, dear and familiar, welcomed me, though I no longer call it home. I found changes, of course, but not painful changes. Natural changes. I realized my fear had kept me from the closure I need, and my fear, once faced, amounted to nothing. In reclaiming my power, I was able to gain perspective. I’m just a part of that little town in the way it’s a part of me. I’m not the most important part of it and never was. It’s not the most important part of me and never was.
Having reclaimed my power, I felt and expressed my honest love and affection for the place and the people without needing anything in return, although I received much in return with gratitude and, I hope, grace. I examined the wound again, debriding scar tissue, cutting away necrosis, until my soul was healthy and vital once more. Some lines. A few silver scars. But free of infection, free of pain.
Still, when I came home to Maine again, I knew I was still not finished. Closure was not complete. I knew one day I would return once more to the place I had left.
In less than a week I’ll be there again, this time for a longer period. We must prepare for and hold a living estate sale: clean, sort, sell, discard, donate, and perhaps store a house full of, not my mother’s life, but her stuff. The things from which she constructed her identity. We must see to repairs and the business of welcoming renters in.
We will also visit my mother in memory care. If she’s well enough, we’ll take her out for a meal or a little gentle shopping. Perhaps we can sit in the sun with her. Or, perhaps she’ll be angry and bitter, refuse to sit in her wheelchair, demand to go buy a car, or some other wildly inappropriate and impossible thing.
I will see her again, though, speak to her, tell her I love her. I’ll check to be sure she has everything she needs. I’ll speak to the staff, to her hospice team. I’ll buy some books for her from the Friends of the Library bookstore she herself created and helped run for years. If she can’t go out, we’ll bring food in, perhaps a flower in a vase, and sit in the dining room where other residents can see her with her family, give her the dignity of being loved and cared for rather than forgotten and discarded.
It will be hard, or it will be easy, or it will be both. Dementia is like that. However it is, though, I won’t take anything to heart. Her power to hurt me has unraveled, along with her memory and cognition. She’s physically safe at last. Her physical and emotional wellbeing are no longer my responsibility. They never were, of course, but I didn’t believe that until recently.
Photo by Jeremy Bishop on Unsplash
I’m free. Free of my painful memories, free of old stories and narratives, free of the fear of what people will think of me. Free of fear, most of all. Freedom fills in that old wound and now, at last, I can pull the edges together, stitch them with words, with love, with wisdom, with forgiveness of her and myself. I have traveled a long, long road through darkness, despair, self-hatred, and trauma, but I still love. I still care. I still dance, and laugh, and write, and thrive. I still belong to Life.
I did the very best I could every step of that journey. I was blessed with guidance and friends and teachers. My wounds were not mortal.
Now, journey’s end. Delayed closure. New beginnings.
Questions:
- What is your experience of going to a place you called home after a long absence?
- What open wounds do you still have?
- How have you closed longstanding wounds?
- Do you see a living estate sale as a cruel betrayal or an appropriate business choice?
Leave a comment below!
To read my fiction, serially published free every week, go here: 
by Jenny Rose | Mar 11, 2023 | Emotional Intelligence, Feelings
In January, my brother and I traveled to Colorado to transition our mother into memory care.
As some of you know and many can imagine, a journey into dementia is an unsettling one on good days, by which I mean relatively calm days. On bad days, days of panic and confusion, days of anger and restlessness, it’s heartbreaking.
One of the greatest challenges for me is the chaos of my jostling feelings, all mobbed together and struggling for attention. I can’t feel everything at once, and I can’t focus on one thing at a time. One minute I’m entirely relieved because I know she’s in a safe, protected environment being well cared for, which has not been the case for the last ten years. Knowing she was living alone, driving, walking her dogs, and slowly losing her ability to function and manage her own life and I could do nothing about it took a daily toll.
Photo by Cristian Newman on Unsplash
The next minute empathy and compassion overwhelm me and I’m reminding myself to maintain boundaries. She is not me. I am not her. My attention needs to be on taking care of my own feelings. If I could have effectively helped and supported her, I would have started doing it when I was five years old. I never found a way because there is no way.
Then I’m angry. Angry because I tried to avoid this particular outcome. Angry because she wouldn’t help herself when she had the ability to. Angry because I’m still in the position of parenting and taking care of my parent, which has always been the case. Angry about her suffering and confusion, and mine.
At the end of every conversation we have on the phone, I tell her I love her. It’s true. I have always loved her, but was not allowed to say so. She would ignore such a statement, or dispute it. She says it back to me now. It always makes me a little bit mad. It was a thing she would not say outright before. She’d sign herself “Love, Mom,” but she wouldn’t say it. She’s not a person who offers or accepts any kind of touch. Does she really love me, or is she merely participating in the familiar ritual of the exchange? Did she feel it all along but couldn’t say it?
Even before her dementia onset, Mom wouldn’t have answered these questions. I will never know.
I’m also sad. It’s not a sobbing, tearing grief, but a gentle, diffuse one, like watching a teabag steep in hot water and gradually turn it into tea. I don’t feel it all the time. There’s resignation in it, and acceptance, and surrender.
Mom is receiving palliative care under a local hospice organization. They recommended a book to me, titled The 36-Hour Day, by Mace and Rabins. I bought a copy. It was hard to read because it stirred up uncomfortable feelings, but it’s also a goldmine of information, including the latest research and standards for dementia care. It’s enormously validating. I read about specific behaviors and the stages of dementia and realize I have been struggling with Mom’s gradual disintegration for years. Nobody else saw it, so I was alone with my fears and concerns, but I knew she was slipping and I suspected this time was coming.
What I was most hoping for from the book was a script for dealing with difficult questions and conversations. I have some professional experience with dementia and am comfortable with refraining from using logic or trying to bring anyone back to reality. Mom has always believed entirely in her narratives, which often were distorted, paranoid, and inaccurate, so I have a long and painful history of managing her stories and beliefs. However, now the briefest conversation is fraught with pitfalls I don’t know how to respond to or address. I spend a lot of time on pause, frantically trying to figure out the best way to engage with her.
Photo by Quino Al on Unsplash
The book didn’t give me a script, per se. What it gave me was a simple strategy for everything: reflect and validate feelings. Not the stories (thoughts), but the feelings. Emotional intelligence strikes again.
This was good news for me because I’m highly emotionally intelligent, even in this difficult personal context. I know how to recognize, name, and manage feelings. On the other hand, it seems like so little to offer. It’s hard to provide comfort in the context of dementia. Language feels pointless. Nonverbal communication is useless over a long distance and, in this case, in person. Mom has flinched away from me too many times for me to even think about touching her. On the phone, all I have is language. Following my impulse to reassure, to explain, to provide some kind of structure, only makes things worse for both of us. I measure my effectiveness by the level of her distress, which is eerily like measuring my effectiveness by the degree to which I can please her. Even that may not be accurate. Mom’s distress has always been extreme in the face of boundaries, limitations, the word “no,” and any questioning of her particular narratives and beliefs. It’s a personality trait having nothing to do with me personally. The mere fact of her feeling confined (which is accurate) may be the root of her distress rather than anything I’m saying or doing. Or not saying or not doing.
It occurs to me feelings live inside the just-born infant. Maybe before that. Certainly, we experience feelings long before we master language. I’m realizing intellect, logic, language, can all fall away at the end of life, too, but the feelings remain. I assume our need to be heard and validated remains.
Conversation with Mom is like wandering blind through a meadow filled with rabbit holes. Dementia is at once simple and extremely complicated. I never know how she will be or what she will say next. Sometimes she sounds down and depressed. Sometimes cheerful. Sometimes calm. Once she even told me she was “content,” a word I’ve never associated with her before. Sometimes she’s anxious, sometimes angry, sometimes groggy and hardly responsive.
When we talk, I work to set aside (temporarily) my own feelings, thoughts, memories, expectations, and predictions. I ask her how she is and listen to her response, looking for the feelings. When she tells me she needs to leave there because “everybody steals,” I sidestep the stealing accusations and acknowledge it must be an uncomfortable and discouraging way to live, and I can understand why she doesn’t like it. She perseverates on this theme off and on, and I enlarge on how difficult the feeling of losing things is, how unsettling to not be able to find our possessions. After all, she’s lost her whole previous life. Her feeling of loss, of things missing, is based in reality. On the other hand, her paranoia and fear of people (including me) stealing money from her was in place long before her dementia. I was never able to persuade her they did not reflect reality. I certainly can’t do it now.
Reflecting and validating her feelings back to her feels inadequate. It even feels condescending. But there’s nothing else I can do, nothing else to say. Witnessing her feelings is all I have left.
And, after all, maybe that’s a lot. We’re not very skilled with feelings in this culture. It’s not easy to find someone who will just listen without trying to fix or solve. Perhaps great healing lies in being heard with nothing added. I hope so.
Another constant theme is one of buying a car and going shopping when we visit. When I ask her what she needs, she can’t tell me. She needs “things.” When I ask her if she’s started a list, she never has. We are not sure she can read or write anymore. I realized when we went out to move her and worked in her house she’s a shopper. She has enough clothing for three women. Her closets were filled with shoes, both old and worn and newer. She had six or seven open bottles and jars of the same products. Her cupboards were packed with supplements and vitamins for both herself and the animals, many of them outdated. As her confusion grew, it appears she self-soothed by shopping and receiving packages in the mail. So, we talk about how much fun it is to take a day and shop for this, for that. We talk about having new things, buying special gifts for ourselves. She doesn’t want to make a list and have someone else get her what she needs. She wants to go on her own and play, buy what she wants, choose what she wants. She wants to feel free, independent, and empowered to give herself that.
She cannot understand that’s no longer possible. Even if she could, the feeling of wanting what she once had would likely persist. It breaks my heart.
Photo by Gemma Chua Tran on Unsplash
I have feelings, too. I turn to journaling, to writing. I’ve tried without success to find support groups in my area; then I found a mental health professional experienced in family trauma to speak with. I talk with Mom’s hospice team regularly; having worked for hospice, I know they want to support the whole family system. I extend to myself all the gentleness, support, and patience I extend to Mom. I hold my thoughts loosely and hug my feelings. They need comfort. They need expression. I think about boundaries and regulate my empathy. I’m newly appreciative of my own freedom and independence. I look for reasons to laugh, reasons to smile. I look for ways to connect to others. I intend to learn to receive as well as I give.
As I write this, an exuberant spring wind blows outside, pushing snow off roofs, tangling our wind chimes, shaking the lilac branches with their new, hard buds. One of the cats is stretched out on my desk in the sun. My desk calendar was in his way, so he kicked it off with his back feet. A glass paperweight pins down a card for Mom, the envelope addressed and stamped. Every Monday I put a card in the mail for her. I do it for me. She does not acknowledge them or remember receiving them. I hope they’re all displayed in her room, but I don’t know. I’m not sure she can read them. I imagine a staff person or hospice team member reading them to her. I’m not sure she can connect them with me at all. But it makes me feel better to make the gesture, and I enjoy picking out cards I think she’ll like. I’ll write a couple of lines about the weather, about the moment, about spring. I’ll sign it with the word love. I’ll put it in the mailbox and raise the flag, and the mail carrier will take it in an hour or so.
Feelings are pure. Feelings are simple. It’s our thoughts about our feelings that fester, tangle, entrap us. I want to soothe uncomfortable feelings, make the pain stop, dry the tears, turn aside the rage. All my life it’s been my role to take care of Mom, fix whatever was going wrong. I still feel her emotional dependence. I still feel the responsibility to solve every problem for her.
But Mom has traveled now to a place I can’t go and she can’t come back from. She can’t follow me, clutching at my clothing, needing, wanting, pleading, demanding, rejecting. I can’t walk beside her in a way she recognizes. We have separated. I am relieved. I am absolved. I grieve for her anguish. Witnessing her feelings without taking action to assuage them is perhaps the hardest thing I’ve ever done in a lifetime of hard things in caring for her.
But I cannot fix this. Neither of us can go back. There’s only feeling our way forward.
Questions:
- What has been you experience, if any, with dementia in a loved one or family member?
- What are your thoughts and feelings about hospice care?
- What’s the hardest thing for you in supporting an elderly loved one?
- Do you worry about developing dementia yourself? Have you made a plan?
To read my fiction, serially published free every week, go here: 
by Jenny Rose | Jan 7, 2023 | A Flourishing Woman, Mind
Regular readers will know I struggle with money. The first time I wrote about it was here. About three months ago, I came across a creative prompt suggesting inviting Money to dinner and seeing what happened. I wanted to engage with it. I didn’t want to engage with it. I didn’t delete the article. It’s been sitting in the bottom of my Inbox sneering at me all these weeks. Finally, I decided to play with it …
I’ve unwillingly invited Money to lunch. She suggested it three months ago because she wants to see my new house. I’ve avoided it, tried not to think about it, even forgotten about it for days at a time, allowing the layers of my life to gently cover it, but then it shows up again, a small piece of grit in my psyche.
Finally I’ve reached a point where I’m ready to get it over with. She’s not going to get tired of waiting for me. She wants to see my new home, and she wants to have lunch. I can’t deal with the silent demand and the weight of her expectations any longer.
After all, it’s only a lunch, right? Two hours at the most.
Having made up my mind, I decide what will work best for me. I feel resentful, railroaded into doing something I don’t want to do. Why can’t I just say no and feel okay about it? Why do I feel I have to do this? I hate the feeling of being pushed, being badgered, being emotionally manipulated. Most of all, I hate how much I care about what she thinks. I hate my fear of her judgement.
Photo by Gemma Evans on Unsplash
I don’t want to do this. I really, really don’t want to do this.
But I feel I have to. I can’t possibly tell the truth. It’s lunch, for God’s sake. Why do I make such a big drama out of everything? What’s with the dread? Why can’t I just be a normal person, get it over with?
I eat alone, so my round, glass-topped table is small and there’s only one chair. I’ll bring another chair in. Which would be most comfortable for Money? She’s a small person. The second chair is an antique, but it’s not as sturdy or large as the one I always sit in. Would it be a subtle compliment to give her that chair, or is it too old-fashioned to be comfortable and welcoming?
I can’t put flowers on the table because the cats will destroy them.
I have cloth napkins that match the tablecloth I’m using; that’s good. That looks nice.
My kitchen, where the table is, needs work. We haven’t been in this house long. The kitchen is outdated and battered, the formica countertops stained and pitted. The stainless steel sink has old drips of paint in it I can’t scrub away and haven’t taken the time to tackle more resolutely. The refrigerator is too big and partially blocks the pocket door into the bathroom. The litterboxes are tucked under a bench along one wall near the door leading to the entry; I don’t yet have a good place to set up the cats. Their food and water are on a boot tray on the floor in the kitchen. The floor is lovely old pine with wide boards, scratched, scarred, stained.
I try and fail to see my home, my kitchen, my kitchen table, through another’s eyes. It so clearly needs work, but, to my shame, I don’t have the money to get the work done. I may never have the money to get the work done. Yet I’m grateful to have a roof over my head, and this lovely old house as a refuge from the world. I love it. I don’t want to have to defend it or feel ashamed I can’t give it the care it needs right now. It’s clean, at least.
New Home, May 2022
Since this invitation was not my idea, and Money is not a friend, I don’t feel I must make a meal. I basically eat meat and high-quality animal fat. I don’t have the time, skill, or money to make an elaborate meal. I’m afraid to make something simple, like a big beef stew. Whatever I do, I’ll feel it’s not good enough. We agree, Money and I, to get a to-go order from a local restaurant. That way, if she’s disappointed, it’s got nothing to do with me. I make sure to insist I pay for my own order. I don’t want any favors from her.
I know the cats are going to be on the kitchen counter, in the sink, walking across the stovetop. It’s what they do. There’s no way to keep them off the counters. Believe me, I’ve tried it all. One of them will probably choose the time we’re sitting a few feet away to have a big, stinky BM in one of the litter boxes with lots of noisy scraping and covering while we’re eating. Then they’ll jump out, scattering litter across the floor, come into the living room adjacent to the kitchen, and scoot their dirty bottom across the carpet and try to cover that. I’m mortified, just thinking about it. Do I pretend it’s not happening, like when you’re talking to a cute guy and your leashed dog squats to take a dump? Do I get up from the meal, scoop out the litter box, spray the scoot mark with stain remover and sponge it away while it’s still fresh and visible? I can keep them off the table, at least, while we’re sitting there eating. But there might be cat hairs.
Who am I kidding? There will definitely be cat hairs.
What will we talk about? That one is not so hard. I’m good at drawing people out. Most people love talking about themselves. A few good questions can get the ball rolling and I can stay safely concealed.
When Money arrives, I greet her at the door, hoping she doesn’t notice the rotted sill and threshold, the damaged door frame, and the fact that the outside door has gaps underneath it large enough to admit a squirrel in search of winter housing. I take her through the lovely, shabby, wood-lined sun porch, another door that has clearly been kicked in at some point, and into a narrow little hallway leading to the kitchen door. Everything is clean, swept, mopped, scrubbed. I give Money the tour of my living space. The cats come to investigate. (Does Money even like cats? I don’t know. I don’t want to know in case the answer is no. If she doesn’t like cats, one is sure to jump in her lap.)
Izzy & Ozzy; Fall, 2020
Money has picked up our order. I gather cutlery, plates, glasses. We sit down to eat. I am nervous, tense. The last thing I want to do is eat, but I do. I ask a couple of questions to get her talking and we chat in between bites. I wait for the curled lip, the sneer hidden within polite words, the fleeting contemptuous expression on Money’s face I know will be coming.
Money’s fingernails are unpainted. She’s wearing plain gold hoops in her ears. She’s dressed in unmatched leggings and a sweater. No makeup. I realize I expected something quite different …
And then my flow dried up and I came to a sudden stop, realizing I expected, in fact, my late maternal grandmother, who was always made up, bejeweled, well-coiffed, and wore little designer or custom-tailored (in Hong Kong) skirts and jackets and high heels. I expected her gold watch, expensive perfume, perfect manicure, and big, heavy rings. I expected her vivacious social cocktail chatter (gold monogrammed cocktail napkins). I expected her small brown eyes to turn mean, to tell me to act like a lady, to use my napkin, to keep my knees together. I expected the Jekyll-and-Hyde experience of watching her flirt, even when well into her 80s, and smile, and bat her nearly denuded eyelashes, still thick with mascara, with every male in the room and then the sharp little knife buried in a smiling comment or an aside about my looks, my conversation, my choices, and my behavior.
Gram, as we called her, had money. A lot of it. She was widowed young, inheriting considerable wealth from my grandfather. When her daughter, my mother, was divorced with two young children, Gram financed the family. By which I mean she demanded invoices, receipts, and bills, and gave Mom just enough to cover things and no more. No allowance. No lump sum. Mom had to ask specifically for every penny. Gram made her grovel. It was an exercise in humiliation. When Gram came to visit she hounded Mom about her marriage (Gram hated my father), her divorce, her stupidity and bad judgement. Mom went back to school to get a degree in order to get a job and support her children. We became latch key kids. I was assigned to care for my younger brother; we both were assigned to care for the animals, though the horses were sold during the divorce, taking the core of Mom’s happiness with them and leaving only bitterness and grief behind.
Photo by Hailey Kean on Unsplash
Every night, after I went to bed, I listened to Mom cry while she sat at her desk in her bedroom down the hall and dealt with the bills and finances or did coursework. I was often hungry because I felt guilty about eating food Mom would have to ask Gram to help pay for. I was 11 years old. Yet Mom remained loyal, thanking Gram for her grudging support, telling everyone how lucky we were to have her mother, who loved us, to help out. I don’t think she dared do anything else. Mom cared for her mother until the end of her life, when she died in a nursing home in her 90s.
Only one time did Mom break down in front me. “I’ve never pleased that woman one single day in my life,” she sobbed. It was true. She didn’t. And she tried every single damn day. I never pleased Gram a day in my life, either, but I didn’t try. I did not love my grandmother.
That moment of truth was never referred to again. By either of us. I’m sure, had I tried to talk about it later, Mom would have denied saying it. The world, especially her male relatives, saw Gram as charming, entertaining, gregarious, and generous. She could be all those things. But could also be abusive, toxic, selfish, and manipulative. She became (I discover), in my mind, the face and personification of Money. Money weaponized. Money withheld. Money rather than love or true connection. Money as a tool for power, control, and shame.
Every dollar of “help” Gram gave us was, as far as I was concerned, soaked in Mom’s blood and tears.
So, I’ve had a difficult relationship with money. Surprise, surprise. This exercise revealed to me the roots of my self-sabotage and conflicted feelings about “success,” which in my family meant plenty of money. In many ways I feel very successful, but I’ve always struggled financially. The work I’ve done and loved (being a librarian (yes, I have a degree); working with animals, children, the elderly; teaching swimming; lifeguarding; working in the public school system; working in hospitals; storytelling; and medical transcription) are not high-paying jobs in terms of money. The work of my heart, writing, has so far not earned me a single penny. All this contribution, all this creativity, all this love and care for animals and people and books, doesn’t count and is a matter of shame because I haven’t made much money. How sad and messed up is that?
My car is falling to pieces. My house needs work. I buy clothes at thrift stores. I’m a minimalist. I could use more money. I hate to admit it, but it’s true. It would help. A lot. But it wouldn’t fix everything I struggle with in life. I’m clear about that, too. And money is not love or success. Money is a tool, one I’ve mostly refused to consider learning to use. So I haven’t. What’s the point? I don’t have any! I’ll never have any. I don’t want Money to come to lunch because it’s wrong to need it and I do. I’m certain I don’t deserve it, because I’ve failed the family expectations, but I need it. Convoluted. Tricky. My personification of money in this exercise exposes a lifetime of shame about needing money, or any other sort of support or resource, to be honest. Which is ridiculous. Because the less money I have, the more I need it. And the more ashamed I feel. And so on.
At the same time, I’m proud of my contributions to the world. I’ve loved all the jobs I’ve had. I like to work. I like to volunteer. I have no plans to retire. I’ve been richly rewarded for my service in far more important and meaningful ways than monetarily. I’m proud of my self-sufficiency.
But those things won’t pay down the equity loan or fix the car. They won’t pay my bills.
Maybe I’ve never clearly seen Money at all, because I can’t look past my grandmother. Maybe Money doesn’t wear her face, but another I’ve never glimpsed. Maybe it’s time to grow up and out of that old anger and rejection of anything Gram stood for …
So this is the story of when Money came to lunch.
Questions:
- If you imagine an issue or feeling you struggle with as a person, what would that look like? What issue or feeling would you start with?
- What feelings are attached to your experience of money?
- How do you define success?
- What contribution are you most proud of? Is it the one that made the most money?
Leave a comment below!
To read my fiction, serially published free every week, go here:
