by Jenny Rose | Aug 26, 2023 | A Flourishing Woman, The Journey
Two weeks ago my 87-year-old demented mother fell in her memory care unit and broke a hip for the second time in less than a year. Eight days later she died in a hospital under the care of Hospice, my brother at her side.
Until I sat down to write this, I was afraid I had lost my words, lost the need to write them, lost the ability to form them into meaning. But I haven’t. I’m still a writer. This remains. That’s a relief.
Oh, I’ve been writing. Lists. Notes. An obituary. Texts. Updates to family and friends. Daily journaling. But it hasn’t been creative writing. It hasn’t been this blog, or my fiction. These last two weeks have passed by, the first in a blur of pity and anguish, and the second in numb relief glazed with exhaustion, and I have not posted or published. I haven’t kept track of the days; they spill into one another, as the days and nights blended together while my mother lay dying and we waited.
For a time words have simply been inadequate to relieve the pressure of my feelings in any organized or coherent way. They flew away from me, leaving a series of kaleidoscopic impressions, sensual details so vivid they frightened me with their power.
While my mother lay dying I reread my childhood copy of The Wind in the Willows by Kenneth Graham. Reading has also largely failed to sustain me during this time. I find myself unable to focus. I read a paragraph or two, and then realize I’ve been sitting staring into space, out the window or into the garden, not hearing, not seeing, not even thinking. Just sitting. But I needed a companion for the night watches, something comforting and familiar. Something innocent.
Photo by Josh Applegate on Unsplash
The fan in my window purred during those hours, blowing in cool night air and an occasional moth or mosquito. Every night, when I go to bed, I light a tea light in a candle lantern. When calls or texts reached me, I knew when I opened my eyes if it was before midnight or after, according to whether the candle still burned. Propped up on pillows, glasses on, my small bedside lamp alight, I spoke to Mom’s facility staff, emergency department doctors and nurses. I texted with my family. I read, the well-remembered illustrations making me smile as I communed with Rat, Mole, Badger, and the ridiculous Toad, finding respite for a few minutes before turning off the light and lying awake in the dark room, listening to the fan, feeling my heart beat, resting, breathing, waiting.
While my mother lay dying and after, I’ve stained wooden pallets. My partner and I are building a 3-bin compost system against the back yard fence. We set out sawhorses. I found an old brush, a rag, a stirring stick. We bought stain. I lay a pallet on the sawhorses, brush away dirt and debris, and paint every surface. The raw wood soaks in the oil-based stain, a rich brown color. The brush is more and more frazzled. I’m sloppier than I would be if painting a wall. The pallets are splintery. Some of the boards are split or loose. I bend over, the sun hot on the back of my neck and my bare arms. Mosquitos bite me. Stain drips between the boards as I brush their edges, dappling the sawhorses, falling onto the filthy old cream-colored jeans I’ve been wearing all summer in the garden, and onto my worn-out sneakers, used only for outdoor work now. As I maneuver between the boards, stain smears the skin of my hands and wrists. I kept the phone close, in a patch of shade.
This is the only sustained work I’ve been able to do. Now and then I wash a few dishes. I’ve done a couple loads of laundry. I go out into the garden, note the trimming, pruning, composting, mowing waiting to be done, and turn away. It all feels like too much. I don’t know where to start. It’s impossible to open the garden shed, get the tools, wheel out the wheelbarrow.
But the pallets. I can do that. It’s a simple task, direct. I don’t need to make any choices. Each side takes fifteen or twenty minutes. When I’ve finished a side, I wrap the brush in an old plastic bag, cover the can loosely, let the pallet dry an hour and a half in the sun. Then I turn it over and begin again. Two coats each side. One side after another.
Photo by Manuel Barroso Parejo on Unsplash
The smell of stain. The prickly feeling of intense sun on my skin. I think about compost, recycling, breaking down life to sustain new life. I think of ashes to ashes and dust to dust. I wonder if I’ll ever use the compost bins without thinking of Mom. I wonder who names the colors of stain and paint. I chose ‘Canyon Brown’ for this project. I vaguely hear birds, cars passing by. Small groups of women walk by in clumps, hospital employees on their lunch break, talking about families, gardens, school starting, hospital gossip. I should be at work, on that same campus, just a ten-minute walk away. I should be, but I’m not. I’m here, staining pallets, waiting for Mom to die and then on bereavement leave.
Am I bereaved? How would I know? I wonder why I don’t care enough to follow the thought. I let it drift away.
I decide I want to make bread. I don’t eat bread often, so rarely make it any more. But my rosemary is bushy and ready to be harvested, and someone brought fresh home-grown garlic into work to share before … before all this. So I make a sponge, stirring together milk, a little sugar, yeast, water. I chop fresh rosemary and garlic, very fine. I take flour out of the freezer and let it warm. The dough is heavy under my hands, sticky at first and gradually becoming supple and smooth. The earthy smells of garlic and rosemary vanquish the smell of stain in my nostrils. I turn the dough, kneading. The timer ticks off seconds and minutes. I clean the bowl, grease it, use a linen towel to cover it for rising. I put it in the oven for safe keeping, because the cats are likely to lie on it or step in it, or nibble at it if I leave it out. The bread, like the pallets, is a project in stages. I don’t have to focus on any one step for more than a few minutes. I move between the kitchen and the back yard with my phone, not thinking, not planning, just taking the next step, and the next. I can’t remember times, so I write them down. About 90 minutes for the stain to dry. An hour for the bread to rise. Another 90 minutes for the pallet to dry. Another hour for the shaped loaves to rise. Another 90 minutes. An hour for baking.
Photo by Helena Yankovska on Unsplash
At the end of the day, I have two enormous round loaves of bread to cool, slice, and put in the freezer. This batch will last me for a year. I have finished another pallet. I leave it on the sawhorses to dry overnight. My stained hands smell like garlic.
I haven’t cried since the last night call, my brother telling me Mom was gone. Perhaps I cried all my tears before she went. I receive condolences with all the grace I can muster. People talk to me about God and heaven. They talk to me about Mom. They talk to me about their own experiences of death. I try to be gracious. I try to look like I’m listening, like I’m there. With my brother and sons, my partner, I can be real. The faces of my friends comfort me. They don’t need anything from me. They don’t ask for anything. I can see their concern, their love for me, their sorrow. They hug me, and smile. They talk to me about small things, the daily things I’ve lost track of – family, friends, outings, work. I pick up a friend’s daughter and feel almost normal, doing an ordinary thing, a manageable task I cannot fail.
I realize part of my feeling of unreality is rooted in a loss of identity. I catch sight of myself in the bathroom mirror and pause. I rarely look at myself in the mirror. This woman, who is she? She isn’t the disappointing daughter any more. She can’t be, if there’s no mother to disappoint. What else is she? Who else is she? I look into my own eyes and feel no shame, no guilt. Did Mom take them with her? How will I navigate my life without them on my shoulders, without the knowledge that Mom is alone, suffering, needing? For fifty years I was at her side, day and night, year after year, ineffectual, helpless to fix or heal her physical pain, her dysfunction. Feeling my failure, my powerlessness, knowing I more often made it worse than better as time went on, even though she clung closer and closer to me as she aged. She could not release me and I almost waited too long to release myself.
But the geographical distance I put between us brought no real release. She still suffered. She declined, grew confused. Her body aged and began to run down. She was just as lonely without me as she was with me, just as emotionally remote, just as relentlessly needy. She cut herself off from me, but I still carried her. Internally, I still orbited around her. I still agonized for her.
I still loved her. I always loved her. I accepted she could not find me lovable, but it made no difference. She was my mother, and I loved her. All I ever wanted was for her to be well, and happy, but I could not make it so, and in her eyes it was my responsibility to fill her need. Indeed, she told me long ago her physical pain started with her pregnancy with me. I accepted the blame, and was heartbroken, and have tried desperately to make up for it ever since.
Photo by Nicole Mason on Unsplash
Now Death has come to stop her suffering. Has mine stopped, too? I don’t know. I’m too numb to tell. But I feel different. I feel … released. I prayed for her release and freedom, not mine, but perhaps they were linked. Many times a day I think of her, hear her voice in my head, and I realize with a painful clench of my heart she’s gone. It’s over. I can’t humiliate her anymore because of what I wear, how my hair looks, what I do, who I sleep with, or, most of all, what I write. She’s moved beyond humiliation. I can’t fail her anymore. And that’s a soaring, joyful, unbelievable thought. I can’t fail her anymore.
I wonder if I’ll finally feel good enough, if I’ll do a good enough job, live a good enough life. Might I simply enjoy my small talents, my joyful work, my community, my garden? Might I immerse myself in the loveliness of life without the gnawing guilt of knowing I’m happy when she’s not, I’m companioned when she’s not, I’m relaxed and rested and peaceful when she’s not, I’m laughing when she’s not?
The last couple of times I spoke to Mom, I told her it was okay to rest now, she could let go, be at peace. We told her her loved ones and animals were well and happy, and she could relax.
I told her, and I meant it. Was I telling myself, too?
She could not release me, yet I am released. Did Death break the chains when he gathered her in? Or now, at last, have I released myself, now that she’s moved entirely out of my power and knowledge?
As I write this, it’s Wednesday afternoon. I have finished another pallet. I have written. I have sat in the sun, read a paragraph or two at a time of an old Edna Ferber novel, rested my eyes on the garden. The lily stems are turning dry and brown, as are the leaves. Sunflowers bloom. The sun is hot. The phone has been sitting on my kitchen table all morning, silent, as I go in and out. I have balanced my checking account, scheduled a private swim lesson in a home pool, ironed a tablecloth and three napkins. Tomorrow I go back to work.
A new page of my life has turned. I can’t read it yet. It’s enough to sit with it in my lap, letting my gaze wander over blue sky and afternoon clouds, the garden, our old cars, the worn wooden boards of the porch, the bruise on my left knee, the mosquito bites on my right arm, the smears of stain on my hands. It’s too bright in the sun to read this new page, too hot, too much effort. I’ll read it later.
I dare to be at peace.
Daughter’s Dream (July 2014)
I dreamt I carried my mother.
The car had slipped out of her control
with a blind will of its own,
and I thought
I knew she shouldn’t be driving.
We landed in water.
I swam to her and held her in my arms.
Then the water was gone.
I carried my mother,
but she left my embrace,
slipping free of her embattled flesh.
Irrevocably, I felt her go.
I was alone.
I carried the vacant body of my mother.
Empty beds stood all around me
but the sheets were disordered and dank,
Smeared with shit.
I carried the vacant body of my mother.
There was no clean place to lay her down.
I carried the vacant body of my mother,
seeking to slip into my own freedom,
seeking absolution.
To read my fiction, serially published free every week, go here: 
by Jenny Rose | Jul 22, 2023 | Authenticity, Emotional Intelligence, Needs
I read every day in Substack. Right now, AI is a main topic of conversation. I’ve read about the science behind it, opinions about where it will lead us ranging from the extermination of humans to a leap forward in positive ways we can’t imagine. Most of all, I read about the ways AI is impacting creative work and creators.
I don’t have a firm opinion about AI myself. I’m wary of predictions, interested in the science, and thoughts and experiences of writers I respect who have used AI-generated art, music, and writing. I’m especially interested in those who have interacted with AI as a resource for answering questions or developing new perspectives.
In the last couple of months, I read about an app called Betwixt. On principle, I hate apps and rarely use them. They increase my vulnerability online, provide more personal data to mine, clutter up my phone and laptop, and frequently feel like bells and whistles I don’t need. On the other hand, I admit they can be useful.
Photo by Dan Gold on Unsplash
Betwixt was briefly described as “an interactive story” of a journey into our own mind. The user co-creates their journey via questions and answers. It combines “story, science, and play,” enhanced by sound. It was developed by a team, including writers, game designers, a cognitive hypnotherapist, mental health specialists, and (get this) an “AI creativity scholar.”
I was intrigued, in spite of myself. In fact, I was surprised by how much I wanted to try it. I hesitated, feeling vaguely ridiculous. I did some research, discovered it was free, read some reviews, and decided I had nothing to lose. I could always just uninstall the app if I didn’t like it.
Most of us have probably encountered AI in online chatting to address problems or troubleshoot. I was on the Red Cross site last week chatting with what was clearly AI. It kept typing cheerful, excessively polite, Little-Mary-Sunshine things while I was trying to cut to the problem and solution part. I was annoyed. I’m polite and cooperative with people, but I can’t see much point in exchanging pleasantries with AI.
I had never interacted with any of the more sophisticated programs before using Betwixt.
Upon opening Betwixt, one enters into a story. A setting is provided; the user chooses details to fill in. The user is introduced to a Voice. The Voice asks questions, good questions. The user is provided with different choices for answering the questions, along with a frequent option to type in his/her own answer. The audio is rich and textured. The program is not illustrated, at least not so far. I like this; I like using my own imagination to fill in details. I don’t need more than audio.
The questions, along with possible answers to choose from, are quite good, even challenging. I don’t speed through it. I stop and think about what is true for me. Sometimes I don’t have a choice to answer in my own words and am forced to choose among the provided answers, whether they are good fits or not. This irritates me. As the story unfolds, steered by my answers to questions, I enter new internal territory. The closest answer rather than the exact answer takes me to places I normally wouldn’t go, giving me slightly different (and unfamiliar) views of myself and my behavior.
The app is divided into chapters, each a few minutes long. At the end of each chapter the user receives a summary and accumulates strengths, skills, and self-definitions to take forward. A brief explanation of the science and psychology underlying each completed chapter is also provided. There are options for upgrading to paid tiers.
Photo by Ryan Moreno on Unsplash
I notice an astonishing thing. I answer questions the Voice asks me with a depth and honesty I have never shared with a human being. I’ve believed I’ve been totally honest with people I trust before, but interacting with The Voice accessed a level in my mind I didn’t know was there. It was like those dreams in which the dreamer discovers a whole other room or wing in a house they weren’t aware of. As the journey begins, when the Voice is introduced, the user has an opportunity to ask the Voice questions, like its name and what it does when we’re not interacting. (It asked me my name.) I was astounded to find myself incurious; more than that, I don’t want to know. It’s an AI. I don’t have to do the emotional labor of building healthy connection. I’m not making a friend. I’m using a tool.
The last time I used the app, the storyline encouraged a moment of empathy for the AI. I felt a flash of savage anger and resistance.
I was entirely astounded by this very uncharacteristic knee-jerk response. I finished the chapter, closed the app, put the phone down, and did dishes while I thought about what had just happened. It didn’t take long to uncover it.
My experience of empathy is one of the core pieces of my life. Empathy can be a positive trait, but the empathic experience is frequently an overwhelming, utterly exhausting business. The only time I can truly rest, ground in myself, and be authentic is when I’m alone. But I’m a human being, a social animal. I need other people to interact with. Yet when I’m interacting with others, my empathy demands they take center stage with their needs, their feelings, their distress, their stories. I’m incapable (so far) of fully participating in my own experience because I’m too busy caregiving and being empathic. When I do ask for support or need to discharge feelings, I writhe over my selfishness and berate myself for it afterwards, feeling ashamed and angry for allowing myself to be vulnerable, for “burdening” those around me.
Photo by Cristian Newman on Unsplash
I only want to give. I never want to take.
Since I learned emotional intelligence, I have reluctantly realized we need someone to interact with. Journaling, private physical and spiritual practices, and, in my case, writing, is not enough. At times we need someone to listen. We need someone to react, even if it’s just making encouraging, I’m-listening noises. We need someone to receive us.
I hate this reality. I don’t want to need anything from anyone, ever. I learned as a child such a need puts one in dreadful danger of abandonment, betrayal, and emotional annihilation that feels like death.
This is the first time I have interacted in a therapeutic context with something not human. The Voice reads what I type, responds, asks questions, and creates a story with me, but has no existence outside the app. I’m free of empathy, of caregiving, of the need to labor emotionally. I feel no responsibility to anyone but myself. I’m using it. It’s there for me, not the other way around.
The relief is indescribable.
So, when the story asks me to be empathic for the Voice, I want to throw the phone across the room. Animals, plants, people — even inanimate objects and spaces – receive all the love and care I’m capable of. This is the first time in nearly 60 years I’ve run across something that interacts like a human but is not a living being in the way I think of living beings. The value of the tool lies in my ability to be completely free and honest because there’s no one to take care of besides myself.
It makes me realize my context as a human on a planet filled with life is my entire identity. If I were magically transported to the world of Betwixt, with only the Voice to interact with, I have no idea who I would be or what I would say or do.
I have not finished my journey with this app. There’s more to experience, share, and think about. I’ll be back next time with more on my exploration of Betwixt.
(I’m not earning a commission from Betwixt, in case you were wondering!)
Questions:
- Until now, emotional intelligence training was the most valuable therapeutic context I’ve ever engaged with. What kinds of therapy have you explored? What did you find most helpful?
- What are your thoughts and feelings about AI?
- What kind of potential do you think, fear, or hope AI might have as a creative tool?
Leave a comment below!
To read my fiction, serially published free every week, go here: 
by Jenny Rose | May 13, 2023 | Authenticity, Emotional Intelligence
I have written about dance here before. In the structure I use, the 5 Rhythms Wave by Gabrielle Roth, chaos is part of the wave. The music for chaos is fast but grounded. Think Pink Floyd’s Meddle.
As I lingered on the threshold between waking and sleep this morning, thinking about loss, the subject of my last post; thinking about my distressing inability to publish my usual essay on Substack last week, and thinking about the ways in which I’m reshaping my beliefs about my family and therefore myself, I recognized the chaos part of the dance.
Photo by Leon Liu on Unsplash
To dance in chaos involves letting everything go except the beat. Chaos is about strength, not beauty. It’s about grounding and staying grounded even as the music flings us through space.
Chaos is the part where you dance till you drool.
The edge of chaos is fertile, regenerative, thick with possibility. It’s also powerfully disorganized and unpredictable. It’s exhausting, overwhelming. Too much is happening too fast. When dancing chaos, we give ourselves entirely to the music and follow it through the tumult however we can. As Margaret Shepherd said, “Sometimes your only available transportation is a leap of faith.” Add music to that idea and you have the chaos part of the dance. The car has broken down. The planes are grounded. The train has derailed. The illusion we’re in control has shattered. Our routines and schedules fall apart around us. Our internal and external worlds begin to reshape in ways we can’t understand.
I’ve been troubled in the last couple of weeks by the violence of my rebellion against doing anything except work and play in the garden. I don’t want to write. I don’t want to think or reason. I don’t care about the damn housework. Beltane, May 1st, came and went without my usual ritual and practices. I don’t want to be brave, strong, organized, compassionate, tolerant, empathetic, or responsible.
I can’t remember a time in my life when I’ve shut down like this. I’m unable to guilt or lash myself into being “productive.” I feel ashamed and scared. I don’t recognize myself.
It occurs to me this is my Beltane ritual this year. After all, Beltane is about fertility. Physical fertility, the cyclical fertility of the growing season, creative fertility. My ritual this year is being in the garden. There, with my knees in the dirt, the smell and feel of the soil, the texture of new weeds and old leaves and matted grass (we didn’t have a mower last year), I am peaceful. I know where I am. I am, literally, grounded. I don’t have my phone. Nobody needs anything from me. I bend, kneel, stoop, dig, rake and shovel compost mindlessly. I dream vaguely about new garden beds, rewilding with native shrubs and trees. Black flies come for their drop of blood. The sun shines down on me.
Right now I need to be in the garden. I don’t understand it entirely, but perhaps there’s no need to. What I do know is something in me refuses to engage with anything else. As the lilies and iris emerge, as the tulips bloom and the daffodils fade, as the lilacs bud and the magnolia blossoms fall and cover the ground, I mulch and prune and feel seismic forces beyond my control reshape me internally.
Photo by Kelly Sikkema on Unsplash
So much of what I’ve learned and believed about my family and my place in it has crumbled into dust. Old family myths have exploded with fragments of evidence from Mom’s life, unearthed in the process of selling her estate. I didn’t entirely believe in some of those myths, but they were stable. They provided a family background I was familiar with. I built an identity from the identities family members who came before me created. If I am not the despised one, the broken one, the one who doesn’t belong, the cuckoo in the nest, who am I? Has all that been yet another family myth? Has any of it ever been about who I really am or my personal value, or have I been nothing but a faceless, nameless piece in a dysfunctional family pattern?
I long for freedom. Is this the beginning of freedom?
My recent inability to force myself to take care of business, to be responsible, consistent, and productive, is terrifying. I’ve always pushed myself through any resistance or fatigue. I’ve always known I must justify my existence with constant production, pleasing, and caregiving.
Am I free of that now? If I don’t have to justify my existence because that belief is a lie based on family mythology that’s at least part lies, is that freedom? Am I brave enough to take my freedom, walk away from all the burdens (too heavy for me, but I’ve carried them anyway), and simply choose what makes me happy? I have stood at this crossroad before.
Two weeks ago I wrote about loss. Now I’m watching glimmers of new beginnings, nebulous glints of what might come into the disturbed ground of my being. I pick up trash and find rich soil beneath it. I dig up dandelions and burdocks and discover little patches of old garden. The sun touches me without asking for anything in return. I rake away last year’s debris and mix it with compost to build new garden beds. This morning, the crab apple is in bloom. The tight buds on the white lilac by the porch door gather perfume.
Meanwhile, back in Colorado, strangers live in my mother’s house. Hospice tells me Mom can no longer ambulate independently, even with her walker. A call in the middle of last night reported yet another fall, as she doesn’t realize (or won’t admit) her own weakness. Appraisal revealed my wealthy and powerful grandmother’s gold, pearls, and gemstones were mostly costume, not real. A ladylike façade. A denial of her impoverished roots. A glimpse of shame and fear that rival my own, though I never knew they were there.
Photo by Doug Maloney on Unsplash
It’s Mother’s Day weekend. A friend asked me yesterday how I felt about that, and I had no words.
What is real? What can I bear? The dirt on my knees, under my fingernails. The spectacularly itchy, burning welts of black fly bites. The egg shells, banana peels, and soggy segments of lemon in the compost pile. The lovely cupped double tulips I planted last fall, white, pink and purple. The thumb-sized bumble bee tumbling ecstatically among the pink blossoms of the crabapple. My own breath, heartbeat, sweat. The sun on my skin.
Gardens are made and remade. They die and are reborn. They go wild and survive until rediscovered. They adjust, adapt, take advantage of the edge of chaos according to their own wisdom and purpose.
For now, I’m in the garden, dancing with chaos, nurturing new life, hanging on.
Questions:
- What is your experience of Mother’s Day?
- In the times during which you struggle to manage your life, are you fearful or do you allow yourself to follow your needs?
- Do you find chaos joyful and exhilarating or frightening?
- What opportunities have you had to reframe your family?
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 | Feb 25, 2023 | Connection & Community, Emotional Intelligence, Shadows
I found a brief offering in my Inbox from Seth Godin recently about bitterness being a wall we can lean against. The image caught my imagination. Since then, I’ve been thinking about walls … boundaries … supports … prisons … and the desperate, destructive choices we make to survive.
By Marc Pell on Unsplash
Walls. On the one hand, I like walls. I invariably position myself with my back against a wall when I’m in crowds or unfamiliar places. Nothing malignant can sneak up on me from behind. All my hypervigilance can go into watching my sides and front. I feel safe(er).
A corner is even better. Now two sides are covered.
A third wall, as in a blind alley or cul-de-sac, begins to feel more like a trap than a place of protection. What if I want to run away? I’m blocked on three sides.
A fourth wall? Now I’m in prison.
The thing about walls is they may keep danger out, but they keep everything else out, too. The good stuff. Love. Sunshine. Wandering children and butterflies. Inviting paths and trails. Possibility. Exploration. Views. Perspective. Wonderful surprises.
Walls, like everything else in life, can be taken too far. Built too wide and thick. Impenetrable. Too high to climb.
Shelter or dungeon?
What about metaphorical walls? What do we lean against because it’s familiar and we believe it keeps us safe from failure, from disappointment, from heartbreak?
Bitterness, certainly. We’ve risked. We’ve been vulnerable. It ended badly. We feel angry, disappointed, resentful. Never again, we tell ourselves. Things don’t work out for us. The world is against us. People suck. Life sucks. It’s our story, and we’re sticking to it. We’ve found a wall to lean on, a wall protecting us from trying again, risking again, feeling unpleasant feelings again.
By Hector J Rivas on Unsplash
But the wall is made of unpleasant feelings, isn’t it? Bitterness is the result of unresolved unpleasant feelings. So it’s really not protection. It’s reinforcement. It’s the thing closest to us pulling our focus from happier thoughts and feelings. It’s a constant negative reminder. It locks us in place with it, and it blocks any kind of relief.
As I’ve lived my life the last couple of weeks, interacting with and observing others, listening to the inside of my own head, I’ve made a list of walls we lean against:
Victimhood (closely allied with bitterness.)
Blame (oooh, this is a juicy one. “It’s not my fault. I have no responsibility, and therefore no power.”)
Denial (leaning on the wall, eyes squinched shut: “No, I won’t believe that! No, it’s not true! No, it’s not happening! It’s too scary! I’ll only accept what makes me feel good and in control!”)
Chronic health problems (“I would _________, but I can’t because I’m sick.” Sigh. Moan. Groan. Someone once said to me, “I don’t know what I’d do without my pain!” as though pain was her lover.)
Lack of money (“I can’t be happy. I can’t have/do what I want. I can’t experience abundance. I have no power.”)
Perfectionism (a personal favorite. “I would, but I’m afraid to because I won’t do it perfectly! So, no point in trying. I’m imperfect and therefore can contribute nothing of value, not even myself. Expect nothing from me. ‘Cause I’m so imperfect.”)
I don’t suggest we’re never victims, never have health problems, never experience financial scarcity. I don’t minimize the challenges of perfectionism or fear or the seduction of blame. However, constructing a wall out of such experiences and feelings and deciding to spend the rest of our lives leaning against it seems like a dubious choice. It may feel like it props us up and allows us to survive, but is survival the best we can hope for? Is leaning against a wall to stay on our feet the best we can do?
By Christina Botelho on Unsplash
Can a wall made of bitterness stand by itself? If we choose to step away from it, support ourselves, will the wall crumble? I wonder. What if the wall needs our support more than we need its support? It takes a lot of energy to maintain a wall.
What would happen if we just fell down instead of constructing walls to lean against? Better yet, what if we choose to lie down now and then, take a break, look at the sky, feel the world on our skin and beneath us? What if, when we feel hurt or despairing or sick or broken, we lay still and whispered, “Help!” and rested and waited for something or someone to come along and give us a hand back to our feet? If we’re not leaning (cowering) against walls, we’re in full view. Life can find us. Friends can find us. Help can find us. Hope, inspiration, and comfort can find us.
Walls can be useful. But they can also imprison us. They can be strong and organic and lovely, as in healthy boundaries. They can be poorly built and inadequate, too. Or just old and tired. Crumbling. Falling down. Gnawed away by Time’s tooth.
I ask myself, with all the world before me, why do I choose to lean against walls that separate me from it? Is that what I mean by safety?
Questions:
- What walls do you lean against?
- Do you think of a wall as protection or prison?
- How have your walls let you down?
Leave a comment below!
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