Since I began this blog I’ve wanted to write about boundaries, not only because I myself am trying to develop better ones, but also because it seems to me boundaries are a large part of what’s broken in our culture.
We’re all aware of headlines from all over the world about human rights, ethnic and racial struggle, politics, sexual identity, religion and war. It seems to me boundaries are a core piece in each headline; an enormously complex piece of human function and dysfunction. How do we define, understand and effectively manage boundaries — both our own and those of others? How do we manage people who consistently violate our boundaries?
Trying to organize my thoughts about this is like trying to herd cats. That being said, I can choose a starting point, so I’m going to start there and see if the subject organizes itself as I write.
I approach most subjects with a definition and curiosity about what others are saying about it. A Google search for “boundary” tells me it’s a “dividing line.”
I’ve read two articles recently about boundaries. One is written from an emotional intelligence perspective and one is about human rights, kind of a sidewise look at boundaries through the idea of respect. Both have contributed to my mental soup on this subject.
My experience is that any piece of human function or dysfunction begins with myself. Self-reflection and self-inquiry are powerful tools for me, even though I occasionally wince at what I find!
Photo by Annie Spratt on Unsplash
So, let’s play a game. Open your refrigerator, or your pantry, or your cupboard. Look at a shelf where you keep food. Everything is in a container. The container around the food is a boundary. If none of that food had boundaries around it — well, that would just be a mess.
As we start thinking about boundaries from ourselves outward, let’s take a jar of strawberry jam. It’s a glass jar with a screw top lid and it’s clearly labeled strawberry jam. Effective boundaries, it seems to me, begin with a correct identification of what’s being contained. We have to know who we are before we can create healthy boundaries, because our boundaries won’t look like someone else’s. They’re not one size fits all. You can’t keep strawberry jam in an eggshell. You don’t want raw eggs in a jar labeled strawberry jam. A can with the label torn off could still be food, but it’s hard to use it effectively.
Mislabeling happens in two directions. There are those externally who tell us who we will, should or must be (or who we will, should or must NOT be), and there are our own internal expectations of who we are and what we need. If something goes wrong right here, at the first step of boundary work, we’ve got problems.
This takes us directly back to several dynamics I’ve posted about — expectations, stories, saying yes and no, and pleasing people among them. My experience in my own western middle-class culture has been painful pressure to be who I’m expected to be, not who I really am. If this can happen to me, a straight, white, average-looking, average-sized, able-bodied, unambiguous female, then I know hundreds of thousands of people out there are being systematically emotionally and spiritually maimed in ways I can’t begin to fathom.
This opposition to knowing and being ourselves is everywhere. Capitalism is based on the idea you’re not okay as you are, but you will be if you buy…whatever it is.
Photo by Viktor Forgacs on Unsplash
I’m strawberry jam. I’m not grape jelly, even though it’s more valuable. I’m not blackberry jam, even though it’s more attractive. I’m not raspberry jam, even though it’s more popular. Go ahead, glue a label on me that says “currant jelly.” I’m still going to be strawberry jam, and my true boundaries are a glass jar with a screw top lid and a label that says strawberry jam.
As cruel as it is, the external pressure we feel to be other than we are is not the most damaging thing. The most damaging piece is what we do internally to ourselves. I can spend my whole life with my fingers in my ears and my eyes squinched shut saying I’m peanut butter, but I’ll always be strawberry jam. Other people will know it. I’ll know it. Nothing will ever work for me because I’m in the world trying to be something I’m not. I won’t find my people. I won’t find my place. I won’t figure out and make my contribution. I won’t have effective boundaries. I won’t be happy.
Not only that, but my inability to manage and maintain effective boundaries affects everyone around me. If my jar is cracked or broken, strawberry jam is going to ooze out onto the shelf. It’ll make a mess. It’ll attract pests and predators. It’ll be wasted and it will impoverish the peanut butter, the toast, the butter and whatever else might have connected with me as strawberry jam.
Photo by Jonathan Pielmayer on Unsplash
In order to have healthy boundaries we have to know what we need. In order to know what we need we have to know who we are. Finding out who we are can be a terrifying prospect, especially if we’re captive to what other people, media, our culture, and most of all ourselves tell us we MUST be in order to get loved and find happiness, meaning and purpose.
I have made up my mind I will build better boundaries. I will figure this out. If anybody out there will walk beside me, I’ll be very pleased. I know I’m not the only one struggling with this. In fact, I don’t know anyone who doesn’t have trouble with some piece of it.
My starting point is right here, with myself. I’m strawberry jam and my boundaries are a glass jar and a screw top lid. My label says strawberry jam. I’ve no interest in forcing, persuading or coercing anyone else to be strawberry jam. I just know what I am. It might be that strawberry jam is outlawed, shunned, shamed, beheaded, tortured, raped, imprisoned, damned to Hell, unsaved, unenlightened, unlovable, unwanted, unworthy or lined up against a stone wall and shot under a hot sun. I’ll still be strawberry jam. I’m not confused and I’m not going to feel ashamed about it.
Peanut butter and strawberry jam sandwich, anyone?
All content on this site ©2016
except where otherwise noted
This is the second of I’m not sure how many posts about boundaries. See last week’s post for the beginning of the discussion!
Today the aspect of boundaries I want to explore is the one I have the most trouble with. This aspect concerns managing boundaries with people we love.
Continuing with our metaphor of food on a shelf, last week I was comfortable with my identity of strawberry jam. I know who I am, I’m in an intact container (most of the time) and I intend to be labeled accurately and effectively. That’s all INTRApersonal start-where-you-are work.
However, there’s other food on the shelf. The universe doesn’t revolve around strawberry jam, alas! In fact, next to me is a jar of dill pickles.
Photo by Viktor Forgacs on Unsplash
We’ve been together as long as I can remember, sitting side by side on the shelf. We’ve watched other food in other containers come and go. The eggs in particular have quite the turnover rate. We’re companions, friends, and in fact it’s not an exaggeration to say I love Pickles.
But one day I notice something has changed. The clear green juice in the jar with floating bits of herbs and spices is getting cloudy. And is that — could it possibly be — grey fur along one side of a pickle?
Disaster. Catastrophe. It can’t be true. My beloved Pickles is beginning to grow fur. Everybody on the shelf knows what this means. Sooner or later, the refrigerator/cupboard/shelf Gods will cull Pickles. Gone forever.
I can’t imagine my life without Pickles.
Naturally, I want to help. No kind of food could possibly want to wear grey fur. There must be something I can do.
If I love Pickles, I must be able to fix this.
If I really, truly love Pickles, and my love is real and unselfish and unconditional (and Pickles is worth that kind of love), there’s a way for my love to fix this.
If I fail to fix this, my love is at fault.
That, ladies and gentlemen, eggs and bacon, is where I lose my boundaries. It’s all very clear and self-evident when it’s laid out in black type on the page, or in this case, screen. Love can’t fix everything. Love isn’t always enough. Sometimes we can’t “help” other people. Bad things happen to good people all the time. Loss is part of love. Right?
My brain understands this. My brain functions pretty well. My brain is not the problem. It’s my heart, my emotions, my stories, my beliefs and my expectations that are unruly and stubborn.
Photo by juan pablo rodriguez on Unsplash
Perhaps I haven’t explained it well, my connection with Pickles. I know him better than anyone. I understand him. He’s the most important person in my life. He’s part of who I am. If I lose him, I’ll lose part of myself. I thought nothing could ever part us, or damage our respect and trust in one another. In fact, we’re so close we don’t need boundaries.
(Naturally, he feels the same way about me. He doesn’t say so, but one doesn’t expect pickles to emote like strawberry jam.)
Loving fully and unconditionally means no boundaries, right? Isn’t that what we learn? If we love unselfishly, completely, without reservation, then boundaries are unnecessary and we can count on getting that same kind of love in return. Loving well equals being well loved. Isn’t that the way it works? Only a selfish bitch maintains boundaries, an unloving, cold woman, a ball breaker. Only an indifferent, unfit mother maintains boundaries between herself and her children. Only a judgmental, critical, power-hungry female protects herself with boundaries. Generous, attractive, truly loving people have no need of boundaries. They don’t count the cost. They always say yes. They give freely of their resources to whoever is in need without expectations or strings attached. They never keep score. They have no needs, these lucky, healthy, beautiful, abundant people. They feed and nurture the world.
Photo by Jordan Whitt on Unsplash
Boy, does this world need people like that. That’s the kind of woman/friend/mate/mother/daughter/sister I want to be. If I want to save Pickles, that’s the kind of person I have to be.
Here’s the thing.
I can’t be that. I’m not sure anyone can be that.
I’m not talking about ideology here. I’m not qualified for or interested in religious debate. What I’m saying is I can’t be a bottomless, endless nurturer and giver with no needs, and I’m not convinced anyone else can, either. I know some who say they can, pretend they can and/or expect others to be, but I’ve never met anyone who really lives like that — at least not long term. Not successfully and not happily, anyway.
But aren’t we supposed to?
Did I learn this wrong? Did I misunderstand? I can’t point to any one person who taught me this, after all. Did I make it all up? Or, alternatively, am I not the woman I think I am and aspire to be? Am I small, mean, petty, hypocritical and selfish? Am I unable to love the right way? Am I a fraud? Am I self-deluded?
Why am I in such chronic painful confusion about something my intellect sees so clearly? Why does it seem that managing boundaries INTERpersonally carries such a negative connotation? Why can’t I reconcile loving someone with all my heart with effective, appropriate boundaries between that person and me? What is the source of this cognitive dissonance?
Which is more devastating — people who have no boundaries themselves and bitterly resent mine, or people who maintain boundaries between us when I have none?
In the first case I feel trapped, resentful and intruded upon, and in the second I feel hideously rejected, unappreciated and used. Neither feel like healthy connection, but I call both love.
So here I am, side by side with Pickles on the shelf. We look at each other through the glass sides of our boundaries. I want to climb inside his container and take him in my arms, love him back into clear green juicy health, but if I do that I’ll start growing gray fur myself, and I know I can’t fix him at the same time I believe I should be able to. I want to run away, turn away, not know what’s happening, but I can’t.
There’s nothing I can do. My love is not enough. Grey fur is creeping over Pickles and I can’t avoid it, flee it or stop it. I can only wait and watch and sit here in my container, while Pickles sits in his.
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except where otherwise noted
I’ve been resting in this pause between solstice and the new year. Although I made a conscious choice to set aside everything I could, it was uncomfortable to let this blog lie fallow. On the other hand, I have not been inspired to do much more than manage day-to-day life.
I’m grateful to have moved into new holiday routines after decades of feeling imprisoned by obligation and duty to my fractured family and making Christmas meaningful and fun for my children. Gone are the days of huge, exhausting meals, tight schedules, trying desperately to please everyone at my own expense, spending much of the holidays in the car traveling between homes, and tired, overstimulated children. Not to mention tired, overstimulated me.
Now I focus on Yule, on the deep, introspective peace of winter and long nights, withdrawing into my cozy home. I engage in the rituals I love: candles, simple decorating, making a double batch of Spritz cookies with my cookie press to share, and welcoming the return of the light.
Photo by David Monje on Unsplash
This year we had a tropical storm the week before Christmas with high winds and torrential rains that flooded our town and, indeed, the whole state. We were without power for 48 hours. The lack of electric light (or electric anything else) fit in well with Yule, though we got very cold. We were also trapped; every bridge in the area was closed and the Kennebec River, which winds through our town, rose 30 feet, which is 15 feet above flood stage. Between flooding and downed trees, we were unable to leave our immediate neighborhood. Most businesses closed. The ones that stayed open (with generators) quickly ran out of everything. Our neighbors loaned us a butane camp stove so I could heat water for hot drinks.
As soon as the power was restored I ordered a propane camp stove.
Life rolls along, whether I’m posting or not.
This morning, as I lay in bed waking, I heard snow plows in our neighborhood. We’ve had more rain here, and clearly sometime during the night it had changed to snow. As I moved around the kitchen, watching the sky lighten and the snow fall, cooking breakfast, sipping my first cup of tea, enjoying glowing candles, my thoughts drifted.
Impossible to avoid end-of-year lists and reviews and new year resolutions, hopes and fears this time of year. I generally am uninterested. I’m content to let the old year diminish and recede, particularly this one, which was especially difficult personally. I don’t enjoy new year resolutions, mine or anyone else’s. None of us know what the new year will bring and many of us look ahead with some trepidation and anxiety; I don’t need to exacerbate mine by making or consuming predictions. What will come will come and we’ll have to cope with it.
I will be 60 this month. Impossible. Incredible. For the first time in my life, I’m daunted by a birthday. Generally, I hardly notice them. I’m annoyed by my discomfort this year. I’m determined not to focus on it, but I keep seeing it out of the corner of my eye.
I asked myself a question as I moved around the kitchen this morning. If I could have anything for my birthday, if I could make one intention for the year ahead, what would it be?
It’s easier to think about what we don’t want, isn’t it? I reviewed my current challenges and anxieties, watching the pewter sky and the snow becoming less rain and more flakes as the temperature dropped. I flipped the bacon, gave the cats another half a can of food so they would get out from under my feet. The pipes in the radiators creaked and popped as the furnace turned on.
The word ‘simplicity’ came into my mind. I turned it over. I thought about what brings me joy. I thought about candles, reading a good book, the warmth and weight of a cat in my lap. I thought about a cup of hot tea. I thought about music, the rhythm of swimming, being with people I love and trust. Sitting in my comfortable chair with my weighted blanket, just breathing. Peace. Stillness. Light and shadow. Long nights. My warm bed. Hot showers. Solitude. Privacy. I thought about my current laptop background. A perfect illustration of simplicity:
I thought about what I don’t want. The endless complications of being nice, pleasing others, fawning to stave off violence and pain. Clutter. Bright lights, noise, demands. Busyness. Obligation. Duty. Feeling hounded, imprisoned, criticized, judged by myself and others. Too much talk. Racing the clock.
I thought about boundaries. Inconsistent boundaries, badly maintained, easily breached; and strong, smooth, tough boundaries, well-maintained and consistent. Unapologetic.
I thought about the simplicity of ‘No’ and the complications of ‘No’ followed by five minutes of cringing apology and justification, or the inability to say ‘No’ at all.
‘Simplicity’, I decided, named my longing.
When I consider the first 60 years of my life I mostly see the unending labor and anguish of caring for others, the years of trying and trying, as only a woman who loves can understand, to love them all. To please them. To make them happy and healthy. It was complicated. Noisy. Chaotic. Bloody. Painful. Extremely expensive in terms of my own health and happiness.
And frequently thankless. Rarely reciprocated.
That’s what I thought I was for, to live that way. I was taught that was what I was for.
In the last few months I came across a little mantra which has become something like a prayer permanently nestled in my consciousness:
I am enough.
I choose my life.
I trust myself.
Sixty is a nice, round number. How would it be if I chose to begin again, now, with just myself; my own self-care, which is simple and easy? What if I chose to embrace the discomfort and power of maintaining strong, consistent boundaries and let people react to them however they need to, making their feelings none of my business? What if I stopped apologizing for what I need because it’s not what they need or understand or want?
What if I made up my mind to choose the simplest thing, the most direct, honest answer, the clearest communication in any given situation? What if I stood up for myself the way I stand up so readily for others?
Maybe 60 years of responsibility for everyone around me is enough and I could choose to spend the next 60 years (!) being responsible only for myself.
What a relief!
I don’t tell myself living more simply will be easy. It won’t. Boundaries, (I’m never allowed to forget) are invariably heavily challenged and battered by those who have the most to gain by us having none. Maintaining boundaries means conflict, a thing I dread and have always avoided as much as possible. It means emotional manipulation, the most painful (and successful) weapon those close to me can wield against me. It means Failing To Please. It means controlling my natural empathy, focusing it inward rather than outward, being more present with my own internal state rather than that of others.
Simplicity. What a lovely intention.
Photo by Das Sasha on Unsplash
Here’s a deep winter wish for you all:
May You Grow Still Enough
May you grow still enough to hear the small noises earth makes in preparing for the long sleep of winter, so that you yourself may grow calm and grounded deep within.
May you grow still enough to hear the trickling of water seeping into the ground, so that your soul may be softened and healed, and guided in its flow.
May you grow still enough to hear the splintering of starlight in the winter sky and the roar at earth’s fiery core.
May you grow still enough to hear the stir of a single snowflake in the air, so that your inner silence may turn into hushed expectation.
by Brother David Steindl-Rast
- How did you spend your holidays? Did you spend them the way you wanted to or the way you had to?
- How do you feel about new year’s resolutions?
- What single word names your deepest longing?
- In your view, how do self-care and selfishness differ?
Leave a comment below!
To read my fiction, serially published free every week, go here:
Last week a Substacker I follow, Candace Rose Rardon, illustrated a memory I shared with her. I was absolutely thrilled. The union of my words and her art spoke to one of my core values: collaboration.
Collaboration is about power management. It’s defined as working with someone. Not directing them. Not submitting to them. Working with them. In other words, sharing power – power-with rather than power-over.
Image by Bob Dmyt from Pixabay
Is it just me, or are we as a culture moving away from sharing power rather than toward it?
Collaboration and cooperation lie at the heart of my fiction. All my life I’ve been preoccupied with working together, but I never had adequate language or studied power until I learned emotional intelligence. At that point the light dawned. I reviewed my relationships, both family and otherwise, through the lens of power.
It was a grim review. I set out to reclaim my power.
Let’s be clear: reclamation is not stealing.
I didn’t want to take power away from others. I wanted to reclaim what had been taken from me.
This involved needs, boundary work, and many other moving parts, most of which I’ve written about here over the last seven years (almost exactly seven years … wow), and all of which are woven into my books.
Speaking of my books, I have a dream that one day a visual artist will read my work, become inspired, and want to illustrate it. That’s not all. (Might as well dream big, right?) In the same dream a musician (drums and flute or pipe, at least) reads my work, becomes inspired, and adds music and a soundscape to it. I even dream one day we’ll develop the ability to incorporate scent into reading.
I am a sensual person, and my writing reflects that. I myself see my characters and my world of Webbd vividly, but I’m not an artist. I respond deeply to music physically and emotionally, but I’m not a musician.
In every relationship I’ve sought collaboration. I’ve wanted a safe place to have an authentic voice, express an opinion, make a contribution. I’ve wanted the power to make choices. This has been true in the context of family, friends, spouses and boyfriends, coworkers, and community.
I have not been noticeably successful until the last ten years.
No matter how talented, strong, or knowledgeable we are, healthy collaboration can only make us bigger. Collaboration is tricky, though. It’s messy. We’re forced to deal with conflict, with different visions and voices than our own, different backgrounds, different belief systems, different ways of looking at the world and interacting with life. It’s work. It stretches us uncomfortably. We might have to be wrong (gasp!) and someone might find out we were wrong (horrors!).
Plenty of people say they want to collaborate when their true intention is a hostile takeover. Others seek collaboration as a way to make money or leverage other aspects of social power. Their agenda is to accrue power, not share it.
What Candace Rose Rardon did was extend a gift of generosity. When I sent her my memory I had no power over whether she chose to illustrate it or how she would illustrate it. I handed her my words and went on with life. I had no expectations. She sent back something beautiful woven of my words and her art. I’ve never met her. We exchanged no money. I know very little about her, but I do know this: she’s part of my tribe. She’s a creative collaborator.
Collaboration requires a willingness to be flexible and the willingness to accept someone’s vision regarding our art. As creators, we need to loosen our grip on our masterpieces and allow others to widen us. Perhaps someone else visualizes our character slightly differently than we do. Perhaps they see the character more clearly, or more fully than we can. As collaborators, we may be pushed to do more than we’ve done before, take new risks, try new things. Healthy collaboration makes us all more powerful, more expansive, more interesting, more textured.
We are stronger and more beautiful together than we are apart.
Photo by Helena Lopes on Unsplash
Collaboration is everywhere. It’s the falling rain and early birdsong on a spring morning. It’s the calling of shorebirds against the background of surf. It’s the buzzing of a fat bumblebee in a fragrant blossom. The world is unbelievably sensual. Walking through tall grass this time of year, the stems and heads turning straw-colored, the small scratching prick of grasshopper legs on my bare skin, the scent of warm grass in my nostrils, is a miracle of collaboration. A garden exists because of collaboration between countless forms of life and the weather.
We can’t collaborate in every situation all the time. Leaders lead. Parents parent. Bosses must manage their people, teachers their students. We all have areas in our lives we like to manage solo, including areas in our creative lives. On the other hand, we are seeing the consequences of no collaboration: chaos, fear, hatred, division, destruction, and social breakdown. We are now successfully being manipulated into choosing not to collaborate even with ourselves, but with consumerism, capitalism, and ideology instead.
Collaboration is wide. It’s not only about human-to-human interaction. If we don’t figure out how to collaborate with our planet, with the human and non-human life around us, and (perhaps most importantly) with ourselves, we will not thrive. We’ll solve no problems. Nothing will change. We’ll meet challenges as individuals and as communities and countries poorly. We will keep ourselves small, disorganized, and weak.
Or we can choose to combine our knowledge, our skills, our vision, and our humanity.
- How have you collaborated successfully with others?
- How have you struggled with collaboration?
- What’s the hardest thing for you about sharing power with another?
- Are you open to collaboration? Why or why not?
Leave a comment below!
To read my fiction, serially published free every week, go here:
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.
- 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?
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