Home > Family, Grief, Health, Love, Personal > The During, part 3: Treatment beyond Our Consent

The During, part 3: Treatment beyond Our Consent

Over and over and over again while my siblings and I struggled to get help for our mom, we were chastised for letting her go unhelped. It was the damndest thing.

People usually offered the admonishment gently, but one neighbor put it more bluntly when I ran into her at a garage sale. “It’s a shame you kids aren’t doing more for your mom!” she told me, scowling.

“You have no idea what we are or aren’t doing for her,” I replied curtly before walking away. My youngest sister, recalling this exchange a few days ago, said she was surprised I didn’t punch this neighbor in the face. I was, too.

She had no idea. But then again, it wasn’t so long before that I, too, had been clueless.

Click here for The During, part 2,
or here for the why of this all.

March 19, 2004

Last night was a night of missing.

I missed my mom most of all. I wanted to call her just to talk, to hear her voice, the one that used to make me laugh and feel all the things the world could be: wounded and beautiful, kind and angry, soft and harsh all at once. This was a voice that taught me wisdom, to really look at the world and try seeing it for what it is. I wished so much I could pick up the phone and call, but… even if I did, she probably wouldn’t answer. If she did answer, the voice would not have been the same that could have such soothing power when I was sick or hurting in younger days. Instead it’s a frantic, manic voice, bringing words that bear no relation to anything I’ve just said. She doesn’t listen, doesn’t know how, just speaks of conspiracies against her. I also told her how I felt, told her I can’t communicate with her till she seeks treatment, and I guess I have to be firm even on those nights where I want nothing more than my big, strong mommy to hold me and make the world be okay.

I fear she will get better and I won’t know because of this silence. That, out of hurt and anger, the silence will expand and stretch till it is all we remember. I guess I just somehow have to find faith that won’t be the case.

I missed the house we grew up in. I regretted that, without knowing it, we’ve had our last Thanksgiving dinner there. We will never open presents around a Christmas tree again. I’ll never lock my siblings in the basement with the lights out and yell, “Chucky’s gonna get you!” again. Just kidding – I don’t miss that, and my siblings probably don’t either. But I do miss all the laughter we could make out of sorrow there, my siblings and I, the stories we’d tell, the games we’d play, even the arguments we’d get in. We were all so close physically. When will that be the case again? Never, probably. And so I mourned for that, and for the tree in the backyard that Rache and I used to climb. It was cut down years ago, and while it made the house look prettier, to me it was empty, a space missing something. We will never be children again, will never if/when we have children get to take them to grandma’s house and say, “This is where we grew up.”

where I grew up

Where I grew up

March 31, 2004

My mother thinks Rachel is trying to “slaughter” her. She could see it in Rachel’s eyes, apparently.

As always, there is naught to do but wait. Mostly I am okay with waiting, but there are some times when I would just rather find peace in any kind of conclusion. Good, bad, whatever. Just to know where it’s all leading and be able to accept it already – is that too much to ask? Sometimes I feel like a slave to my ?misguided? hope.

what if i am meant to follow in my mother’s footsteps? i fear little, but i fear that.

June 4, 2004

I miss my mom. I miss everyone, but her most of all. It’s easy to visit other people, but mom – she can’t be so easily found. It haunts me in my dreams, this sad sense I may never know my mom again. That’s it, then. All this aching & mourning and life goes on, with or without me. The world keeps on turning.

I graduated from law school in May 2004, and moved to Japan a couple weeks afterward. I wrote the above entry shortly after moving.

June 28, 2004

there was always love, bound up with the pain
looking on, i feel it all again
the house shows me you’re chased still
by demons i can’t see and never will
if they’ll not leave you, neither will i
as i turn to go i touch the sky
where i wish you could learn to fly
as in dreams, the only place you’re free
the only place we’ll ever meet
even if you’ll always be
mom

For one of the first times of my life, I’ve found myself able to sleep in here. Instead of waking up thinking, “Oh, my gawd, I know there’s something urgent I have to do NOW!” and snapping to in a half-panic, I’ve awakened, wondered vaguely if there’s any reason I ought to get up, and gone right back so sleep.

This morning was one of those vulnerable, heartbroken mornings where such a thing isn’t possible. Where at that point between waking and asleep, standing between them, you could go either way but something tugs you nearer wakefulness. Enter me this morning: I thought of things beyond my control, things I can’t change and things I can’t even hope will necessarily change over time. Of course, these thoughts aren’t so much actual formed thoughts as feelings and wordless intuitions, but they too proceed along a course like thought, not lingering in one place too long, and pull me along with them instead of the other way around.

I miss my mom. In every day, in every way, I miss my mom. I miss how vibrant and loving and wonderfully eccentric she could be. I miss how, misguided or not in her attempts to show us, she was driven by the desire to see us succeed. That was ultimately what kept her “together” as long as she was: this desire to see us have easier lives than she had had. It was only when she didn’t have to keep up that certain kind of strength that she fully, irrevocably snapped, where she didn’t have to try being strong for us anymore that (it feels to me) all hope was lost.

Laying there in bed, wishing I could be thinking of anything else, I pictured the house that is the center of so many dark memories for me. And I imagined it empty, a house haunted by all the things that happened to us, all the bad things that I would never wish upon even those for whom I have no love, but also full of the odd stories we used to tell, the fortresses we built, the love that my siblings and I built carefully bit by bit over the years in that awful house. Or was it just a house? I don’t know. All I know is, after nearly two decades of struggling to purchase it, this house we grew up in is… gone. Gone because my mom is gone, too. Because, after finally purchasing it after spending more than $100,000 and battling an as near-to-evil-as-possible ex-husband for it, she could not in her madness find enough scraps of sanity to put together the money to save her house. The government wrote her to say that, if she did not pay $1000 of back taxes, the house was gone. Just like that, gone, to be assumed by the government… for $1000 in taxes. We didn’t have $1000, none of us, and even if we did, what would happen next time $1000 was needed? And the next time, and the next time? And so, there it is, a house of memories, good and bad, cherished and better forgotten, all gone. I feel there are still and will ever be ghosts of us laughing and crying in that house, that those memories are a physical thing tied to the house now. I wonder if the next owner will hear those ghosts sometimes, if it’s possible for a house to be haunted by the living. If it is, then that is surely as haunted a house as there ever could be.

The house is gone, my mom is gone, what remains? I don’t know. I don’t know.

Laying there in my bed, the fan on to dispel some of the humidity, I was wordlessly heartbroken. It was only when I sat up and thought, I need to write, I need to make some sense of this, that actual words started forming. But here’s the thing: sense can’t be made of it, not asleep, not awake, not halfway-between.

My mom is gone to me, gone to my siblings, the beautiful things about her consumed by this madness which is, biologically speaking, an expression of some kind of physiological defect. It’s rooted in the brain, somewhere in that tremendously complex brain, some kind of chemical imbalance or slight swelling of certain regions so they impede the functioning of others. It’s something treatable, in some degree, perhaps fully in the future when we better understand what causes it, treatable like an infection with common penicillin, but for which any treatment is beyond our control because treatment is beyond our consent.

Consent must be given by the woman who’s so ill it never can be given, who thinks we’re trying to kill her right alongside, oh, everyone – including Conan O’Brien. Sometimes the thought makes me smile, because that’s all you can do to stay sane yourself in situations like this, but this morning it just makes me sick.

It makes me wish I could pull my stomach right out of my body so I could get rid of this horrible, depressing apprehension.

Maybe it’s my mom’s illness that has made me so, or maybe it was simply meant to be, but either way: I am not a romantic person. Yes, I can be idealistic, but as for romance? I think it highly overvalued in our world. We build our lives with people because that – evolutionarily speaking – that increases our chance of survival, if we choose wisely. It’s a pragmatic decision, a self-protecting one. But we can’t choose those who loved us, those who helped make us as we are. We can’t through any force of wishful thinking or “love” bring them back from illness, and there you have it. Laying there in my bed this morning, I felt no loss I could sustain could be as great as the one I already have, the loss of this brilliant woman who for better or worse, made me exactly who I am, who always – even when misguided – found ways to show her love, and that she always, always wanted better for us than she’d ever had for herself. I wonder if that woman is still trapped in there somewhere, victim to this other part of her, to this disease, or if all I will ever have of that woman again is only this memory. And I think, I know, that now that this is what we have left, that the other woman is now only a memory I can treasure. And I know people don’t have to die for you to lose them, that you can look on and see them being slowly lost, and do nothing. Just nothing.

I want my mommy. But memory can’t give me hugs, or play with my hair when I’m crying, and make the world seem like it’ll be okay just by wrapping me up in those big, strong arms. Memories and shadows aren’t capable of such things.

August 4, 2004

+ Two days ago, I got a letter and a package. I read the letter first, and am glad I did, because it was from my mother. In this letter, she accused me of experimenting on her, her madness only barely concealed at parts and at others left glaringly in the open. It would have broken my heart, but for the package still unopened on the counter: a package from Jane. In that package were pictures from her and Layne’s trip to LA nearly a year ago, some candy, some gum, a card and a bee ornament. And, I felt, a whole lotta love. Sitting there cross-legged on the hallway floor, I felt all the love with which that package had been sent, all the love that has grown between me and my wonderful friend Jane over these last six or seven years. It is the kind of love that reminds you, even in the darkest moments, there are those fierce and beautiful and brave, who will ever wish only the best for you, and will somehow be able to express that across oceans vast and deep so you never for a second feel alone. That is a talent of hers, and I am thankful.

momletclip

January 2, 2005

4:50pm. Such a peaceful morning; such a sad afternoon. Dave wrote, asking me to call, which I did, and he promptly started bawling. This, of course, made me cry in turn, out of sorrow for his own – and for the fact I can’t hug him or comfort him physically. I so wish I could.

He dropped by mom’s house today and found she is gone, just gone. He hugged her and told her he loved her; I tried to tell him that, if it comes to that, in these actions he must take the solace of knowing he did what he could. There is little comfort to be had in such a situation, so it must be seized where and in whatever small ways it can. I told him I love him and he’s never been other than a good brother and son.

I have this image of us standing graveside at our mother’s funeral. I pray this will only remain a haunting image, for as long as she yet lives, there is hope.

June 7, 2005

Yesterday was an awesome day, but talking with David about my mom destroyed that with remarkable speed. She never took things sitting down, so to imagine her as David saw her yesterday – “defeated” – breaks my heart. My mom the can collector, living without water or electricity, in danger of losing her house because of tax nonpayment. What am I supposed to do about this? What am I supposed to say? So I tumbled into despair, to a place I couldn’t even put words together properly. Still, I tried to string ’em together to pull myself out of the bog I felt I was sinking into (like the one in The Neverending Story where Atreyu loses his horse) by writing a letter to Maggie. I’m so glad I did; her response was immensely comforting.

July 7, 2005

I just talked with Frank, and when he told me he saw my mom last night, I was hoping he might follow that up with “in the garden.” Instead, he reported that he heard her coming from blocks away. She was yelling at the top of her lungs as she walked back to her house. The words were indiscernible, but even had they been distinguishable they would likely have made little sense. She kept screaming when she got back to her house, adding to the fun by smashing things on the sidewalk from her porch.

Oddly, I’m looking forward to doing what I can to stop her disease. I felt worried and helpless before, unable to do anything but stand by and watch. I’ve had a total leap in mindset, though, and already I find myself steeling up for a summer of battle. I can and will get her help.

July 29, 2005

Official word from Lane County Mental Health:

Unless your mom’s two or three day’s away from death’s door, don’t be looking to us for help.

August 3, 2005

I kept walking. I had a doctor’s appointment at 10:45, and as my mother’s house is between campus and the clinic, decided I’d stop by and actually catch her for once. I knocked and knocked to no avail, calling to her just in case. Then, realizing that approach would get me nowhere, sat down and began to write in my paper journal. After I’d been writing for a few minutes, I thought I felt footsteps vibrating through the porch floorboards, but I wasn’t sure and so resumed writing.

A few minutes later, I heard the doorknob turn, glancing up to see my mother look at me with the utmost of contempt. I’ve seen my mother angry but I’ve never seen her so full of hatred. “GO,” she ordered, slamming the door. I didn’t hear the click of a lock, so I stood up and followed her in, trying to make sense of her ramblings and trying to plead with her through her screaming. When she emerged from the hallway, I backed out through the door again, both because a) I was trespassing and b) I had no idea what her rage might compel her to do. I wasn’t afraid – not like I had been when I first went to knock on her door a few weeks ago, nervous at what I might find – but neither did I like the idea of having a vase hurtled at my head.

I stood on the porch and spoke loudly after she’d calmed, saying I wished she would seek help, that so much anger would kill her eventually. This brought her back out from the hallway and she advanced on me, muttering angrily how I’d already tried my best to kill her. This, I gathered from her largely incomprehensible accusations, I’d done with my father and “all those others.” I realized after this there would be little good in trying to persuade my mother of anything in that state. I retreated, said “I love you,” and closed the door behind myself. She was still ranting as I sat down and finished my journal entry.

The house was so empty. I’d never imagined my mother the saler-slash-pack-rat would ever have so little in her house. I thought offhandedly how I never imagined I’d see it clean, either, but as I did so, I regretted the life my mother is trapped in right now. That is all she has. That is her existence… that house of bad memories. At least there are the flowers out front, and I guess those flowers are the only thing that provides me real peace as regards her situation right now.

She’s keeping them pretty as best she can without running water, and in the care of those flowers I think she is able to find temporary comfort. Not everything in this world is out to destroy her, not even from her eyes.

December 13, 2005

Still glowing after that unexpected bit of awesomeness, I took the bus to Grampa’s and visited him for a little. I had another conversation with my mom’s door first: “Mom. Mom? I LOVE YOU.”

May 15, 2006

For what my mother struggles with now, I continue to love when people see in me shades of my younger mom. Before she was sliding into schizophrenia, a process much longer in retrospect than it seemed at the time, my mother was vibrant and funny, articulate and compassionate. She never stopped being that way; it’s just that these things were tempered over time with illness.

So when someone who knew my mom decades ago says, “You’re just like your mom, when she was young,” not just in face but in carriage, I can’t help but feel blessed and think, for all that is sad in this world, for all that is fleeting, there is joy in memory and in the words of people who make those memories – for a moment – part of now, and in so doing, part of forever.

Please stay tuned for The During, part 4,
the final post before The End, and 
feel free to share
your thoughts and experiences here if so moved.

 last : The During, part 2: I Miss My Mom | The During, part 4: Fragments and Shadows : next

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  1. September 12, 2015 at 6:56 pm

    “I want my mommy. But memory can’t give me hugs, or play with my hair when I’m crying, and make the world seem like it’ll be okay just by wrapping me up in those big, strong arms. Memories and shadows aren’t capable of such things.”
    This part really got me. There were so many times I felt just like this. I’m glad that I had both A. and my mom in law at times when I was completely overwhelmed with the “I miss my mom” blues. They could not completely relieve my pain, but they lessened it as I sobbed in their loving arms.

    • September 12, 2015 at 8:00 pm

      Thinking of A. makes me also think of your comment that she needs to see me next time I’m back home. I need to see her, too.

      Did I tell you how she was surprised I asked her to give me away? As if there was anyone else I could possibly have chosen! No, it was she and only she who could have given me away that day, and I truly felt Mom in the sunlight falling upon as as we strode toward my then almost husband. I don’t know if you could hear it, but the song playing then was Enya’s “To Go Beyond II.” I used to listen to that with Mom. I figured that’s what would play while striding toward heaven.

      That song was another way Mom was with me that day.

      Anyway, A. has been a godsend. I am grateful for many, many things in my life, and A. is foremost among them.

      (Did I ever tell you about talking her up to a lady at the YMCA many years ago? I had no idea that lady was her manager, but was glad to discover it later! It still tickles me to think that A.’s big objection to me writing about her in a guest blog was that I would “make [her] sound better than [she was].” Bless her!)

      I call her by her name in my blogs because she gave me go-ahead to write about her whenever, however, saying she trusted me. Even when I expressed frustration in my last post, I felt that was OK, because it was only the tiniest fraction of the total experience of overwhelming love felt from her since she witnessed me born 36 years ago. Yep, I was frustrated in the moment, but I got where she was coming from … and how small it was compared to our entire history, and her overwhelming love for our mom straight through until the end.

      That she is out there brings me such hope. Which, as it happens, is how I feel about you and our other sibs. Even amidst all the pain and strife, there is such good in this world.

      I love you. ♥

  2. September 12, 2015 at 8:05 pm

    Hurting for you, hurting with you.
    In awe at your resilience, strength and courage.

    • September 12, 2015 at 9:08 pm

      I have this post I’ve half written dozens of times in my mind. It’s got these images I can’t quite figure out how to draw, from lack of (recent) practice, but their core is that … though some things must be experienced alone the first time around, other people can be brought into them later by love, thus imbuing the original lonely experience with the feeling of having been lived surrounded by loving up-lifters. That’s what this transformation feels like, and it is beautiful. Thank you.

  3. September 12, 2015 at 8:06 pm

    may your mother shine on brightly
    in your continued compassionate
    words and actions,
    supported by loved ones, friends
    and your befriended, healing heart.

  4. September 12, 2015 at 8:09 pm

    There are some many people who need help. We as a society turn our backs, tune out, so very many people.

    You know,one of the things I find so hard about the folks I’ve lost is the telephone. For much of my life, the phone was the link because we all lived so far apart. I still, years after losing folks, think “I need to call …” before my heart breaks again.

    • September 12, 2015 at 9:15 pm

      We really do turn our backs, so readily. Somehow I think it feels easier to say, “It’s not my problem” louder and louder until it feels right than to reach these very many people. It’s easier to see the short term peace of mind but not the long term wrong.

      I still have that “need to call” moment with a few folks, too. One of my good friends cautioned me it would be this way. Her mom died several years before mine; as mine was dying, she said she still almost daily would happen upon something cool/scary/neat/weird and think, “I’ve gotta tell Mom about this!” The fact she warned me helped me feel a kinship instead of a loneliness, for which I was so glad.

      (I still have this feeling at least once a week. And sometimes upon awakening, when I’ll have had a nice dream involving someone loved and lost and then realize it was only a dream.)

      • September 12, 2015 at 9:34 pm

        It is now over twenty years since my father died, and I still see things, hear things I want to tell him about. So I do. More difficult are the times I want to ask him things…

      • September 13, 2015 at 5:15 am

        It happens to me all the time. It’s my own leftover shrapnel.

  5. September 12, 2015 at 10:08 pm

    I’m not entirely sure I have the words to properly comment on this post/series of posts. I just want to say that I really appreciate you sharing your experience. I have gone through experiences that I can relate with what you are saying while at the same time not being able to relate at all. I had to make the decision to cut my sister out of my life years ago because all interaction with her had become toxic. (I wrote about it on my blog under “My Toxic Sister”.)
    Anyway, thank you again for writing these posts.

    • September 14, 2015 at 5:00 am

      I’m going to search out that post later!

      Another reason I wanted to share these posts was as lead-in to a discussion that boundaries aren’t just for people at work. They’re for the people we love, too. And, sometimes, when those boundaries can’t be respected–and are pushed, and pushed, and pushed–it’s time to say farewell.

      I used to see that farewell as a kind of “no,” but now I see it as a yes to self: yes to spending that time and energy with people who’ll build up, not tear down, yes to hope, yes to being OK.

      • September 14, 2015 at 9:15 pm

        It’s a series of posts actually, the link to them is at the top of my blog. I had to turn off comments on them a while ago for my mental health. It wasn’t that there were a bunch of negative comments, but that so many people were asking me for advice as to how to deal with their situations and I am just not qualified to give such advice. It also made it hard for me to work on healing myself when I was constantly being reminded of my sister. So I haven’t spoken about her in a while. Things have changed some since I last wrote about her, but I’m not quite ready to write about it yet.

        You are absolutely right about the fact that we have the right to set boundaries and expect that they be respected, no matter who it is that might be disrespecting them. I made the decision to cut off contact with my sister for my health, not out of spite towards her, though there was a lot of anger there for a long time. We all have to learn that it is okay to take care of ourselves. If we don’t, we will never be able to properly care for those around us who are deserving of our time and energy.

  6. September 13, 2015 at 5:31 am

    I read your post this morning and it did knock me a bit out of balance today because it hit home hard. Due to some circumstances I spend a night at a homeless shelter and it’s shocking to see how many are clearly not mentally well. Mental illness is seen as something to be more ashamed of than a disability and not only the person affected is stigmatised but everyone associated.

    We know so very little about the human brain and we are of the first generation to communicate, question and to seek for possible solutions. As children we didn’t know where to go to, how to deal with an ill parent or even how to recognise something is not right. We still don’t really do.

    Thank you for sharing your story and continuing to do so and please never ever listen to those people that say you should have done more. You were not the parent.

    We are our parents but we can chose which part and celebrate that. To the fullest. ❤

    • September 14, 2015 at 5:06 am

      Even though I knew my mom’s experiences weren’t unique on some level, I didn’t really understand it until I read the book Crazy in America: The Hidden Tragedy of Our Criminalized Mentally Ill. Reading that, I saw that my mom was “lucky” to have a home to come back to, to avoid law enforcement attention, to avoid lock-up. The revelation that the nightmare was a much kinder one than many experience was … grim but important for me to understand.

      What felt like my whole world ending at the outset of understanding, I came to see as part of a much larger problem. I don’t know how to fix it, but I do hope that anything I write helps in tiny ripples of love and hope.

      I am thankful for your words about those “should-do-more-folks.” I discarded their words as lacking any kind of wisdom, but there was this second or two before each discarding where they did wound. We are trying all options legally available! I wanted to shout. Do you think we’re all just sitting around going, ‘Sucks to be her’? Really?!

      Understanding it mostly-then and better-now is still different from having it acknowledged from the outside, and so I thank you. ♥

  7. September 13, 2015 at 9:16 am

    Oh, Deb … these posts make my heart ache! I’ve wanted to comment, but any comment on what you’re writing seems so trivial. But I want you to know I’m here. I’m reading every word. I’m here, utterly absorbed by your story.

  8. September 14, 2015 at 5:07 am

    Your words don’t strike my heart as trivial at all. Indeed, they are healing, because … in reliving hard times surrounded by the love of friends, those hard times take on some of that love, changing forever how they’ll be experienced–remembered–in the future. Thank you. ♥

  9. cardamone5
    September 14, 2015 at 5:34 am

    I am so sorry, Deb, and yet, I want to celebrate your optimism throughout. You share your agony, but also your ability to find the rose in the dirt. Perhaps that is your greatest resemblance to your mom? Be well, friend.

    Fondly,
    Elizabeth

    • September 15, 2015 at 4:33 am

      Part of me wishes I’d written all the times where my heart was too heavy to guide my hand toward a pen or keyboard, or the times where it soared so high with hope it couldn’t be bothered with pens. But I feel like, overall, these words together captured the swing back and forth between hope and despair before I settled–mostly–on acceptance.

      “your greatest resemblance to your mom”

      *weep* I think so. Thank you.

  10. September 15, 2015 at 3:20 am

    I want my mommy.

    These words go to the heart of everything, every last bit of heartache and pain. These words say it all. The grown you, the little you, the adult you even, these words say everything that is in you. These words make me want to put my arms around you and remind you, she so loved you she held on till she knew you would be fine, you would be in excellent and loving hands, you would not only survive but be victorious. What a marvelous mother you had to hold onto the world for so very long.

    What a heartless world we live in sometimes that we won’t do more. I weep for you and your siblings that you didn’t have more help. But truly Deb, I rejoice you had each other and your ‘true’ mother for as long as you did.

  11. September 15, 2015 at 4:39 am

    It breaks my heart to know someone’s parents and someone else’s grown children are trying obtain help for … each heartbreakingly unable to find the help their loved one needs. I’ve (mostly) made my peace with what happened here (though occasionally I still wonder what-if: What if she’d been medicated when she started feeling physically unwell? Might I have gotten to see glimpses of my mom even today? Would the story I shared have a much different conclusion?), but I ache for those just setting down this long, rocky road.

    I hope each of them has at least one person in their life so skilled at lovingly lending light as you. ♥

  12. September 15, 2015 at 11:56 am

    Your journal entries are so powerful and difficult, Deb. Thank you for sharing.

    • September 18, 2015 at 3:38 pm

      Thank you for sharing them with me. Without readers, it’d be just shouting into the void. With readers, especially ones I admire and respect no matter how unintentionally sharp I might feel I sound in some comments, that’s all the more so as the weight on my shoulders is distributed and I remember just how much love there is right now. Big, big hugs and thanks.

  1. September 14, 2015 at 6:08 am
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