I decided to post a loose rough draft of some observations of my experience trying to care for my dying Mother...
An exercise in syntactic, spelling, grammatic and stylistic errors mostly and I know in need of extensive editing, arranging and revising... but it is only a start. I really need to get some of this outside of myself.
In another form, this work in progress will be called "Exile in the Broken Heart of Dixie."
***********************UPDATED OCTOBER 23*************************
I've been in Virginia now for over 19 weeks.
Daddy has been gone for only just under four months, and still every time I think of him in the ground I lose my breath.
Mama was diagnosed with late stage oral cancer three months ago.
I haven't been able to get her to any of her appointments for tests or to discuss possible treatments. I've postponed and rescheduled all of them 4 or 5 times each.
I finally just gave up. She didn't even notice.
She won't consider Hospice, or even try the stronger medication that may help with her increasingly intolerable pain. Fear.
She consistently chooses suffering.
She demands constant attention. Her old routine has unraveled, and our lives have wound down into a claustrophobic limbo.
Worse, time no longer has distinction like days or nights, it's all her own weather. Up and down at all hours.
I promised her I would come if something happened to Daddy and I am honoring that.
For years she has harangued me with her disappointments and fears about being alone… so now in her last days I'm trying to salve that.
Still, for a long time she would still accost me with things like:
"I've done a lot for you in my time!" "I'd do it for you and I did it for my mother."
She wears me down. If I dare get frustrated and say so she will exclaim
"You can't be as tired as I am!"
"I've done more for you than you'll ever do for anybody else!" she repeats.
I do get flustered and tell her she's pushing to hard and asking to much of one person.
During a bad spell she bristles, incredulous "What DO you think you do anyway?" She asks.
I look at her astonished.
Oh nothing, I think, just everything that gets done now. But know better than to say anything. I know she doesn't mean it, but her fear speaks louder and more harshly for her.
When she is immobilized in pain she is almost tolerable, but when it subsides for a time her monstrously deformed personality comes roaring back.
Constantly accusing, forever punishing—for an ever flowing stream of imagined offenses.
She thinks herself the unfair and hapless victim and martyr of everyone else's selfishness. She has been this way her whole life.
This I am convinced is due to an long undiagnosed condition. I believe that she suffers from a severe borderline personality disorder.
It's traits have been best described by Marcia Sirota:
"People who suffer from a severe form of Borderline Personality Disorder, or BPD, are extraordinarily sensitive to any perceived slight or hint of rejection.
They lack insight when it comes to relationships and are unable to calm themselves when under stress. They can become enraged when they believe, often incorrectly, that someone has done them wrong.
Sadly, the individual with severe BPD is so convinced that others are about to hurt or abandon them that they are compelled to behave in ways which, paradoxically, are provocative and alienating.
In their efforts to manage what they imagine to be inevitable betrayal or abuse, they inadvertently create exactly the situations which they most dread.
The person affected with severe BPD has an uncanny knack of bringing out the worst in those that they interact with. This just reinforces their belief that most people are going to hurt or disappoint them.
Sufferers of severe BPD have a powerful need to get back at those who've been supposedly attacking, rejecting or shaming them. Paradoxically,it's the Borderline individual who ends up doing all the real harm in their quest to punish the so-called offenders."
This matches her behavior to a tee.
It would also help to explain how in years past not one, but six mental health professionals all gave up on her or were rejected by her or asked her not to come back.
"They don't know what they're doing." She would say dismissively. "I've seen Dr. Phil I could do better than they can. None of them ever helped me, thats for sure."
But all that was long ago already. And none of this helps me deal with her now.
As long as she is reasonably in her right mind and refuses help I can get her none.
Though I have tried to force it—when I thought she was having a heart attack I called in an ambulance. She threw the EMTs out, and so I called the police to help.
I found that her skills are more formidable than I suspected. In front of a police man she is rational, calm and clear headed as safe cracker. The policeman sided with her.
It's my mind thats coming unhinged. "You're CRAZY!" she screams. I can't believe the way you treat me!"
All I can do is back down or agree with whatever she says, do whatever she asks and take what fallout comes, and it does and often. No one else would put up with her and I can't just abandon her even though she has accused me of it my whole life.
She has always held a paralyzing influence on me, which is now in it's fullest effect.
I am dulled by all the constraints and must block everything and everyone else in the world to deal with this. I t requires more energy than I really have.
The light is changing. The days each a fraction shorter. The sun lower is in the sky in the afternoon. I notice it only because the shadows are different. The lower aspect of the sun affords more ambient light in the south facing rooms, given them a warm glow through the discolored curtains and crumbling long drawn shades.
It is joined by the solitary song of the cricket, intoning as it does with an irregularly that has the unique cadence of late summer.
I can sense that she feels everything closing in as her waning energy reveals, in her stumbling and shuffling each day slower and with increasing difficultly. Her movements now restricted from bed to couch to bathroom, and now only possible with my assistance.
The decline frightens her as it would anyone. Worse for her as she is so cut off and alone with herself as she is. Her fear is even greater than her pain, as she will accept nothing that could help because it is all unfamiliar.
I pleaded that I need the help to— to help take care of her, but in her fearful estimation I guess she reasons that she gets no relief from her suffering, why should I get any relief in helping her. Thats her behavior at least.
More of that "YOU OWE ME" mentality that she has always assaulted everyone with.
She has always impressed upon me what she feels —insists— is MY responsibility toward her and Daddy with a religious fervor.
She's told me since I could remember. "I got you so I wouldn't have to be alone when I was old.
( I am adopted)
"we RAISED you! Don't you think you owe us ANYTHING?!" she would sometime exclaim to me as a teenager. I forget what would provoke these outbursts, but I certainly remember her repeated ominous assertions.
She acted like it was something to look forward to. I never understood it, and even as a child quickly grew to fear it.
As an adolescent as I started to try to stretch my own wings she began a permanent campaign to clip them and keep them clipped.
That conflict has always been at the source of the friction between us.
I kept going farther and farther away, and she got sicker and sicker ( much of it by her own diagnosis) and tried harder and harder to shame me into coming back.
But now Daddy is gone and I have come back to help, yet there is still her resentment.
Part of her anger toward me now is her insistence that I didn't do my duty by coming home years ago to help them.
She always kept us, as a family, in a vacuum. And in that isolation with her constant needling and manipulation you start to believe her insistences. You lose your bearings.
Each time she has to give up some detail of her old routine it's as if it were torn from her and she responds with fits of crying or infantile rage.
My friend Tina, the only other person who Mama has allowed to help, noted with amazing accuracy that Mama's behavior was the same as that of a spoiled child.
It was a chilling realization.
Even after everything I have been through with her over the years it is torture to watch her suffer so horribly.
She hates to alone at all now, and prefers for me to sit in her room with her, or close where ever she is, especially when in pain or discomfort.
This is how each day now begins.
She lies on her four poster bed, on that old worn out mattress, on threadbare linen, fussing with the slack elastic of the fitted sheet as it slides loose at every shift of her body. She cries in exasperation like a child trying to adjust the seams on the pillow cases. A princess suffering the indignity of creases.
I try to get her to take her medicine.. this can take upwards of an hour or sometimes much longer. "I can't swallow those right now!"
She has been having terrible hot flashes and repeated panic attacks.
Constantly demanding the thermostat be adjusted… in the summer 76 was too cold, 77 too hot. I would sit and shiver at both. Now in autumn 74 is too hot.
"It's just one degree. I said once.
She was outraged. "One degree MAKES A BIG DIFFERENCE!"
"Okay, okay" I retreat, closing my eyes.
Now I just do what she says, but it still isn't enough.
"I'm about to burn up!" Did you cut the air condition on!?" she asks bruskly.
"yes it's on it right now."
Its 55 outside, but who cares.
"Are you SURE? I can't feel it. Give me something to fan with."
"yes, It's on." I say without looking up.
She won't use any of the new or clean linens, blankets or pillows that still sit the bags they were brought home ages ago.
There is only one chair in the bedroom. It is where I bookend my days and often sit in shadow of night, until she settles. Full light is starting to bother her so we sit by the gloom of several little low watt night lights.
It is a rigid saddle back chair that once intended to be used at the dining room table, but like so many things in the house, was never used.
Their decline, Mama's and Daddy's, is marked in so many ways.
Inside the house, Mama's vigilant housekeeping is now painfully absent.
Everything is under a thickening veil of dust. Mildew seems to blossom on the base boards, cobwebs adorn the corners of the ceiling, new cracks constantly spread along the seams of the sheetrock. The carpets fray at the edges and are flattened along well worn paths.
I keep getting caught up in the long loose threads of her hair all over the house, like spiders silk. I dust the parts of the house that are still used but even that I can't keep up along with everything else.
Daddy's absence is felt in every object, in every one of his possessions I might chance to see. Nothing of his has been moved. I can't bear it yet.
Outside, where the yard has become ragged, the shrubs have grown gangly and misshapen. There are more weeds than grass, and where it remains, is brown and brittle. Dead limbs litter the yard and hang from the long untended trees that bow and lean as if in an attitude melancholy themselves. The walk is overgrown, the gutters are starting to sag, and in the garage his tools are already sprinkled with rust where ever he laid them last.
oddly, His mower won't even start now.
The yard will never look the same.
Everything in the rooms, shrouded in gloom against the other wise warm glow of August sunshine, fade in spite of the insulation. The cloth of the furniture is brittle, and in places dry rotten. The color in the candles drained and pale except for a hint of dull hue at their bases. They have never been lit. Everything "saved" for special occasions that never came. The decorative glass ware is all clouded, the chandelier tarnished and strung with dusty cobwebs, the mounted silverware buried under dark, turbulent indigos accented with hints of violet over expanses of deep umber.
The air is heavy and very stale. The piano sits almost indistinguishable in the low light, never played more than once or twice, and then only as a demonstration.
The piano may be silent, but there is a music here, I feel it begging to be born, broken and out of tune though it would be.
I hear it in my dreams frequently, but have no ability to articulate it. This pains me as I often walk through the house, hearing notes, all in fragments and unfinished phrases in my mind, as if struck on many varied phantom instruments.
If only I could play just one.
Even the little kink-knacs on the end tables, of kittens, birds, rosy cheeked children and revolutionary pilgrims in cheerful postures, are betrayed by the discolored glue and the rough and sometimes awkward reconstruction from multiple misfortunate fracture.
The grand old clocks long since wound down, stilled at different hours.
Once, walking her through the hallway after some pointless argument she remarks "One day all this will be yours, that should mean something!"
She says this as if she were bequeathing me Tara itself. and I suppose in her mind she is.
This is the house I have grown up in. It has long deep roots in my memory.
While it is grand in it's decay in my mind, and no less haunted in my imagination, it is really only a half acre in an old postwar neighborhood bordered now on all sides by subdivisions, apartment complexes, a interstate by-way and the ever expanding intrusion of franchise commercial development.
The house is utterly unremarkable to set eyes on. Simple one story brick. featureless.
It is ironic that it sits next to a true example of eccentric folly gone to seed.
What some would that house a real redneck Versailles.
Complete with several cars lost in the overgrowth of the yard, a great gazebo in the back yard packed to the rafters with debris and refuse, but it is the house itself that really stands out.
The elaborate addition to the original house had began as grand vision, that is clear, with two distinct wings built on the edges of the once simple one story frame, now bearing the weight of numerous high gables, balconies, porches, arched windows, even a widows walk.
But something went terribly wrong and all the work stopped at the height of shaping it, and was never resumed or completed. Grand larceny on behalf of the contractor I think.
Now, 25 years later, it is a dramatically sagging three story ruin in peeling Tyvek and tarpaper over warping plywood. Theres even a porch swing on cinder blocks sitting in the front yard. The east wing has been cobbled into a small apartment, other porches have been converted to little rooms, doors boarded up, a patchwork of lesser ideas diminishing it further as time goes on. But that is another story.
To hear my story you would think it belongs in that house, not the sunny nondescript little brick edition next door, with it's sparely planted yard and shuttered windows… nothing of the otherwise pleasant exterior to indicate the depth and duration of grief that has been endured inside.
It's as if the house has never been able to breathe. I certainly feel like I have been holding my breath all my life.
The house does emit an occasional architectural groan, evidenced in the occasional settling of wood and mortar. Instinctively it responds to gravity, which tugs at it, pulling it closer to it's earthly bosom, and without intervention, to someday swallow and consume the burden of it's existence as with us all.
We have been up much of the night.
Her with unrelenting hot and cold flashes moaning softly, and I trying to sooth her anxiety. I get a feeling the end may be near, and I wish we could share some genuine quality time, but I accept that it isn't going to happen like I imagine.
I am so tired of arguing. she turns everything into argument. It's the only way she can relate, sadly. And if she can't lure me into engaging her she is content to have the argument without me as if she were responding to what she imagines I would say.
I can't help but sit restlessly, try to agree with her, or tell her what she wants to hear and remembering wave after wave of unhappy days past, relived at the sight of every item and object on display, as nothing has been moved or changed in decades.
She gets agitated if I shift too much, taking offense and no matter what I say I end up more uncomfortable and she covering her face or reaching for one of the several wadded damp tissues that litter the edge of the bed by her pillow.
My back is sore, my foot keeps falling asleep.
"Talk to me!" she demands desperately. "Can't you say something? anything?"
I'm convinced she already has the conversation she wants imagined in her head, and anything I say can't live up to it and thats the reason it is always a fight. she gets irritated at the disappointment.
What she imagines I don't know. TV dialog? She's obsessed with movie stars and the like. All I know is anything I say leads to an argument.
I stubble, and feebly offer… "I'm sorry, I just don't know what to say right now…"
"Just be yourself!" She pleads not realizing what irony this stirs, what frustration.
She is oblivious that she has obliterated by deliberate degrees at every opportunity, everything that might be "myself" leaving only the hollow shell of her unrealized expectations of me. And if course my resentment.
She has always wanted to tell you what to do, what to say, how to say and when. If you assert any country facts or opinions she will just step up her assault until you give in. She will keep it up for days or weeks or years. She has no boundaries to her emotional marauding. Her illness has the the pitch of this behavior to a maniacal level.
My natural curiosity has always been threatening to her, looking naturally out toward the wider world, whereas she is interested in nothing beyond the town of her birth and, it seems, the limited experiences of her youth, or more honestly herself.
She mutters her dissatisfaction whenever I leave the room, or under her breath, sharp criticisms. The same is true if I dare pick up a book or my laptop unless she is asleep.
She has always required of everyone that she be the sole and constant center of attention.
and now that everyone else is gone she seems to demand it of me all the more.
I can't tell what is hurting her more, the natural progression of her mental illness, some derangement from taking the same anxiety Meds for so many years or the merciless advancement of the cancer.
More is claimed from her everyday. She has let go of almost all her old habits and insistences.
She's stopped bathing, not having the energy, and rejecting my attempts to get the aide of a nurse.
If you stand very close the sweet sour smell of decay and bodily stagnation lingers around her, like a fog, like a grotesque pheromone, that, were it in the animal kingdom, would ward off any who might come near, being a natural signal of illness, and the unmistakable harbinger of approaching death.
I have learned to move as if submerged in a thick, viscous or mucilaginous fluid that resists and erodes every motion.
the same with speech.. to minimize upset I must speak very slowly, glacially, in an even tone regardless of whatever harsh admonition that assaults my ear. Strangely, this seems to help a little.
Still, I fail in my efforts often. Failure is my new mantle of achievement. Only in this I am free to revel.
Sometimes I fancy that I am living out these days of claustrophobic limbo like a Butoh dancer in a faithful repetition of an homage to the burden of existence… a blunt, gray reverie. Rude and absurd. An insect twitching in slow motion.
It's all one motion really— a restless waiting.
An all encompassing waiting as solid as the granite mantle under which all the soil of the earth presses, and in it's harshest aspect, under duress of mind and spirit, a crushing reminder of the futility and transience of our being. It being forever unrelenting and featureless, and we being so tender to it's indifference.
She won't ask for anything… likening it to begging. Instead she will stare at something, or pout or look disgusted until you figure it out. Asking her offends her too.
She finally complains about currently a layer of dust on the dresser.
"I don't know what you want." I say.
"Well if you don't know by now then you never will." she blurts.
"Please tell me what you want done." I say frustrated.
"You don't understand…. (sobbing) I don't expect you to keep this house clean… I don't expect to do like I did, but the obvious things…."
"You put things off…" she continues "and then you get so many things to do at one time… even when you were a little boy."
I say nothing.
"I hate to have to ask you to do anything."
Finally, slowly. "Okay. I'll do it now." I say wearily.
"JUST FORGET IT!" she interrupts.
"Ma, I can't sit here with you and keep up with what needs to be done too…"
"OOOOOOOOoo I wish you'd hush! Why do you TRY to hurt me!" shaking her fists and shaking her head like an angry thwarted child. "lets both just stop. Don't saying anything else!"
Yet she continues to criticize, tossing barbed comments for another half of an hour.
She craves a bright continence, light conversation, distraction. Be cheerful! she demands without saying it plainly. But I am decidedly cheerless, despite all effort.
I can appreciate her need for this, and am pained that I so often fail in my attempts.
but every offering is cast out, no matter how well intended, and becomes just another facet to her aggravation.
I am struck dumb and silent… in fact prefer silence, requiring it now as a kind of sustenance, though it is daily denied me, and I am rewarded instead with this festering tension and her constant need for reassurance.
She says you can say, do, watch, whatever you want… but anything that deviates from the singularity of her taste is met instantly with stinging disapproval.
This being pretty much anything. I've learned not to bother or admit any interest, and even this can not escape her constant criticizing.
Everything in her estimation is too much or too little. She seems to have no capacity to qualify any satisfaction.
So why not walk away, consign her as a ward of the state and go?
Because all this is punctuated with moments of genuine appreciation, kindness and a such desperate, desperate need for love.
It doesn't hurt that she has made it very clear since I was very small that she expects this from me, this is my responsibility, to take care of her.
She doesn't mean this to be as blunt as it sounds, but it sure seemed that way when I was younger. Now I recognize it as just another facet of her fear.
"I love you so much, she will often sob, I don't know what I would do without you."
It breaks my heart. I know she means it.
Nothing really exists for her, outside of her own desperate wanting.
What little that is left of the immediate family are all estranged, embittered and have long abandoned her. She provoked this herself over the years, an unfortunate consequence of her illness
There is no one else. After so much pain and sadness, even as result of her own misguided actions, I feel compelled to follow though, to witness and walk the whole distance to it's very sad end.
The real danger, never seen directly, but only felt by it's exacting effect, is the black hole of suffering in whose wake is the ruin of too many souls of her family, and I would argue, most recently, the very life of my father, who stood by her in her lifelong illness at the expense of his own happiness and potential in the world.
Now I stand in that place, hugging so close to real destruction at the very edge of her event horizon, a howling anarchy of whatever the infernal source is of her suffering.
Sometimes I imagine it to be like a virus, one with a consciousness of it's own, looking for a way to transfer it self to me by driving me mad through her.
Whatever the derangement is, standing so close to something so terrible changes you, alters and distorts your being. I will not see for a long time what might be it's lasting impact.
I can only see only surface disturbances so far. I have lost almost 50 pounds (which I won't be hurt by losing), maybe a little more grey in my hair, the dark under my eyes, the bloodshot, a deep twitch and tremble in my gut, the pressure an uncomfortable tingle that flickers across my skin, like heat lightning across the sky in a summer storm, and a heaviness that pulls in at me like anvils tied to my heart.
Sometimes, while lying awake at night, when she is moaning and crying and begging God for a reason for her existence of suffering, I wonder, is it my witness to her affliction, which has chipped away at my life until now it is my sole focus and work, to translate this collapse into something?
Such a purpose would be a blessing, and I am cling to the possibility, even if it is just for myself, to get it out of me, to survive it, to escape this lifelong shadow.
Perhaps this is why ruins have always drawn and held such a vivid emotional fascination for me, perhaps this has always been my destiny, and that being my only way of recognizing it as a child.
I feel like I am stumbling amid the litter and debris after a great fire for some salvageable and precious memento.
Even my own miserable failure in the attempt would be preferable than the utter desolation of life and spirit that would remain in the absence of trying. I don't want to, can't, carry the burden of this experience inside myself alone for the rest of life. I must exorcize it.
It is said that the body holds onto pain. I certainly feel it in me. Attempting to translate it is my way of exorcizing it from my body.
She has held onto her pain. She was once very beautiful, though gravely flawed emotionally. I can see how the pain in her has deformed her, distorted her into the stereotypical image of a crone (minus the wisdom) as described in folklore, from her bespotted complexion, hardened scowl, sunken features, and deep wrinkles, to the coarse whiskers sprouting on her chin, to her stooped posture, to the wild chaos of her long gray hair and ragged, ill fitting clothes and vitriolic voice.
Only her eyes betray this, revealing such a profound sadness, and abyss of sadness. Also an intense vulnerability, and a childlike softness as can been seen in children of starvation that begs for forgiveness, kindness and affection.
It is the greatest challenge I think I will ever face.
The worst of it is when the demands of her care and voracious need of attention require every creative impulse to be delayed to forgetfulness, or suffocated by the insatiable maw at the center of her wounded being, dulled only slightly by propinquity.
I am reminded of an observation from a Franz Kafka short, "Resolutions":
"So in the end it remains advisable to accept whatever comes, to behave like an inert mass, even if one feels oneself being swept away, not to be lured into a single unnecessary step, to regard others with the gaze of an animal, to feel no remorse, in short to crush with ones own hand any ghost of life that subsists, that is, to intensify the final quiet of the grave still further and let nothing beyond that endure."
It is excellent advice for coping in an extreme situation.
In the meantime we follow this routine, a little more frayed each day and evening to it's inevitable sad end, though to me now, in the midst of its violence, it feels like it will never end.
She lies on the couch at supper time immobilized in pain and spiteful refusal for outside assistance. I walk along the dark house turning on the night lights along the hall.
I tend her as best I can, but more and more we sit mostly in tense silence. Once in a while she might tolerate an old movie, but only one she already knows, and has memorizes every line and scene. The plots hold little interest for her. I suspect she longs only to imagine herself the heroine and star, being rescued, swept away, or for a few minutes, the master of a brighter destiny.
As the autumn deepens, and she gets weaker, and after a few unattractive fits of my own about the need for help, I think she is finally considering it, but she is so very afraid.
" I know you need help, that you're trying to do whats best for … I know I need it too.. but I wasn't raised like that…. It's just so…." She shakes her head back and forth and sobs.
She's also trying to be more considerate. She apologizes when she is cross sometimes and tells me more often that she knows I'm doing the best I can, and to remember she is too.
"I know you're trying. I appreciate it more than you know. I don't know what I'd do with out you. I love you so much. I do… and I'm trying sooo hard… if you only knew how hard I'm trying…." she say weakly, with tearful emotion.
"I know Mama, it's okay." I say and rub her shoulder, smiling.
These little moments help a lot toward getting through the rougher ones.
Finally, I end my day the same way as I started it, sitting in the rigid chair in her room, regarding her as she lays in pain holding her hand to her face where, underneath her thin skin, enmeshed in tissue and bone, the tumor silently spreads.