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Posts Tagged ‘dementia’

My Little Girl – The Wildflower of Alexandria

Posted by E on January 14, 2016

Cu Mama Iablanita bridge 2

When you’re on the brink of death, common lore says that your life flashes before your eyes. But what they don’t tell you is that the same thing happens when someone you love – or at least someone who was a tremendous influence in your life – dies.  Take for example, my mother – who died only a month ago.

Parinti meiMy mother Lucia and I weren’t close – if anything, I was a parent to her: because both my parents were deaf I was paraded around like a hearing aid dog, interpreting anything they needed to know, translating back to them the often stressful or painful things a child shouldn’t be privy to. And yet this happened – I was there when my mother was arrested by Romania’s Securitate police and escorted off a plane because she’d made the mistake of confiding in a childhood best friend, Dida Tufeanu, the fact that she intended to declare political asylum. I was there when my father beat her brutally, when his fists rained upon her even as I tried to wedge myself between them.

On December 2, 2015, I lost both my mother and my little girl.

When someone you love dies, your entire life flashes before your eyes – every memory you shared between each other. Every kiss, every blow. The lightest, earliest caress glimmers behind your eyelids – like the time my mother read me fairytales. The time she pretended that Mos Gerila (Father Frost) was at the door and he had brought me two new book volumes of fairytales. The moment she put scars on me for the first time.

Lucia was the mother who kissed my forehead every night. The mother who hit me until she drew blood, whose nails clawed at my skin until new scars were left on my hands and arms. The mother who caressed me as I slept and told me I was the smartest little girl in the whole wide world. The mother who let my father hit me and joined in sometimes.

Sibiu 1My mother Lucia confessed that my father hated children and at the age of 55 he didn’t want a new life in his new, Securitate-given apartment. Over and over again, she told me that my father kicked her in the stomach throughout her pregnancy – determined to abort the fetus who was sure to cause him troubles.

Whenever I didn’t do my homework or play the part of the perfect little daughter, my mother told me that she wished she had indeed aborted me – and shared her regret that my father (who she had married only to obtain a Bucharest city permit) hadn’t managed to kick her stomach hard enough to get rid of me.

Elisa Sibiu deaf school

School for the Deaf, Sibiu spring 2015

But when she loved me, my mother touched my cheek and told me that I was her little girl forever – despite the fact that my brown eyes (my father’s eyes) disappointed her. Despite the fact that she had always dreamed of a Shirley Temple doll – blonde and blue eyes – and her happiest time was right after I was born and when my eyes had (almost) looked bluish. But then my baby blue eyes turned brown and her love for me waned, and then she turned into the same little girl nobody wanted.

Nobody ever wanted my mother – as a small child, she was the wildflower of Alexandria in Teleorman county, Romania – a deaf and dumb little girl who was raped around age 12 by brutal villagers – monsters who in turn transformed her into a monster. She grew to love only animals – kittens, puppies, baby goats – but never trusted people, and it showed.

Lucia was a deaf little girl whose own mother didn’t want her. Who was sent away to her uncle’s estate where she spent years living in the barn next to the outhouse, among the sheep and goats she tended because as “deaf-and-dumb” in the old country she wasn’t deemed human enough to sleep inside the house.

My mother lived in barns, next to sheep and goats, for most of her childhood. She slept in haylofts oblivious of the mice and rats that scurried at her feet. Having fallen off a changing table when she was two, her tympanic membrane had shattered and she was rendered deaf. Once she was deaf, she was useless. In 1940s Romania a deaf child was a curse, a useless mouth to feed. So her mother abandoned her on her uncle’s doorstep, and after that she slept inside a barn for years, unworthy of a bed inside their house – a feral child exposed to all elements except a human’s love.

All my mother ever knew was pain and hardship, and that is all she taught me.

Lucia fetita smallAnd then, the rape by village boys. She was barely twelve. The rape that caught the village priest’s attention and got Lucia sent away to a girls’ Boarding School for the Deaf in Sibiu, the heart of Transylvania. There she would learn to read and write despite having lived as a semi-feral child through critical stages of development.

That school would be the happiest time in her life – she made friends for the first time, learned to sign, lip-read and communicate with others. But the best part was when her and her friends raided the kitchen at night, or when they snuck out the window of their dormitory and went to the movies – when they enjoyed the brief freedom their fleeting youth had to offer.

But those early brutalities never took away the sting of her strap, the sharpness of her nails. My mother clawed and tore at my innocence because she herself never had the chance to be innocent.

She hit me because she was never caressed – she abused me because nobody ever taught her the importance of being loved.

My mother hurt me because everybody in the world had wounded her – because when you live with unkindness, you don’t ever learn how valuable we all are, how each of us without exception deserve love. She was deprived of love and learned that the only way to overcome her worthlessness was to wound others – and wound me, she did.

If I could see you one more time, Mama – I would tell you that you weren’t worthless. You didn’t deserve the pain and horror that others in that brutal world inflicted upon you, making horror be the only thing you knew.

I wish my father hadn’t raped you, Mama. I’m sorry that he impregnated you through rape and made this child that neither of you wanted. I’m sorry that he kicked your belly and convinced you that abortion was the only way – only to give birth to me, an inferior little girl who would never match your desperation for a Shirley Temple doll who might actually bring you happiness.

Iablanita bridgeI brought only pain, because that is the only thing you taught me – I still look at the thin white scars across my hands and arms and cry for you, Mama. A little deaf girl unwanted by the world. A little deaf girl sent out to feed the sheep and goats from daybreak to night, just skin and bones, a feral little thing who slept in the barn next to the animals you tended without anybody ever wandering if you were thirsty or hungry. Without ever wondering how you were in those cold hills when there was nothing except you, a little girl, and the brutal winds of Alexandria county, Romania.

I’m sorry that I told the police what you did, Mama. I was only fourteen years old, and I didn’t understand – but within a week I made sure to recant my testimony because I didn’t want you to get arrested. I didn’t want you to suffer more than you already had, more than a human being could ever suffer. You made countless mistakes that changed both of our lives, but in the end you loved me more than you loved anybody else in the world. You loved me as much as you were capable of loving, despite nobody ever having loved you. You did the best with what you had, and that was so very little.

Elisa Biertan tower2I inherited your pain, Mama. It was seeded inside your DNA, inside the epigenetic code your passed into my blood. Your pain shines in my eyes, Mama. Your wounds are my wounds, just as my father’s ancestral pogroms flow through my bloodstream.

In your later years, you were MY little girl – I tried my best to be there for your needs, despite my failures. I brought you food and paid your bills and tried to understand your needs, although I couldn’t. I’m sorry I put you in the hospital – I thought that after you broke your leg, that was the best thing for you. I wanted you to eat and be cared for, and the waiting list for the Deaf nursing home you wanted to go to was oh so long. But now I think I made a mistake. I should have made sure you stayed in your home, I should have figured out a way for you to trust the help that might have been arranged. Even if you wouldn’t open the door for social workers and Meals on Wheels, even if you didn’t trust anybody but me. Maybe you might have lived longer – although we all die. Although after all, nothing matters.

bob rumballThe month after you died, I tried to kill myself. We all die anyway, right? – so what’s the point? I felt that everything I ever did was wrong, and that you died because I forced Mount Sinai Hospital to keep you and look after you until you’d get a bed inside the nursing home of your choice, Bob Rumball Home for the Deaf. But neither of us knew back then that Bob Rumball nursing home had come to accept hearing people, and in some cases placed deaf people lower on their list in favour of hearing applicants. I didn’t know that in the end you would die in hospital while waiting 13 months for a bed at the Bob Rumball Home for the Deaf – after having waited another year before that also – in total, close to 2 years overall on their waiting list. For whatever reasons which I strongly believe involve either mismanagement, corruption, bribery or God knows what, the Bob Rumball nursing home in Barrie, ON kept taking more and more hearing people in instead of a deaf person like you, who most needed their help.

Elisa Sighisoara yellow street

Walking the same streets my mother had walked

I miss you so much, Mama – the wildflower of Alexandria county. The skinny little girl who herded goats barefoot, thirsty and afraid, and nobody ever loved because they all thought you were worthless. I understand now why you didn’t know how to love – because nobody ever loved you. Because you were born and eventually died alone, like a parched little flower, so tender and beautiful but unwanted by the world, in the foothills and plains of Teleorman county.

You were somebody, Mama. Even in this awful, ugly world where the rich are everything and the poor are considered worthless, you were an innocent little soul who deserved more but was never loved and was abused in every way imaginable. I’m sorry this happened to you, my little girl. I’m so sorry that you didn’t understand the meaning of compassion because you never felt it yourself.

Lucia July31And after all that pain, life cheated you by cutting your life short through early onset dementia (Alzheimer’s). Although your last wish was to return home, there was no money. You worked more than twenty years for Canada’s CIBC bank, never missing a single day of work, and they packaged you out without a pension, leaving you to die in poverty. Leaving me an orphan in a cold, indifferent country I was forced to come to as a child – a country that has brought me only pain.

You were only 71 when you died – an unfair, ugly death you fought with all your might. It wasn’t fair! You didn’t want to die – you struggled so hard against the darkness that seeped into your existence – that made you forget how to eat, how to drink. The darkness that made you become weaker by the second, that fought me so hard whenever I tried to feed you, to keep you alive. But through it all, you didn’t want to die. You raged against the dying of the light – you fought to hang on, no matter what.

In my heart you will be both my mother and my little girl forever. On December 2, 2015, I lost both my mother and my little girl.

I couldn’t even afford to bury you, and I know how scared you were of being cremated. In your later years you regretted so deeply that you couldn’t return to Romania, and I shared your pain. In the end I was just as worthless, just like those who were supposed to protect you – I’m sorry that I failed your wishes, Mama. I’m sorry that in the end I didn’t have the money to abide by your wishes. In the end, I failed your last wish not to be burned.

I think of those little white hands, their skin so translucent and frail. A little nest of bird bones, a tiny sparrow limp inside my grasp. No semblance of the beautiful lady you once were, or the spiteful young mother who clawed my skin to shreds. No more heavy tears, no more regrets. We had made peace with each other, and I could finally see that beautiful light of your soul, the light that had never had a chance to shine.

My little girl, I told you as I kissed your cheeks, your forehead. Goodbye, my little girl. My little one.

I can’t wait to see you once again. I can’t wait until this pain is over – we live in this horrible world where indifference reigns and nobody gives a shit about the fragility of life, the tenderness of vulnerability, the frailty of hope.

You were innocent. You deserved to be loved. You deserved it, but everybody failed you. And then you failed me – because you didn’t know any better. Because nobody ever taught you how to love.

Goodbye, my little girl. Goodbye.

imagini-cu-ghiocei  Stefan Luchian - Pastorita

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Posted in abuse, ancestry, deaf, death, indifference, mother, personal, romania, sadness, suicide | Tagged: , , , , , , , , , , , , , , | 1 Comment »

An Open Letter to Mount Sinai Hospital

Posted by E on December 3, 2014

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This is my mother, Lucia. She is currently residing on the tenth floor of your hospital, but if you get your way she won’t be there for much longer.

She has been deaf all her life, is only 70 years old and suffers from diabetes, stroke damage and, worst of all, early onset Alzheimer’s disease. In the past few years, she’s had several falls which resulted in a broken hip, a sprained wrist, and scores of bruises. Two weeks ago, she fell somewhere on the street (I don’t know what exactly happened since she has no memory of the incident) and ended up being admitted to your Mount Sinai hospital in downtown Toronto.

I spent the week after her admission trying desperately to get a hold of my mother’s newest CCAC coordinator, who apparently went on an extended holiday. This is the third coordinator my mother has been assigned to in under a year, by the way. I don’t even think the woman remembers my mother without looking up her case file.

CCAC stands for Community Care Access Centre – these are the folks who get to file the applications for people waiting for long-term care homes. They decide when someone is in crisis, and when someone can safely remain in their residence for sometimes years on end, while waiting for a bed to open up.

More than ten days passed and nobody at CCAC bothered to phone me back. As I waited, I did my best to delay responding to the frantic calls of the in-house Mount Sinai social worker, who kept leaving me voice mails indicating they wanted to discharge my mother. Eventually I had no choice but to call Alana back and arrange for a conference call to discuss “transition” plans.

I spent the weekend before the conference call educating myself on my mother’s rights: a huge learning curve. Over the last year, she had already been on a list for nursing homes – at the top of her list is the Bob Rumball LTR Home for the Deaf – located in Barrie, ON and the only home in Canada specially-designed for the needs of deaf seniors.

According to the Long-Term Care Homes Act, an Ontario resident has the right to go to the nursing home of their choice, not the first available bed that opens up. And, as a deaf pensioner, before her mind became clouded with disease and confusion, my mother had tearfully insisted she go to the one place she felt she would be understood – among people who were just like her, who she could communicate with in sign language.

As a Romanian-born deaf person, my mother cannot adequately communicate in English with anybody – thus being locked inside yet another cage of disability and inadequacy.

Worse yet, her eyesight is now failing.

The wait time for the Bob Rumball Centre has been quoted as anywhere from four months to two years. The wait depends on who is deemed to be in crisis and who lucks out with a more hands-on CCAC coordinator. Of course, in order to prevent discrimination the Rumball Centre also takes in hearing people from the community, and thus my deaf mother is likely lower on the list for the only Deaf seniors home in Canada than someone higher on the list who happens to be hearing.

As her power of attorney representative, I owe it to her to ensure that her needs and wishes are met. For someone who worked for the CIBC for over twenty years and received no pension, she has been left penniless and dependent on approx. $650 a month to survive. She cannot afford an expensive retirement home or a private room. And as a writer, I am dependent on contracts and all-too-meagre royalties. I have no extra income to subsidize her care, and I shouldn’t have to – in Canada, seniors are supposed to be cared for by the medical profession.

Or so I thought.

But clearly, the Mount Sinai staff were more eager to clear out a pesky bed-blocker than ensure that my mother won’t starve to death in her tiny apartment. But I was prepared to be pressured – reading this Toronto Star article on hospital tactics to clear out seniors in need was eye-opening and prepared me for what was to come.

“Our medical team has assessed your mother and found her medically-stable and ready for discharge,” I am told by Alana the Mount Sinai social worker. “So we’re contacting you to make arrangements for her discharge.”

Really? Did a team of medics actually assess my mother and found her capable of being on her own? I seriously doubted the in-hospital social worker – whose job is to clear bed-blockers and send people like my mother onto other pastures – had even laid eyes on her.

What made her statement even more hypocritical was the fact that I had visited the hospital a day earlier and spoke with a nurse who expressed her concern about my mother being able to live independently. “But she does use the walker to get to the toilet,” she tried to reassure me. Because that’s what counts, the fact that my mother, for the most part, can make it to the toilet. Sure, she might be unable to feed herself, wash herself, shop for groceries, manage her rent and any kind of bills, but when she starves to death in her apartment at least she’ll have a clean diaper.

But back to the conference call, where Alana and Denise, the in-house CCAC worker, were doing their best to convince me there was no better place for my mother than to be at home. “Oh, but her CCAC coordinator can make sure that she receives daily visits and help with meal prep,” the social worker gushed. “She can’t stay here.”

“But how exactly is this going to happen since she has a track record of not opening the door to strangers? She doesn’t know or recognize most people, and she thinks they’re trying to poison her so she won’t accept food from them.”

My mother might be considered “medically-stable” for discharge, but mentally she is anything but. In a perfect world, her CCAC coordinator would reassess her immediately and deem her to be in “crisis”. Following this, she would receive daily visits from a home care provider until a bed opened up in her nursing home of choice. However, in a perfect world, her CCAC coordinator wouldn’t have gone on vacation for over two weeks and left nobody in charge of my mother’s file.

In a perfect world, someone with broken limbs, deafness, failing eyesight and paranoia (someone who doesn’t open the door to “strangers”) wouldn’t be expected to live independently.

And ultimately, in a perfect world, my mother wouldn’t have Alzheimer’s and dementia.

Perhaps the health professionals at Mount Sinai need some brushing up on the consequences of this terrible disease on a person’s mind and spirit. So, without further ado, let me explain to the Mount Sinai Administrators who are itching to get rid of my mother exactly WHY she is not “medically-stable” for discharge:

PARANOIA:

– sometime last fall, she suddenly decided that the Meals-on-Wheels delivery people were poisoning her food. She made herself deliberately ill several times to vomit the food, and then refused to open the door to the poor Meals-on-Wheels drivers, until we had no choice but to remove her from the program

– her last CCAC coordinator had tried to arrange for daily visits, but my mother – being paranoid and suffering from hallucinations – refused to open the door and allow people inside her apartment.

CONFUSION:

– she doesn’t know what day, month, year it is. She doesn’t know her own age. Heck, she doesn’t even know her address and has forgotten why she ended up in the hospital. She forgot the names of her closest relatives and struggles for a few seconds to remember who I am when I visit her in the hospital

– she forgets to take her medications, which as a diabetic places her life in jeopardy.

POOR HEALTH

– with a broken leg and being too frail to use crutches, she cannot go grocery shopping or prepare meals for herself. The last time she cooked potatoes, she ended up with a nasty burn that left a scar on her arm.

PUBLIC SAFETY

– she insists on still cooking on the stovetop, which places everyone in her building in jeopardy in the event she forgets to turn off the burner. She cannot figure out how to use a microwave or a kettle, and the stove is the only way she remembers to warm her food.

This isn’t the way things should be.

If a hospital stay costs the health care system $1000 per day, why not allow those who cannot afford expensive private rooms in nursing homes the option of taking those empty rooms?

“Have you considered paying for a private room at Bob Rumball?” the hospital’s CCAC coordinator asked me. “She could be in there within two months instead of years.”

If only.

There are rooms that stay empty in every nursing home because they are designated as above the “Basic” guarantee fee the Ontario government is willing to pay for each senior. These private or semi-private rooms – which cost in the range of $2000-$3000 per month – would still be far cheaper than keeping a senior in the hospital for months on end.

But my mother doesn’t have that kind of money, and neither do I.

And in the end, I shouldn’t have to threaten a hospital with a liability lawsuit for prematurely-discharging a frail senior who is a danger to herself. “We’ll have to speak with Administration,” Alana-the-social-worker tells me, and I hear the disapproval in her voice. I know I’ve just made the Admin department very unhappy. “But she can’t stay here.”

I shouldn’t have to hire a lawyer – especially since I can’t afford it. But hopefully through a service like that provided by the Advocacy Centre for the Elderly, I might be able to get some free legal advice on how to proceed from here.

I shouldn’t have to walk into my mother’s apartment next month and see her fallen on the floor with another broken hip or leg. Or find her starved to death because she cannot feed herself and often chokes. But it appears that, come hell or high water, both the CCAC and Mount Sinai professionals are determined to send her home.

I suspect that my story isn’t that unique from what thousands of other families all over Canada experience every year. Still, the feelings of utter frustration that I have experienced this month from the medical establishment has left me shaken and profoundly angry. I once believed the highly-touted Canadian health care system placed humans first and profit second. I no longer hold any faith in this being true.

Mount Sinai might serve great kosher food (my mother sends her thanks), but the way they handle the frail and elderly is anything but kosher.

 

Posted in deaf, deafness, mother, news | Tagged: , , , , , , , , , , , , , , , , | 1 Comment »