Tell your story!

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5 thoughts on “Tell your story!

  1. Sanctioned elder abuse by NYS article 81 ‘expert’ Guardians.
    By staff and administration at the Memory Care Facility in Rochester NY where my Mother is dying. Unbeknownst to us, years in advance her son tricked her into signing documents she did not know of. No legal options. No one here, in NYS or nationally will go up against Lifespan of Greater Rochester. Full impunity, immunity I have called and written about 300 organizations and people. Nothing I say or do or don’t say or do matters. Truth/reality doesn’t. This is organizational psychopathy. For power AND money. To maintain power. My Mom said to me early on, “They hate us because we are smarter and better looking than they are.” And, “They’re enjoying this honey. They have never come across the likes of us, they’re bullies and it’s thrilling to them.”
    Putting lotion on my Mothers itchy bloody skin is a sexual act, an excuse for me to “touch her in that way.” Reporting her recurrent bedsores (4 of them stage 2) at her lumbar spine is not indicative of poor care or that the facility ain’t so great. NO. IT MEANS: I AM OBSESSED WITH HER PRIVATE PARTS! (THE HUMAN BACK A PRIVATE PART?!?!)
    My Mother and I always close. (“You are me, we’re us.”) Forced out of her home of 48 years, us together again, a decade.. more, dual dementia, me retired advance practice RN (yes that field). Moved into, yes, a dump. Care, environment, substandard. I worked with a team of nurses inspecting facilities like this one (for nine years). Quality of care, standards of practice, assessing and documenting everything that makes a place ‘livable.’ Health, engagement, nurture, music…
    Within 2 days Mom was drugged for “psychotic behaviors” (“I want my child, Where is my Sylvia?”) No one called me. Sedated, sleeping 22 hours a day, scratched bloody all over. (again and again)
    My queries and requests not tolerated. I left her a note on her mirror:
    “I love you Mother I love you well I love you better than tongue can tell…” (Her Mom’s words to her too, from a 1917 Christian children’s poem, Which Loved Best).
    A meeting was called immediately: “Anyone who uses love and tongue in the same sentence is guilty of forced cunnilingus.” I am a heinous sex abuser, barred from all contact. Mom’s a professional writer, her notes then, “I love my daughter, I will die without her, Who are these people who are trying to kill me? There are people around who take my child from me I am a good Mother why In America? Help me Help me. ” Still confiscated. Pens pencils paper removed. 3 years later, I have some 400. “Meaningless.” Her words, cries, requests, “She’s not lucid, she has dementia you cannot believe a word that comes out of her mouth!”
    More lies. I even tried to kill her according to a staff person with an 8th grade education. ESL. Because we are (were) sarcastic and facetious and our long standing joke went over her head. Accusations functionally impossible. Her personal needs Guardian: “Your Mother does not love you or miss you. You make her say that. You force her, you incite her to say those things Sylvia. ” That she does after having had no contact with me at all – not even mail for hours days weeks months…. Short Term Memory Loss being the FIRST AND FOREMOST SYMPTOM OF ALZHEIMER’S DEMENTIA. Mom’s is now 10-20 seconds. She does not have the neuronal circuits to be able remember my telling her anything at all; days hours previously to SAY THIS ON MONDAY TO SO AND SO WHEN YOU SEE HER. She can and does however communicate her preferences wished needs and desires ……. as per article 81. As her guardian is bound to give her with trust, fidelity knowledge…
    Her expert Guardian – “That’s not true. Not all patients with dementia have ANY problem with their memory AT ALL, Sylvia. I am the expert here. You are not allowed to see your Mother.”
    Anyone who has worked with dementia clients knows that no one can tell them what to do. It is as well demeaning and insulting to anybody. I do not speak to my husband or anyone in that manner. AND WE DO NOT. It is a fundamental care principle. They have not lost their minds, their emotions, their wills. It is a disease of cognition, not emotion. My Mother is a proud dignified brilliant woman who share(s,d) an IQ with 3% of the population. I remain immensely proud of her. I ache for her because of what is being done to her. to us. We are in constant helpless pain. I want to die too, Mom. Three months ago she said, “I want to go away and die with you.”
    “They make you run away from me all the day and the day I need you.”
    Mom said nothing – for the first time – when her “Guardian” honey sweetie deared darlinged her. Three weeks ago, the last time I saw her spoke to her. I DID.
    “My name is not honey, Sweetheart. My name is Mrs. Fry. Do not ever address me in such a manner again.”
    We have been treated like shit. Ongoing for 3 years. I have been warned many times that “If you know what’s good for you….I was accused of placing her life in danger by refusing to buy her winter clothing and forcing her to walk in -20 below zero weather – in Dec. 2014. The weather never went below 28degrees. I have $2,700 of receipts for GOOD winter clothes. I am not her ‘personal needs guardian,” responsible for all clothing needs….” Hundreds of such examples. SO WHAT?
    I may never see my Mother again. This time I cannot because staff persons said I was rude to them, that I endangered my Mother and other residents by not “allowing her to enter the residence.”
    I have audio and video tape of all these encounters. My Mother screamed when I brought her back to her residence. “NO I won’t go in there. I only want my daughter.”
    She would bolt. I would hold her, validate her, talk to her reassuringly. I would not participate in forcibly pushing pulling dragging her…. Good communication good care takes time. “Difficult leavings?” If she did not have to leave me? No it is all my fault. She is happy there and loves it and everyone is so good to her. There is NOTHING wrong with her EXCEPT ME. Why then is she medically ill emotionally distraught? Formerly lithe robust energetic joyous? High functioning due to the dignified stimulating emotionally supportive environment provided by her daughter? But these letters and reports – 14 of them are “meaningless.” “We will not view them.”
    The lies are absurd, ridiculous, impossible. I give the proof. BUT NO ONE CARES. Not within Lifespan or outside of it. Dismissed. And more lies follow. More threats. More neglect. Active abuse. Denied medical care, meals, every standard of care legally guaranteed.
    Lawsuit, NYS TItle 81 guardian, my rights stripped. I do not have the resources her son and others do. Blindsided. I remain responsible for her personal needs. Curiously if Cottage Grove is such an excellent facility…..then why am I assured in reply that an “outside caregiver comes in 3 days a week to check on her, to administer care that they cannot provide???? as required by law? and to report back if the care provided there is adequate or not? .
    We love each other. That is not allowed. I borrowed money and spent hundreds of thousands of dollars getting ripped off finding out I have no legal options.
    We were evaluated at my expense for over a year by a Phd expert in the field. Shocked. She told them they must stop and give Mrs. Fry her daughter back, citing Article 81, they had NO PROOF, nothing to keep us apart, legally, factually, morally ethically as they loftily go on. That she was dying. Her symptoms were grief, not dementia. They spit her out.
    I CANNOT NOT DEAL WITH THESE PEOPLE. WHAT SHOULD I DO? HOW IN THE WORLD CAN I POSSIBLY SAVE MY MOM? AT THE END OF HER LIFE LET HER KNOW SOME JOY.
    SHE IS SO CAPABLE SO VERY EMOTIONALLY ALIVE SHE IS BEING DELIBERATELY DESTROYED. THE RIGHT TO LOVE AND GIVE LOVE IN RETURN STOLEN FROM US.
    They hate me because I challenged them for one thing. Someone knew more? Meant I was going to learn too, a good thing. Mom had it right. I love her, if she dies like this I will too.
    Any any any thoughts or suggestions please let me know. Obviously I cannot say or do anything right so there is no point in my further attempts at asking, reasoning….. BUT WHAT? Thank you forever ALL forgive my wordiness. My cup runneth over. The advice out there is – GET THE PSYCHOPATH OUT OF YOUR LIFE. WE CAN’T…. THEN WHAT?

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    • We can’t get all of the psychopaths out of our lives, or force them to give up their positions of power. To bring about change, we need a general public that is knowledgeable about psychopathy. Keep telling your story. Expose the abusers. Find a journalist who will write about and publicize your Mom’s predicament. Join the resistance and don’t back down. You are not alone,

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