Tag: behaviour

Rachel* sent me the first part of her story at the end of July 2018. She told me how the residence in which her father lived had banned her from seeing him for six months because she had advocated for better care. I asked if I might share her story on MyAlzheimersStory.com because there were so many parallels to my own. She answered:

“Yes, Susan. PLEASE SHARE MY STORY. I want the world to know the painful things that these places do behind closed doors. They put all the blame on caregivers, and yes I KNOW there are a lot of bad ones out there, but until we start looking at upper management, facility owners, our own government, etc. Nothing will change. It’s all the business of the rich and powerful, from health care conglomerates, government, law enforcement, pharmaceutical, and insurance companies — THEY’RE ALL CORRUPT!  Yes, Susan, share my story.  I send you and you family all my best, as well as to your wise and thoughtful readers. Live well, Rachel”

Three weeks later, I sent Rachel an initial draft of the first 500 words based on the raw material she had given me, and asked her if she still wanted to go ahead. In the meantime, the ban on her being able to see her father had ended. I didn’t hear from Rachel for two weeks. Then, on September 6, she wrote back:

“Susan, oh, you’re so kind. I’m sorry I didn’t get back to you sooner. I’m not doing well with texting lately. I so much would rather talk to you. So much has happened since I last talked to you. My No Trespassing expired, and for a moment I thought that was good, but I know nothing has changed and maybe this time I’ll walk into a trap. My brother goads me through texts to go visit dad, “Your trespass was up on Aug. 16,” he texted. (Remember, my brother and I DO NOT get along). I’m thinking if I go in there, I may be walking into a trap. Maybe this time I may be arrested!!!! With the lies that DON [Director of Nursing] told about me to her staff and police, falsifying records, I wouldn’t put anything past her!!!

Well, it was agony just waiting around for some sign that it would be okay to go in. My brother texted me with hostility: “I don’t see why you don’t go in to see dad. He’s had falls lately and not doing well.” This hurts me for my precious dad, I just don’t want to be walking into a trap!!!

I found a minister, who said he would go with me, and be my witness that I would be doing nothing wrong. Just going in to see my dad and then out, not even talk to anybody else. That WAS the plan. It didn’t work out that way. On Sept. 4th I saw my very doped up, incoherent father for maybe 25 minutes. He didn’t even seem to know me. I struggle to bring myself back to his mind. Finally at one point he stuck his head forward and motioned for me to help meet him with a searching kiss. This broke my heart. I began to cry.

The nurse manager (large man) peaked his head in around the door. Soon after the police were in my dad’s room, telling me to step out into the hall. He informed me another Trespassing will [be put on] starting today, it will be for a year, and the reason for it is that I have (been accused of – more lies) “threatening messages to staff, previous having issues w/staff. Staff does not feel safe with her in building.”

I was in shock. I looked back for the last time at my dad. The officer kept demanding I move myself out of the building. The meek pastor said we did nothing wrong. I pleaded with the pastor not to talk to the officer, as they twist, and turn things around, not to be trusted. I don’t think he had as much “experience” with law enforcement as I had, by this time. After all, he said he had nothing to hide, and that he was just being honest. I laughed to myself. We made our way towards the main entrance. The tall male officer continued to tell me more belligerent things about my behavior and kept on my heels to get out of the building.

Once I was out, they separated myself and the minister. They talked to him in the lobby, while they threatened to put me in jail if I reentered the building. This was also a clear way to have a little private conversation with my witness.  Once the minister came out, he told me “you better get yourself a lawyer.” (Like as if I haven’t been trying to get one since the first Trespass???) (Sorry, more sarcasm).

I’m very weak these few days, with a heavy broken heart. The lies of the nursing home, the numerous, rampant fraud, falsifying records, abuse of residents, attacks on my character, the lies said of me, the bullying by my brother who is in alignment with this DON (for his own $ agenda), the struggle to get to my dad with the last and only life line to him I have left. But now he’s so over medicated, and in pain from repeated (not reported to ME, but to my brother) falls. I am made to look like a monster to the staff, and to all who give that DON their respect for her position of authority. I thought about it today, all of it. The very things she accuses me of doing, SHE HAS DONE. I know that I am not her first victim, nor will I more than likely be her last. She is relentless with her attacks. For her it is like a sport, and she doesn’t stop until she obliterates her opponent. Susan, thank you for all your Loving kindness. My best to you, your family, and everyone who encounters a psychopath.”

I cried as I read this, having lived Rachel’s frustration and despair myself. I emailed her back immediately, asking her if I could share this part of her story in her own words. She answered:

“Susan, getting tired these days. Still spinning my wheels. Getting much of no where. You can run my story. By now it may not be making much sense. I’ve come to believe that the institution’s that are there to “do no harm” “serve and protect”….. really don’t. I don’t believe our government is for the people. I’ve come to the point that I almost believe that it’s these big companies that are our government. If you’re poor, where are your rights? I heard the other day that the court, legal system has always been the rich man’s game. Well, perhaps that’s true, because I just can’t seem to get justice for my dad. Susan, do with my story as you wish. I’m tired, and I have faith in you. I know that you are a kind person, and I thank you for your help in getting the word out. All my best, Rachel”

Sadly, there are thousands of stories like Rachel’s (and mine!), and there are tens of thousands more that don’t get to this point because family members keep their mouths shut about neglect and abuse because they fear (justifiably so) being banned from seeing the person they love. Instead, they are torn apart witnessing the torture; they know if they “complain” the situation will get worse. Imagine the heartbreak of that.

Telling your story helps create change. Please share yours if you have one.

*Not her real name.

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2015/03/12/the-sun-the-moon-and-the-star/

https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/

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Take my short survey on behaviour here.

Janet Ng was the primary care partner to her mom, Shirley Ann Snow, who died three months after my mom Patti died. Janet, who lives in Texas, has been following MyAlzheimersStory.com for a long time. She has been feeling increasingly compelled to share her and her mom’s story. It looks like she’s ready to start with this guest blog post.

~~~~~~~~~~~~

My mother was stolen from me, one piece at a time, right out from under my nose. I didn’t see it until it was too late.

Dementia didn’t steal her. Nor did old age, or the natural progression of a chronic disease. Care stole her. Institutions stole her. The medical profession twisted and mutilated her until her organs shut down one by one over a period of five years. They stole her in bits and pieces, chipped and chiseled from the healthy person she had once been.

Looking back, it amazes me how I missed what should have been the most obvious clues. Like many other families who are misled by lies, cover-ups, and subterfuge, I trusted others’ judgment, their words, and their promise to do no harm. I believed their “benefits outweigh the risks” scams, their smiling facades, their tricks and their schemes. I was lulled into complacency and falsely believed that what they did was best for her when actually it was the worst. Now I am the one left with the grief and guilt for allowing them to murder her before she was meant to die.

Miraculously, Mom was alert, communicative and “with it,” until the very end. It was only during her last three days, when she became very ill, that she was unresponsive. Until that point she always knew me, and we were able to talk to each other. Amidst all the hurt and devastation, that at least was a blessing – something I can cling to. Our times together are memories I will always cherish despite everything else.

We trust doctors and nurses because we see them as omnipotent gods whom we mustn’t challenge. Even when our gut tells us things aren’t right, we dismiss our doubts and instead trust their so-called wisdom and experience. We become like flocks of sheep that only wake up when it’s too late. And by then, our experience means nothing because our loved one is gone. We are exhausted and depleted by grief, with no emotional energy left to speak out for the sake of others who are trudging the same tragic path, that I have come to believe is criminal.

It has taken me almost two years following my mother’s death in 2016 to have the stomach to think about the slow train of legal euthanasia she was on, much less write about it. But I think it’s time to speak out, and to tell her story. Why? Because I see more and more families unknowingly boarding the same train. It’s time to blow the whistle, and stop the train.

I will write about her journey into darkness, a journey that was imposed on her by the very profession that was supposed to succor and heal her. Perhaps the most frightening part is that her story is not unique, although it may have been more horrendous because she was a fighter, and it may have been tougher for the system and the people in it to collectively break her down.

I pray I’m able to fully relive her experience on paper, and that it doesn’t become too excruciating for me to recall. My hope is that the telling of it will help others avoid the same hellish path.

Janet Ng, September 2018.

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https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/

https://myalzheimersstory.com/2014/09/07/the-main-thing-is-to-keep-going/

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Take my short survey on behaviour here.