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/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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My Alzheimer's Story 
Wow. I can feel her fatigue and despair through her words. When did we become such a combative society? Corporations bullying citizens, brothers pitted against siblings, managers bullying their way to …to what end? Rachel makes an excellent point: “I’ve come to the point that I almost believe that it’s these big companies that are our government.” I’ve struggled to define the problem, but this is definitely at the core of it. Until government starts acting in the interest of the people and not the capitalistic interest of institutions, we might not be able to effect change easily. The only way around the current impasse is by implementing new laws, and for that we need our leaders to be listening. Thanks for sharing, Susan. These stories must out!
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Thank you Susan for highlighting what happens in these facilities with DONs taking sides with the less interested family members to advance their agenda ie $s and bullying the caring and attentive family member to the extent of calling police etc. I know this happens as it happened with me and my mother and I was banned from visiting my mother for the last two years of her life except by appointment and with an admin staff supervising my visit only mon – fri no weekends or public hols no Christmas, no mothers day, birthday if it fell on a weekend, no Easter. What these people do not understand is that they are not only hurting the caring daughter/son but the person being damaged most is the resident who will receive no visitors. And by my not being able to visit I was not able to record the damage and deterioration that was happening to her, as well as the obvious (as your photos show) introduction of unsuitable medications just because they can. My mother’s doctor did not prescribe these drugs but they asked another doctor to do so because she used to sing quietly to herself which they considered to be ‘disruptive’. This is happening in Australia Susan, as well as in Canada so the whole Dementia care industry world wide needs to be looked at and regulated somehow. Keep up your good work.
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