Advocacy, Antipsychotic drugs, Death & Dying

the lies added insult to injury

Connie’s mom Wini, bruised and bleeding at the ER in January 2011.

Connie Rifenburg’s comment on “hidden restraints: hidden abuse” brought tears to my eyes when I read it. After I emailed to tell her so, she wrote back with additional details. This is the story of her mother Wini’s death.


The videos of your mother in “hidden restraints” look just like my mother did in 2011. They sedated her because “she wandered”. She was in a locked ward, so the worst she could do was “wander” down a hall comprising ten rooms one way and nothing but a straight corridor down the other. But the “home” asked the doctor to give her more medicine to “help her sleep.” He did and told us that same day that he had instructed the nurses to watch Mom carefully in the following days to make sure it wasn’t too much.

Mom called me that night at 10 p.m.  We’ll never know how she did it because she had been unable to use the phone for some time. Still, my sister’s and my phone numbers were printed in very large numbers on a paper next to the phone, just in case.

I was in bed and asleep. The ringing woke me, and I decided to let the call go to the answering machine.  But then something told me I should find out what the call was about. My older sister was the primary contact, so I never expected to hear from the care facility. I thought maybe my sister was calling to tell me something about Mom. It was late, and I thought it might be an emergency, so I got up and listened to the message.

Wini & Sophie Thanksgiving 2009

My mother’s voice played back in a stutter on the answering machine recording. “I don’t know what’s happening,” her voice said. “Is someone there? I think I’ve hit my head, maybe someone out there can tell me.”

It sounded like she put the phone on the bed, and I thought she must be walking toward her bedroom door.  Then I heard the voice of an aide say none to nicely: “Wini, what’s wrong?”

There was a muffled answer from Mom. I guess she must have pointed to the phone because the aide picked it up and said “Hello?” Of course there was no response as she was talking to the answering machine. “No one’s there Wini,” she said to Mom before she hung up.

I immediately called my sister and told her to get in touch with the home right away because something had happened to Mom; then I tried calling Mom back.  I dialled and dialled and no one picked up.

My sister called me back and said the nurse had said she had “found mom wandering in the hall” after she had hit her head and they wondered if my sister wanted them “to call an ambulance for your mother?”  My sister didn’t hesitate, “Of course!” She said. “I’ll meet her at the hospital.”

“You stay where you are,” my sister told me. “Let me get a handle on the situation. No use all of us being there if there’s no need.” Not long after, she phoned again to say it was very bad and that I should come to the ER. “Mom seems to be slipping into a coma,” she said. I rushed to the hospital.

Apparently Mom had hit her head on the air conditioning unit in her room when she fell. The ER doctor showed us the CT scan; her brain had bled through seven layers he said. Mom was screaming and crying and so afraid of what was happening to her. It breaks my heart broke to know those were her last moments of clarity. Within a day we knew she wasn’t going to recover to any significant degree, and since she had a DNR order we chose to have her go to hospice.

My sister and I sent our sons to the care facility to get her furniture and things. They wanted her room vacated as soon as possible. Both boys remarked on how much blood was on the carpeting, even though the home had tried to clean it. That’s when we knew that she had been bleeding for some time before she called me and the aide came in.

What made us angry is that the home immediately fabricated a story about how the incident occurred, saying Mom was wandering the hallways and fell. They didn’t realize I had the phone message recording of what really happened, plus the grandsons seeing all the blood on her bedroom floor several days afterward.  They were just trying to cover themselves because the doctor had told them to watch Mom carefully because of the new medication. Mom was fine when we left at 3 p.m. that day.  But the facility tried to say she was very unsteady all day.  My sister and I decided we were not going to add to the loss of our mother by trying to “find the culprit”.  It wasn’t the first time we had found her care being neglected, and they knew that we knew. We didn’t sue, but we very well could have.

One day during the two weeks Mom was at the hospice, she came out of the coma. We felt God had wrought a miracle. All her grandkids and great grandkids came to see her; it was as if she rallied to do that one last thing.  The next day, she slid back into a semi-coma, and a few days later she died peacefully with my sister and I holding her hands. I had made a CD with some of her favorite music including a Perry Como album from the 60s. As she was passing away, he began singing “Until we meet again…”

My mother is in a better place with my dad now. But I think about her all the time, especially on January 22, which is the day she died in 2011.


The side effects of antipsychotic and other medications include “change in gait,” which essentially means people become unsteadier on their feet and their risk of falling increases. Taking people off antipsychotics decreases the risk of falls; putting people on them, and keeping people on them increases the risk of falls. Other side effects include tardive dyskinesia and a long list of others, which are similar for Seroquel (quetiapine), Risperdal (risperidone), and Haldol (haloperidol).

The untimely death of Connie’s mom could have been prevented. So could have that of my mom and countless others. Yes, we all die of something someday, and there are those who would say that a swift death is better than living with Alzheimer disease until the end. Maybe they’re right. Or maybe not. Either way, it’s the needless suffering, the neglect and abuse, and the lies that add insult to injury that infuriate the likes of Connie and me.

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1 thought on “the lies added insult to injury”

  1. I thought I was going to make it through this day without crying. Nope. Susan, whether you’re sharing your story or the stories of others, you have an ability to tell it the way it should be told. This broke my heart. I want to give this family a big hug for all the pain they suffered as a result of the residence’s obvious neglect. So nice that they were there for her in the end with her favourite tunes…


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