Advocacy, Death & Dying, Life & Living

the truth behind my mother’s death: august 16, 2016

A blossom fell from off a tree, it settled softly on the lips you turned to me. The Gypsies say, and I know why, a falling blossom only touches lips that lie,” Nat King Cole crooned from the CD player beside Mom’s bed.

She roused slightly and mumbled a bit when I walked in, and I tried to make some room for myself to sit beside her on the bed. I sang along to the next songs on the disk: Ballerina, Mona Lisa, Walking My Baby Back Home, and Sentimental Reasons, songs I hadn’t known existed before I started listening to “Nat” with Mom in the fall of 2011. We had listened to and sung these songs together hundreds of times since.

Mom lay there quietly, a blank-ish look on her face. Her eyes were half shut.

“Would you like me to read you a story Mom?” I asked when Nat had finished his gig. No response. “How about Jillian Jiggs, Mom?” No answer.

“Let’s give it a try, I said. I read her Jillian Jiggs. She was silent at the parts where she usually chimed in with the rhymes. “Are you okay Mom?” She replied with a barely audible “Yeah.”

Over the next twenty minutes or so, I asked all the usual questions at intervals (How are you feeling? Are you tired? Do you want to go to sleep? Can I get you some water? Are you hungry? Do you want a cookie?). They elicited little if any response. At one point, I got her to drink some juice, which she consumed in several long drafts, just as she had done in the days prior.

“You were thirsty Mom,” I said. After that, I too fell silent. I read a book I’d brought along with me in case she was asleep. I don’t remember what it was.

“Mom,” I said after sitting beside her for another twenty minutes as she drifted in some in-between world. “I’m going home now. You stay here and rest.”

No response from her side. I gathered up my stuff — the book, my purse, and my iPhone.

“Take care,” I whispered in her ear just before I left. “I love you. I’ll see you tomorrow.”

On the way out, I stopped to talk to Roger,* his mother, his aunt (who was also a resident), and his aunt’s daughter. They asked me how Mom was. “Not great,” I said. They commented on the strange tilting of her head, asked what caused it. “I think it’s the meds,” I said.

“Did you hear Ellen* died?” Roger asked. “Rebecca’s* sister.”

“No! Ellen was in perfect health.” I was stunned.

“She fell at home,” Roger said. “They didn’t find her for a few days. Rebecca fell the other day too.”

“How could Rebecca fall?” I said. “She’s got that table tray across the front of her wheelchair. She’s locked in.”

“They were moving her, using a strap of some kind, and the strap broke.”

“Oh my God.” Poor Rebecca.

“It’s like your Mom,” Roger said. “Your mom was in the washroom. So why was the caregiver on the other side of the room? She should’ve stayed with the patient.”

I must have looked confused because Roger continued: “When your mom fell…”

“She was in the washroom?” I said.

“The caregiver was over by the window, the far window,” Roger said.

The far window was diagonally opposite the bathroom in a corner of the double room Mom shared with another resident. If the caregiver had been at the window, and Mom had been on the toilet in the bathroom, they would have been about twenty-five feet apart, and not within a direct line of sight. I cast my mind back to the day of the fall.

“Your mom had a seizure this morning. The caregiver tried her best to catch her before she fell, but she didn’t get there in time,” the charge nurse  told me on the phone. The caregiver tried to “catch” her? She didn’t get there in time? Where was she? WTF?

“She was on the toilet?“ I said to Roger to confirm.

“Hmhm.” Roger signalled his agreement. “You knew that didn’t you?”

“No I didn’t,” I said. “They didn’t tell me. They said it was just after her morning hygiene care. So I was under the impression that she was in her wheelchair. But she was sitting on the toilet, and the caregiver had left her there?”

“She was in the bathroom,” Roger said. “I assume that’s why she tried to get up…”

“They told me she had a seizure,” I said.

“Not at all,” Roger said.

I wanted to make sure I had understood everything clearly, so I repeated it: “So you heard that she was on the toilet, she stood up and then she fell? You heard nothing about a seizure?”

“Not a word.”

“Who told you?”

Roger gave me the name of the person who had shared the information with him.

Now I could piece together what had happened: Mom had been left alone sitting on the toilet. She had tried to stand up and walk on her own; she fell; and then she may have had a seizure. The caregiver had been unaware of what was happening until she heard the sound of Mom hitting the floor or the sink or the towel rack or her wheelchair or whatever, and then, more than likely, Mom screaming in pain and fright. The caregiver had dropped whatever she was doing, and rushed to find Mom already on the floor in the bathroom or maybe just outside of it. A part of the information that had been given to me may have been technically true, if Mom had indeed had a seizure after she fell.

But if she did have a seizure, it didn’t happen “out of the blue” as had been implied. If she’d had a seizure, it had been caused by a fall in which she hit her head, and broke her right arm. The fall had been the result of being left alone on the toilet, which should never have happened because she wasn’t able to walk on her own anymore. She wasn’t able to walk on her own anymore because the dementia jailers didn’t want her to walk on her own as it was inconvenient for them, and so they sedated her with antipsychotic drugs (using “behaviour” as an excuse), until she was catatonic for five hours a day, and when she was awake her balance was so precarious, also due to the drugs, that she was eventually confined to a wheelchair. Because she was confined to a wheelchair, and no one but me and Sally* and Ingrid* helped her to get up and walk, she lost the ability to do so, and that’s why she had fallen in the bathroom trying to get up from the toilet where a caregiver had left her alone knowing full well that she frequently tried to stand up despite the fact that she couldn’t do so without assistance.

Of course we’ll never know one hundred percent for sure what happened in Mom’s room on the morning of July 26, 2016, because there were no witnesses. Nor was there a CCTV or video camera to record the sequence of events.

“I’m glad you told me,” I said to Roger. “I knew they had lied to me. Why can’t they just tell the truth? It’s beyond me.” It was a rhetorical question. But Roger answered anyway.

“Because they don’t want you to know the truth. Because they’re protecting themselves. You’ve gotta come in every day,” Roger said. “And even then, you can’t keep track of everything.”

Mom died on August 17, 2016, the day after Roger told me what he’d been told about her fall three weeks before. I haven’t seen or spoken to him since, but I’m thankful to him for giving me the missing piece of the puzzle of how Mom came to be so battered and traumatized.

Mom lived with Alzheimer disease, but she didn’t die from Alzheimer disease or even of the complications of Alzheimer disease. The July fall and the resulting injuries weren’t the real cause of her death either — they were the almost inevitable culmination of four years of neglect and abuse.

The truth is, Mom died of inadequate institutional dementia care.

the dystonia did us in: august 15, 2016

dying with my mom

the beginning of the end: july 26, 2016

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

5 thoughts on “the truth behind my mother’s death: august 16, 2016”

  1. Well said, Susan. I’m thinking of you and your mother today, sending you love and healing. She knew you were doing your best, she knew you loved her, she knew you cared. All of this means so much, despite the institution’s failings. You are an amazing daughter and she would be so proud of the work you’re doing on her behalf. Because of your devotion to your Mom, so many others are learning about the atrocities that exist in our system. Of course, nothing will ever make up for the unnecessary suffering, and that’s the heartbreaking part. Keep fighting the good fight on her behalf!


  2. Thankyou for continuing the fight to improve care for people with dementia. Only this month I discovered Mum was missing her teeth when the mobile dentist came to check her mouth. She has a partial top and bottom plate and still some of her own teeth so eating hasn’t been a problem and she had enjoyed chewing 2 chicken drumsticks the day before the dentist came. I know she can be difficult and likely refused to let anyone clean her teeth but I do think I should have been told if this had been going on for over a week which seems likely. Noone knows where the dentures could be and having only replaced the bottom one 6 months ago I am not very impressed. NOW they are concerned about her having a “normal” diet even though she is supposed to have standby assistance with meals (especially now she is bedridden). The GP has been to see her though and found her alone with a tray on her lap and he helped cut up her food. Now she is on soft cut up food which is apparently 2 steps away from puree. Next is minced moist. Speech pathologist assessed her eating and no swallowing issues apparent. Even after all this effort the special toothbrush the dentist left is still wrapped in plastic and obviously unused despite being showed to the Team Leader and carer how it could help. I know staff are pushed to the limit and can’t force people to do anything but documentation goes both ways. Hope this anniversary was a little easier.


    1. Thanks for sharing your experience, Janelle. It’s so sad that these problems keep recurring and that the sources are primarily lack of staff, and lack of training. Although, that said, it is also a tremendous lack of compassion in addition to other resources. It’s my experience that care facilities may actually want people to decline to levels at which they are more easily managed. Sad but true. We have to keep working for change. Thanks for advocating for your mom.

      X Susan


  3. I would go the Nursing Home to visit my mom (with Alzheimer’s) and notice her food tray was untouched and nobody knew if she’d had anything to eat or not. I tried to feed her the cold, un-appetizing food but she didn’t really want it. There was so much neglect going on that it was sickening! We even hired 2 women who were supposed to take her out for a walk every day but, since I and my brothers all lived out of town, I’m not at all sure they did what they were hired to do, even though they always got paid!

    I am now becoming elderly and will refuse outright to ever be put into one of those institutions!! Death would be preferable!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s