Advocacy, Real life, Toward better care

a turn for the worse: july 28, 2016

Mom was lying in bed under the covers when I got there on July 28, 2016. She was facing the window through which the sun shone brightly; her back was to the door. I walked around the foot of the bed. All hope evaporated when I saw her corpse-like face.

The bruises on her forehead were worse than they’d been the previous day. Her eyes, which were mere slits, stared fixedly into the sunshine. If it hadn’t been for the high colour in her cheeks, I might have believed she was dead.

“Mom?” I said. She didn’t move. She didn’t blink. She didn’t make a sound. “Patty? Are you okay?” This time she tried to answer. But the words that emerged were little more than an exhale.

I pulled the armchair up close to the edge of the bed and sat down, my face close to and level with hers. I didn’t say anything for several minutes, and then checked in again.

“Is it sore Mom?”

“Yeah,” she whispered.

“It’s hard eh, Mom?”

“Yeah,” she whispered.

“Can I do anything for you?”

Silence for a good ten heartbeats, and then a barely audible, “no.”

That’s how it went for most of the next three hours. I asked her the same questions over and over: Are you comfortable? Are you in pain? Are you hot? Are you cold? Are you thirsty? Are you hungry? Do you want to sit up? Do you want to lie down? Do you want to go home? Sometimes she answered verbally, sometimes she squeezed my hand, and sometimes she didn’t respond at all. Besides the questions, I made statements: Go to sleep, Mom. Close your eyes, Mom. It’s okay, Mom. I love you, Mom. You are my hero, Mom. Gran is taking care of you, Mom. I tried not to cry. Sometimes, I was successful.

After I’d been there about forty minutes, a student nurse came in.

“How’s your mom?” He said. “We thought we’d try to get her up with a lift.”

Get her up? Are you mad? “I don’t think she wants to get up,” I said.

“Which arm is it that’s hurt?” he asked. What a ridiculous question. Why are you asking me? You should know which arm is hurt. You are supposed to be taking care of her! I wanted to shout at him, but I didn’t say a word.

“Was the oxygen off when you came in?” He asked as he was leaving, pointing to the pump on the other side of the bed.

“Yes,” I replied.

He returned about twenty minutes later. “I’m just going to take your saturation levels dear,” he said to Mom as he put a device on her finger. He apologized for the disruption, and wondered if I wanted some tissues. “I’m good,” I said. He left again.

Sarah,* the charge nurse, came in five minutes later, at a little after 4 p.m. I’d been with Mom about an hour. I liked Sarah. She was a “replacement,” a stand-in when one of the staff nurses was on holiday or ill. She’d been there the day before as well.

“Hi, how are you? Sarah asked me.

“Good,” I lied, my voice trembling.

“How’s your mom today? She was more talkative yesterday, eh? Is she talking at all today?

“She’s trying, but not able to. I think she has a broken nose. I think she’s dying,” I choked a little, tears welled. In hindsight, I can’t believe I said that within Mom’s earshot. She could hear and understand what we were saying, even though she was having a helluva’ time responding.

“I don’t like the way her arm looks,” Sarah frowned.

I didn’t like the look of Mom’s arm either. “It’s all black,” I agreed.

“Yeah,” Sarah said.

“What does that mean?” I asked.

“I’m not sure. I guess she fell on it, right?” Statements like this from the nurses drove me crazy. You know what happened. It’s all in Mom’s file. Why are you asking me when you know damn well nobody tells me anything.

“Did she see the doctor?” I asked. One would have thought that the doctor would have been the first person Mom would have seen after her “seizure,” but I had learned that common sense often did not prevail.

“Yes, I believe so.”

There’s no such thing as a straight answer, even with Sarah.

“This stinks. This bandage stinks,” I said, motioning to the dressing on Mom’s left arm. “And her face is flushed.”

Mom tried to talk. She failed. All that came out was a series of uhs and umms and sounds that were meant to be words but weren’t.

“I’m just gonna listen to your breathing okay?” Sarah said as she placed a stethoscope on Mom’s chest.

“Your breathing is kind of laboured, Mom,” I said.

“Oh?” Mom replied as if I’d informed her it was supposed to rain later that evening. I couldn’t help but chuckle. Mom was still with us, even though she looked as if she were on her way to a better place.

“Okay, It sounds good,” Sarah said, straightening up.

“We were singing and everything yesterday,” I said.

“Yeah, I know.” Sarah had done her job and read the notes.

“What was this morning like?”

“I don’t know,” Sarah said. “I just got here.” Standard answer from the afternoon shift nurses. They knew what the morning was like if they’d read the notes, but they stonewalled. Judging by the number of times I’d heard this or a variation thereof, I reckoned it had to be part of the nursing home 101 text book under “How to conceal stuff from curious family members who want information about those they love.” I couldn’t contain my frustration, despite my fondness for Sarah.

“Doesn’t anyone talk to each other? Nobody knows what goes on?” I said, keeping my tone even and my voice as sweet as I possible could.

“Well, she ate soup at lunch, but she hasn’t really been talking like she was yesterday,” Sarah said. “I’m gonna put a little bit of oxygen on her, just to make her more comfortable.” Okay, so you DO  know…

Mom protested, just as she had done the previous day. She didn’t like the oxygen; it was uncomfortable and noisy.

I went for a pee while Sarah took Mom’s blood pressure. I spoke to Mom’s roommate Cassie* on the way to and from the little bathroom that was at the corner of their shared space. A white almost-floor-to-ceiling curtain separated Cassie from Mom and me; it was torn and missing hooks in places where it was supposed to be attached to the metal tube from which it hung wonkily.

After Sarah left, I comforted Mom while the ratatatatat of the oxygen machine marked the passing time. I closed the blind so the sun wouldn’t shine in her eyes. I took some pictures so I could tell her story one day. I repeated my questions and statements at intervals. Mom tried to answer, or was unresponsive. I cried. I helped her to drink a little water with a sippy cup. She spluttered and coughed. I despaired. I did my best to be strong. She slept, squeezed my hand now and again, stared that blank stare into some void, or so it seemed. Even on this horrible afternoon, there were soft spots – moments of clarity, gentle humour and joy.

“Can you see me Mom?” I asked, and then joked:

I sang her some songs. She managed a garbled few lines of “When you wore a tulip,” which we had sung together with such gusto only twenty-four hours before:

Sarah returned; she gave me some Boost pudding. I fed it to Mom in spoonfuls. It was vanilla flavoured. Mom thought it tasted like banana. She liked it:

The snacking process took twenty minutes or so, after which Sarah returned. She repeated that she didn’t like the look of Mom’s arm, and said the only way to know if it was fractured was with an X-ray, which meant a trip to the hospital. We discussed the implications of that, whether Mom should go and why she hadn’t been sent sooner.

“I’m going to call the ambulance,” Sarah said finally.

“Somebody should go with her,” I said.

“It would be better, yeah.”

“I don’t think she should go alone,” I restated, knowing I couldn’t go because I wouldn’t be allowed, given I wasn’t the one in legal control of her care.

“Personally, I wouldn’t want my mom to go alone either,” Sarah said.

“She needs someone to go with her,” I asserted once more for good measure. It’s hard to believe that a nursing home would send an ill person living with dementia in the later “stages” (as Mom was), to the hospital alone, but I have no doubt it happens all the time.

“I’m going to make the calls,” Sarah said. She came back about fifteen minutes later, this time accompanied by the student nurse.

“We need to take her vitals and give her a Tylenol.” It was clear Sarah wanted me to leave even though she didn’t say it in so many words.

“Maybe you could call me later, and tell me what happened,” I said as I stood up to go.

“Sure,” she said.

I gave Mom a kiss goodbye, and made my way home.


*Not their real names.

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

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1 thought on “a turn for the worse: july 28, 2016”

  1. Amazing Susan, hurray for continuing thru the journey and documenting it online where it may live forever brothers newly in your situation. It is critical this information stay out there. As for me, in am now in a rehabilitation facility for many months and now I am writing about the experience living inside the facility. To my knowledge only one resident has ever written about it. Do you see any way we might help or reinforce each other?

    I’d love to hear from you!

    Carole Mulliken, M.Ed
    Director Emeritus, Dementia Alliance International
    417-989-9174 U.S. Central time


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