Tag: wounds

Advocacy, Real life, Toward better care

a turn for the worse: july 28, 2016

My Alzheimer's Story

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.

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

https://myalzheimersstory.com/2018/07/28/jillian-jiggs-and-a-mind-of-her-own-july-27-2016/

https://myalzheimersstory.com/2018/07/31/no-news-is-good-news-july-29-2016/

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jillian jiggs and a mind of her own: july 27, 2016

My Alzheimer's Story

Mom had an irrepressible spirit coupled with an extraordinarily strong will to live. When I was six years old, she came close to death as the result of a pulmonary embolism caused by a miscarriage; she spent many months in the hospital.

So it wasn’t surprising that she was much improved when I arrived to visit the day after her “seizure,” despite being bruised and battered. Her right arm looked particularly bad — it was completely black and blue — but she was calm, and far more articulate than she had been 24 hours earlier.

I found her favourite book, Jillian Jiggs, and asked if she would like me to read her a story:

It occurs to me as I write this that Mom may have been such a big fan of Jillian Jiggs because, from all accounts, she was just like the book’s heroine as a child: red hair, energetic, enthusiastic, creative, positive, confident, mischievous and full of fun. She retained all of those traits, even in the last days and weeks of her life, even under the most difficult circumstances:

As we neared the end of Jillian Jiggs, a nurse came in to check Mom’s oxygen levels. When she found they were down, Mom made it clear she wasn’t happy with the prospect of having plastic tubes stuck up her nose. One only has to listen to her words and tone to know that, while she may not have understood the complexities of what was going on, she knew very well what she didn’t like:

Exchanges like these are undeniable evidence that Mom had an excellent grasp of much of what was happening around her — she could process a lot more than she was given credit for. This is why I believe we need to completely rethink the way we see and treat people who live with dementia.

We talked lots during the next hour, though Mom’s speech was greatly impaired by her aphasia and the trauma she had suffered. I applied moisturizer to her hands, and we sang “When you wore a tulip” again (this time with more gusto in the delivery than the day before):

I left her side that afternoon feeling hopeful.

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.

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

https://myalzheimersstory.com/2018/07/30/a-turn-for-the-worse-july-28-2016/

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the beginning of the end: july 26, 2016

My Alzheimer's Story

On July 26, 2016, at about 14:30, just before I was about to go to visit Mom in Dementia Jail, I got a call from that day’s charge nurse.

“Your Mom had a seizure this morning,” she said.

There were two things that were strange about the call. One, that I was being called at all because the nurses were under orders not to give me any information as I was not the one in legal control of my mother’s care, and two, that Mom had had a seizure. She’d never had a seizure before.

“The caregiver tried her best to catch her before she fell, but she didn’t get there in time,” the nurse added. Something was odd about this as well. How could the caregiver have not gotten “there in time” if she were by Mom’s side as she should have been? And how could Mom suddenly have a seizure so violent that it would catapult her out of the wheelchair in which she had become confined and onto the floor in a nanosecond?

“What kind of seizure?” I asked.

“A seizure,” the nurse repeated. “She was on the ground, and turning blue. She’s okay now, but I wanted to let you know.”

If Mom were “okay,” the charge nurse wouldn’t be calling. They don’t tell me anything. And now a “courtesy call?” Something’s really wrong. I immediately stopped what I was doing, and drove the three minutes it took to get to Mom.

I found her sitting wide-eyed and upright in her bed; oxygen being pumped into her nose. She was talking a blue streak of gobbledegook to an empty room. Her face and right arm were bruised, but not too badly, at least not then. I sat down on the bed beside her. She babbled on. I agreed and empathized with whatever it was she was trying to communicate.

After fifteen minutes or so, a different charge nurse than the one I had spoken with on the phone came into the room. Three o’clock shift change.

“Patti took a tumble this morning, didn’t you Patti?” The nurse said in that tone that made me want to choke her. She turned to me. “You can stay as long as you like. Don’t worry about the time,” she smiled.

Alarm bells pealed in my head. My daily visits had been restricted to between one and three in the afternoon since February 2015, and today Nurse Ratched was saying I could “stay as long as” I pleased? Mom must be dying. Why didn’t they take her to the hospital?

“Have you seen Gran?” I asked Mom. “She’s taking care of you.” My voice cracked. Tears threatened.

I thought music might help (as it usually did), so I asked if she would like me to sing her a song. She said yes. My voice caught in my throat again as I began, and I was astonished at what happened next.

I checked in on her physical and mental state (she said she wasn’t in pain, nor was she hot or cold), and acknowledged the frustration she must be experiencing.

I asked if I might clean her mouth; it looked as if it were bleeding. I cleaned it a bit with a warm cloth, and then launched into “Take me out to the ballgame.”

Whenever her agitation seemed to be mounting, I began a new tune. She joined in every time. She knew all the words. We repeated “When you Wore a Tulip” several times; we also sang the “Battle Hymn of the Republic,” “Baa Baa Black Sheep,” “Mary Had a Little Lamb,” “Ring Around the Rosie,” “Three Blind Mice,” and others. This, despite her not being able to enunciate individual words, let alone string them together in an intelligible sentence.

I brought her several glasses of water, and helped her to drink because she couldn’t move her right arm. She kept accepting more water, which finally staunched the bleeding in her mouth. Why aren’t they hydrating her? Why is she bleeding in her mouth? Has she broken some teeth?

My best efforts to be brave and hide my tears failed on several occasions, even though it looked like Mom seemed better than I had originally thought when I arrived. After about an hour, the charge nurse returned to say the person who was in legal control of Mom’s care would be coming. Time for me to go.

“Remember that I love you,” I said to Mom. “And I’ll be back tomorrow.”

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.

https://myalzheimersstory.com/2018/07/28/jillian-jiggs-and-a-mind-of-her-own-july-27-2016/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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“good pleasure” #lastmonthwithmymom 16/07/16

My Alzheimer's Story

July 17, 2018: One month from today, August 17, 2018, will be the second anniversary of Mom’s death. I’m looking back at our last weeks together with joy, sadness, anger, gratitude and bittersweet grief. I intend to share some of my feelings, observations and experiences of that time two years ago over the next four weeks.

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

I found Mom in a deep sedated slumber on the afternoon of July 15, 2016, so I left without attempting to wake her. The next day, the sixteenth, I decided to flout the time restrictions that had been placed on me (as I often did), and got there at 3 p.m. (when I should have been leaving instead of arriving). I knew the chances were good that Mom would be awake at that time. I was right. She was awake; and she was delighted to see me:

I was still concerned about the wound on her leg and the dressing they had put on it, but I didn’t make much of it, because I didn’t want to upset Mom. Rather, since she was so up and energized, I chose to make the most of the afternoon.

Mom loved the time we spent together, it’s clear from the sound of her voice. To deny her that joy when she had so few pleasures, and when her world had become so small, was cruel and abusive beyond measure, particularly as the arbitrary rule was nothing more than an exercise in power and control by the administrators of Mom’s Dementia Jail and the person who was in legal control of her care.

Mom and I extracted good from the evil that was wrought upon us. These are snippets from the rest of our afternoon on July 16, 2016:

Some people might mistakenly believe that this kind of play is infantalizing. Or they might think it sad that Mom couldn’t do all the things she once could. I thought it best to generate as much positive energy and happiness as I could, and I did whatever it took to do that, especially as most days I found her like this because of the inappropriately prescribed antipsychotics:

I knew the things we did together made Mom happy because she often told me so in her words, actions and expressions just as she did at the end of our afternoon on July 16, 2016:

The sound of the beeping and You Are My Sunshine playing is the pressure sensitive alarm pad on her wheelchair seat going off and being reset when Mom stood up and then sat down again – another form of physical restraint. The tapping and clapping was Mom’s way to express love, approval, energy and happiness; she was discouraged from doing it by the staff and nurses and it was sometimes interpreted as “aggression,” a label which was then used to justify her being medicated.

During the last five years of her life, Mom inspired me with her spirit, love of life, courage and determination. I’m grateful for the extra time we were able to spend together, which was a direct result of Alzheimer disease. It was a silver lining that so many people miss. We created joy, healing and “good pleasure” amidst the hardship and challenges. We were lucky. Too many people living with dementia are left to die long before they’re dead.

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.

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

https://myalzheimersstory.com/2017/04/05/dont-mourn-me-long/

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i still smell the stench

My Alzheimer's Story

July 13, 2016, was a scorcher. And when I went to visit Mom in the afternoon, the heat made the stench of the dressing on her leg even more disgusting than it otherwise might have been. I gagged.

I had contacted the dressing supplier months before and had been told this type of dressing should be changed if the “perimeter were breached.” Bloody liquid was leaking in feathery rivulets from the edge of this one.

It was impossible to know how long it had been on as the dressing wasn’t marked with the date it had been applied, which it should have been – that’s part of good practice.

There was no point complaining to the charge nurse. “That’s just the way it is,” another one had said to me the last time I dared to make an observation about Mom’s unsavoury wound care.

Besides fighting unsuccessfully to get Mom off the antipsychotics she was being inappropriately prescribed, I’d also been fighting, also unsuccessfully, to get them to stop using this particular type of dressing on her wounds, which seemed to make them worse instead of better, and which lengthened rather than shortened the healing process. All of it was to no avail.

But I did what I could. I sat with Mom for the better part of an hour, as I did virtually every day even though she was “asleep” in the midst of the TV racket. I told her what I saw, even though she couldn’t hear me. When she awoke, I checked on how she felt, tried to comfort her, and asked her what she might want:

When I left to get Mom a glass of water from the bathroom in her shared room, I found a soiled and stinking incontinence brief in the garbage container. There were a couple of wet washcloths — one white, and one blue — on the floor beside it.

Meanwhile, a bevy of student nurses was happily occupied handing out ice cream cones to the residents on the main floor.

By the time I left, I was furious. As I drove home, I vented to no one in particular:

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.

https://myalzheimersstory.com/2018/07/15/19-ltc-human-rights-abuses-i-hope-quebec-will-have-to-pay-for/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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