Category: Annie & Cricket

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

look who’s talking now

My Alzheimer's Story

It’s been awhile since we’ve heard from Alzheimer Annie, whose misadventures in long-term care are based on real life situations I have witnessed or which have been recounted to me by others. This is another in the series of vignettes I’ve create based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “look who’s talking now.” There’s a link to all the vignettes at the end of the post.  

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look who’s talking now

I look down the hall. Not a soul in the place. I’m alone in this chair. I’ve been here for ages. Mummy must wonder where I am.

“I’ve got to get out of here,” I say aloud. “It’s getting dark, almost time for supper.”

A girl dressed in blue appears out of nowhere. “What was that, Annie? What did you say?” She asks as she passes by.

“Nothing,” I say. The blue girl stops. She turns her head, looks at me.

“That’s not true, Annie. I definitely heard you say something about supper.”

“Then why did you ask?” I whisper.

“What’s that?” Why does she always sound so mean? I feel like I’m in the principal’s office.

“Then why did you ask?” I repeat a little louder. Maybe she’s hard of hearing.

“Don’t be cheeky, Annie,” the girl says. “It’s not nice. You had lunch half an hour ago. Supper isn’t ’til five. You know that. Supper is another four hours from now.” She starts down the hall. Good riddance.

“I don’t care when your stupid supper is,” I say under my breath. “All I know is I’ve got to get out of here and get home to my mum. She’s going to be worried about me.”

The girl stops again. She turns around and comes back until she’s right in front of me. She plants her feet wide. She has white running shoes on. The laces have pink cats on them.

“What did you say? Did you just call me stupid?” Her words are sharp and pointy. I look straight ahead, stare at a place below where her belly button must be. Her hands are on her hips. Her fingernails are gold with silver with sparkles.

“I didn’t say anything,” I lie.

“I’ve had just about enough of you, Annie. You’re really trying my patience,” the girl says.

Piffles. You’re the one who’s trying MY patience. You make me crazy. This place makes me crazy. It’s full of crazy people. All I want to do is get out of here. I look up at her. Careful. Don’t get into trouble. Back down the hall she goes. Her running shoes squeak.

“Thank God I’m off tomorrow,” she says to the air. Thank God is right. You won’t be here to boss me around. The girl turns into the room with the desk and the drawers and all the papers in it. That’s where they sit.

“Annie’s talking to herself,” I hear her say.

“Again?” Not the blue girl. Someone else. The tall one maybe.

“Yeah,” the blue girl says. “And she called me stupid.”

“Okay,” says the second voice, “I’ll make a note of it. It’s time for her meds anyway. I’ll give her an extra PRN, that should shut her up for awhile.”

“Yup,” the blue girl says, and they both laugh.

https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/

https://myalzheimersstory.com/2016/10/17/death-by-recliner/

https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

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©2017 Susan Macaulay / MyAlzheimersStory.com

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

death by recliner

My Alzheimer's Story

death-by-recliner-cropped

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “death by recliner.” There’s a link to all the vignettes at the end of the post.  

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death by recliner

”I’m just going to tilt this back for you Annie, so you’ll be more comfortable,” the girl says, as she raises the footrest and my feet with it. My body settles back into the big chair. My legs and feet are in the air; my head sinks into something soft.

“You can take a little nap, Annie, won’t that be nice?” the girl says. Light streams through the window beside me. It’s a sunny day. A warm day. Wouldn’t it be lovely to be outside?

“I don’t want to take a nap,” I say. I’d love to be out in my garden. I bet the geraniums in my window boxes could use some water. It’s been dry lately.

“Yes you do,” the girl says “you always have a nap after lunch. Here let me pin you.” She tugs and pinches my sweater at the shoulder on one side and then the other, puts a blanket across my middle. “That’s it dear. You’re all set.”

“Na na na na no,” I say. I put my elbows on the armrests, reach forward and pull with my hands, squeezing down and in with my lower legs and heels at the same time. The chair starts to move. My body propels slowly forward. My feet get closer to the ground.

“Annie. Stop that Annie,” the girl says. “It’s time for your nap.” She pulls the footrest up. My feet lift; I lean back. The hollow of the seat cradles my bum. I’m half lying, half sitting. I want to get up. I try to get up. The girl pushes somewhere beside my head; my feet rise, my bum lowers, my head goes back.

“What am I going to do with you Annie?” She says; her voice has an edge. It’s scary when the girls talk like that. I don’t like that tone of voice. It makes me feel like something not good is going to happen.

See the real thing here: hidden restraints, hidden abuse

“Let’s see,” she says. Her head turns slowly, and then stops. I look where she’s looking. There’s a striped chair not far away. The girl walks over to the striped chair. She has dancing clowns on her shirt. Her pants are blue. I like blue. I try to stand before she returns. I’m almost up. I’m almost there. But the girl is back before I can make it. My legs rise high as she pushes the seat of the striped chair under the footrest. I flop back. My breath pops out: huh! as my spine hits the chair with a thump.

“There we go, Annie. That should keep you safe and sound my love. Have a nice nap,” she says.

“I don’t want to have a nap,” I say. My eyes are wet and blurry. My throat feels tight.

“Yes you do.” She pats my foot. “You like to have a nap after lunch.” She walks out the door. The clowns go with her. I sit alone. The sun shines through the window. I need to get up and get out of here. I bend my knees, grab the ends of the armrests with my hands, and pull as hard as I can. I use my feet to push down on the top of the footrest. I feel the strain in my thighs. Nothing. The chair is stuck. What’s wrong? Why doesn’t it move? 

“Help!” I cry. “I can’t get up. Help!” No one comes. I’m trapped. Something pounds in the middle of my body. I feel cold. Oh my God help me, I’m trapped. I pull with my hands until my arms shake. I draw my knees closer to my chest, crunch my upper body forward, push with one arm, try to twist and roll out of the chair. Get out of here. It’s too hard. It’s no good. My stomach muscles aren’t strong enough. I fall back.

“Help!” I shout. “Please help me!” My voice cracks and squeaks. “Something’s wrong. I don’t know what’s wrong. Help!” But no one comes. No one comes.

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©2016 Susan Macaulay / MyAlzheimersStory.com

https://myalzheimersstory.com/2018/01/23/hidden-restraints-hidden-abuse/

https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

get up, get up, get out of bed

My Alzheimer's Story

34555384 - vintage background with retro alarm clock on table. black and white

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes, which are fictionalized versions of real events, are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “rise and shine.” The rest of the vignettes are here.

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rise and shine

“Annie. Wake up Annie. It’s time to get up,” a voice says.

I ignore the voice.  I keep my eyes shut. Go away whoever you are. Go away. I don’t want to get up. I’m comfortable here. It’s warm and soft and dark. I feel sleepy; not awake.

“Annie? Wake up dear. It’s time to get up,” the voice says.

Keep your eyes closed. Don’t move. Maybe the voice will go away. I hear a swishing sound and a clatter. The darkness is a little less dark. Light is coming from somewhere.

“Annie. Wake up.” A hand on my arm, shaking me gently.

“Mmmmmmm,” I hum. I try to open my eyes. I can’t. They’re stuck. Goopy. Oh! I’m cold! Someone has taken the blanket off. Brrrrrrrrr.

“Annie, I’m going to help you out of bed,” says the voice.

“No.” I say “I’m asleep. I don’t want to get up.” My eyes open a little. Everything’s blurry. I shut them again.

“Your eyes are open and you’re not asleep. Come on now. It’s time to get up. That’s a good girl.”

Whatever I’m lying on starts to move. It pushes against my back and my head. I start to sit up. I don’t want to sit up. I don’t want to sit up. An arm reaches under my knees, and bends my legs. Another arm goes around my shoulders; it lifts and turns my upper body. I’m sitting up. I feel heavy. I lean to one side. A hand pushes on the leaning side. I can’t see clearly. I hear a whirring sound. The bench I’m sitting on starts to move. I’m sinking. My feet touch the ground.

“There we go my love. Now let’s walk to the bathroom.” Hands take mine and pull me to my feet. My legs shake. This is scary. I feel my heart beat.

“No. No. I’m asleep,” I say. “I can’t walk.”

“Yes you can. Come on. Let’s go.” The hands drag me forward. My feet scrape the ground. My legs are like noodles, heavy as elephants. I can’t control them. I’m going to fall.

“No,” I say. “Stop pulling me. I’m going to fall.”

“No, you won’t. I’ve got you. You’re doing fine. You’re doing great. It’s a beautiful day. And your breakfast is waiting, pancakes with maple syrup,” the voice says.

I can’t make my legs move. What’s wrong with my legs? The hands keep pulling mine. The voice keeps talking. Everything is foggy. Is that a person attached to the hands that are holding mine and pulling me? What’s going on? The light is very bright now. I’m in a little white room. Everything is white. There’s a hole.

“Grab the bar,” the voice says. “Grab the bar hun.” My arm reaches out automatically. My fingers close around a smooth pipe. “That’s it. That’s it. Hold on to the bar. I’m going to change your panties.” I feel my dress sliding up my legs. Someone is taking off my dress! Cold fingers at my waist.

“No!” I say as loud as I can, just like Mummy told me to. Mummy said those parts are private. No one should ever touch you there. I let go of the bar, and try to push the hand away. I lose my balance and fall sideways. My hip hits something hard. It hurts.

“Ouch!” I cry.

“Grab the bar Annie! Grab the bar!”

Bing. Bing. Bing. Bing. A bell starts ringing, and everything goes black.

©2016 Susan Macaulay / MyAlzheimersStory.com

https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/

https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

https://myalzheimersstory.com/2016/05/22/stop-in-the-name-of-love/

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS, Toward better care

how things get unbearably crazy

My Alzheimer's Story

Unbearably crazy painterly

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “unbearably crazy;” it was partially informed by this article: “Why and how normal people go mad.” There’s a link to all the vignettes at the end of the post.  

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unbearably crazy

I hold my little bear, soft and warm in my arms. He’s sleeps against my chest. It feels good to have a friend.

“There you are little fella,” I say. “There you are.”

It’s the busy time. I stand by the kitchen. People come and go. A shiny door slides open across the hall, and a lady pushes a cart out. She heads towards me.

“Hi Annie Fanny,” the cart woman says. “Are you ready for lunch? It’s French toast and maple syrup. Do you like French toast?” Do I like French toast? I’m not sure. “Maybe,” I say.

“I think you do, dear,” she says. “You like sweet things. Sweets for this sweet, right?”

“Sweets for the sweet,” I say. She pushes the cart past me into the kitchen.

One. Two. Three. Three old ladies sit at the table. They’re wearing bibs with balloons on them. Why do they have bibs on? Bibs are for babies. One of the ladies leans forward; her forehead touches the table. Maybe she’s dying. Another old lady bangs a cup. Bang, bang, bang.

“Help me! Help me!” the third one cries. She sounds afraid. I wonder what she’s afraid of? A wrinkly man sits in a chair in the corner. He looks like a statue.

“We’ll stay here in the hall little fella,” I whisper to my bear, and give him a squeeze.

“Time for lunch Annie” a voice says. “It’s time for you to sit down.” Someone puts an arm around my shoulder. I can’t see who it is.

“Oh! That’s Marjorie’s teddy bear,” the voice says; it’s a girl’s voice. “We need to put him back in Marjorie’s room.”

“No, he’s my bear,” I say. I stand still and hold him as tight as I can. They take things away from you here. I remember that. They take things away.

“No, he’s not, he’s Marjorie’s,” the girl is in front of me now. I can see her. She grabs my bear’s leg, and starts to pull.

“What are you doing? He’s not Marjorie’s. He’s mine,” I say. My voice is loud. “Let go of my bear!”

“He’s not yours, Annie. He’s Marjorie’s. Give him to me, and I’ll put him back in Marjorie’s room where he belongs.”

“He belongs to me. He belongs to me.” My face feels hot. There’s pressure in my head. The girl pulls harder. I hold my bear tighter.

“You’re hurting him,” my voice gets louder. Bang, bang, bang. Someone knocks on something. “Help me! Help me!” Someone shouts. Bing! Bing! Bing! Bing! Bing! Bing! A bell rings. Someone walks past. Someone else walks past.

“Calm down Annie. Stop screaming,” the girl yells at me; then her voice quiets. “Give me the bear, dear. That’s it my love, give me the bear.” She tries to pry the bear from my arms.

“Fuck you!” I shout. I hold him close with my left hand, and slap her arm hard with my right.

“I don’t deserve that Annie. We don’t swear and hit other people. That’s not nice,” the girl says to me like I’m two. I’m not two. I’m forty-two! I’m old enough to be your mother.

“You’re the one who’s not nice, you bitch,” I glare at her. “Let go of my bear or you’ll be sorry.”

I wish someone would get me out of this crazy place.

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©2016 Susan Macaulay / MyAlzheimersStory.com

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS, Toward better care

stop! in the name of love

My Alzheimer's Story

Stop sign across door painterly

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada.This vignette is called “places to go, people to see.” I believe we should swap the stop signs for places to go, things to do and people to see. There’s a link to a full list of all the vignettes at the end of the post.

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places to go, people to see

I’m tired of sitting in this chair at the end of the hall. I’ve got to get going. I’ve got things to do, people to see. I feel restless. I need to move. I stand up. I wait. The girls usually tell me to sit down. But there are no girls here right now. No one to tell me what to do. Good.

The hall has doors on either side. I can walk, but not as fast as I used to. I’m a little unsteady on my feet. I hold the railing so I won’t fall down. I hear clapping and shouting. It sounds like it’s coming from one of the rooms. It’s this one. The door is open. There’s no stop sign. I wonder what’s going on?

“You’ve got $500 in your hand right now,” a man’s voice says. “Do you want to hold onto the $500, or do you want whatever is in the box on the stage? It’s up to you.”

The clapping and shouting get louder. I turn into the room. I’d like to have $500, that’s a lot of money.

“I’m going to go for the box,” a woman’s voice says. I see her now, jumping up and down. She’s small and dressed funny. People are screaming and yelling, screaming and yelling. They’re all crazy. Screaming and yelling, screaming and yelling.

“Are you sure?” says the man. “You want to give up the $500 in your hand for what’s in the box?” The small woman looks over her shoulder. There must be someone behind her. Maybe it’s the people who are screaming and yelling. She looks up at the man.

“Yes! Yes! I’m going for the box!” The woman jumps up and down, up and down. There’s an old man sleeping in a big chair. How can he sleep with all this racket? It’s too noisy. I’m getting out of here. Turn around. This looks like a hall. I don’t see anyone. I wonder what’s down there? A room. The door’s open, but there’s a stop sign. I pull on the stop sign; it falls to the floor. I walk inside. It’s quiet except for a beep, beep, beep that sounds like it’s coming from somewhere else. There’s a bed. It looks like someone’s lying in it. Probably asleep. An old lady sits in a chair. She stares at me, and then she waves.

“Hello,” I say. “I’m Annie.”

“Get out,” she says. “Go away. Get out!” Why is she being so mean? I haven’t done anything wrong. I don’t understand. A voice behind me says: “Annie, this is Lizzie’s and Edna’s room. You’re not supposed to be in here.” I feel a hand on my elbow, a body next to mine. It’s one of the girls.

“Come with me Annie,” she says. “You’re not allowed in here. Let’s go back out into the hall.”

“I don’t want to go back out into to the hall,” I say.

“Yes, you do,” the girl says. “Lizzie doesn’t want you in here. Come on. Let’s go.”

She turns me around. I try not to, but I can’t help it: I start to cry.

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©2016 Susan Macaulay / MyAlzheimersStory.com

https://myalzheimersstory.com/2016/06/02/how-things-get-unbearably-crazy/

https://myalzheimersstory.com/2016/04/24/save-our-souls-and-help-us-please/

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

save our souls and help us please

My Alzheimer's Story

save our souls and help us please

This is the fourth in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia.

The first vignette is here; it provides background to this series, which also includes:

The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada.

This vignette is entitled “save our souls.”

 

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save our souls

I feel so lonely in this place full of strangers. I don’t understand how or why I’m here, or when I’ll be able to leave. I keep telling people I want to go home.

“This is your home now,” they say, or: “We’ll go this afternoon, or tomorrow, or next week,” they say. But they don’t take me. They don’t believe me when I tell them this is not my home. I miss Mummy, and my dad. I miss my sisters. Where is everybody? I feel so sad and lonely. I sit here waiting. Watching. An old lady in a wheelchair rolls down the hall. It takes her long time. A long time. She stops in front of me.

“Where’s Rosie? We gotta get dinner started,” she says.

Who’s Rosie?” I ask.

“The dark k-k-k-kimble closes the market it goes,” she says. I don’t understand. What does she mean? I think I’m losing my mind. Everything and everyone in this place is crazy. My head aches. My stomach feels sick. Why is my leg sore? Why is there a bandage on my arm? Who is taking care of my kids? I have to get home to make their lunch. I’m a busy lady. I have work to do. I have to get out of here. A young woman walks by. I reach out, grab her hand. Maybe she can take me home.

“What do you want, Annie?” she says.

“I don’t feel well. I want to go home.”

“You’re fine,” she says. “This is your home now – remember?”

“No, it’s not,” I start to cry. “Please take me home.”

“You’ll be fine. Don’t worry,” she says and walks on. I’m not fine. I’m not fine. Why won’t anyone do anything Ding. Ding. Ding. A bell rings. Ding. Ding. Ding.

“Helllppp! Helllppp!” Someone calls from somewhere. Whoever it is is in trouble. Whoever it is is afraid. Somebody should do something; but no one seems to care. No one answers. “Helllppp! Helllppp!” The person who is afraid calls again. Maybe I can help. Maybe I can do something. Maybe she’s hurt. Maybe she needs to go to the bathroom. I stand up.

“Annie, sit down,” a voice beside me says. “You’re not allowed to stand up, dear. Sit down please. Dinner is in an hour. But right now you need to sit down.”

© Susan Macaulay / MyAlzheimersStory.com 2016

https://myalzheimersstory.com/2016/04/18/please-remain-seated-for-the-rest-of-your-life/

https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

which way to the bathroom?

My Alzheimer's Story

Which way to the bathroom cropped

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “what a shame.” There’s a link to all the vignettes at the end of the post.

what a shame

I have to go to the bathroom. I’m desperate. I really need to go.

I walk down the hall looking for the ladies’ room, but I can’t find it. What a strange hotel. It doesn’t have any toilets. The doors to the rooms are open, but most of them have stop signs in front of them. I guess I’m not allowed to go in, but I’m not sure. I’m not sure. What an odd place. Here’s a room with no stop sign, there’s an old lady inside; I’ll ask her. The old lady is in a chair. The chair is tilted back. She has a blanket across her legs. When I walk in, she leans forward, and stretches her arms out to me like she wants something.

“I have to go to the bathroom,” I say. “Do you know where the toilet is?”

Ahhhhhhh ahhhhhhh ahhhhhhh,” she says. I don’t understand what she’s saying. It looks like she’s trying to get out of the chair. But she can’t. Maybe she needs help too. Maybe she can’t hear me. I walk closer.

“I have to go to the powder room. Do you know where it is?” I repeat a little louder in case she’s deaf.

Ahhhhhhh ahhhhhhh ahhhhhhh,” she says again as she takes hold of my wrist. Her fingers are bony; her grip is light. Old ladies aren’t strong. The poor thing. I wish I could help her, but I can’t. I have to find a bathroom. I feel wetness between my legs. I put my hand there, and press it into my body. I walk knock-kneed out of the room, my inner thighs rubbing together. The hall is empty.

I can’t wait. I can’t. I’m going to pee my pants. I’m going to pee my pants. Oh no. Oh dear. Quickly now. Undo the button. Pull the zipper down. Pull the pants down. Quick. The pee is already coming. Squat. Put your hands down so you don’t fall over.

Dark yellow liquid gushes from me onto the floor. Relief. A sunny puddle spreads on the white linoleum. It surrounds my shoes. Move your hands! Move your hands!

“Annie! What are you doing?” A young woman is walking down the hall toward me. “What are you doing Annie?”

My hands are wet. My cheeks are hot. I can’t stand up. “I had to go to the bathroom.”

“I see that,” the young woman says. “But why are you doing it on the floor? You have to go to the toilet when you need to pee.”

I know. I know. I couldn’t wait. I couldn’t wait. She helps me stand up; she pulls up my underwear and pants. The puddle is still spreading. I feel sick.

“My hands are wet,” I say.

“C’mon, let’s get you cleaned up. And next time, when you need to pee, go to the bathroom, okay dear?”

“Okay,” I say. “Okay.”

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©2016 Susan Macaulay / MyAlzheimersStory.com

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

please remain seated for the rest of your life

My Alzheimer's Story

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “please remain seated for the rest of your life.” There’s a link to all the vignettes at the end of the post.  

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please remain seated for the rest of your life

I’ve been sitting in this chair for hours. For days. For weeks. For months. Maybe I’ve been sitting in this chair for years; I don’t know. Why does that old lady in the wheelchair keep moaning? Is she sick? Why doesn’t someone help her? Why am I here? It’s so noisy. Beep. Beep. Beep. I want to go home. What is that beep, beep, beep? It makes me nervous, all that beeping in my ear.

I’m tired of sitting in this chair with no one to talk to and nothing to do. People walk by me to and fro. What are they so busy doing? I’m busy too. I have things to do. I have places to go. I’ve got to get out of here. I’m going to stand up. My legs are a bit rubbery, but it feels good to stand. I want to stand. It feels good. Oh dear. What’s that buzzing? And more beeping. Louder beeping. Louder and louder.

“Annie!” A voice scolds me. Suddenly, there’s a hand on my shoulder. It pushes me back into the chair. I sink and sit. My bottom makes a little thump.

“Sit down, Annie! You’re not allowed to stand up,” the voice says. I try to get up again. The hand holds me down where I am. It stays on my shoulder. A face leans into mine. Close.

“You’re not allowed to get up, my love. You’re not allowed. You might fall down and hurt yourself.”

I’m not afraid of hurting myself. I sit in this chair for hours. I cross my legs. I uncross my legs. I pick the polish off my fingernails. People walk by. To and fro. To and fro. They have somewhere to go. I want to go too. Let me go.

More

© Susan Macaulay / MyAlzheimersStory.com 2016

https://myalzheimersstory.com/2018/01/23/hidden-restraints-hidden-abuse/

https://myalzheimersstory.com/2017/12/27/dont-fence-me-in-a-true-story-about-the-impact-of-physical-restraints-on-my-mom-who-lived-with-alzheimer-disease/

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS, Toward better care

29 normal behaviours you could be sedated for

My Alzheimer's Story

dark hospital corridor cropped

The Nursing Home Behaviour Problem Scale (NHBPS) was designed by researchers in the early 1990s to measure the frequency of “bad” behaviours exhibited by people living with dementia in nursing homes; it lists twenty-nine problematic behaviours supposedly caused by dementia.

Misunderstanding picThis scale and others like it are used to rate the frequency of such behaviour, and often to justify using antipsychotic drugs to sedate people living with dementia. I was shocked the first time I read the NHBPS. Why? Because most of the items on the list describe ways any normal person would act if she or he found her or himself in similar circumstances. We blame behaviours on the disease when instead we should be asking different questions.

I have created a series of vignettes around the behaviours on the NHBPS to demonstrate what I mean. The stories in the vignettes are told in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type. Like Judy Berry’s mother Evelyn Holly (a real person), my fictional Annie has also been sedated with antipsychotics and kicked out of several nursing homes for her “problematic behaviour.”

Click here for more vignettes.

nighttime nightmare

My eyes are closed. I must be asleep. What’s that noise? I open my eyes. It’s dark. But light is shining beside me. Is it night or day?

I’m lying down. My head is on a pillow. There’s a blanket on top of me. I must be in a bed. But where? And what’s that noise? It sounds like snoring. Listen. Listen. It IS snoring. Listen. Is it me? Am I snoring? Listen. Check. Listen some more. No. It’s someone else. Someone else is in this place wherever this place is, and that someone else is snoring.

I close my eyes. Try to sleep. What’s that noise? Someone is snoring. I pull the covers off. Sit up. Swing my legs around. Feet on the floor. Stand up. The snoring is coming from across the room. There’s a bed there. I think someone’s in it. Oh dear. Why am I in a bedroom at night with someone else? Why aren’t I at home? Mummy will be worried about me.

I walk toward the bed. My legs feel a little shaky. Something pulls me back, but I keep walking. My nightgown stretches tight across my chest. Something is holding me back. What is it? I lean forward. Suddenly the soft flannelette floats loose at the front again. I lurch a little from the unexpected release, but I don’t fall.

Whatever was holding me back isn’t anymore. A bell starts to ring somewhere. Ding. Ding. Ding. The snoring sound deepens as I get closer to the bed. I reach the bedside. Someone’s in the bed. An old lady.

“Excuse me,” I say. She doesn’t budge. “Excuse me!” Louder this time. Ding. Ding. Ding. A bell rings in the background. The bell is annoying. The snoring is annoying. The old lady in the bed doesn’t seem to notice any of it. Reach down. Put my hand on her shoulder. Shake her gently.

“Excuse me. Excuse me.”

“Mmmmmmmm, mmmmmmmm,” she mumbles. Her eyes stay closed.

“You’re snoring. Stop snoring. Wake up. Wake up.” Shake her a bit harder. She rocks back and forth. Doesn’t wake up. She’s dead to the world. Ding. Ding. Ding. There’s a bell ringing. What is that bell? This place is too noisy. It’s making me nervous.

“Annie! Someone says behind me. “Annie! What are you doing?” Who’s that!? Pull my hand back quick. Straighten up. Turn around. Slow motion. A young girl walks toward me. Or at least I think it’s a young girl. Who is she? Who is she? Her face is black because of the bright light shining behind her. Her voice is sharp: “What are you doing?”

“This lady is snoring. I want her to stop,” I say.

“Edna is trying to sleep, Annie,” the girl says. “You mustn’t disturb her, dear. You have to go back to bed. I’ll help you.”

“But–“

The young girl with the black face doesn’t listen. “Come this way, dear,” she says. “It’s the middle of the night. It’s time to sleep now…”

https://myalzheimersstory.com/2018/11/13/10-reasons-people-living-with-dementia-get-up-in-the-night-and-what-often-happens-when-they-do/

https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/

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Annie & Cricket, Fiction, Joy, Life & Living, Love, Our stories

better late than never

My Alzheimer's Story

Holding hands painterly

 

“Hey Mom! There’s Stella,” Cricket said as she and Annie rounded the corner into The Home’s drawing room.

Stella sat in a big red armchair in the far corner. She looked up from the sock she was knitting.

“There you are,” Stella said smiling. “I was just about to leave because I don’t like to sit here all alone.”

“Well, you’re not alone anymore,” Cricket said. “Mom and I are here. Will you stay and chat with us for awhile?”

“Of course,” Stella’s reply was immediate. “I’ve missed you the last few days.”

Sometimes their timings didn’t match up, or one of Stella’s children took her on an outing.

Cricket rolled Annie as close as she could to Stella’s chair and stopped.

“Look Mom,” she said. “Here’s Stella.”

“Who’s Stella?” Annie stared into a space about three feet to Stella’s left and four feet behind her.

Stella, who was in her late nineties and still had all her faculties, set her knitting in her lap, reached out with her right hand and placed it gently on Annie’s knee.

“Hi Annie, it’s me Stella. I’m glad to see you. I’ve missed you.”

“Hello Stella,” Annie said. “Oh you’re a good girl.” She swivelled her head and eyes until they zeroed in on Stella, and then tapped the gnarled hand on her knee and smiled.

If Cricket had believed in God, she would have offered up a prayer of thanks. Instead, she just let gratitude flood through her for Stella, this place and the host of angels who staffed it.

Annie was recovering beautifully from a string of disasters in other facilities; after only six months in this new place she was like a different person. Cricket wished she had found The Home earlier. She would have spared her mom the suffering she’d been through the previous two years.

But better late than never.

Better late than never was her consolation.

 

This is the third instalment in a fictional series about Cricket & Annie; more here.

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