Tag: Annie

Advocacy, Antipsychotic drugs, NHBPS

how much is lost in translation?

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, 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 “lost in translation.” The rest of the vignettes are here.

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lost in translation

“I’m thirsty,” I say to the young man. “I’d like a cup of tea please.”

“What’s that Annie?” He replies. He puts a plate in front of me. It has three different colours of mashed potatoes on it: one white, one dark brown, and one green.

“I said ‘I’m thirsty, and I’d like a cup of tea please,’” I repeat.

“I can’t make head nor tail of your gobbledygook Annie,” the young man says. Now he’s putting a plate in front of the old lady beside me. Her plate also has white, brown and green mashed potatoes on it. “What does: ‘no water dry, the teabag late came,’ mean Annie?” he says.

What’s he talking about? It doesn’t make sense. His words are all jumbled up and out of order. The people in this place are very strange, it’s like they’re from another planet.

“I want some tea please,” I say again.

“Sorry Annie, I just can’t understand what you want,” the young man says.

Better to keep quiet. I try to sit still, but I feel restless. And I know what happens when I move around or complain – I get it trouble. I don’t want to get in trouble. I feel sad. I feel mad. I wish I could get out of here. I want to go home to my mom. She’ll take care of me. I hope someone will bring me a cup of tea.

“Hi Mom.” It’s the silver-haired girl. I don’t know where she came from, but I’m glad to see her.

“Hi dear,” I say. I like the silver-haired girl.

“I see you’re having lunch Mom. It smells like it might be chicken” she says. “And those might be peas. With mashed potatoes.”

“Chicken,” I say. “Maybe it’s chicken.” It doesn’t look like chicken.

“Are you thirsty, Mom?” The silver-haired girl says.

“Yes,” I say. I don’t tell her I’ve just told the young man, but he didn’t understand me.

“I bet you’d like something to drink eh Mom?”

“Something to drink,” I say.

“How about some tea Mom?” The silver-haired girl smiles. She has pink lipstick on.

“Te te te te te tea party?” I say. I don’t know why I stutter, but sometimes I do.

“Yeah,” the silver-haired girl smiles. Her eyes look at me. They’re blue, and crinkly at the corners. “Tea for two and two for tea.” She’s singing now.

Tea party. “That would be nice,” I say. “Tea party would be nice.”

“Okay Mom, I’ll get you some tea.” The silver-haired girl stands up.

I wish everyone were like her. She’s just like my Mummy.

©2017 Susan Macaulay / MyAlzheimersStory.com

alzheimer annie invites you in

please remain seated for the rest of your life

look who’s talking now

 

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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, Antipsychotic drugs, NHBPS, Toward better care

alzheimer annie invites you in

My Alzheimer's Story

Alzheimer Annie is a fictional character I created to help people understand what being in a long-term care facility (LTCF) might feel like. Annie is a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease; she resides in a fictional LTCF somewhere in Canada. Her experiences are based on real-life scenarios, which I either witnessed first-hand or have personal knowledge of. The vignettes in which I have placed Annie mirror the twenty-nine items on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia.

My goal in creating and sharing these vignettes is to show how behaviour that is attributed to Alzheimer’s disease and other dementias, and for which people who live with dementia are treated with antipsychotic drugs, is in most cases normal human behaviour which can be understood and addressed in safer, more effective non-pharmacological ways if we listen and pay attention to what people who live with dementia are trying to communicate.

Here are the twenty-nine “problem behaviours” on the NHBPS, each with a corresponding vignette that describes the behaviour from Alzheimer Annie’s point of view (some are “still in the works”):

I created a model to help myself and others handle these kinds of situations more effectively. It’s called “BANGS.” I share the BANGS techniques in a one-hour webinar here. It’s free. All I ask is you tell me how it works for you if you try it. Here’s what one caregiver said:

“I am a daughter/caregiver who has been with my father for two years since he had two strokes which left his right side paralyzed. He had been diagnosed with dementia before the strokes, and he also has severe aphasia as well as other issues. We both dreaded every day. In desperation a few weeks ago I discovered your site. I found your BANGS technique and it worked beautifully. Thank you.”

Besides using the BANGS model, you can take this three-minute survey to see how you might behave under similar circumstances here. Many people experience the survey as a real “eye-opener.”

Subscribe to my updates and get free downloads here.

©2016 Susan Macaulay / MyAlzheimersStory.com

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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.

More

©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.

More

©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, Antipsychotic drugs, NHBPS, Toward better care

walk a mile in my alzheimer’s shoes

My Alzheimer's Story

Walk a mile in my shoes 2

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 “mile after mile.” There’s a link to all the vignettes at the end of the post.  

 

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mile after mile

There’s a door at the end of the hall. I think it’s a door. It looks like a door. Maybe I can get out that way.

Stand up. Rubbery legs. A little unsteady. Wait. Take a step. I did it. Take another step. Everything is kind of blurry. Legs are a little shaky. Go slow. Go slow. Stay close to the wall. There’s a railing. Hold on to the railing. Don’t fall. Take another step. Take another step. Take another step. It’s a long way. Keep going.

A door. A handle. Hold the handle. Push it down. Lean against the door. It won’t open. Stuck? Try again. The door won’t open. Try again. No, it won’t open. Turn around. Keep walking. What’s down there? Keep walking. An old lady in a wheelchair. She’s asleep. Keep walking. An old lady in a wheelchair. She’s awake.

“Where are you going?” the old lady says.

“I’m going home,” I say.

“I want to go home too.”

“Okay.”

Keep trying to go home. I have to get out of here. Mummy will be worried about me. She’ll wonder where I am. I need to get home. Here’s a door. Grab the handle. Push it down. Lean forward. It doesn’t open. Turn around. There must be a way out. Keep walking. Keep walking.

Keep trying to go home.

© Susan Macaulay / MyAlzheimersStory.com 2016

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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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

waging war at alzheimer’s bath time

My Alzheimer's Story

a battle at alzheimer's bathtime

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 “rub a dub dub.” There’s a link to a full list of all the vignettes at the end of the post.

Tips on how to better manage these kind of situations may be found here:

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rub a dub dub

I’m alone in a little dining room having breakfast. Bananas and milk. Toast and tea. This is a strange hotel, and the staff isn’t very friendly. One of the maids comes in, the big one that never smiles. She has hair as black as night, and small, dark eyes. I don’t know her name, and for some reason I don’t like her. I can’t remember why.

“It’s time for your bath dear,” she says. She pulls my chair out from the table.

“I don’t want to have a bath. I’m eating my breakfast.” I say. “And anyway, I always have a shower. I have a shower every morning. I do it myself.”

“We don’t have showers here, remember?” she says. “We have a whirlpool bath. You have a bath once a week on Monday morning. It’s morning now, and it’s Monday, and it’s time for your bath, my love.”

“But I don’t want to have a bath, and I’m not your love,” I say. No wonder I don’t like her. Who the hell does she think she is? She grabs my hands and pulls me to me feet. She’s very strong.

“Come on, let’s go hun,” she says.

“Where?”

“To have your bath.” Her voice is louder this time. Why is she raising her voice? I can hear perfectly well.

“I don’t want to have a bath.” She pays no attention. What’s wrong with her? Is she deaf? She takes me down the hall, and into a small room with a huge white tub in it. The water is swirling around. It’s fast and noisy. I feel queasy.

“Here we are,” she says. “Now let’s get you undressed.”

Undressed! “I’m not taking my clothes off.” What kind of a place is this?

“You’ve got to take your clothes off dear,” she says, “so you can have your bath.” She starts to undo the belt of my robe. Why is she trying to undress me?

“No!” I slap her on the arm.

“Don’t hit me Annie,” she says. “I’m just trying to help you.” Her hand closes around my upper arm and squeezes hard.

“Ouch! You’re hurting me.”

“I’m not hurting you. I’m helping you.”

“No you’re not, you’re hurting me. Let me go. Let me go!” I kick her in the leg with all the strength I can muster.

“Stop it Annie! You’re making this harder than it needs to be.” She tightens her grip on my arm, and tugs at my robe with her free hand. I twist my head around and bite her on the wrist.

“HEY! Don’t bite me Annie! I don’t deserve that.”

“Let me go,” I scream. She holds me even tighter. “Let me go!”

“Carol,” she yells over my head and out the half-open door. “I need some help. Annie won’t take her clothes off. She just bit me.”

“Let me go!” I spit, and kick her again. Then I feel someone clutch me from behind…

More

©2016 Susan Macaulay / MyAlzheimersStory.com

https://myalzheimersstory.com/2017/04/25/15-tips-to-make-alzheimer-dementia-shower-time-successful-not-stressful/

https://myalzheimersstory.com/2017/07/31/16th-alzheimer-shower-time-tip-applies-to-just-about-everything/

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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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