Tag: bathing

Advocacy, Antipsychotic drugs, Toward better care

like one flew over the cuckoo’s nest

My Alzheimer's Story

I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.

I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.

But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour).
Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.

Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.

Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.

On April 12, 2013, for example, Betsy wrote:

Then a week later:

Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?

I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.

Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:

This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.

We don’t lobotomize people anymore–for good reason. As one writer puts it:

“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”

Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.

#BanBPSD

*not her real name

7 reasons i post “ugly” pictures of my amazing mom on social media

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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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

Image copyright: vicnt / 123RF Stock Photo

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, 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…

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©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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Care Partnering, Life & Living, Love, Memories

shower time revisited (part 3 of 3)

My Alzheimer's Story

This is the final instalment in a three-part series. Parts one and two are here and here respectively.

I turn off the water when we go into the bathroom. I ask Mom if she’d like to take off her watch before stepping into the shower. I remind her to take her nightgown off too.

She says she prefers to turn the water on herself once she’s in. She doesn’t want to wash her hair she says; she’s afraid of getting soap in her eyes. It’s okay I say, I’ll help you make sure you don’t.

I bought special non-sting shampoo the other day should things go awry, but I don’t mention it. Better she thinks she’s using her regular shampoo.

She turns the water on. Be careful Mom I say, make sure it’s not too hot. I know how to turn the water on she says. I know you do I say. And then she says: oh the water’s too hot! Turn it down a bit Mom I say and she says okay but she’s not quite sure how to do it after 30 years of showering in the same shower and so I reach in and twist the knob for her and my arm gets soaked and water sprays all over the floor but even if the bathroom floor were flooded a foot deep it would scarcely be a drop in this colossal Alzheimer’s bucket and who worries about a drop in the bucket? Not me right now.

I guide her through soaping and rinsing her body and then it’s time to wash her hair, which is the worst part for her.

Pick up the shampoo Mom I say and she says where is it? On the floor on your right I say. She pauses to think about where her right is and then starts to reach down to her left and I say the other right Mom, the other side. I have to yell a bit so she can hear me over the sound of the shower and through the foggy glass doors that separate us but I try to yell softly in a calm and soothing tone so it doesn’t sound like I’m telling her what to do because she doesn’t know how to do it herself anymore which clearly I am because clearly she doesn’t.

But we pretend otherwise. We pretend we’re not inside out and upside down. We pretend it’s normal that I should be standing here fully clothed while she’s naked in her shower in her bathroom with the pink floor and that I should be telling her how to have a shower because it’s something we’ve done together for decades like making jam, or picking green beans in her garden or walking down to the lake.

We pretend this demented world is normal. I pretend to preserve her dignity. She pretends for the sake of her pride. We both pretend so the other won’t be embarrassed. But somewhere inside we feel embarrassed anyway. We bury it.

Somehow healing sniffs out that bone of embarrassment, digs it up and worries it until the awkward intimacy becomes strangely natural and familiar. It’s a small miracle. We’re lucky. We accept our unwanted reality and protect each other in the process.

She gropes around and finally finds the shampoo and I tell her to flip the cap open and put a bit of shampoo in her hand and then to put it on her head and then to put the shampoo container down and she does and she’s scrunching her eyes shut so tight it must hurt because she’s terrified of soap getting in them and I say okay mom you can rinse now, back up a bit and put your head under the shower and she does and then I say turn around Mom and put your face under the water and she turns around in a slow motion pirouette with her hands over face because “I don’t want to get soap in my eyes” she says and I say I know Mom and it might be easier if I just got in there with her but it’s important that she does it herself because she wants to and she still can and it’s about confidence, competence, and the illusion of control.

She may be helpless, vulnerable and childlike, but she is also a grown woman with thoughts and feelings. She is my mother.

“You can turn the water off now Mom.”

“Okay,” she says and she does.

She slides open the shower doors and stands there not quite sure what to do next. I hand her the towel I had put on the heater so it would be warm when she got out.

“Oh!” she says, “that feels good.” She’s talking about the whole experience: the shower that’s now over, the warmth of the towel and the fact that she’s fresh and clean.

“I’m glad Mom.” Inner peace seeps through the cracks in my heart like a rising tide. Pockets of despair get filled with something else. I smile. She doesn’t see. She’s too busy drying off and thinking about what’s next.

“I need to brush my hair.”

“Your brush is there Mom.” I point in front of her, beside the sink. She picks up the brush, runs it through her hair hard and fast. Then she “plumps” the sides with her fingers; she’s always done that. She has a particular way of looking at her reflection, with her chin pulled slightly in and her eyes gazing upward. She’s still beautiful and youthful, even at 84.

“Powder?” I ask.

“Oh yeah.” She had forgotten. Johnson’s Baby Powder. Large size. She puts a little on each breast. Also large size.

“You like to put deodorant on too Mom. You do it like this.” I stand beside her in front of the mirror; she watches as I lift up my left arm and motion up and down with the stick of deodorant in my right. Dove unscented. White and blue plastic package. I hand it to her. She copycats. I pour a little Oil of Olay into the palm of her hand.

“Rub your hands together Mom, then put the cream on your face.”

“Okay.” She applies the cream none too gently. “That’s that done!” she says.

And with that done, it’s time to help her get dressed.

 

This is the final instalment in a three-part series. Parts one and two are here and here respectively.

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