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.
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.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
Why? Because even Presidents can’t escape the vagaries of aging. It’s common to have to go to bathroom more frequently, especially at night, as we grow older. We produce more urine, and we may feel the urge to relieve ourselves more often because our bladders become unstable.
At the bottom of the Mirror article, a Yes/No survey shows that 81 per cent of the more than two thousand respondents said they have regular trouble sleeping at night.
My guess is most of them, maybe even all of them, don’t have dementia.
I did my own survey, a version of theNursing Home Behaviour Problem Scale (NHBPS), in which I invited people who don’t live with dementia to say how they would respond to circumstances in which people who live with dementia might find themselves while residing in long-term care facilities.
Question 4 on the thirty-three-question survey was : “Do you sometimes wake up in the night?”
Not surprisingly, 95 per cent of the respondents answered “yes,” they do wake up in the night.
Clearly, waking up in the night is normal behaviour. Except if you live with dementia.
If you live with dementia, and you reside in a long term care facility in most places in the world, the normal behaviour of waking up in the night will more than likely be seen as a problem.
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:
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…
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
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.”
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.”
“Asks for attention or help, even though it is not needed”is #23 on the NHBPS
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
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.”
“Goes to the bathroom in inappropriate places (not incontinence)”is #11 on the NHBPS
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.
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.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
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.
This 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.”
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…”
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
It’s time to transform care for people of all ages who live with the Alzheimer’s disease and other dementias – they deserve better than what they’re getting.Family care partners need more support, education and skills to meet the challenges they face every day.
The long-term care facilities in which we warehouse old people must be re-imagined.We need people-focused environments well staffed by trained care workers who are devoted to providing the best possible end-of-life chapters to our elders.
The requisite dementia care revolution is slow in coming, but there are beacons of hope.I’m encouraged by people like Loren Shook, Co-Founder & CEO, Silverado, who is one of few change agents in the eldercare industry.
“The way (dementia) care services have historically been delivered is wrong,” he says. “People should not be slumped over and drooling in ‘feeder’ chairs. They should not be put in some corner, they should not be misunderstood, and they should not be overmedicated.
“Yes,” he continues. “There is a place for the proper use of medications. But medications should not be used to control the behaviours (of people who live with dementia) because we don’t know what else to do with them.”
Shook is right. Psychotropic drugs (including antipsychotics) are prescribed to elderly people living with dementia to sedate them into compliance. Experts worldwide agree this practice must stop.
We must take collective action to break down the barriers that stand in the way, and replace sedation with compassion, understanding and engagement. That’s what Shook and Silverado co-founder Steve Winner are trying to do in their facilities.
“When you reduce the medications people take, a lot of the side effects go away,” Winner says. “People who were apathetic, lethargic, couldn’t walk or were even bedridden suddenly awaken from the fog. They’re able to move around, strengthen their legs, and get out of their wheelchairs. The change can be dramatic.”
Addressing the use of dangerous and largely ineffective antipsychotic medications is the first step to better care. Here are 20 ways care facilities can improve their performance:
Sadly, even a strong commitment to the highest standards of care may not eliminate the horror of elder abuse or inevitable accidents.
In 2010, a former Silverado employee was sentenced to life in prison for events related to the death of a resident and the abuse of others in 2007. Tragedies like these occur because it’s virtually impossible to know what happens between residents and care workers without around-the-clock CCTV monitoring, which is something I would support for all long-term care facilities.
Well-intentioned senior executives may be unaware of what really goes on in in their establishments when watchful eyes are averted. Elderly people with dementia are extremely vulnerable and unable to report how they are treated; care is only as good as the individual care workers who provide it, and individual facilities are only as good as the on-site management teams that run them.
No system or place is one hundred percent infallible.
“We had no clue of his actions,” Loren Shook is reported to have said at the time of the former employee’s trial. “In every way he looked like the model caregiver. He had all the characteristics of a sociopath. No one can determine the problems until they see the trail left behind.”
This is indeed an issue. Abuse is usually perpetrated when there is little chance of it being observed, and colleagues who witness it by chance may be reluctant to report fellow workers for fear of reprisals.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
I began blogging on MyAlzheimersStory.com in February 2014.
Through the blog and various social media, I have connected with like-minded people around the world who are for person-centered dementia care and against the use of antipsychotic medications to “treat” people who live with dementia.
These innovative dementia care pioneers and I are creating a worldwide network to amplify our collective voice and share news, ideas and resources related to changing the way we care for people who live with dementia.
“When people think of ‘dementia,’” the article said, “it is natural to next think ‘memory loss.’ What we may not be prepared for is how other behaviours can change and even become difficult to manage. In fact, it is these difficult behaviours that families report as more troublesome than memory loss.
“Difficult behaviour” the article continued, “includes actions that are unsafe, destructive, highly upsetting or dangerous to self or others.” I get annoyed with care professionals who continue to propagate this kind of misinformation. I left a comment at the bottom of the article:
“I agree with Susan regarding the unfortunate and outdated terminology used describing some behaviour of people who live with dementia as ‘difficult’ or ‘challenging.’ We all exhibit behaviour that can be perceived as difficult. Who among us hasn’t cried in frustration? Lashed out in anger? Spoken loudly during an argument? Left a room when we’re upset?
People who live with dementia experience the same range of emotions we all do. But their situation is far more complex than ours. Can any of us really understand the reality of those who live with dementia? How hard it must be? How traumatic?
When we describe behaviour and label people as difficult or challenging, we completely miss the mark. What we should be doing is questioning why we, cognitively aware individuals who have the ability to use our imagination, compassion and empathy, continue to disregard the unmet needs of people with a brain disease as they try to cope with a constantly changing and confusing world as well as unfair expectations.
It’s our responsibility to adjust ourselves and understand that our behaviour is more often than not the cause of behavioural expressions of people living with dementia. By truly understanding the specific needs of every individual and then meeting them, ‘problematic’ behavioural expressions can be reduced and even completely prevented.
It’s up to us to enter the reality of those we care for, to go into the world they live in where, without us, they would otherwise be alone. Each of us has the right to make our feelings known, to communicate our love, happiness, anger, displeasure, frustration or whatever else we feel in the best way we can, either verbally or through behavioural expressions.
Anxiety related behaviours that are described as ‘difficult’ or ‘challenging’ are actually efforts to communicate. They frequently occur when caregivers dismiss or neglect the differing reality or unmet needs of the people they care for.
Care partners who understand cognitive restrictions and provide care that respects the preferences of persons living with dementia in ways that least exhaust their capabilities are able to minimize or avert the kinds of behavioural expressions that negatively impact both the lives of care partners and persons living with dementia.”
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
My Alzheimer's Story 