Tag: research

Advocacy, Antipsychotic drugs, NHBPS, Toward better care

10 thought-provoking links on dementia “wandering”

My Alzheimer's Story

The image above is of my mom heading back to her kitchen from her garden in summer 2010. She loved to be outside. She adored being on the go. She rarely sat still. In the early and mid “stages” of Alzheimer disease she walked for an hour every day. Then she went into a “care” facility, where she was labelled a “wanderer.” She was prescribed antipsychotic drugs to stop her from walking around, exploring her environment, and doing what came naturally to her.  The drugs seriously impacted her quality of life. It wasn’t long before she was physically restrained by being confined to a wheel chair, in addition to being chemically restrained by the drugs. This tragedy is partly why I became a dementia care advocate.

Here are ten links I hope will make you think:

1 ) “wandering” is not a symptom of dementia

2) please remain seated for the rest of your life

3) 20 questions to ask yourself about “wandering”

4 ) stop in the name of love

5 )  37 alternatives to the dementia “wanderer”

6 ) #1 reason people with dementia try to escape

7 ) 20 behavioural expressions for which antipsychotic medications are unwarranted and ineffective in people who live with dementia

8 ) walk a mile in my alzheimer shoes

9 ) 10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

10 ) death by recliner

P.S. Dear everyone who uses pejorative and damaging labels to describe the behaviour of people who live with dementia, PLEASE STOP. Thank you.

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Challenges & Solutions, Toward better care

dementia not the cause in majority of harmful resident-on-resident interactions

My Alzheimer's Story

 “Senior with dementia guilty in death of nursing home resident,” the headline reads.

The incidence of these kinds of tragedies seems to be on the rise, and they will continue to occur with increasing frequency if we don’t address the causes and find solutions. Unfortunately, by blaming dementia for behaviour that could be averted if the real causes of the behaviour were identified and resolved, we are “barking up the wrong tree.”

The 2016 story headlined as above goes on to describe the sequence of events that led to the deadly incident. It says that a damning critical-incident report about the episode was not shown to the jury, and that the report found the nursing home failed “through a pattern of inaction and or inappropriate and insufficient action” to protect residents.

As is the case in most such incidents, there’s a lot more going on than dementia. These kind of headlines, and the labeling used by medical professionals as well as researchers, perpetuate and reinforce the stigma and misconceptions associated with people who live with dementia. The result is we’re no closer to addressing the issues that lie behind violent resident-on-resident interactions in long-term care facilities.

Dementia behaviour consultant Eilon Caspi explains on his archival blog documenting hundreds of such cases:

“It is important to emphasize that the vast majority of harmful resident-to-resident interactions that involve people who live with dementia in long-term care homes are the result of negative and distressing factors in the social (i.e. other people) and physical environment. In most situations, unmet human needs, situational frustrations, and perceived and real threats contribute or directly cause these behavioral expressions.

These social and physical environmental factors and unmet needs intersect with the person’s cognitive disability to generate the episodes. Most elders with dementia are not inherently aggressive. Like us, they react, respond, defend, and protect themselves when they experience distress, and when they sense that their dignity, privacy, identity, and personhood are threatened.

Those who believe that most people with dementia are inherently “aggressive,” “violent,” and “abusive” are mistaken. These common misconceptions run the risk of further labeling and stigmatizing this already stigmatized vulnerable and frail population.

It is easy to forget that people living with dementia have a profound brain disease because their cognitive impairments may not be immediately and physically obvious. In most situations, when people with dementia engage in these episodes, they are actually fighting with each other to preserve their dignity. They “Fight for their Dignity.” The definition of dignity is the quality or state of being worthy, honored, and esteemed.

The widely-held misconception that most people with dementia engage in aggressive and dangerous behavior towards other residents reflects a “blame the victim approach.” This approach, in turn, often leads to a slippery slope in which psychotropic medications are used inappropriately and excessively. These medications are largely ineffective for most individuals with dementia, and frequently cause a series of side effects some of which are dangerous and can be deadly (some have a Black Box warning by the U.S. FDA).

Once the person with dementia is sedated, it becomes harder to identify the unmet human needs that caused the behavioral expressions to begin with, and there is little hope of then arriving at a humane, practical, and life-affirming solution for the person. Instead, other serious problems such as physical discomfort, disorientation, heightened anxiety, and falls ensue.”

All of that said, there must surely be cases in which the character of the person plays a significant role and may predispose her or him to aggressive and/or violent behaviour. Someone who has been difficult and aggressive their entire life may remain difficult and aggressive or get even more so when he or she lives with dementia. But again, this is not, in my opinion, a result of dementia; rather is is a function of the individual’s personality. Furthermore, assaults and other crimes are committed in our communities at large; it’s naive to expect that long-term care facilities will be crime free. The key is to do all we can to prevent crime and violence from occurring anywhere and everywhere, including in long-term care facilities.

Thanks to Eilon Caspi for the good work he does in this important area of dementia care. Read more about him below and get access to his 90-minute pay-to-play training seminar “Fighting for Dignity: Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes.”

Eilon Caspi is a Gerontologist and Dementia Behavior Specialist. He has worked his entire adult life in the aging field. He started his career as a nurse’s aide in 1994 in a nursing home where his grandfather resided. Both of his grandmothers had dementia in the final years of their lives.

During the last 15 years, Caspi has worked with, or on behalf of, people living with dementia and their family care partners, as well with care staff and other professionals who provide support and care to these individuals in the community and in long-term care facilities (such as nursing homes and assisted living residences). He can be reached here.

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Advocacy, Antipsychotic drugs, Information, NHBPS, Toward better care

4-minute survey results debunk decades-long notion that BPSDs are symptoms of dementia

My Alzheimer's Story

Norse mythology contends that thunder and lightening are produced by the bearded god Thor as he strikes an anvil with a hammer while riding a chariot through the clouds.

Likewise, people used to believe the earth was flat, and that the sun revolved around it rather than vice versa. Also, at various times in history, it was thought that bloodletting was curative, smoking tobacco was beneficial, radioactive drinks were good for you, and ingesting heroin, cocaine, and mercury improved your health and well-being.

We continue to be mistaken about scores of things. For example, many still believe the responsive behaviour of people who live with dementia is caused by their dementia, when, for the most part, that equation just doesn’t add up.

The roots of this erroneous belief lie in the work of researcher Dr. Jiska Cohen-Mansfield, who, in the mid-1980s developed a 29-item scale to measure agitation in nursing home residents. The Cohen-Mansfield Agitation Inventory (CMAI) spawned others such as the Nursing Home Behaviour Problem Scale (NHBPS), which also comprises 29 items. In the late 1990s, through no fault of Dr. Cohen-Mansfield’s, the types of behaviour tracked by research tools such as the CMAI and other similar scales came to be known as the “Behavioural and Psychological Systems of Dementia (BPSDs).” More on that came to be in a future post.

When I first saw the BPSDs listed on the NHBPS, which is virtually identical to the CMAI, I was shocked. As far as I was concerned, all one had to do is read down the list to see that any “normal” person would behave in the same way under circumstances such as the ones my own mother found herself in while in long-term care. I set out to prove my point in late 2016.

I built “A Short Survey on Behaviour” that mirrors the NHBPS. My objective was to demonstrate that the types of behaviour called BPSDs are not symptoms of dementia at all. If anything, this kind of behaviour is a “symptom” of being human, and when exhibited by people who live with dementia is a result of the way we treat them and/or of the environments in which they are often confined.

I invited participation online using SurveyMonkey. Between December 16, 2016, and May 17, 2017, a total of 1,172 people responded.

Here are the results for five of the 29 questions (the rest may be seen in the slide show below):

Behaviour listed on NHBPS

 “A Short Survey on Behaviour”mirror question

“Yes” 

1

 Resists care If a stranger tried to take your clothes off, would you resist?

98%

8

 Hits, slaps, kicks, bites, or pushes If you were physically threatened, might you hit, slap, kick, bite, or push someone to defend yourself?

91%

9

 Fidgets, is unable to sit still, restless If you had to sit for long periods of time with nothing to do, might you become restless, want to get up or start to fidget?

95%

25

 Paces: walks or moves in wheelchair aimlessly back and forth If you were bored, might you try to find something to do?

98%

26

 Tries to escape physical restraints If you were physically restrained against your will would you try to get free?

98%

 

I also created a series of vignettes (still in progress) each of which corresponds to a “problem” behaviour on the NHBPS, and explains through the eyes of Alzheimer Annie the real causes of the behaviour.

The results of “A Short Survey on Behaviour” show that the types of behaviour on the CMAI and NHBPS (i.e. BPSDs as they are now known), are NOT symptoms of dementia. Rather, they are normal human responses to certain sets of circumstances, the environment, physical factors and unmet needs. This assertion is supported in recent research by Dr. Jiska Cohen-Mansfield herself, and discussed at length in Dementia Beyond Drugs and Dementia Beyond Disease, two excellent books by Dr. Allen Power, MD. It also forms the foundation of the work of dementia care pioneers such as Andy Tysoe, Dr. Bill Thomas, Dr. David Sheard, Dr. Eilon Caspi, Dr. Helen Kales, Judy Berry, Professor June Andrews, Kate Swaffer, Leah Bisiani, Naomi Feil, Professor Philippe Voyer, Dr. Shibley Rahman, and the amazing Teepa Snow.

I believe we must stop using the term “BPSD,” just as we must stop using “wandering” to label as “aberrant” behaviour in people who live with dementia that in others is viewed as normal. BPSD is an inaccurate, pejorative descriptor that:

  • contributes to the stigma associated with dementia
  • results in people who live with dementia being sedated with largely ineffective antipsychotic drugs that have a multitude of debilitating side effects and that increases the risk of death
  • stops us from discovering and addressing the root causes and unmet needs that lie behind the behaviour of individuals living with dementia

As I said above, I’m not the first one to come to this conclusion. After reading a draft of this post, Dr. Eilon Caspi referred me to several papers by Dr. Cohen-Mansfield and a blog post by Dr. Power.

Dr. Cohen-Mansfield wrote in a 2001 research paper: “A significant proportion of nursing home residents who present inappropriate behaviors suffer from sensory deprivation, boredom, and loneliness,” and in 2005: “A substantial proportion of behaviors in dementia arise when care does not appropriately address the underlying causes.”

Dr. Power’s brilliant 2015 blog post entitled “Medicalization of Feelings: BPSD or BPSOD?” lays out the same argument in much more detail:

“Blaming upset on brain changes is a barrier to our critical thinking skills; it blinds us to the physical, operational, and relational attributes of the environment and the effects they may have, and is a slippery slope to antipsychotic drug use.”

Interestingly, Dr. Power also describes in his post the angry pushback he got from some colleagues who could not see beyond their own entrenched and erroneous beliefs regarding BPSDs. I experienced the same in my four-year long fight to have my mother taken off the inappropriately prescribed antipsychotics that significantly reduced her quality of life. Advocates have a difficult row to hoe.

It’s important to mention that dementia may “enable” and “amplify” actions and words that care partners and others find challenging or problematic. Dr. Caspi puts it this way: “Unmet human needs and frustrations intersect with the person’s cognitive disabilities to generate these behavioral expressions / responsive behaviors.”

However, it’s equally important to emphasize that while dementia may enable, amplify or increase the frequency of such behaviour, it is not the root cause of the behaviour, a fact clearly demonstrated by my survey results. 

How we label things has a massive impact on our beliefs and perceptions. I therefore propose that we immediately cease using the acronym BPSD, and instead name the behaviour for what it actually is: Behavioural and Psychological Symptoms of Being Human, which, when Repeatedly Exhibited by a Person Living with Dementia, Likely Indicate Unmet Physical, Emotional and/or Psychosocial Needs and/or that S/He Feels Threatened and/or Afraid.

Enough with mythology, mistaken beliefs, misleading acronyms, and miscalculations–It’s time to frame things in a way that leads us to the right answers and humane solutions.

P.S. I’m open to alternatives for BPSBHREPLDLIUPEPNSHFTA.

A Short Survey on Behaviour respondent demographics

  • Of the 1,172 survey respondents, only 2% answered “yes” to the question “As far as you are aware, do you have any form of dementia? (e.g. Alzheimer disease);” 93% reported they did not have dementia; 5% said they didn’t know
  • Respondents reported being from various countries around the world with the majority from the USA (39%), the UK (28%), Canada (25%) and Australia (6%).
  • Most were female (89%), and 84% were over the age of 40.
  • A little over 39% said they were or had been unpaid care partners, while 31% said they were or had been paid care workers.

Survey results

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Advocacy, Challenges & Solutions, Toward better care, Videos

the two biggest challenges to creating positive change in dementia care

My Alzheimer's Story

Do care workers set out to neglect and abuse elderly people who live with dementia? Of course not.  Or  at least the vast majority don’t. Nevertheless, neglect and abuse are widespread in long-term care, and care workers (under poor management and myopic leadership) are the ones who inadvertently perpetuate it.

Why do neglect and abuse remain the rule rather than the exception in long-term care? I’ve written several posts about some of the factors.

On May 1, I had the opportunity to speak via zoom with a group of nursing students in Missouri on a variety of topics related to dementia care. I shared my thoughts on what I believe needs changing if we want to radically improve eldercare, particularly for the elderly who live with dementia.

Essentially, the two biggest challenges, which are also opportunities, are:

1) the biomedical model/mindset

2) a broken system

More at the links and in this five-minute video clip extracted from my convo with the students and their passionate instructor and registered nurse Ernema (Bing) Boettner:

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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

“wandering” is not a symptom of dementia

My Alzheimer's Story

“Mom won’t sit in that room, she won’t stay there,” I said to the Director of Nursing (DON) in the autumn of 2012 when she showed me the room the person in control of my mother’s care had chosen for my mother.

“Oh, she’s a wanderer,” the DON smiled at me over her shoulder. “We know how to handle them.”

A wanderer? I didn’t know what that meant. I knew Mom loved to be on the move, that she rarely sat still, that she had been like that her entire life: a go-getter, a force to be reckoned with, the life of the party; she had boundless energy. I found the DON’s word curious. Had I known then what I know now, there would have been a fireworks’ of red flags. But I didn’t. I trusted the DON, who claimed to be an expert. What a mistake placing my trust in her would prove to be.

I didn’t understand what she meant by “handling them” either. I didn’t know that being labeled “a wanderer” would lead to my mom being sedated with antipsychotics to the point where she could no longer stand, let alone walk. I didn’t know how the behaviour of people with dementia is misinterpreted and misrepresented, and that as a result many are medicated into compliance for the sake of convenience and cost reduction. I never dreamed my mother would be physically and chemically restrained, both of which are forms of abuse.

I didn’t know then. But I know now. And every time I see the words “wanderer,” or “wandering,” “elopement,” or “exit-seeking behaviour” I want to scream: “Don’t you see? People who live with dementia are just like you and me. They want to be free, not chained. They want to live with purpose, not pity. They want to participate in life, not be sidelined!”

Sometimes my anger and frustration get the best of me. Today is one of those days. I wish people would ask more questions and come up with better answers.

P.S. Dear everyone who uses pejorative and damaging labels to describe the behaviour of people who live with dementia, PLEASE STOP. Thank you.

https://myalzheimersstory.com/2016/05/24/20-questions-to-ask-yourself-about-wandering/

https://myalzheimersstory.com/2017/07/17/10-thought-provoking-links-on-dementia-wandering/


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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.  

Teepa thin banner

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.”

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©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.  

Teepa thin banner

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, Life & Living, Spirituality, Toward better care

rethinking the pathological myth of normal

My Alzheimer's Story

41846058 - crazy expressive trendy dj girl in bright clothes, headphones and bright dreadlocks. disco, party. bright fashion.

I’ve never done well in the boxes society and others wish to confine me. I like to colour outside the lines. I hate rules and policies. I’m a true Aquarian: independent, unconventional and thirsty for knowledge and discovery. That may be why I have found it relatively easy to understand and accept the behavioural expressions of people who live with dementia as “normal,” and to embrace the work of innovative thinkers such as Dr. Gabor Maté.

In Maté’s view, normalcy is a continuum on which we all exhibit traits and behaviour that have traditionally been labeled as “normal” and “abnormal.” Behaviour, he says is “contextual and cultural. Disease is not an isolated phenomenon of the individual, it’s a culturally constructed paradigm.”

I would suggest that part of the stigma associated with Alzheimer’s disease and other dementias arises from the limited ways in which arbitrarily define what “normal” is. Expanding our universe to create space for behaviour to which we may not be accustomed, but which is not inherently better or worse than what culture specifies, will, I think, result in a more inclusive, rich and diverse world.

I also love Maté’s take on the impact our materialistic society has on the way we value, or more to the point, devalue the elderly and other who don’t feed into the production/consumption frenzy on which western society has increasingly come to manifest.

“What we value is not who people are, but what they produce or what they consume,” Maté says. “And the people who neither consume nor produce are ostracized, shunted aside and totally devalued. Hence the rejection of old people, because they no longer produce and they’re not rich enough to consume a lot either. So the very nature of this materialistic society dictates or generates and promotes the separation that from ourselves.”

I suggest it also separates us from each other. Food for thought.

https://myalzheimersstory.com/2017/11/25/101-potential-causes-of-behaviours-by-people-living-with-dementia-that-institutional-care-staff-may-find-challenging/

https://myalzheimersstory.com/2017/06/01/4-minute-survey-results-debunk-decades-long-notion-that-bpsds-are-symptoms-of-dementia/

https://myalzheimersstory.com/2017/06/20/the-demented-system/

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

get up, get up, get out of bed

My Alzheimer's Story

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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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