agitation – My Alzheimer's Story

Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

teepa snow shows how to help someone living with dementia to put on a jacket or sweater without resistance

October 30, 2018October 31, 2018 My Alzheimer's Story

Image credit: Teepa Snow (screen shot from the video below)

“If only I had known,” is what I say to myself every time I see a Teepa Snow demo I haven’t seen before. This one was no exception when I first stumbled across it.

I had very few problems helping my mom get dressed. But how many times did I watch care workers struggle to do the same? Too many that’s how many! When I saw Teepa demo how easy it can be in the video below, I again wondered why EVERYONE who cares in some way for someone who lives with dementia isn’t trained in Teepa’s practical, positive approaches to care.

People who live with dementia “resist” receiving care for good reason: because, more often than not, we don’t know how to do things in ways that make them feel at ease.

Just watch the five-minute video below on how to help someone living with dementia put on a jacket or sweater in such a way that both care partners can feel good about what’s going on, and see if you don’t agree. I guarantee you will discover something you didn’t know or hadn’t thought of before.

Learn a few dead-easy techniques (including Teepa’s trademarked Hand Under Hand) that may help transform your life from misery to magic:

More here:

10+ Teepa Snow videos on dementia basics

Teepa Snow demos Hand Under Hand™ dementia care to connect, comfort and “control”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

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Tips, tools & skills, Toward better care

15 helpful hints to prevent agitation in people living with alzheimer disease and related dementias

January 17, 2018February 17, 2020 My Alzheimer's Story

I believe in calling a spade a spade, and in giving kudos if and when they’re due. Lately, I’ve been finding a lot of solid, practical and person-centered care tips, tools, and strategies on the Alzheimer Societies’ sites in Canada and the United Kingdom, as well as the Alzheimer’s Association site in the USA, which is where I sourced the list below. The fact that these organisations are upping their games with good information is a great thing because these organisations and their sites are often the first places new care partners go to find information.

Here’s the list of 15 ways to help prevent agitation:

A) Create a calm environment

1 ) remove stressors, triggers or danger
2 ) move person to a safer or quieter place
3 ) change expectations
4 ) offer security object, rest or privacy
5 ) limit caffeine use
6 ) provide opportunity for exercise
7 ) develop soothing rituals
8 ) use gentle reminders

B) Avoid environmental triggers

9 ) reduce noise
10 ) lower glare
11 ) make “insecure” spaces secure
12 ) get rid of background distractions (TV, loud radio, too much talking)

c) Monitor personal comfort

13 ) check for pain, hunger, thirst, constipation, full bladder, fatigue, infections, and skin irritation
14 ) ensure a comfortable temperature
15 ) be sensitive to fears, misperceived threats, and frustration with expressing what is wanted

I’ve also put together a lengthier and more detailed list of potential sources of discomfort that many find helpful, as well as a list of 20 questions to help prevent aggression, and free 50-minute webinar with tips based on my own experience.

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Image Copyright: aletia / 123RF Stock Photo

Activities, Advocacy, Inspiration, Toward better care, Videos

how many more steps could you take if you couldn’t take any more?

November 17, 2017November 18, 2017 My Alzheimer's Story

This post is dedicated to the late Dr. Richard Taylor, advocate Kate Swaffer, and care warrior Leah Bisiani.

~~~~~~~~~~~~~~~

“I think I could take a few steps,” Mom said, “even if there’s not too many.”

It was her birthday. September 27, 2015. She’d been “behind bars” for almost three years, during which she had been inappropriately medicated, and forced to remain seated for “her own safety.” She spent most of the daylight hours chemically restrained (with antipsychotics), and physically restrained (in a recliner or a wheelchair), despite the fact sitting still was completely contrary to her nature. She could hardly stand anymore — her gait had become unmanageably unsteady due to the meds, and from sitting most of the time.

Exercise is essential for well being. Everyone knows that. Everyone. So, even though the distances became ever shorter, I helped her to walk each day. Or at least to try to walk. When I missed a day or two for whatever reason (which was rare), it was always more challenging at the next visit. Her legs would be shakier, she wouldn’t be as strong.

But she never gave up. Neither will I.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.

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Challenges & Solutions, Toward better care, Videos

how my mom’s affection got mislabelled “aggression”

October 9, 2017May 19, 2018 My Alzheimer's Story

My mom had an unflaggingly positive attitude, as you will hear in the video at the end of this post. It features an audio clip I recorded on Mom’s 87th birthday in 2015; the last one we would have together. When I suggested to Mom that she needed a new sweater because the one she had on was moth eaten, she responded “It’s getting better.”

Everything was always “getting better” as far as Mom was concerned.

She was also outgoing, friendly, interested, engaging, and invariably the life of the party. She adored people, and was highly socially adept. So how did she come to be labelled “violent” and “aggressive” after she moved into a long-term care facility? There was a cluster of reasons, none of which were here fault, nor the fault of dementia. Ironically, one of the reasons was love.

Mom had a habit of giving people what she called “love taps,” light, rapid-fire pats on the hand, arm, cheek, bottom, or whatever recipient body part happened to be in close enough for her to reach. She had done this, as a sign of affection, for as long as I can remember. As her Alzheimer evolved, and her ability to verbally articulate her emotions declined, “love taps” and clapping often replaced words. She used them to express delight, happiness, frustration, and displeasure.

Unfortunately, her love taps and clapping were sometimes not well received, particularly (and understandably), by other residents who lived with dementia, and who didn’t “get” what these “slaps” were about.

But the staff should have known better. Sadly, instead of looking at the meaning of the behaviour, they labeled it “violent” and “aggressive,” and, as a result, Mom was medicated with dangerous and debilitating antipsychotic drugs.

I think that’s abuse. What do you think?

20 questions that help explain why people with dementia get agitated and physically aggressive

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Take my short survey on behaviour here.

Image copyright: lonely11 / 123RF Stock Photo

Advocacy, Toward better care

loud sounds and dementia mostly don’t mix

October 2, 2017October 3, 2017 My Alzheimer's Story

“I would not want my mother sitting in a room with loud music and TVs blaring,” my writer friend Lorrie B. said in a zoom conversation on what would have been my mother’s 89^th birthday.

I didn’t want that either. But that’s how I found my mom almost every afternoon for the last eighteen months of her life. Most often, she was oblivious to the noise because she had been sedated into a catatonic state.

I had become a thorn in everyone’s side by advocating for better care and less medication, and my visiting “privileges” were meant to be confined to between one and three in the afternoon when Mom was usually “asleep.” But I stretched the rules and arrived more towards 2 p.m. so I had a better chance of having some “awake time” between 3 p.m. and 4 p.m. On her 87^th birthday, I made an audio recording of the visit for posterity.

A little over a year after Mom died, I invited Lorrie to listen to the recording with me, and to tell me her thoughts with a view to sharing them and our conversation with as many people as possible.

“I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care,'” I told her. “And you’re the perfect one to help me do it.”

At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!).

I plan on releasing more of our conversation in the coming days and weeks, (or maybe months at my snail’s pace), but for now, let’s start where Lorrie and I started – at the beginning of the visit.

Part of this clip is also in my birthday post honouring my mom here, during which I sang Happy Birthday to her. I invite you to read about the rest of our magical last birthday afternoon together here and here.

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Image copyright: hellbilly / 123RF Stock Photo

Care Partnering, Challenges & Solutions, Teepa Snow, Tips, tools & skills, Videos

Teepa Snow shares 10 tips to deal with hallucinations

March 12, 2016November 28, 2017 My Alzheimer's Story

Hallucination surreal scene — People who live with dementia may see “strange” things we don’t

It can be disturbing, even frightening, for both a person living with dementia (PLWD) and her or his care partner when the PLWD has hallucinations.

We are taught that hallucinations are abnormal, the hallmarks of “crazy people,” and witnessing someone having hallucinations for no apparent reason is unsettling. It’s important to first check whether the hallucinations may be caused by physical factors such as a urinary tract infection (UTI). They may also be a side effect of a wide variety of medications, a combination of medications, or over medication. Investigate these potential causes.

Also, remember that mistaking one thing for another is not “hallucinating.” For example, confusing the telephone with the TV remote is not a hallucination–it’s a misperception. If you stay calm and act normally when a PLWD has a hallucination, you can help reduce her or his anxiety (as well as your own) and keep everything on an even keel.

Imagine this for example:

Cricket and her mother Annie are alone in the kitchen of Annie’s house. They’re chopping carrots for supper. Annie is in the “amber” stage of dementia; she turns to Cricket.

“Where did the girls go?” Annie says.

“What girls Mom?”

“The two girls that were here.”

Cricket and Annie have been alone in the house for at least a week; they haven’t had any visitors during that time. “When Mom?” Cricket asks for clarification. “Two or three minutes ago!” Annie sounds annoyed. “Don’t be so stupid Cricket.”

Back in the early days, when Cricket was still a wet-behind-the-ears care partner, she would try to convince Annie that whatever other reality her mother was experiencing was not real. Cricket soon learned this approach didn’t work; it invariably ended in an argument. Cricket decided to change her behaviour. Thus:

“Oh, those girls, now I know who you mean Mom,” Cricket’s tone is calm and even.

“Well, where did they go?” Annie is still annoyed.

“I think they had an appointment. It was kind of rude of them to leave without saying goodbye wasn’t it?”

“It sure was.” Annie shakes her head.

“There’s no accounting for some people’s behaviour eh Mom?”

“No. It’s the last time I invite them here.”

“Good idea, Mom.”

In this example, Cricket defused the situation rather than fuelling it or escalating into an argument. She also turned her mother’s anger away from herself and redirected it toward the imaginary girls against whom she and her mother then became “allies.”

10 tips to deal with hallucinations

Going with the flow works wonders, but it takes awareness and practice. Here are some hands-on tips that can help:

approach the PLWD’s preferred side
verbally greet the PLWD
move into PLWD’s personal space when invited
use Hand Under Hand™
repeat/agree/validate
repeat/agree/validate
take control of the situation
allow the PLWD “off the hook”
go with the flow
repeat/agree/validate as required

Watch dementia care pioneer Teepa Snow demonstrate in this short video:

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Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

August 28, 2015April 26, 2018 My Alzheimer's Story

When people feel trapped and terrified, they get agitated, anxious, and sometimes aggressive. It’s normal behaviour for human beings to lash out when they feel threatened, whether they have dementia or not.

Unfortunately, many people who care for people living with dementia (PLWD), including family, friends, healthcare personnel and caregivers, blame this normal behaviour on the disease rather than finding and addressing the real underlying causes.

More often than not, something in the environment or in the way the person with dementia is being treated or approached prompts the aggressive behaviour, which is in fact a perfectly normal response to something the PLWD may perceive as a threat of some kind.

In the video below, dementia care pioneer Teepa Snow tells the story of de-escalating a situation in which an 89-year-old woman with dementia became violent when care facility staff and EMS personnel tried to get her onto a gurney.

I have personally gone through similar events. At the time, I had no idea what to do. I have since seen others in versions of the same scenario; it’s clear they either don’t know what to do or if they do know what to do they aren’t doing it.