Advocacy, Real life, Toward better care

dire state of ltc in ontario and across canada is not news

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

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

During the week of April 26, 2021, two separate reports, both of them “scathing,” described the long-time sorry state of affairs in long-term care (LTC) in Ontario.

The content of the reports was widely covered by the media, which is kind of surprising. Because it’s not news. The media is meant to report news. And the appalling state of long-term care in Canada is not news. It’s just the way it is, and the way it has been for decades.

The fact that LTC in Canada sucks is not news. At least not to Canadian elder care and dementia care advocates such as myself, or to many family members and care partners of LTC residents in Ontario, or across our country. Nor is it news to advocates, family members and care partners in Australia, the United Kingdom, or the United States.

We’ve all known about the shortcomings, the abuse, the neglect, and the atrocities “revealed” in these reports for a long time. In fact, we’ve been screaming about them at the top of our lungs for years, in some cases for decades. We are not shocked by the findings. Not at all. It’s just more of the same ole same ole.

When I came back to Canada from overseas in 2011 to care for my mother who lived with dementia, I knew less than nothing about providing such care. It was a steep learning curve. When she was relocated to a LTC facility in Quebec in the fall of 2012, I thought she was going to a place where people would care for her. That professionals who knew what they were doing would oversee her care. That she would be respected, not neglected.

I was wrong. Within a week, I threw all those misconceptions out the window and began advocating like crazy for my mom. I was unsuccessful.

In 2013, I initiated legal action to try to get control of her care from the sibling to whom she had entrusted it. In 2014, the facility’s Director of Nursing and its on-contract physician both lied in the court proceeding. The judge ruled against me. I visited my mother every day for the next two and half years. I witnessed her continued neglect and abuse. I started a blog. My visits were restricted as punishment. I documented everything.

Anyone with any common sense who spends time with a family member in most LTC facilities in Canada will quickly realize the system is broken. You would have to be deaf and blind not to. The proof is legion.

In October 2016, two months after my mother died, and almost four years before the onset of the COVID-19 pandemic, I wrote a post describing the reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities.

In January 2017, I spoke before a senate committee about the abuse my mother had experienced. The committee members listened, but it seems not to have made a difference. In November 2017, Quebec’s Minister of Health announced an initiative to reduce the use of antipsychotics in LTC. Too late for my mom; she had already been dead a year.

In September 2019, I submitted a twenty-page complaint to the Order of Nurses of Quebec regarding the conduct of the Director of Nursing of the facility in which my mother resided. It included an in-depth analysis of what had transpired as well as audio, video and photographic evidence that clearly showed the abuse and neglect. A year later I received a one-page whitewash in reply. I made a follow-up complaint to the Order’s Review Committee in December 2020. I haven’t received an answer to the follow-up. I have also complained to the College of Physicians and Surgeons about the physician’s conduct. No response.

In 2020, I tweaked my 2016 post slightly and re-blogged it under the title “it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks.”

 Both of these posts outlined the same basic issues it has taken an auditor general and reams of experts months to conclude. They are:

1 ) Ageism & stigma
2 ) Lack of awareness
3 ) Poor leadership
4 ) Lack of training/understanding
5 ) Low staff-to-resident ratios
6 ) Warehouse-like environments
7 ) Dis-incentivized workers
8 ) Uncaring cultures
9 ) Ineffective “policing”
10 ) The bottom line

I mean really. C’mon.

We’re not talking rocket science here. We don’t need reports. We need ACTION.

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Real life, Toward better care

quebec order of nurses accepts ridiculous excuses for physically restraining mom living with dementia

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults have died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

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

Article 118.1 of the (Quebec) Law on Health Services and Social Services is clear with respect to physical and chemical restraints; it reads:

“Force, isolation, mechanical means or chemicals may not be used to place a person under control in an installation maintained by an institution except to prevent the person from inflicting harm upon himself or others. The use of such means must be minimal and resorted to only exceptionally, and must be appropriate having regard to the person’s physical and mental state.”

Nevertheless, my mother, who lived with dementia, was chemically and physically restrained in a long-term care facility for almost four years from November 2012 until she died in August 2016.

In September 2019, I lodged a complaint with the Quebec Order of Nurses regarding the facility’s Director of Nursing [XXX] who was responsible for my mother’s “care.” My eighteen-page complaint is comprehensive, evidence-based, and well-documented with photographs, videos and audio recordings. It includes sixty-three hyperlinks to evidence on this blog and other third-party sites. It is based on government policies and law, as well as the Quebec Order of Nurses’ Code of Ethics.

On the subject of physical restraints, my complaint says:

[XXX] allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means, all of which flew in the face of measures undertaken by the Quebec Department of Social Services to reduce the use of such restraints since 2002. See these links:

It took about eight months for my complaint to get to the top of the investigator’s pile at the Quebec Order of Nurses, and another six months for the investigation to be completed. On November 20, 2020, I received a letter from the complaint investigator. On the subject of my mother being physically restrained every day for almost four years he wrote:

“We questioned the reason a chair was placed under the footrest of your mother’s recliner. [XXX] explained that this measure was necessary to elevate your mother’s lower limbs and that the chair was broken. She also claimed that this was done with your brother’s consent as he was responsible for giving consent on your mother’s behalf. Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get

We took care to explain to [XXX] that it was indeed a form of restraint that should not be used even to compensate for a broken equipment. She clearly understood that it was not appropriate to do so and asserted that this would not occur again.”

As I read what he had written, I became more and more incensed. I was flabbergasted that he accepted such patently ridiculous excuses in the face of the mountains of evidence I had provided including dozens of images and several videos of my mother being restrained.

On December 17, 2020, I followed up with the Quebec Order of Nurses’ Review Committee about the shortcomings of the investigation. With respect to the ridiculous excuses and lies [XXX] supplied on the subject of physical restraints, I said:

“I will address these ludicrous assertions one by one.

“…this measure was necessary to elevate your mother’s lower limbs…”

Not true. No doubt [XXX] used the excuse of the thrombosis my mother experienced in late 2012/early 2013 as the reason for elevating her lower limbs. Did she mention the reason why my mother got the thrombosis in the first place? It was because they weren’t providing her enough opportunities to exercise. Regardless, the first pictures of the chair under the recliner were taken on September 10, 2014, eighteen months after the thrombosis occurred, and when swelling in my mom’s legs was not problematic. Strangely, when it was problematic, [XXX] and her staff did little to alleviate the swelling in my mom’s lower limbs. They didn’t even provide her with proper socks to help her heal.

“…and that the chair was broken.”

This is an outright lie. The chair was not broken. I was in my mother’s room virtually every day. The recliner worked perfectly well. I know because I rescued my mother from it every time I found her there. How could [XXX] possibly know if the recliner was broken or not? She didn’t go around the place testing the integrity of the furniture. As I said above, the first pictures of a chair under the footrest were taken on September 10, 2014. The second pictures (of a different chair under the footrest of the same recliner) were taken in February 2016. That means if the chair was indeed broken (which it was not), then it would have been broken for at least 17 months. If the chair was broken (which I repeat once more it was not), wouldn’t it have made sense to have it fixed or replaced?

“She also claimed that this was done with your brother’s consent…”

Come on! Is it reasonable to believe the [personal support workers] went to the nurses and asked them to phone my brother to see if it was okay for them to put a chair under the footrest of my mother’s recliner when they wanted to? At least [the investigator] had the grace to use the word “claimed,” because this is clearly also a lie. Furthermore, even it were true, is it okay to abuse someone by physically restraining them because someone gave you permission to do so? Would it be acceptable, for example, for a teacher to tie a student to a chair if the student’s parents had given her permission to do so? Of course not! Because it’s not okay to tie children to chairs, period.

“Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get up.”

My jaw literally dropped when I read this. I had to read it over several times to believe what I was reading. My mother had dementia. She didn’t know what a “call bell” was, let alone that pulling one would summon help. This is just so far out of the realm of possibility that it is incomprehensible to me that anyone who has ever dealt with people living with dementia at the stage my mother was would say something as inane as “she could have used the call bell.” This is utter nonsense. Plus, look at the pictures I provided. Do you see a call bell? No. You may be able to see a cord that is attached to my mother’s shirt with a safety pin that is attached to an alarm in the wall so an alarm rings in the unlikely event that my mother would be able to make her way to her feet (which she would not because she was trapped in the recliner). And even if she did know what a call bell was and what its purpose was and even if she were able to assess when she needed help, my mother would have had to reach behind her, over her head, behind her shoulder and way to the back in a very awkward way to pull said call bell. Or, she would have had to understand that she needed to reel in the extra “ribbon” to ring the bell. She wasn’t capable of doing any of those things at that stage of the disease, which you can hear for yourself if you listen to the audio at the link I provided in my complaint.

The fact that [XXX] said my mother could have used the call bell is incredible. Either [XXX] has very little understanding of dementia or she was desperate to use any excuse, no matter how implausible, to exonerate herself and avoid taking responsibility for the abuse my mother was subjected to. The fact that [the investigator] actually accepted what [XXX] said as the truth is equally unbelievable. It is unconscionable that people like my mother are being neglected and abused by nurses like [XXX] while your organization turns a blind eye to the ill treatment.

Furthermore, my complaint was about the ways in my mother was physically restrained every day for almost four years. The chairs being placed under the footrest comprised one example among many. Despite the evidence I provided, [the investigator] seems to have completely missed the fact that my complaint was that [XXX] “allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means.” She was trapped/restrained in other recliners (without chairs under the footrests) every day as I showed in the pictures I provided.

Such physical restraints are prohibited by Article 118.1 of the Law on Health Services and Social Services in Québec which says that such measures are not common practice, but only used exceptionally, after having assessed all other restrictive solutions. The resident’s situation must be carefully studied with due consideration for his physical and psychological state to determine the most appropriate intervention.

As of March 1, 2021, I have not received an answer to my letter to the Quebec Order of Nurses’ Review Committee. Based on my experience of elder care in Quebec and Canada, I’m not hopeful.

Still, one must #FightTheGoodFight

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

2013, Advocacy, Antipsychotic drugs, Toward better care

25 pics that prove my mom was neglected and abused in long-term care

My mom was a go-getter, she loved to be on the move. Even when she had been living with advancing Alzheimer disease for several years, she told me clearly and directly that she wanted to “keep going.” That was her way. She didn’t want to be sitting and sleeping and missing out on living.

Sadly, Mom didn’t get to live the life she wanted in the end.

When she was moved into a Dementia Jail (aka “nursing home” or “long-term care facility”) in November 2012, her “get up and go” behaviour and her feistiness were challenging for the staff. Instead of finding ways to make the most of her energy, the medical personnel in charge of her care inappropriately prescribed increasing amounts of antipsychotic drugs to chemically restrain her. The drugs caused her to become unsteady on her feet and she started to fall. Instead of reducing the drugs to prevent the falls, they physically restrained her.

If that wasn’t bad enough, her basic care and hygiene needs were often not met. When I went to visit her, which was virtually ever day for four years, the first thing I did was to take her to the bathroom, where, more frequently than not, I would find that her incontinence brief needed to be changed, so I would change it myself.

Here are twenty-five pictures I took during 2013 as I gathered evidence to prove the neglect and abuse I witnessed every day:

This slideshow requires JavaScript.

50 more pics that prove my mom was neglected and abused in long-term care

7 forms of elder abuse and how to spot the signs to stop it

#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:

Email Address

Take my short survey on behaviour here.

Advocacy, Death & Dying, Life & Living

3 things to know when you can’t be with someone you love as they are dying

Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and here I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.

According to Dr. Harlos, there are three important things people should remember if they can’t be with a loved when he or she is dying:

  1. Not being in the room at the time of death does not mean you are absent at the time of death
  2. You are connected in spirit and in soul to the people you love
  3. Connection does not require physical proximity

When a family can’t be be present at the death from Canadian Virtual Hospice on Vimeo.

 

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

understanding the suffering associated with dying

dying with my mom

 

#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:

Email Address

Take my short survey on behaviour here.

Image copyright: grinvalds / 123RF Stock Photo

Challenges & Solutions, Resources, Toward better care

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

Wanting to “go home” is a desire often expressed by people who live with Alzheimer disease and/or other types of dementia, even when they are in their own homes. Not being able to fulfill a loved one’s desire “go home” can be incredibly frustrating for care partners who would certainly take their family member living with dementia “home” if only they could.

In the early days of being a care partner to my mom, I didn’t know what to do when she said “I want to go home.” She would have her little bag packed with random stuff, and be ready to go out the door.

“But Mom, we are home,” I would say. “Look, Mom, this is your furniture, these are your carpets, those are your pictures on the wall. We are home!”

When she wasn’t convinced, the conversation would get more heated as we stood arguing in the kitchen, den, or living room of her big red brick house on the hill, until I sometimes heard myself yelling at her in exasperation “Where is home then, if it’s not here?”

I soon learned that arguing with her didn’t work. It was a waste of time and energy. It left both of us emotionally drained, and no further ahead. Eventually, I found different solutions to “I want to go home,” as well as other challenges. One solutions was to put myself in her shoes, to see her reality rather than my own.

What I discovered through self-reflection, observation and my own research is the behaviour we find challenging in people who live with dementia is behaviour we would likely exhibit ourselves in similar circumstances.

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are
  1. When you find yourself in an environment that makes you anxious or uncomfortable, what do you do?
  2. How would you feel if you were kidnapped? What would you do?
  3. If you found yourself in a place that that was too hot, too cold, or too noisy, what would you do?
  4. If were taken from your home by people you didn’t know, and put in a strange place full of crazy people, what would you do?
  5. Where do you want to go or be when you feel tired, overwrought, out of sorts, out of place, lonely, scared or overwhelmed by everything?
  6. How important is it to your well-being to feel like you belong somewhere? Where do you feel your greatest sense of belonging?
  7. How long can you stay in one place without wanting to go somewhere else? Hours? Days? Weeks? Months? Years?
  8. If someone locked you in your house and told you that you could never leave, how would you feel?
  9. As a child, did you ever fall and hurt yourself while playing outside? Where did your instinct tell you to go for safety and security?
  10. Have you ever run away from a problem, a place or a situation? When? Why?
  11. Do you ever feel like you just have to leave when things get too much for you to bear?
  12. Do you sometimes just want everything to be other than the way it is?
  13. Do you take holidays and vacations away from home? How does it feel to be away? How does it feel to be away when everything seems to go wrong?
  14. How do you feel when you return home after a holiday, vacation or long visit with friends or family?
  15. In general, where do you prefer to be most of the time: in your own home or someone else’s home?
  16. In general where do you feel most comfortable and in control: in your own home or someone else’s?
  17. What feelings does the word “home” evoke for you?
  18. Given the choice, when you feel tired or sick, would you rather be at home or somewhere else?
  19. Do you sometimes long to be somewhere other than where you are?
  20. When do you most appreciate being “at home” wherever that is or whatever it means to you?

It’s no wonder people living with dementia want to go home…

13 expert tips to help with “I want to go home.”

“wandering” is not a symptom of 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:

Email Address

Take my short survey on behaviour here.

Copyright: kalbi / 123RF Stock Photo

Advocacy, Antipsychotic drugs, Life & Living

i called it the “seroquel shuffle”

It’s February 4, 2020. Six years after the fact.

Six years — almost to the day — after the Director of “Care” at the #DementiaJail in which Mom resided stood up in court and lied about the way my mother was being treated under her supervision. Now, I’m preparing a complaint to lodge against the DoC with the Quebec Order of Nurses. Part of preparing the complaint involves going over all the videos, audios, images and notes I made to document the neglect and abuse my mother was subjected to for four years until she died on August 17, 2016.

This video shows Mom’s condition on December 1, 2013, after I had asked the charge nurse not to give my mother a morning dose of antipsychotics because she could barely walk. My request was denied. I took Mom to my house where she slept sedated in a chair for several hours before waking up and again experiencing great difficult walking. I called it the Seroquel shuffle.

No one with a modicum of common sense would have given my mother antipsychotic medication in the condition she was in before breakfast that day, which was essentially the same condition she was in when she woke up in the afternoon at my home. The debilitating effects of the drugs were shocking; they are documented in the video below.

Six years later, it still makes my blood boil.

To add insult to injury, I was branded a troublemaker for advocating on my mother’s behalf, and for the last eighteen months of her life the time I was allowed to spend with her each day was restricted.

I believe what goes around comes around. The abuse and neglect will all be fully revealed one day.

When lies are told, the truth unfolds.

against my wishes and against her will

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

40+ seroquel side effects

40 risperdal side effects

#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:

Email Address

Take my short survey on behaviour here.

Care Partnering, Resources, Toward better care

20 questions to ask when someone living with dementia “resists” or “refuses” care

I have learned through personal experience, reading and research that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. They react as any “normal” person would, but their behaviour is attributed to the disease rather than to whatever catalyst actually sparked it.

When you think about it, it’s not rocket science, or at least it’s not if you haven’t bought into the biomedical model that labels normal behaviour as aberrant because people have a diagnosis of Alzheimer or a related dementia.

I hope these questions will get you thinking about how “resisting” and “refusing” care might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad and antipsychotic drugs.

20 questions to ask when someone living with dementia “resists” or “refuses” care
  1. Is the person able to do this herself? Would she prefer to do it herself?
  2. Is the care necessary? Could it be deferred or stopped altogether?
  3. If a stranger were doing to me what I’m doing to her, how would I feel? What would I do? How would I react?
  4. Have I asked his permission to do what I’m doing?
  5. Is it the right time for this? Would another time be better?
  6. Am I the right person to be providing this kind of care to her? Would someone else be better equipped?
  7. Have I been properly trained in this kind of care?
  8. How did I approach her? What was her initial reaction? Did I change my approach based on her reaction? Am I going with her flow?
  9. Did I start with and continue to use Hand Under Hand?
  10. What was going on with him in the previous hour or two? What was he doing? Could whatever it was have caused him to feel upset or uncomfortable?
  11. Is this the right environment to be providing this kind of care? Is more privacy needed? Is it too noisy?
  12. Do I normally have a good relationship with her? Does she like me? Do I like her?
  13. Am I treating him with respect? Am I treating him like a child, or a patient rather than like a person?
  14. Am I taking steps to preserver her dignity? Am I being compassionate and understanding? Have I put myself in her shoes?
  15. If I were on the receiving this kind of care, how would I feel? What would I do? How would I react?
  16. How do I feel about providing this kind of care to him? Am I comfortable? Embarrassed? Matter of fact? Clinical? Angry? Disgusted?
  17. Might I have hurt him in any way? Physically or emotionally? Could he be in pain? Is the care process painful?
  18. Is she hot, cold, hungry or physically uncomfortable in some way?
  19. What tone of voice am I using? What kinds of words am I using? If someone were to speak to me like I’m speaking to him, how would I feel? How might I react? What would I do?
  20. Do I have enough time to provide this care properly? Am I hurried and rushed? If I am hurried and rushed, might this be causing her to feel anxious or uncomfortable?

More posts in the “20 questions”series.

20 questions to ask yourself about “wandering”

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

20 questions to ask yourself about dementia-related incontinence

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

//s3.amazonaws.com/downloads.mailchimp.com/js/mc-validate.js(function($) {window.fnames = new Array(); window.ftypes = new Array();fnames[0]=’EMAIL’;ftypes[0]=’email’;fnames[1]=’FNAME’;ftypes[1]=’text’;fnames[2]=’LNAME’;ftypes[2]=’text’;}(jQuery));var $mcj = jQuery.noConflict(true);

Take my short survey on behaviour here.

Care Partnering, Challenges & Solutions, Toward better care

10 reasons people living with dementia get up in the night, and what often happens when they do

Contrary to what many people believe, people who live with dementia behave, for the most part, in the same way the rest of us do. Their behaviour is – again, for the most partNOT the result of their dementia or whatever disease (e.g. Alzheimer) caused it. Rather, like all behaviour, it is driven by human emotions, perceptions and physical conditions, which means that the reasons people living with dementia get up in the night are the same reasons the rest of us do.

For example, they may:

1) Feel afraid

I remember being terrified during thunderstorms when I was a kid. I would cross the hall to my parents bedroom and ask if I might crawl in with them. My mother never said no; she always lifted the covers to let me in, and then cuddled close to comfort me. When Mom felt afraid and wanted to crawl into bed with me, I also never said no.

2) Be lonely

Who among has not at some point in her or his life felt alone, lonely and disconnected – especially at night, and/or when experiencing loss. When we feel lonely, it’s natural to search out others…isn’t it?

3) Need to use to the toilet

For the last forty years or so, I’ve gotten up to have a pee on average once a night, sometimes more. Luckily, because I don’t yet have dementia, no one has drugged me for doing so. But, unless things change, if and when I get Alzheiemer disease and am locked up in a Dementia Jail, I’ll be sedated for the thing that I will have done for half a century by then because it’ll be labeled as “wandering.” How do I know? Because that’s what happened to my mom. She got up in the night to use the toilet, and as a result was drugged into a catatonic state for the next four years.

4) Feel restless / not be able to sleep

I’ve suffered from insomnia since I was a teen at which time I was prescribed Valium by my family doctor. Valium. At age 15. Drug culture then; drug culture now. The Valium didn’t stop my insomnia – I still endure it two or three times a week. When I do, I just get up. One day, if and when I have dementia of some kind, I may be labeled a “wanderer.” Maybe you will be too, unless we change the broken system.

5) Not know where they are / think they are in a strange place

Have you ever woken up while staying in a hotel or at a friend’s place, and been momentarily disoriented? You ask yourself where you are because the surroundings don’t look familiar. When this happens to me, I usually remember fairly quickly that I’m travelling and not in my own home. But during the time between waking up, and becoming re-oriented I feel confused and kind of scared. I imagine this is what it must be like for someone living with dementia, except the reorientation part may take much longer (i.e. minutes, or sometimes even hours, or days). Listen to what it might sound like when this happens, and what not to do when it does!

6) Be physically uncomfortable (i.e. hungry, thirsty, hot, cold)

Do you sometimes get up in the night for a snack? Or an extra blanket because you feel cold? Or to open the window because you’re too hot? Besides trudging to the WC at least once a night, I also get up almost every night and have a glass of soy milk and a piece of chocolate – sometimes in a sleep-walking-kind-of-slumber!

7) Have a bad dream

Ever wake up with a start in a cold or hot sweat because you’ve been dreaming something dreadful? And the dream is so vivid that you are unsure if it was dream or reality? I bet the same happens to people who live with dementia. Maybe even more often than it happens to the rest of us, particularly to those living with dementia with Lewy Bodies.

8) Have heard an unusual sound or noise

One night a few years ago shortly after I moved into a new house, I heard a big crash. I was scared to death. I didn’t get up to investigate. I hid under the covers instead. But that’s me. Some people would get up to check it out. When I got up in the morning, I found that a big mirror had fallen off the wall and onto the living room floor. Miraculously it hadn’t broken.

9) Be a “night owl” or have worked the night shift

Some people work at night all their lives. For others, being a night owl is their way of being in the world. Sleep all day, stay awake all night. And then oops! We want them to fit with our schedule. No wonder they get angry and upset.

10) Think it’s daytime, not night

So this is the one that’s out of the ordinary. It’s tough to imagine how someone might think it’s the middle of the day when in it’s the middle of the night and vice versa. Nevertheless, try to conjure up what that might be like, or read this real-life nighttime conversation between Mom and I.

Most of us respond in a normal way when we find ourselves in certain sets of circumstances. Most of us wake up in the night from time to time, or even frequently. When we do, we may get up – it’s normal to do so.

But what happens when people who live with dementia get up in the night for any of these reasons above? Their behaviour is labeled aberrant, partly because once they are up, they forget the reason why they are up, and they become lost and/or confused because of their dementia.

Is this stressful for family members who are care partners? Yes, of course. Do they get frustrated and exhausted as a result? Yes, they often do. I know, because I’ve travelled that road. Is it inconvenient and challenging for care workers in institutions when residents walk around at night? Yes, it is. But the onus is on us to find compassionate solutions to address these issues, and not to blame the behaviour we find challenging or inconvenient on those who are living with dementia, and who are behaving just as the rest of us would under similar circumstances.

And all of this is yet ANOTHER reason we need to #BanBPSD.

More posts and PDFs in the “20 questions”series.

https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

//s3.amazonaws.com/downloads.mailchimp.com/js/mc-validate.js(function($) {window.fnames = new Array(); window.ftypes = new Array();fnames[0]=’EMAIL’;ftypes[0]=’email’;fnames[1]=’FNAME’;ftypes[1]=’text’;fnames[2]=’LNAME’;ftypes[2]=’text’;}(jQuery));var $mcj = jQuery.noConflict(true);

Take my short survey on behaviour here.

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

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

#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:

Email Address

//s3.amazonaws.com/downloads.mailchimp.com/js/mc-validate.js(function($) {window.fnames = new Array(); window.ftypes = new Array();fnames[0]=’EMAIL’;ftypes[0]=’email’;fnames[1]=’FNAME’;ftypes[1]=’text’;fnames[2]=’LNAME’;ftypes[2]=’text’;}(jQuery));var $mcj = jQuery.noConflict(true);