don’t fence me in: a true story about the impact of physical restraints on my mom who lived with alzheimer disease

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In the world of dementia care, and problably elsewhere for that matter, a restraint is anything that restricts or controls a person’s behaviour. Restraints may be physical, chemical, and environmental; all three were inappropriately and unecessarily used on my mother in the long-term “care” facility (aka known on this blog as Dementia Jail), in which she resided during the last four years of her life.

The staff argued that restraints were necessary for my mother’s safety and the safety of others, as well as to promote her well-being and to enhance her life. All of this was patently false. The chemical, physical and environmental restraints she endured caused her emotional, psychological and physical harm, accelerated the progression of her dementia, and ultimately contributed to her death.

That’s the big picture.

The subject of this post is one small example among many that demonstrates the impact that “hidden” physical restraints had on my mom as she lived with the Alzheimer disease in its later “stages.” I have no doubt that tens of thousands of people living with dementia in LTCFs suffer the same agitation, frustration, and anxiety my mom did day after day as a result of similar kinds of restraints.

On September 10, 2014, when I arrived for an afternoon visit, I found Mom trapped in the recliner in her room. An armchair was wedged under the recliner’s footrest to keep her from being able to either sit up or stand up. Mom was agitated and confused as a result, as you will hear in the short audio clip below.

I invite you to pay particular attention to Mom’s voice and the underlying meaning of her words.

Do you hear the fear? The confusion? The worry? The stress? The helplessness? All of it completely unnecessary. In like situations this upset would have been misidentified as being dementia-related, which sometimes would have been provoked into aggression by improperly trained and/or overwhelmed care workers, which was in turn used as an excuse to further restrain my mother by sedating her with Seroquel and Risperdal, whose side effects both include increased agitation and anxiety!

It made me furious at the time. It makes me heartsick now.

Listen (and read along with the transcript at the bottom of the post if you wish):

This was by no means an isolated incident. I took a photo of the same chair-under-the-footrest strategy still being used 18 months later:

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I found Mom restrained in one way or another virtually every day I visited her during her entire four-year stint in Dementia Jail. And she wasn’t the only one. Far from it. It’s no wonder people get agitated and aggressive and try to escape! What would you do if someone tied you to a chair and left you there for hours on end? If you are like 90% of people, you would try to escape. And if you couldn’t? How might you feel? Anxious? Afraid? Upset? I’ve written a fictionalized version of this and other scenarios through the eyes of Alzheimer Annie to help people imagine living in a LTCF from the perspective of someone living with dementia.

Ironically, the day following the occasion in the audio recording I took Mom down to the Thursday morning music session, and captured her singing one of our favourite tunes:

Transcript of the audio recording:

Susan: Hi.
Mom: Well listen dear I wanted to to to to…Could you call me up like this?
Susan: Yeah, I see.
Mom: Well listen. I I I I… There’s something that’s not right with my… My my my..
Susan: Something that’s not right with your what Mom?
Mom: Well with my my my th th th it’s it’s it’s
Susan: Where Mom?
Mom: Could you lift me up a little bit? I can’t I can’t I can’t get lifted up.
Susan: Yeah, ‘cause they’ve put the chair, they’ve put the chair underneath the thing so that you can’t move.
Mom: No, well th th th they keep doing that. I don’t know what it’s for. ‘Cause I’d like to la la la linger, with my, ya know, with my – there’s something that’s bad, that’s not good.
Susan: Yes.
Mom: And so so I went to wa wash my face, and the thing wasn’t right. And could I get up? Can I get up for you? And and and and I can tell you all about it.
Susan: Yes.
Mom: Well it’s, it’s not good.
Susan: No, I can see that.
Mom: And the thing is that I need the help.
Susan: Yes.
Mom: You know, I need the help. I just can’t go on with it.
Susan: I understand Mom.
Mom: You know, so, so, so if it’s ih ih ih ih it’s definitely the the the the the song.
Susan: Yeah.
Mom: You know I can’t sing it with with…
Susan: You can’t sing the song.
Mom: No and it’s very, very…
Susan: It’s very what Mom?
Mom: Well it’s very—
Susan: How do you feel when you can’t sing the song?
Mom: Well it’s all ready, you know, it’s, it’s, it’s, it’s a bad sah song…
Susan: Yeah.
Mom: And so I don’t know what to do about it.
Susan: Okay. Well I’m gonna—
Mom: And then when I hear the the the the the the the the ohhh, it’s so songy on my song you know, and I don’t know what to do with it.
Susan: Yeah. Okay.
Mom: And uh, so I had to put it up, up against against your, against your…second song.
Susan: Okay.
Mom: And I wanted to get it fixed up. I don’t know what to do about it.
Susan: Okay. I’m going to help you, okay?
Mom: And uh it’s very sore.
Susan: It’s very sore?
Mom: Well you know it’s it’s —
Susan: Where is it sore Mom?
Mom: Well it’s sore on my—
Susan: Can you show me?
Mom: Well I’m going to sit up.
Susan: Okay, but you can’t sit up because the chair is underneath your – hang on I’m going to move the chair.
Mom: You can move the chair.
Susan: Yeah, I’m going to move the chair so that you’re going to be able to sit up. Because the chair is underneath the thing here, and it’s to prevent you from sitting up or standing up.
Mom: Uhhhh…
Susan: I’m gonna help you Mom. I’m gonna help you, Mom. Okay.
Mom: I’d like to put it inside the thing.
Susan: Okay.
Mom: But it doesn’t seem to work.
Susan: Okay, do you want to stand up? Look, we’re dressed in the same colours today Mom. I’ve got blue and pink on, and you’ve got blue and pink on. That’s nice.
Mom: Well I don’t know, I looked down at the at the at the…
Susan: Do you wanna stand up Mom?
Mom: Yeah.
Susan: Okay. I’m going to help you, okay?
Mom: Hmhmm.
Susan: On three. Actually, you know what…

And that’s when I decided to take pictures. So I would have proof. That’s what one does in the face of one lie after another after another after another. One gets proof. So the truth eventually unfolds.

hidden restraints: hidden abuse

how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do

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2 Comments

  1. dear susan

    this breaks my heart to read this. a similar thing happened to my dad.

    every month i would call to see how he was doing. most months i got different people when i called. but what they told me was always the same – word for word. i even wrote down that canned speech that i got each month.

    one month i got someone new who apparently had not been ‘trained’ yet so they were unable to answer my questions. so i just read the canned speech i got fed each month and they kept replying yes to every statement. that’s when i knew i was being lied to each month.

    one month when i called the home that mom was in and spoke to the person watching over her, she told me that in actuality my dad was being restrained in bed because he had become violent. and that she had to keep asking them to change his sheets – he was urinating everywhere. unfortunately she did not tell me this until after my mom died and a month before my father died.

    i don’t know what i could have done about the situation, though. i live two states away from where they lived. even though i had spent considerable time finding a new place for them here in this state, my mother refused to move. and she had power of attorney over my dad and control of all the finances.

    i know that i could have come back to their state and filed paperwork to become the administrator of the estate – but that would have required finances that i just didn’t have at that moment in time.

    so, sadly, my dear dad also became a victim of the system.

  2. Susan thank you for sharing this story and being a voice for so many others. Sadly the physical restraints are being replaced (well not in your Mothers case here) with chemical restraints. We are also seeing a lot of “poly-pharmacy” one pill given to counteract another pill and it goes on. We are not providing adequate staffing numbers to the ratios of older people requiring the higher care. A greater percentage of staff are not trained or equipped to understand or deal with behaviours associated with dementia. People sadly don’t even understand dementia and put every person with dementia in the box as all being the same. You are also so right ….we have and are creating elder jails and taking away a person’s human rights. I left my loved carreer of aged care nursing over 7yrs ago. I was bullied by the nursing unit manager in charge and sustained a back injury which ended my nursing. But I also realise now, no matter what I did, I could not make any change in what was happening with our spiralling system of caring for our older loved ones. I will also continue to voice and advocate for th rights of all older people …even in my last breath. Keep up the great work and voice for the legacy and memory of your Mum to help so many others.

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JM