Advocacy, Information, Toward better care

no one should have to put up with that racket!

I’m compiling evidence (I’ve got LOTS of it!) to include in letters of complaint to the College of Physicians of Quebec and the Order of Nurses of Quebec regarding the “care” my mother received while in a dementia jail from 2012 to 2016.

One of the environmental aspects that contributed to Mom’s anxiety and agitation was the volume and nature of the noise around her. For the first eighteen months she was there, Mom was forced to sit in an armchair beside a busy elevator and across from the facility’s call bell panel. The panel buzzed constantly and loudly. I found it extremely annoying; so did Mom. But was it just us? I decided to solicit other opinions with a mini survey.

I invited online friends and fans to listen to a 20-second audio clip:

Then I asked them to answer three questions. When I had more than sixty responses, I did an analysis. I wasn’t surprised by the results.

Question 1:

None of the respondents found the sound calming. Only three found it neutral. The large majority (83%) found the sound annoying, and nine respondents (i.e. 13% of all respondents) found it beyond annoying (for a total of 96% saying it was unpleasant in some way); those who answered “other” described it like this:

  • Oh my shattered nerves, horrible……I just wanted it to stop!!!
  • anxiety-provoking as it endures. it is indicating something is wrong, yet I don’t know what is wrong and I also can’t fix the problem
  • Stressful
  • Irritating
  • Distressing
  • so scary… a violent aggression to my ears, to my body, to my heart, to my soul! Panic… a sense of being trapped… attacked with no way out! Thank god for the sound of your soothing voice
  • most uncomfortable – didn’t like it at all
  • Almost painful
  • It hurts. I can’t think straight. It distracts and annoys me. I’m looking for ways to stop it.

Question 2:

Question 3:

The third and last “question” asked respondents to comment. When I did the analysis, Question 3 had generated 33 responses from a total of 68 respondents (i.e. 48% of all respondents left comments). Twenty of those who commented (i.e. 29% of all respondents and 61% of those who commented) expanded on the annoyance factor:
  • I have six five-year-olds in my care. I enjoy getting them rowdy, busy and boisterous. This background sound is detrimental to me and anyone who can hear it. I played it to my band of five-year-olds through a speaker. They clapped their hands over their ears. One told me to “make it shut up!”
  • I work at a specialized Dementia facility and this would freak out my residents
  • I don’t have alzheimer’s but I do have epilepsy and sounds like that really bother me especially high pitched ones.
  • Chaotic feel
  • Noise was painful
  • Those sounds make my brain crazy
  • No-one should have to put with that racket!
  • Get me out of there… fast.
  • I think this sound would be really annoying to a person with Alzheimer’s
  • I’m a carer and, if I didn’t like it, I’m sure my husband who has AD wouldn’t either.
  • I have extremely sensitive hearing and noises like this jangle my nerves.
  • that sound left me very unsettled…
  • hurts my head!
  • The sound is annoying, high pitched and likely induces anxiety in someone with dementia. A softer bell or other ringtone or even music could be a much better alternative.
  • Very annoying sound
  • Seems sound would cause severe stress over time.
  • Incredibly irritating sound, would make me furious if I was subjected to it for a long time.
  • I hated the noise – it set my teeth on edge & I wanted it to stop immediately.
  • curious when we get more info on the project, can’t imagine anyone would find it calming unless it reminds them of home (reminded me of a hotel I stayed in Lima)
  • Brought on anxiety

I received these additional comments on Facebook:

  • OMG, that was a very stressful 20 seconds!
  • I cant listen beyond 5 seconds. I can’t think. It eats into my brain. I want to make it stop. I put it through my speaker, I normally have music blasting through..it was hell. It hurts. I want it to stop.
  • Unnecessary, annoying in a sense heightening manner, with my being on spectrum may affect me differently, but it was just shy of neurological torture in that short span alone.

And one friend quipped that it wouldn’t be long before he’d take a sledge hammer to the sound panel.

If people who DON’T live with dementia find something in the environment annoying and agitating, what might it be like for those who DO live with dementia? It’s really not that hard to figure out what environmental factors might be distressing to someone who lives with demential. All you have to do is ask yourself what you find irritating and/or distressing, and put yourselves in their shoes.

The oh-so-irritating call bell alarm panel sound was eventually changed to something more like a “ping,” but only after Mom had been there for about eighteen months. And that wasn’t the only anxiety producing noise she had to endure. She had always hated loud sounds. It must have been unrelenting torture for her to be imprisoned in such a noise-filled environment. No wonder she was “agitated.” 

https://myalzheimersstory.com/2017/10/02/loud-sounds-and-dementia-mostly-dont-mix/

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

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

20 expert tips for the driving dilemma conversation

 

Two of the biggest among the multitude challenges facing many Alzheimer’s dementia care partners are:

  1. “I want to go home.”
  2. trying to get a person with dementia who can no longer drive safely to stop driving

This post is about how to get a loved one to give up their car keys. Why? Because we all want to avoid head-on collisions (and BANGS) both off and on the road.

Top tip #1:

DO NOT attempt the “driving conversation” on your own with a loved one living with dementia.

 Instead, do this:

  1.  Enlist the help of an “expert” outsider whom your loved one respects
  2. Ask the expert to watch the Teepa Snow video below BEFORE the conversation
  3. Give the expert the list of “Tips for Conducting the Driving Dilemma Conversation” (you can download the PDF at the link below the video)
  4. Do a practice role play with your expert (you act the part of your loved one)
  5. Identify pitfalls, develop responses to use with the tips below

Tips for the expert whom you will enlist to conduct the driving dilemma conversation (see disclaimer):

  1. Create a connection
  2. Use “hand under hand”
  3. Make eye contact
  4. Identify the issue
  5. Flag the emotion
  6. Acknowledge competence
  7. Ask questions
  8. Praise & agree
  9. Show you know what they value
  10. Understand their position
  11. Invite them to consider consequences
  12. Offer options
  13. Build self esteem
  14. Be respectful
  15. Be on their side (against common “enemies”)
  16. Accept and value their input
  17. Identify external threats
  18. Offer solutions
  19. Give support
  20. Be a partner

See how many of the 20 tips you can spot in Teepa’s video:

 

 

You must give all of this information (i.e. the tips and the video) to the “expert” BEFORE the conversation, because even experts need support to get the job done. Success depends on a team effort.

Key words/questions:

Could we try?

What do you think?

As Teepa suggests:

“Use what you know about their values and what is important to them to help them make hard choices.”

Download 20 Tips for the Driving Dilemma Conversation

Find more great tips here.

Good luck and let me know how it goes!

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