Communicating Challenges With Lewy Body and Dementia

Posted by Larry @larryh123, Jul 26, 2021

Hello:
This discussion is being put together allow LBD patients and caregivers a place to exchange ideas on our communication challenges.
As a LBD patient - I like to share some insight into what things look like from the patient side. I call it - from "in here".
I encourage other patients to chime in.

I will be posting some tips daily for communication - if that is what you would like.

Looking forward to growing this discussion and learning from and with all of you.

Caregivers - always remember that we love you and appreciate what you do for us everyday. Even if we can't say it or even seem cognizant of it - our heart knows.

Peace
Larry H

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@hopeful33250

Hi @larryh123,

When I say "the pause" I'm referring to speaking slowly and including a pause as I speak. This gives me better control. If I start talking quickly, I really lose the quality of my speech. When I was in speech therapy and was reading out loud, the speech therapist would instruct me to pause when I got to the end of a sentence or paragraph. It does help your speech to be intentional. Intentional is a great concept when you have any neurological problem.

I also use "the pause" when I'm eating and drinking. Intentionality is very important to me. While some might think that I'm "slow" it is not really the case.

@johnbishop, As you mentioned "the pause" in Toastmasters can you offer an explanation as to how you use it?

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The pause can be used in a speech to capture the audience attention...
"Using a micro-pause interrupts the daydreaming of audience members and brings them back to active listening. In addition, you can use a pause to transition to a new topic. Your audience members, as they listen to you, are evaluating your words in the framework of your existing context." -- https://www.toastmasters.org/magazine/magazine-issues/2019/july/silence-is-golden

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@johnbishop

The pause can be used in a speech to capture the audience attention...
"Using a micro-pause interrupts the daydreaming of audience members and brings them back to active listening. In addition, you can use a pause to transition to a new topic. Your audience members, as they listen to you, are evaluating your words in the framework of your existing context." -- https://www.toastmasters.org/magazine/magazine-issues/2019/july/silence-is-golden

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@johnbishop, Great article on the pause. Thanks, John

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For years my husband and I have enjoyed an evening devotion. Initially, we took turns reading meaningful sections out loud to each other and discussing them afterwards. It was during this reading time that I realized he was losing the ability to read outloud. He would stutter, read words incorrectly, leave out words,(especially words by the margins - he eventually said they just fall off the page) and gradually he just gave up reading outloud. Every once in awhile, he will try to read a board book to one of our grandchildren. Even with the simplified print and large, common sight words, he has great difficulty. This was actually one of those moments that were initially puzzling because the many doctors were at a loss and their guesses were obviously incorrect. Now I read to him and we discuss as much as possible...then we pray. Sometimes the words come out correctly - other times I know that God understands. I do admit that as a teacher, this is frustrating because I have helped hundreds of children learn to read and love to read - now I want to help my husband -but......
On a side note, we have a pool that is acting up. I am having to do more and more of the maintenance (a huge learning curve for me because this was always "his" job)...last night we had to flush water out of the pool to get the chemicals balanced and I get a big fail on my behavior because I frustrated my sweet hubby as he was searching for words to help me understand. (And I still don't understand...)This list is going on my wall to remind me to do more of the things mentioned even when I am frustrated and overwhelmed.....very simple words for the tornado that was whirling around in my heart last night. Thanks for all the posts on this matter.....Larry would love to hear you read out loud....bet those words would soothe many hearts.

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@hopeful33250

Here is an article about the cognitive and social value of reading out loud, https://www.literaturelust.com/post/4-reasons-why-reading-out-loud-is-actually-good-for-you

This article reports that reading out loud will improve your memory, comprehension, etc.

I would love to see your comments after you read the article

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Great article. A good read for - well everybody!!! One thing struck me right between the eyes “ Another reason that reading out loud improves your comprehension is because it sharpens your focus and eliminates distractions. If you’re reading out loud, your mind is concentrating on both the pronunciation of the words and their meaning. It’s connecting the muscles needed to produce sound with the mental activity of attaching meaning to those sounds.

You’re so busy doing all these simultaneous activities that you must focus on the task at hand.”

Divided attention stuff is one of the areas I test low on. Too much stimulus isn’t great for me.
Tools that can help me with focusing on one thing can help in many ways.

When reading through the article I was reminded of my days as a Master Training Specialist in the Navy. I liked to employ a tell, show, do style of teaching. If you read the article - there are elements of all.

Thanks for the info.
I’m sure many will find it useful.

Peace
Larry H

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@teacher502

For years my husband and I have enjoyed an evening devotion. Initially, we took turns reading meaningful sections out loud to each other and discussing them afterwards. It was during this reading time that I realized he was losing the ability to read outloud. He would stutter, read words incorrectly, leave out words,(especially words by the margins - he eventually said they just fall off the page) and gradually he just gave up reading outloud. Every once in awhile, he will try to read a board book to one of our grandchildren. Even with the simplified print and large, common sight words, he has great difficulty. This was actually one of those moments that were initially puzzling because the many doctors were at a loss and their guesses were obviously incorrect. Now I read to him and we discuss as much as possible...then we pray. Sometimes the words come out correctly - other times I know that God understands. I do admit that as a teacher, this is frustrating because I have helped hundreds of children learn to read and love to read - now I want to help my husband -but......
On a side note, we have a pool that is acting up. I am having to do more and more of the maintenance (a huge learning curve for me because this was always "his" job)...last night we had to flush water out of the pool to get the chemicals balanced and I get a big fail on my behavior because I frustrated my sweet hubby as he was searching for words to help me understand. (And I still don't understand...)This list is going on my wall to remind me to do more of the things mentioned even when I am frustrated and overwhelmed.....very simple words for the tornado that was whirling around in my heart last night. Thanks for all the posts on this matter.....Larry would love to hear you read out loud....bet those words would soothe many hearts.

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Part of my issues with reading is comprehension. When I read I can take a long time to read a page. Then when I look back at a previous paragraph - it is like I didnt read it.
That is very frustrating and sometimes i just throw up my hands and stop reading.

Wrong approach!!! I need to work harder and read aloud to try and see if that helps.

The devotionals are great. It’s not the words that get spoken in prayers that are as important as what is written on the heart.

Peace
Larry H

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@kellywilbanks

Truly appreciate any helpful suggestions or insight to how this disease is impacting my husband , as each day seems to look different. Thankyou for sharing with us caregivers as the uncertainty of the future is difficult . Just doing our best to take it one day at time !
Thankyou. Kelly

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Hi Kelly, that every day is different is a frustrating and sometimes confusing characteristic of dementia. Luckily we're here every day for the day's newest challenge. What communication issue has been a challenge for you and husband lately? What approaches do you use?

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@larryh123

Part of my issues with reading is comprehension. When I read I can take a long time to read a page. Then when I look back at a previous paragraph - it is like I didnt read it.
That is very frustrating and sometimes i just throw up my hands and stop reading.

Wrong approach!!! I need to work harder and read aloud to try and see if that helps.

The devotionals are great. It’s not the words that get spoken in prayers that are as important as what is written on the heart.

Peace
Larry H

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@larryh123 I so agree with your last sentence, Larry. As I read out loud I find the words and their meanings being "cemented" in my mind and heart.

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@kellywilbanks

Truly appreciate any helpful suggestions or insight to how this disease is impacting my husband , as each day seems to look different. Thankyou for sharing with us caregivers as the uncertainty of the future is difficult . Just doing our best to take it one day at time !
Thankyou. Kelly

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Hi Kelly
Doing our best to take it one day at a time is the best we all can do.
This is a journey. One that will have some good road, some bumps, some tight turns and a few crashes along the way.
It definitely is a roller coaster each day. It is definitely one from “in here”. My wife says I wonder which Larry I will get today. I wonder that as well.
It really takes a toll on me as I never want to hurt her.
The biggest thing you can do is being there. Letting him know he is not alone.
Help him to focus on things he can do and not on things he cant do anymore. I used to live in the what i used to be able to do jail for a while.
The Lord has shown me that I can still do many things - just different things than before.

Our caregivers are our best medicine - even if we cant or dont acknowledge it - it is still there.

How long ago was your husband diagnosed? How is he doing over all?
It helps me to understand so I can try to give better information to you.

Thank you for being on this journey with him.

Peace
Larry H

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Hello:
I wanted to share an experience I am running into - maybe some of you are noticing this as well.

I have seen this statement used when communicating with someone with MCI and / or dementia.
“Keep it short and to the point, one idea at a time”

I just can’t multitask anymore. When someone is describing something to me - after a certain point I have tuned out because it is overload. I wonder if that makes them feel like I’m not interested? I guess I worry about that as well.
My youngest son will tell me about his day at work. After the 2nd thing I’m not following anymore. I just nod and hope he doesnt ask me anything about what he said. Very frustrating.

Here’s the hypocrisy - I want you to be short and to the point - I cant do that most of the time. My wife and lovely caregiver says I can take 5 minutes to say what should take a minute or less. Maybe like I’m doing here. So bear with us!!!

Go easy with us. We want to have normal conversations. Just with some modifications.

Any suggestions?

Peace
Larry H

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@larryh123

Hello:
I wanted to share an experience I am running into - maybe some of you are noticing this as well.

I have seen this statement used when communicating with someone with MCI and / or dementia.
“Keep it short and to the point, one idea at a time”

I just can’t multitask anymore. When someone is describing something to me - after a certain point I have tuned out because it is overload. I wonder if that makes them feel like I’m not interested? I guess I worry about that as well.
My youngest son will tell me about his day at work. After the 2nd thing I’m not following anymore. I just nod and hope he doesnt ask me anything about what he said. Very frustrating.

Here’s the hypocrisy - I want you to be short and to the point - I cant do that most of the time. My wife and lovely caregiver says I can take 5 minutes to say what should take a minute or less. Maybe like I’m doing here. So bear with us!!!

Go easy with us. We want to have normal conversations. Just with some modifications.

Any suggestions?

Peace
Larry H

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Hi Larry, One thing that might help is asking for more specific information. If you ask your son how his day at work went, maybe try asking, what was the best thing that happened at work today, or the worst, or the funniest. It will narrow the focus, reduce the amount of information you're receiving and maybe stand out because it's a superlative -therefore memorable. I worked in Huma Resources for years and that's a technique employed in Behavior Descriptive Interviewing. Best, tsc.

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