LBD Video Series: Reflections

Jun 1 9:04am | Nick Rethemeier | @nrethemeier | Comments (3)

Over the course of several weeks, The Hub will launch a series of videos focused on Lewy Body Dementia (LBD). You will hear from experts at Mayo Clinic as well as collaborating partners presenting on LBD and ways to manage symptoms and improve quality of life for the person with dementia and their caregivers.

This week’s video is an excerpt from the May 3rd Lewy Body Dementia Knowledge and Support Summit. Reflections provides testimonies from a person with LBD, a caregiver, and a support group discussing their experiences with LBD and where they find hope and resilience every day.

New videos will be posted on The Hub each week. Stay tuned for more engaging content!

Additional Questions Answered

After the Lewy Body Dementia Knowledge & Support Summit, we continued to receive questions from attendees about Lewy Body Dementia, medications, and more. We asked our experts to answer your questions and you can find their responses on the Q&A tab. This tab will be updated monthly with additional questions posted to the Hub.

This is difinetly a two person disease. The patient with LB, and the caregiver. Thank God for support groups where we caregivers can share our ideas and open our hearts to the difficulties we face.

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@barfly

This is difinetly a two person disease. The patient with LB, and the caregiver. Thank God for support groups where we caregivers can share our ideas and open our hearts to the difficulties we face.

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Your comments about this being a two person disease are rich on. As a person living with LBD – we appreciate you!!! We both see the changes – you might see smaller changes before we realize there is even a change.
We are partners. We cant go it alone. We need you.

Open communication between the patient and caregiver is paramount.
As early as possible – start looking at potential communication issues. You might not think it is important since communication is good now. The changes might be subtle and will build over time. Taking the time to think about communication before it becomes a problem will be something you will be glad that you did.

We are very glad we were able to do that.

Even if we cant say it – know that we truly appreciate everything you do. It may not even like it – but we do love you. Even if we cant say it – even if there is not communication – we love you in our hearts.

My wife – my caregiver – tells me that I take 5 minutes to make a point that should take a minute or less.
If that has happened here – its Lewy talking.

If you would like to know about what it is like from “in here” – a person living with LBD I would be happy to help.

Peace
Larry

REPLY
@larryh123

Your comments about this being a two person disease are rich on. As a person living with LBD – we appreciate you!!! We both see the changes – you might see smaller changes before we realize there is even a change.
We are partners. We cant go it alone. We need you.

Open communication between the patient and caregiver is paramount.
As early as possible – start looking at potential communication issues. You might not think it is important since communication is good now. The changes might be subtle and will build over time. Taking the time to think about communication before it becomes a problem will be something you will be glad that you did.

We are very glad we were able to do that.

Even if we cant say it – know that we truly appreciate everything you do. It may not even like it – but we do love you. Even if we cant say it – even if there is not communication – we love you in our hearts.

My wife – my caregiver – tells me that I take 5 minutes to make a point that should take a minute or less.
If that has happened here – its Lewy talking.

If you would like to know about what it is like from “in here” – a person living with LBD I would be happy to help.

Peace
Larry

Jump to this post

Thank you for your response Larry.
I see communication as a gradual changing aspect in my caregiving. We have a pretty good communication level right now. Just this morning he was trying to remember what he wanted. I said "yogurt" and that was exactly what he wanted to say. After 54 years of marriage I have a 6th sense for his thoughts. Hope that continues as he progresses. I am sure we will have some frustrations along the way

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