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Honored Contributor
Posts: 16,186
Registered: ‎11-08-2014

HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

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I came across this through watching her (Leslie's) decorating blog.  For a year, they've been documenting the husband's (Jason's) experiences with Lewy Body Dementia.  They discuss the loss of cognitive function, of course, and also the mood swings, sometimes uncontrolled body movements, the auditory hallucinations, and so on.

 

For all those dealing with similar, ongoing and devastating neurological or brain dysfunction, or even 'garden variety' mental illness that does not respond to treatment, it can be so valuable to hear the experiences of others. 

 

What a dear couple--  her dedication, their courage-- and their bafflement and sadness- his wonderful flashes of humor--  it's all there.   Hoping this can be of help to loved ones, caregivers, and sufferers.

 

Will say a prayer for this dear family.

 

https://www.youtube.com/watch?v=lZlSJfBbLrI     

 

Trusted Contributor
Posts: 1,080
Registered: ‎07-23-2014

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

Last year I watched Robin's Wish on Netflix about Robin Williams and discovered he also had Lewy Body Dementia.  They believe that led to his suicide.  Even though my mom suffered with dementia for years before she died, I had never heard of this form.  It's a devasting disease in all it's forms, but this seems like it would be extra hard.

Respected Contributor
Posts: 4,400
Registered: ‎12-02-2013

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

[ Edited ]

@lkat 

 

My dad had Lewy Body dementia.  Thank God it was an aggressive form and he passed quickly unlike the Alzheimer's my mother had.

 

The visual hallucinations were bad but the reaction to the antipsychotic drugs were terrifying.

We make a living by what we get. We make a life by what we give.
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Honored Contributor
Posts: 11,971
Registered: ‎03-09-2010

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

[ Edited ]

When we had to change my husband's neurologist 3 years ago or so, the new neurologist suggested that maybe.....possibly.....my husband had Lewy Body dementia, something our original neurologist had never suggested.  The new doctor said that only an autopsy could tell for sure.

 

I just watched this video.  My husband never went through anything like this poor man,thankfully, though what he went through, particularly the last few months of his life was horrific enough and I don't know that I will ever recover from seeing his struggles.  It's life changing for the caregiver as well as the patient. 

 

What stood out to me most in that video???? Not the husband, though that was bad enough.  What stood out to me most was the absolute exhaustion I could hear in his wife's voice.  Now THAT I can identify with.  


Why is it, when I have a 50/50 guess at something, I'm always 100% wrong?
Trusted Contributor
Posts: 1,080
Registered: ‎07-23-2014

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

@jlkz That is awful, I'm so sorry.  Can't imagine having to go through all that with both parents.

 

My mom had dementia for years that slowly got worse, however, once she started with hallucinations it went downhill fast.  It was terrifying to be with her when she was having one.  She had to spend a few months in a geriatic psych unit at the hospital and once they started with those antipsychotic meds she basically started shutting down.  She passed away two days after we took her home.

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Posts: 21,919
Registered: ‎03-09-2010

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

My mom had Lewy's Body Dementia and it's not fun. The hallucinations were horrible and she'd go nonstop for fifty hours or more just highly agitated and constantly moving, getting more and more upset and angry with each passing minute. When she'd finally burn out and go to sleep she'd sleep for 48 hours straight or longer. It was brutal.  

Fly!!! Eagles!!! Fly!!!
Honored Contributor
Posts: 16,186
Registered: ‎11-08-2014

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

I appreciate people sharing their difficult experiences with these syndromes here.  You have probably helped others just by relating your particular story.

Respected Contributor
Posts: 3,546
Registered: ‎03-11-2010

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

On NPR this morning a woman was featured who was caring for her husband with some sort of dementia.  Previously he had been in daycare for 5 hours a day so she could go to work.  Of course, the daycare closed, so she had to quit her job to care for him at home.  I can only imagine how difficult that is.  I felt so sorry for her.

 

 

Honored Contributor
Posts: 16,186
Registered: ‎11-08-2014

Re: HONEST TALK FROM A COUPLE COPING WITH DEMENTIA

Wow, that's such an important aspect, @Another new name Sue .  Leslie, in the video, mentions her concern that they'll reach a point where she cannot leave him and will have to quit her part-time job.

 

I'm sure that day care is such an essential respite for care givers,  either to be able to go to work or just get relief from their overwhelming responsibilities.  With other facilities opening up, and the widening population of the Covid-inoculated, here's hoping such important facilities re-open soon....