Monday, April 29, 2013

Eureka! Found Blogs Of Other LBD Writers

It's like finding a map or at least a table of contents to a complex textbook.

Have been talking with my daughter and sharing the many changes I've noticed in Grandma's abilities to communicate -- words substituted with no relationship, loss of ability to find word or make complete sentence, moving from one idea to another as though they tie together but with no bearing on one another; talking, talking, talking and laughing, laughing, laughing or angry, angry, angry -- never quite sure which emotion will surface or present itself.

Finding other members of the LBD community and their writings in varying stages of the disease (and I think we might find a commonality or possible similar progression if we compare experiences) is like releasing a valve on a pressure cooker and finding that controls the contents, if only for a little while.

For us it's also complicated by visits from JH, the woman who befriended Mom and who, we believe, works to cause more confusion and to try to get Mom to do things and say things that will cause friction between us and potential problems for Mom.

Reading, reading reading.  No one. Not a single person mentions the complex and ever changing "soap opera" of the delusions/hallucinations their loved ones mention or even relate.

There are strange things like seeing a zebra on the lawn, mistaking a spouse (female) for a secretary of many years and remembering the woman as pregnant (a laugh because the spouse said she'd been dieting and lost thirty pounds).

But then again, perhaps someone visiting mentioned the weight loss and the LBD husband rearranged the information and recollected weight loss after pregnancy which then recalled the memory of the pregnant secretary and mixed all together assembling as above. We've found Mom's delusions (and it's been mentioned by others in their writings) have some source in a "real world" experience; just as the loss of accurate language can make LBD people unable to communicate a simple thought or need accurately, taking the time to analyze what they say as this ability decreases brings about understanding.

LBD is like a mixer with random ingredients mixing in and never knowing what the end results will be because there are drains and openings where some fall through. Other parts never get mixed in, some stay in large clumps and don't "dissolve" and others fall away.

This disease, if you aren't suffering from it as the person or the caregiver, can be fascinating. It can also be frightening because the temperment of the person can go from friendly to furious and back again in what can be split seconds and may appear, lie dormant for hours, days, weeks or even years (as with one writer's spouse).

Why aren't we associating other "mental illnesses" with LBD and other Dementias and using research in those areas -- like schizoprehenia or brain damage? 

Linking together these areas of study might provide clues to discovering cures and ways to manage.

Talk about Dementia. Read about LBD. Spread the word.

Work towards a better future for our aging population.


  1. Hi Donna!

    If you have no objection I'm going to link your blog to mine. The more the merrier, uhh make that, the more the educated ;-)


  2. Kathy,

    Lewy Body Dementia needs all the exposure it can get through caregivers and family members coming forward and sharing what life is really like, what they and their loved ones experience daily.

    Broad general statements do not give a clear picture of the extreme shifts in behaviour or physical abiliities/disabiliites of LBD. Home caregivers challenges are greatly hidden from the sight of others and those who have made the transition to a facility find their loved ones greatly in need of more care from people who do not see and often do not want to see (due to the increased cost of more supervision) of LBD patients.

    Truth be told, the greatly incapacitated person requires less care than the person who's losing or lost some abilities but still believes they can do it for themselves and usually tries to. That's what's so challenging about LBD -- the level of actual ability versus the level of believed/perceived ability by the person with the disease and so many who "see" it but don't "recognize" LBD for what it actually is.

    Let's keep blogging and speaking up in our communities, cities and states to be heard; we're all growing older and many of us will also have LBD or other unrecognized challenges. Let's let those lights shine in the darkness!


We welcome your comments and any additional information we can research and pass on to others. Together we learn and grow.