Dementia with Lewy Bodies

Over the past several months that Craig has lived in a dedicated memory care community I have observed other residents with "Alzheimer's". Over the last several years I have read and learned more about Alzheimer's than I ever wanted to know. As I observe the other residents and recall all I have learned, I have taken notice that Craig's symptoms are very different than those with Alzheimer's. I "assumed" his Alzheimer's was "different".  He never lived in another time, he is always in the present moment among several other behaviors.

Recently I was approached by someone with the thought that maybe Craig actually has Lewy Body Dementia, not Alzheimer's. What the hell is that? I immediately set out to research. You could have knocked me over with a feather on what I found. I read page after page after page of information with my mouth hanging open as EVERYTHING I read fit Craig's behaviors and symptoms to a T. 

Symptoms vary from site to site, but here are some that really blew me away:

Hallucinations (Craig commonly talks to people & children who are not there among other things)

Delusions (Craig would commonly blame me and others for things that never happened)

Confusing dreams with reality (he would get out of bed several times a night and act out dreams)

Fluctuating cognition with pronounced variations in attention and alertness (common with Craig)

Confusion in general (Craig would confuse most everything and sometimes even now comments that his is really confused)

Mixed up speech (he also used to mix up his written words when he could still write)

Depression (he gets in very depressed moods now - very unlike Craig)

Staring off into space (Craig does this often)

Shuffling gait (he would walk in very slow motion)

Unexplained loss of consciousness (he would just "faint" out of nowhere)

Unexplained falls (a lot of this happening over the last year and half - AND if we think back through Craig's history he was always falling.)

Leaning forward or walking "crooked" (this has been happening for years)

Jerking / movement disorder (this was happening when we first got married and now has become much more prominent)

Unpredictable levels of cognitive ability, attention or alertness (constant in Craig)

Reaching out and grabbing nothing in the air (Very often)

Dry eyes (when Craig wore contact lenses I always thought it was odd at how often he would pull out his eye drops to wet his eyes - at least every half hour and more)

No sense of smell (Craig has no sense of smell)

On and on and on......

Lewy Body Dementia is OFTEN misdiagnosed as Alzheimer's. It presents much the same in the early stages. 

I've spoken with his Dr. and he is completely open to a re-diagnosis and felt much like me, it explains a lot of Craig's behavior that we can't control with Alzheimer types of medication. Some could actually be very harmful in LBD. 

So next week as soon as a bed opens up at the Geropsych Unit, Craig will go back in, we're going to have him re-diagnosed and hopefully get him on the medications that will safely calm him down. 
Please Lord.

If you visit Craig please do not talk about things you think he will forget or doesn't understand because he can't respond. Because I can tell you from experience sitting with him every day for hours he understands you perfectly well and lives in the present moment. 

I am convinced Craig has Lewy Body Dementia and not Alzheimer's. 

My Heart, My Soul, My Hero

More very interesting information I keep finding as I continue to search:
"some patients seem to present first with the dementia and later the Parkinsons signs. Both groups are younger than patients with Alzheimer's disease, are far more often males, and may have some loose genetic susceptibilities."