My Mom was diagnosed with Lewy Body Dementia. Does anyone have experience with this?
First, I want to give a huge thank you to all of you to all who responded to my previous question regarding how to explain that her hallucinations aren't real. After taking her to her primary care physician, where he tested her, he referred her to a neurologist. Last week, she was diagnosed with Lewy Body Dementia. I've been reading up on it, and although it is a relief to have a diagnosis, it is also a bit overwhelming. I guess, my main thing is how to handle her with her hallucinations. Now, she sees people in her bathroom mirror (her bed faces the bathroom). I have since started closing the door when she goes to bed, and that seems to help, but she still is adamant that there are small children who get into things in her room if they are not taped up or hidden away, various people milling about, etc. Depending on the hallucination, she becomes determined to contact the property manager regarding the people. She isn't afraid, just irritated that "these people" seem to be able to come in at will. Most of the time, I am able to "talk her down", but sometimes, it is not that simple. I just need a little advice. I no longer try to convince her that what she has seen isn't real, but when she starts talking about contacting security or the property manager, I am sometimes at a loss...
I am so thankful for this resource, and the wonderful, caring people who are willing to share their experiences and knowledge. Thank you so much!
Looking now total retrospective, it was 3 phases for her
- the first likely 2-5 yrs appeared totally competent & cognitive, can do ADLs and have 1 or 2 odd fixations... my mom’s was about mailman / mail delivery & folks going thru garbage in service alley behind her home. All stuff that seemed totally plausible to be happening... my mom still totally good on her mini mental & even underwent rotor cuff surgery & rehab in this long first phase.
- phase two was like 4 years, but fixated more, like super OCD on something, mine was about shoes but still ok on ADLs, kept house tidy, did laundry, paid bills. Lots of this is purely imo autopilot. Started definitely having Lewy “Shuffle” - they scoot on feet rather than lift their legs to walk. If rugs or lots of levels or steps, their gonna fall. If your around them a lot you may not notice it. She also had visual distortion- - like surfaces appeared cobblestone even tho flat- & more paranoid on being invaded. I live in another state, for me the tipping point to have her move into IL was when my son & I came in to visit &. as I opened kitchen door, we were thrown back by gas smell..... stovetop was running, kid ran to open other doors, I started opening windows..... mom sitting in her room folding clothes watching Wheel of Fortune, oblivious. Wasnt her fault either, bad stove, bad dial. For extra fun, son couldn’t open den door as key was broken in lock & that too not her fault but due to somebody trying to break in..... like those guys that went thru her garbage. Put her on lists at several ILs & moved her into one 3 mos later. Lots of drama day of move. But she adjusted within days to point of signing up & getting dressed & over in time to go on shopping trip plus could go to daily lunch meal & other activities.
Lewy is hard in that can visually look fine & good on ADLs.
But its there lurking. Excelon I think does help Lewy slow down as does Remeron (get real sleep).
Mine had animal hallucinations in phase 2. First mo in IL, told me very matter of fact there was a cat in her apt. Yeah I totally believed it. Asked others on her floor. But no pets on her floor, only allowed on ground floor apts. then a rabbit. Then another cat. Like over in a corner, just being there. She didn’t try to pet it or set food out. Just that it was there sometimes, not threatening. In looking at her space, there were dark areas. I got torch lamps & put on timers, so regular pattern of light. I did this on table lamps but those she would mess with. Floor lamps she for whatever reason would leave alone. Got rid of all big dark furniture & put in narrow blonde wood bookcases - less shadows. In bathroom & hallway put up high shelves w/battery operated candles. Sequentially on from 9 to 9 so always some degree of low light. Less shadows = less animals. paranoias on people did increase, like someone would come into her apt & take stuff or hold a meeting in her apt while she was at lunch or out. One day, I couldn’t get flashlight to work & opened it only to find it filled with jewelry, $. All flashlights ditto. But she’s still good on basic ADLs. She could totally go for meals, dress appropriately, do fire drills the IL regularly did. Then Mom eventually started being unable to take her meds & wandering hallway at night as couldn’t find her apt door. Got her moved from IL to NH. Totally bypassing AL phase.
NH still w/paranoias but NH routine helps decrease it. Plus meds done regularly. My favorite one was she was convinced Gypsy orphans lived in upper floors of NH; NH by a college, she could see kids w/tats, earrings walk by but disappeared. Yeah makes sense...
Phase 3 abt 6 mo after entering NH, more dementia like Alz, & didnt always recognize family. Paranoias kinda stopped. Mom fell while pulling her wheelchair on way to activity at NH & was bedfast on hospice in NH 18 mos. Last few mos, she was pretty much living in her early 20’s. I like to think that’s when she was happiest.
Glad to see you back. Sorry about the diagnosis. But as you say good to be able to put a name on it.
One of the people who responded to your last post is a long time poster on this site, JeanneGibbs. Your post may have been one of the last I’ve seen her respond to.
She took care of her husband, Coy, who had LBD. He was younger than your mom And had different issues but still might be helpful. When things went wrong in his life, they blamed the problem on “Lewy”.
I did a search for Coy, below. She shared quite a bit about how she managed caring for him and the support systems she utilized.
(her other posts are great too but there are literally thousands so using the filter of Coy focuses more on LBD ones)
https://www.agingcare.com/search?term=Coy
I hope this helps. Your mom is lucky to have 1st daughter in her life.