Hallucinations(21)

ttrs

Hi I’m new here. Thought I would post my situation  and ask for suggestions. 

After 3 years of various doctors, 1 hospital stay and 4 neurologist, my mom was diagnosed with Lewy Body Dementia last week. I guess some part of me was still hoping that it was something that there was a magic pill for.  I’m still reeling. 

I should mention that mom lives in an apartment on the the lower level of my home so I am able to be there for her whenever she needs me.  I do have a PSW coming in twice a week to help her shower. Everything else is me   I am fortunate to have my wonderful husband supporting me. 

Mom’s symptoms are far more physical than mental. In the last 2 years she has gone from walking on her own, to walking with a cane and now a walker.  She has full body shakes. We have been lucky so far that every time she would have fallen there has been someone or something behind her. But it’s just a matter of time. And it won’t be a small thing when she does  she has osteoporosis and has lost a lot of weight  

Our biggest problem at the moment is hallucinations. Her doctor has started her on Quetipine but it’s going to take some time to ramp it up.  Mom started having mostly auditory hallucinations about 6 months ago. Some radio station playing music she doesn’t even know, like opera and big band.  Sometimes it is so loud she can’t sleep. The visual hallucinations were limited to vague, indistinguishable people occasionally in her apartment until a a few weeks ago Now mom has an entire family living with her, sleeping in her bed, doing “disgusting and offensive” things on her bed. She now gets changed in her bathroom and last night she slept on her couch in her living room because they wouldn’t leave and she didn’t want to wake up next to the old man.  She knows that they are not really there. She tells me she knows that every day. But it’s upsetting her so much. She resorts to yelling at them to go away, get out and leave her alone. But according to her, they just laugh. Then she tells me she feels like an idiot yelling at people that aren’t there. 

I know it’s going to take time for the medication to work. Is there anything I can do to help her until then?

Thank you for letting me vent. 

M1

Welcome to the forum ttrs.  My sister in law died of LBD in December, and it wasn't recognized until just prior to death because the symptoms were almost entirely motor (no hallucinations).  She fell several times, including twice that were very damaging (leading to pulmonary emboli and broken bones).  I wonder if a monitor (visual and/or auditory) in her apartment would help when you are not there; perhaps you are already doing that.  

Seroquel/quetiapine can be ramped up fairly quickly, so don't be hesitant about discussing this with her docs.  Good luck, and sorry for your situation, it's a terrible disease.  We ended up being not sorry that sister in law wasn't diagnosed sooner because it would have just caused her despair.  The only thing I would have different would have been to prevent the falls.  

Stuck in the middle

If I thought I was likely to fall, I would want to remove things like coffee tables with square corners and glass tops, and I would want to wear some sort of pager so I could call for help getting up.