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 Newbie with questions 
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Joined: Wed Feb 16, 2011 12:23 am
Posts: 4
Post Newbie with questions
Hello, I'm a newbie with questions. My stepmother (who I am very close to and am her primary helper) who is 87 was diagnosed with DLBD in January. Looking back now, I realize she probably had the signs and just thought it was her age and these people she was seeing when she went to bed or woke up were in her dreams. Now I realize this probably wasn't the case. She did realize at that time they weren't really there. That was going on for probably 4 years, maybe more.

Do the symptoms fluctuate where they go in and out of what is true reality?

I'm being told and see that you're supposed to go along with "their reality" to a certain degree. Everyone my stepmom is seeing has passed away. She keeps wanting to know where they are and are they ok, what are they doing, etc. I would like to know how other people handle this successfully. It can't be easy for anyone. I know it's not for me.

When the doctor first put her on medication she seemed more normal and said she wasn't having hallucinations. She knew the date and knew where she lived, etc. Last week she started having more trouble with falling, sleeping issues and kept asking me where these (dead) people were. She says she's confused. Would I be correct in thinking that medications may need to be adjusted at first and could it be possible that she could go back to that more normal condition?

Another of my concerns is are there things that trigger episodes? Like I had taken her out and we spent some time together right before she started having problems last week.

I appreciate any feedback. This is so traumatic because I basically feel like I lost her. I'm afraid to talk to her because of my anxiety about how it will go and dealing with what to say. She lives in an ALF where they provide care for Alzheimers. I don't go there every day, but worry maybe I should go more. I'm frustrated as I don't know what's best to do for her.

Sorry to be so long. Thank you for any words of wisdom.

Thu Feb 17, 2011 11:23 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Newbie with questions
Sorry you've had to join us here.

Fluctuating cognition is a hallmark symptom of Lewy Body Dementia. Other dementias don't have fluctuating cognition.

Medication does have to be adjusted. Be sure to find Dr. Brad Boeve's "Continuum" paper from 2004 on as a good treatment approach for LBD. Often a normal-like state can be achieved. As the disease wears on, it's harder to achieve something close to normal.

There can be trigger episodes. But lots of times behavior doesn't seem to be triggered by anything.

Thu Feb 17, 2011 12:20 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with questions
Minabird, welcome to the forum! It sounds like your mother is properly placed in an ALF geared toward dementia. I hope they are familiar with LBD and the unique features of this disease. There are some informational brochures you can order from LBDA and some one-page sheets you can download to print off and give to health care providers, family members and anyone else associated with her care.

Our experience has been that a stimulating experience, like an outing or visitors, can trigger delusional episodes and also wear them out for the following day. This may be due in part to their efforts to appear 'normal' and to participate. Not to say you shouldn't do it if your LO wants to but be prepared for the fallout.

God bless you for being a concerned and caring stepdaughter! Keep up the good work. :P

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Feb 17, 2011 12:49 pm

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Newbie with questions
I agree with Mockturtle. We have found in our case that if there is too much stimulation, my husband is unable to sooth himself enough to get to sleep. It's like a baby who is over stimulated and keeps jerking awake even though the baby REALLY needs leep. We try to keep things down to one event a day. Nan

Thu Feb 17, 2011 1:40 pm

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Newbie with questions
That should read SLEEP, not LEEP. Nan

Thu Feb 17, 2011 1:45 pm

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Newbie with questions
Welcome.... I agree with the others and can only add that not only do I attempt to limit my husband's 'events' to no more than one per day, I would also suggest that having too many people at one event is also too much stimulation for him. Go see her alone... rather than bringing others with you.

Don't be afraid to talk WITH her.... or sit in silence just holding her hand. It seems to me that the quality of her time with you is more important than feeling like you need to be there every day.

I'm so glad you care about her. I am also a 'stepmother' and know the pain of rejection.

Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011

Thu Feb 17, 2011 2:34 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with questions
Welcome to the LBDA forums and I too am sorry for your need, sometimes some stimulations and changes in rountine can upset thing a little and I agree with don't stop them just prepare fpr them and another thing to think about with sudden changes if not caused by some sort of change in routine cpould indicate a start of an infect such a UTI, for some reason they have great effects on these people. Please feel free to look through the many posts here as I know they will be helpful !

Visit often and Good Luck !

Irene Selak

Thu Feb 17, 2011 4:23 pm
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Joined: Wed Feb 16, 2011 12:23 am
Posts: 4
Post Re: Newbie with questions
Thanks everyone for your info and kind and encouraging words.

Thu Feb 17, 2011 10:39 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Newbie with questions
Welcome, and so sorry for your need to be here. I think it's helpful if you can read as much as you can, especially those topics that are most pertinent to what's going on at the moment. Don't be afraid to come here for support, advice, information, etc. I found it a great source of support when my dad was diagnosed with dementia and other conditions. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Fri Feb 18, 2011 1:13 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Newbie with questions
I think that the Brad Boeve article mentioned by Robin is very helpful, but I have trouble searching for it. In case you are interested, it is here

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Fri Feb 18, 2011 1:50 am
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