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 We are both in assisted living. 
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Joined: Sat Sep 01, 2012 4:59 pm
Posts: 4
Post We are both in assisted living.
My wife and I live in an assisted living facility. I am 71 and am nonambulatory due to a rare muscle disease, inclusion body myositis. My wife is 65, also in a wheelchair from myotonic muscular dystrophy and suffers from dementia (most likely Lewy Body Dementia) and psychosis. We have been unable to get a firm diagnosis because she also has stageIV chronic kidney disease which prevents the use of contrast media for brain imaging. However her symptoms would seem to point toward LBD.

Her first symptoms were hallucinations which began late last year while we were still living in our own home. They mostly involved wild animals outside and spiders inside, and a delusion that I was sleeping with our caregiver. She would roll over in her bed and point at me (in my hospital bed, wearing my CPAP, unable to move) and hiss "How can you deny she's not in bed with you?" Ever since we moved to the assisted living facility 3 months ago, her hallucinations and delusions have taken on a complex and frightening story line. She believes there are people living here who are out to punish her and our family because (she thinks) she allowed one of their children to be eaten by tigers. Her hallucinations include a vast cast of characters, including an Indian tribe, dozens of onlookers, police, numerous lions, tigers, bears, snakes, and even a kangaroo. She believes she is being shot with arrows and is having disfiguring medical procedures performed on her.

In the past few days, she has seen her daughters and grandchildren attacked, molested and seriously injured and, in one case, killed. She spent an entire night grieving over the loss of our child. She is constantly demanding that I take action or that caregivers take action. She wants us to call the police, kill snakes and scare off tigers etc.

One evening she was convinced her sister was visiting and that we had to bring in an extra bed for her. I got her sister on the phone who told my wife she was 1500 miles away in her home state. Afterward, my wife put down the phone and told me she had to go tell her sister that she isn't here.

Last night her sister was hanging from a tree and my wife wanted us to cut her down.

She keeps demanding that the owner of the facility kick out the trouble-making family.

I can't find anyone who can advise me how to deal with all this. The neurologist doesn't want her to take any antipsychotic medicine because he suspects LBD, but he doesn't have to deal with the behavior issues. Her geriatric psychiatrist has prescribed risperidone because she believes the symptoms are more psychotic than from dementia. In fact she says this is the worst case of its type she has ever seen.

I am truly losing my ability to cope with this and have been unable to find any other resources nearby. Does anyone have any suggestions?


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Sat Sep 01, 2012 6:18 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: We are both in assisted living.
First of all welcome to the forum! As we all know, you have your hands full. Our experience with antipsychotics was that Risperdal was a disaster [almost killed my husband] and Seroquel, administered very gradually, has been a godsend.

I'm sure others will share their experiences, too. There are already quite a few posts on this subject and you might want to read through them. God bless!

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.

Sat Sep 01, 2012 10:21 pm

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: We are both in assisted living.
Dear Mike,
I am so sorry to hear of your troubles! It's especially hard when your own health is fragile. Very difficult situation.

My mother, like the loved ones of others here, has had delusions, terrible fears of kidnapping, carjacking, fire and so on. We found three things have helped.
First, and easiest, I banned the 6 pm "if it bleeds, it leads" news, because part of her problem seemed to be triggered when she heard something frightening on TV. This has helped, though my father backslides when I don't remind him.
Second, she has been on a low dose of seroquel, and that has been a lifesaver. She started at 12.5 mg 2x/day (the half-life is about 8 hours so it would wear off if just given once). She had to go to 25 mg 2x/day after a year or so, but seems stable there.
Most important is to have a neurologist who is familiar with LBD and can make wise recommendations and monitor how she is doing. Our neurologist is a colleague and friend, who is internationally known for his dementia work, and consults with our other colleagues, too, if there are questions.

i don't know where you live, or if you are close to a major medical center with specialists in LBD, but it is worth trying to get a referral and consultation. Or, if you know your doctor well enough and can suggest it, the doctor may be able to consult with experts for further advice.

Good luck - will hold you and your wife in the Light, as Quakers say.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Sun Sep 02, 2012 12:54 am

Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: We are both in assisted living.

Welcome to the forum, it certainly sounds like you are dealing with a lot. First of all, the hallucinations that accompany this disease can be frightening and unpredictable to witness. My uncle, who also lived in an assisted living environment, dealt with constant hallucinations, many of which sound very similar to what you are describing. His most common scenarios were that of former students in his classroom (he was a retired high school teacher) were coming after him and trying to get into his room and do him harm-he even called the police one time. He also saw bugs in his bed, and animals in his room. As his disease state progressed, the visions became worse. We had a neurologist examine him, who was very educated about LBD. I am not sure what medicinal approach they took, but I do know that they gave him something to help with this. Also, environmental changes seemed to help as well. We rearranged the furniture in his room, we also noticed that there was a mirror on his wall that he would look into and see other people there, we took that down. We asked him to participate in getting the room arranged in a way that made him feel secure. The nurses and aides that worked at the assisted living center were very calming to him, and would take his concerns seriously, and try and help him with "resolutions".

A neurologist's advice is needed on what can be done medically. I would also ask others in our forum group "Behavior Issues" because there are posts about this topic. I highly encourage you to reach out to that topic group on this forum and seek advice from others.

What you are going through will take every bit of your strength, but you will find that there are many people here in our online community that can help give you their first hand experience-I recommend posting your question under the topic Behavior Issues in our forum.

You've come to the right place for support and a listening ear. We are here for you, and hope you will engage with others who may be able to provide sound advice that you can use.

We will keep you in our thoughts. Let us know how we might help.


Kathleen B.
LBDA Forum - Welcome Moderator Volunteer

Sun Sep 02, 2012 1:44 am

Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: We are both in assisted living.
Dear Mike ~ Sending you and your wife many prayers & positive thoughts!

My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Sun Sep 02, 2012 11:19 am

Joined: Sat Sep 01, 2012 4:59 pm
Posts: 4
Post Re: We are both in assisted living.
Thank you all so much for your advice and comfort. I will do as suggested and repost in the behavior forum.



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Sun Sep 02, 2012 11:59 am

Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: We are both in assisted living.
First and foremost, I'm sorry you find yourself in this predicament. Glad you found this site, however. Secondly, I'm not a doctor. I read a lot and have had some experience in other things that may cause the behavior you describe. I'm sure you and your doctor have covered these things, but I just wanted to mention them just in case. The myotonic muscular dystrophy can include behavior problems. Not sure how severe nor at what point they would manifest, but worth considering. Also, I'm wondering if there may be something going on with her liver. When my dad's liver started to fail, you wouldn't believe (well I guess you would) the bizarre things he would see or come up with. Once they started treating his liver condition, he improved. Now, I'm just throwing these things out there and like I say, you have probably already ruled out these possibilities. Hope you find answers as I know this isn't easy for either of you.

God bless,

Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.

Sun Sep 02, 2012 3:20 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: We are both in assisted living.
Mike, I am so sorry for what you are going through. I think others have given you some good advice. I just wanted to say welcome and I hope you get your wife the help she and you both need so much. Come back here often for support and info. Sending you a big hug, 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.

Sun Sep 02, 2012 4:00 pm
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