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 New from Michigan - long story 
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Joined: Mon Feb 16, 2009 12:04 am
Posts: 47
Location: Michigan
Post New from Michigan - long story
Hi, what a relief to find this website and forum. I have been reading articles and posts for a few days and am very thankful to have found the resources and support offered here. Although the diagnosis "LBD" has not been specifically stated, my dad (85) definitely has the symptoms of LBD. He is at home with my mom (84). He had some early issues for a few years that we thought was just aging issues such as insomnia and forgetfulness. In March 08 he developed celluliltis that turned out to be antibiotic-resistent and was treated with Zyvox. He was hospitalized and in rehab for about 30 days -- then a trip to the ER due to an episode of confusion turned a corner for him. He was given IV Phenergan for nausea (when he really just gagged on some mucous) and he began having seizures. He was given IV benadryl and Ativan to sedate him....then started on Cogentin. Within three days he was in a delirious/psychotic state. They wanted to give him Haldol, however, as an RN I knew that it could cause more agitation, so we refused any and all drugs. He spent the next seven days in an agitated, delirious state, not sleeping day or night. We stayed with him in the hospital around the clock. The MD's told us it was "hospital psychosis" and dementia and wanted to discharge him to a nursing home. They denied that the drugs had anything to do with his abrupt change. I challenged the resident MD regarding discharge as I knew a nursing home would not accept someone who was so combative. They then called in a neuro-psychiatrist who agreed that he needed to be observed in the hospital. After about a week, he calmed down enough to feed himself and walk with assistance to the bathroom. We took him home in April and over time he settled down, though never returned to his pre-cellulitis state. Since then he has had several hospitalizations, another bout with the cellulitis and Zyvox, and finally in October got on the Exelon patch. It cleared him up a lot though he still had a lot of sleep issues. We have noted, as all of you already have, that any change in his physical environment or health can set him off with agitation, combativeness, sleeplessness, etc. He also has cardiac, pulmonary, renal, and GI issues, plus arthritis & some Parkinson-like tremors - but, he is a tough old Marine with a strong faith in God and I love him dearly! He has many lucid days mixed with hallucinations (which he has learned are not real), delusions, periods of confusion and agitation and much difficulty with walking. He is continent, good appetite and able to feed himself, dresses with some assistance. Lately he has not been sleeping and was recently started on Amoxicillin for possible lung infection...last night he did sleep better. He has a lot of arthritis pain and can only take Tylenol due to being on Coumadin. He is on Melatonin for sleep but we have not been consistent in giving it to him.

My mom is having health issues of her own, however, and she is about at the end of her rope. I transport to all MD appointments and spend the night with them as needed to allow mom to sleep. My mom calls him the "mystery man" as he is so unpredictable. We have tried to maintain a good humor as much as possible.

This has been a long story and is only the tip of the iceberg as to all of the journey we have been through. However, it is with much relief that I share this in hopes that what we have learned can help others, and that we can get some ideas to assist in his care. I have contacted someone about a local support group and have printed off the Boeve articles and need to read them. I am looking forward to getting more info on sleep and pain medications; I also requested the ER card -- our greatest fear is taking him to the ER/hospital and losing control of drugs and treatments.

I am a retired RN, though never dealt with LBD on a professional basis, I worked in a nursing home, pediatrics and cardiology. It has been many years since I did bedside nursing, but experience with my dad plus my in-laws who recently passed away has given me much insight into aging issues including financial, legal, etc. I trust that my experiences can be supportive to this forum. Thank you for reading this far!!! Sharon

Mon Feb 16, 2009 12:27 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Dear Sharon,
Welcome to the LBDA forums and I am so glad you found us and find the many resources helpful, I was sitting here reading your story thinking , how many people have come to learn of LBD and dementia's in the way that you did with your father but at least you being an RN knew enough about the meds to be concerned as to how they would effect your father , where many of us just don't know and trust the doctors to do the right thing for our loved one's.
I am glad your father is getting some good results with the exelon patch we also used exelon in our situtaion but back then the patch had not been developed yet, I am sure you will be an asset here and please feel free to join in all area's as the comments or questions apply.
Good Luck!

Irene Selak

Mon Feb 16, 2009 1:10 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Hi Sharon,

Welcome to the LBDA Forum though sorry you've had to join us. I would imagine that you have dealt with LBD in your time at a nursing home but the resident was not properly diagnosed.

Phenergan, as you figured out, is a big time no-no for LBDers because of its anticholinergic and antidopaminergic properties. Zofran, which is now available as a generic, is the better choice. Benadryl is a no-no also due to its anticholinergic properties.

Have you checked out Boeve's Continuum paper for a good treatment regimen of those with LBD? You can find it on


Mon Feb 16, 2009 2:03 pm
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