My mom has dementia she's fine for a few months and then totally goes off the deep end.

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My mom has dementia shes fine for a few months and then totally goes off the deep end she does no who she is or where she is. she sees things thats not their thinks people are trying to kill her she goes to the hospital and after a week or so her mind comes back the doctors allways try to blame it on infection sometimes she has one and other times she doesnt its very frustrating and sad to see this happen about every three or four months has any one else had this experience or have any advice how to handle this her doctor wants us to keep her home and ride out the storm but we cant do it shes screaming and trying to get out of bed all night and wont listen to us we just dont know what to do but take her to er.

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I have a similar problem with my grandpa. As a specialist who deals in Alzheimer I can recommend you to visit a doctor, sometimes, people's advices are not good enough- Regrads.
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Very interesting Jeanne and Igloo. I've been concerned my mom may have LBD. Been reading the LBD site but still unclear to me. Thanks for the detailed experiences. Thinking of starting a thread for tips to recognize/differentiate, but too tired now, maybe F or S. thanks for what u shared. Kimbee
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One of the reasons that it is worthwhile to try to get a specific diagnosis if it might be LBD is that a clear and helpful list of drugs to be tried for various symptoms has been developed. Some drugs that are OK for Alzeiheimer's are potentially very dangerous for LBD, but LBD patients often respond better to some drugs than those with other forms of dementia do. So if a doctor has a suspicion that the underlying problem is Lewy Body, that can guide a treatment plan.
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Frandell & trunner - My mom sees a gerontology group that is with a medical school and large health science center. She has had all the main 3 dementia tests (MMSE, MOST and miniCog's) and brain scans so all that plus detailed personal history and observation has been what has determined Lewy over about almost a decade. She did not have Parkinson's like symptoms really until quite quite recently. She is mid 90's too.

My understanding is that LBD hallmarks are hallucinations and a shuffle walk and visual distortions.By shuffle walk....they walk shuffling their feet on the floor as if they cannot lift and flex the foot to walk. The visual distortions for my mom are that she often see's things as if they have a pattern to them...like the smooth tile floor seems to be cobblestone. Seeing dappling light patterns where there are none.
Do you know what a "cookie" is in film or photography? It's a large board that has a pattern cut out which light goes through to soften or harder the light - the way my mom described how surfaces look to her is as if a "cookie" is filtering her vision.
It's my belief that when she had a protein deposit break in her brain she would have a Lewy episode and see hallucinations or visions or feel threated and then it would go away. She is now where I think the level of protein deposits are such that her dementia is pretty constant but still is pretty functional & ambulatory.
The meds for Lewy that work well are Exelon - patch better than pill.

Most family medicine MD's or internists just don't have the training and experience to differentiate between the dementia's. As Jeannie so aptly said on another post.....seeing a gerontologist if your are elderly is like a child seeing a pediatrician
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trunner0, your mom's doc is sort of right, in that the same pathology (protein deposits in the brain) that is present in Parkinsons is present in Lewy Body Dementia. A percentage of persons with Parkinsons eventually develop LBD dementia symptoms. Then the disease is called Parkinsons with Dementia (PDD). If the dementia symptoms come first and are strongest, the disease is called LBD. Generally there are also Parkinson-type symptoms present, but they may not appear immediately or strongly. Parkinsonisms are very common in LBD, but are not required for a diagnosis.

For diagnositic purposes, there is a list of "core" features of the disease, and additional symptoms that can help identify it. An excellent website where you can find this list and a lot of other information is LBDA.org. It might help to read up a little before you see her neurologist, so you will have specific questions in mind.

Has your mother had sleep problems, such as acting out vivid dreams? Flailing her arms and legs in sleep as if running or punching, etc? This may not be somethig you are aware of, since she does not have a bed partner, but perhaps she's mentioned sleep problems .. ?

Whatever the diagnosis, my heart goes out to you.
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I asked her doc about Lewy Dementia because it sounded just like her and he said no thats not what she has because she would have Parkinsons like conditions when I take her to the neuroligist I will talk to him tham
nk you appreciate it
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Igloo572: how did they determine that it was Lewy Body. That sounds like my mother. The weird part is that she remembers the hallucinations and delusions so well.....even a year after!
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trunner - She may have Lewy Body Dementia rather than Alz. Lewy is quite different than Alzheimers.

My mom has Lewy and with her, she has episodes in which she will have vivid hallucinations usually animals (they are nonthreatening) or very distinctive threats against her (like someone is trying to become her, or kill her, or someone is poisoning her and there is a specific story as to how it is being done). For my mom, she was able to do for herself for a very very long time even though she had Lewy dementia. I put her into IL when she was 90 and she was there and functional for a few years. She would have an episode about every 3 - 4 months and then be OK. The tipping point with her was an extreme weight loss due to her not eating because the food was poisoned. She now is in a NH for about 2 years
& has an episode about every couple of weeks & is hallucinating people more now or maybe she is just used to the animals that she doesn't say anything. LOL.

If you can get her to see a gerontologist that would be great as they will be able to evaluate her to see what type of dementia she has and do the more appropriate care or medication tailored for the type of dementia. Good luck.
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Check your local hospice. Most do consults re resources, psych assessments, care planning, medical social work and, usually also offer services for life-limiting illnesses such as dementia. In your area, maybe Sutter VNA Hospice? Services may be sliding scale or very low cost? Worth a call for sure. Let us know what you find out?
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my dad died long ago but we live in california and she id 97
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