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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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Trunner0, how sad. I don't have any ready answers now but I'd be happy to do some research for you. How old are your parents, and what state do you live in? You may find help (or not) by letting the social worker at the hospital know you feel unable to care for her at home and ask them to help you explore other possibilities for some better planning to meet her needs. If they try to refer u to social services and dismiss your concerns that mom needs an adequate discharge plan, start going up the chain of command. Point out that her going in and out of the hospital is expensive and not getting to the source of the problem. Point out she is declining even tho infection is improving. What can be done to prevent re-admission if she is sent home-if multiple infections are the cause of the psychotic episodes, why is she having so many infections? How can that be prevented? Each state has different rules for Medicaid. Surely there is a way for a vunerable senior to access needed care. Maybe the doc needs to prescribe or order some home care assistance. They need to understand the limitations you, spouse and dad have in caring for mom- don't be shy about letting them know.
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I wrote in my discussion about my mom going off the deep end and the doc tellig us to ride out the storm well she allways comes out of it and returns to normal but this time she getting worse shes returned to seeing people and things that arent their she tries to eat things that arent their I brought in different doctors and they all blame it o her eye infection which doesnt make since because her eye is getting much better their going to release her soon and will be sending her home I dont know what to do I dont think I can take care of her the way she is she doesnt qualify for medicad because she owns a home selling the home to take careh of her means were homeless my husband is on disabilty and I have no income because I quit my job to stay home and take care of her at this point Im lost any thoughts on what I can do would be appreciated
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I wrote in my discussion about my mom going off the deep end and the doc tellig us to ride out the storm well she allways comes out of it and returns to normal but this time she getting worse shes returned to seeing people and things that arent their she tries to eat things that arent their I brought in different doctors and they all blame it o her eye infection which doesnt make since because her eye is getting much better their going to release her soon and will be sending her home I dont know what to do I dont think I can take care of her the way she is she doesnt qualify for medicad because she owns a home selling the home to take careh of her means were homeless my husband is on disabilty and I have no income because I quit my job to stay home and take care of her at this point Im lost any thoughts on what I can do would be appreciated
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I have parkinsons and my husband has a really bad back he has to wear a body cast he is going to hhave surgery in a few months due to my mothers condition I quit my job to take care of her we are on a very fixed income. I have no help being the only child we have to hire people to come in Im glad I found this website I feel I am not alone anymore thanks for all thr responses right now she is in a home but will return in a few weeks medicad will only kep her there a few weeks hoping she makes a turn around and becomes herself again before she returns the confusion usally clears in a few weeks thanks again for your support
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My step-father was seeing things and then he went into the hospital. As soon as they started giving him oxygen, no sightings. Then, they found out that he had two quarts of fluid on his lungs.After the fluid removal, he hasnt "seen things" since. He has been fighting the diagnosis of congestive heart failure and has shortness of breath, but weird stuff
Also, the 700 Club had a thing about the dementia being helped or good results in days by the use of coconut oil. I have started that by making an almond fudge type thing. Am trying that on them. Started that this week. But i made the candy, then left them, he and my mom with it. Hopefully, they will nibble on it or their
care- givers will remind them to eat it. Someone on this site mentioned that they had used it with good results.
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I've had a similar situation with my Dad, who's 87, diagnosed with mild dementia in january. He is "with it" most of the time, but about a month ago he had an episode where he didn't know me, and thought I was trying to poison him by offering him some water, and his behavior was off for about a month. Turned out he had an abcessed tooth, and after taking an anti biotic was ok for several weeks til the last few nights, confusion and seeing things.
I'm thinking that he may have been a little dehydrated, since the weather was so hot the last few days.tonight he was ok, but the weather cooled off, and my brother was with him most of the day making sure he was drinking enough water.
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My mom continually had UTI, Low Vitamin D (her body seemed to eat it up), low potassium, low Vitamin B12 and Dehydration. All general health issues that can cause 'look alike' symptoms of dementia. Change doctors, have a blood panel done for ALL of these issues and make sure she isn't on any type of RX drug that's causing odd behavior as well. She's in there, give her a chance by doing blood drawal and find out what's off balance.
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I have never heard of spells of drmentia. As already said it is more a steady decline. Yes infections can cause dementia symptoms especially UTI. But why is dr not treating better? I agree you need another dr at least for a second opinion. Its reallyhard when dr doesnt work with you. Take care and God bless you
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I agree w daily chocolate. Infarc dementia causes stepped decline and UTI's can cause this type of behavior; but something seems amiss. If UTI's, they should be considering a medication for prevention. When someone is admitted for a week at a time, that's not "ride it out at home" symptoms. Her behavior sounds like mental illness. Get her full hospital record of these episodes and take them w you to the next doc. Good luck. Hope you find some answers soon. I'm fond of university based geriatrics clinics for good evaluations. They can usually help you find a good doc close by if they are too far away for on-going care...
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I think it's time to find a different doctor, or at least get another opinion. His advice to ride out the storm borders on cruelty for both you and your mother. (do not ask your current doctor for a recommendation - find someone else on your own or by asking trusted friends/clergy/other professionals). Dementia patients usually are not "fine for a few months" and then have the symptoms you describe. I think there is more going on here and I hope another dr. will get you on the right track for evaluating her health and behavior. I'm sorry that you must deal with this. Take good care of yourself, too, and don't feel guilty about asking someone else to do "check on mom duty" for a few days if possible....Family? Your friends? Her friends? Church members? Best wishes as you seek answers.
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I have a similar problem with my mother. She is 87 and legally blind. She lives next door to me and although always a little confused. Someone is there every morning by 7:45 am to prepare breakfast and clean and I do her lunch and dinner and stay with her every night a cople of hours until she goes to bed. Every few months, she will wake up and think she is in a different house. She is very disturbed by this and mad at me because she thinks I did it. Then allow a sudden, she stops thinking that BUT she still remembers that she was in that "other house" and wonders why we did that.
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