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My sister and I have lost both parents at an early age. Right after our mother passed, our grandmother started showing signs of Lewy Body dementia. We are the only family she has left and are responsible for her. She is at home with care. She sees things that are not there and has had APS called on us because of the constant police calls. She is very angry and vile to us. She is "there" enough mentally to where her comments hurt, but we try to keep in mind her mental state. We have exhausted every resource to help her and are running out of options. In her mind we are mean to her and say terrible things to her and on top of her verbal abuse, she threatens us with taking us out of her will and contacting lawyers. It doesn't matter what we say or do, we are always the bad guy. I'm just at a loss. This is affecting my mental and physical being. I can't help but think this mean creature is somewhat her true self amplified by the disease. Any advice would be appreciated. I am almost to the point of living her from a very, very, very far distance.

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A thought about her taking you out of her will: Unless she is extremely wealthy there is a good chance that there will not be anything left to leave to anybody. Treating dementia is VERY expensive. We went through all of our savings, life insurance policies, MY pension, and then had to apply for Medicaid. Dementia can be financially devastating.
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I made the LBD journey with my husband for 10 years. It is considered to have one of the highest caregiver burdens of any dementia, because of behavioral changes that often occur very early in the disease. For example, hallucinations are common in the late stages of many kinds of dementia, but they are almost always one of the first symptoms in LBD. So if you are finding this extremely hard, you have lots of company!

I'd like to correct one thing you said: " It's horrible because we know she can't help so much of it." Yes, it is horrible. And she can't help ANY of it!

People with LBD have spots of a mutated protein (the "bodies" that Dr. Lewy discoverd) in their brains. Symptoms depend on where the spots are located. My husband donated his brain to research and I received a copy of the autopsy report. These spots were found throughout his brain.

It may help you a little to accept that GM has damage to her brain -- actual physical damage that can be seen. Unfortunately the only way we have to see it know is after death. Research is trying to come up with ways to do that earlier!

(By the way, people with Parkinson's Disease with Dementia also have these same spots in their brains.)

This isn't going to be easy any way you look at it. Here are some suggestions:

1) If you once had a loving relationship with GM, hang on to that and remind yourself of it often.

2) If the hallucinations are benign -- if they don't frighten or bother GM -- just go along with them. If she sees bunnies hopping along the wall, say "Well, they don't seem to be doing any damage, so that is good." If they frighten her, comfort and reassure her. If she sees bad guys looking in her window, tell her you'll report it to the police. Never try to argue that her hallucinations are not real. To her they are very real.

There are some drugs in the late research stage to help handle hallucinations in LBD, but I don't think they are on the market yet.

3. A wonderful source of information about LBD is the LBD Association's website. They also have a number you can call to see if there is a support group for caregivers in your area. That can be amazingly helpful in not taking it personally. You hear that other caregivers have these experiences, too.

4. You think that "this mean creature is somewhat her true self amplified by the disease." Was she mean and vile before the disease? You cannot assume that all those spots on her brain are just amplifying her "true self." Depending on where they are they could be creating considerable distortions and alterations.

5. If you can possibly locate a doctor who specializes in treating Lewy Body Dementia it would be worth travelling some distance to take GM to that doctor. It would likely be a neurologist or a geriatric psychiatrist. Such a specialist will understand the interaction of drugs and what seems to work best in this disease.

Best wishes to you all!
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At home with care can be very boring. Would she do better in a facility with more people around her?
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Thank you so much JessieBelle! Yes, she is on Aricept along with an antidepressant and xanex. We have taken her to the doctor multiple times to change or look at her medication. Nothing seems to help. Usually when she gets really bad, it's a urinary tract infection. Most of the time, it's just her. She sees things every day and usually the same thing. It was happening around 3 until evening. Now it's more frequent. We decided it was sundowners, but now it's all the time. She can't walk and has lost a lot of mobility. This puts her in a deeper depression and makes her act out more. She has completely alienated herself from all friends and now her only family is slowly pushing back. It's horrible because we know she can't help so much of it, but she has just become so vile. It's heartbreaking!
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gdskriskin, I've read that LBD delusions, hallucinations, and mood can be hard to handle in the early stages of the disease. Is your gm on any medications? I've heard that people with LBD often respond well to Aricept to help alleviate some of the symptoms. Talk to her doctor about medications that could help with the symptoms and to help calm her down. We have a few members on here who have loved ones with LBD. I hope they will be along soon and provide more helpful answers.
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