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Mom has Lewy Body Dementia. She was diagnosed about two months ago. It started with two personal traumas almost a year ago. Her boyfriend of 17 years died in November. She had been hearing voices just before and didn't like them. Three weeks after his death, she broke her hip. The first voices went away while she was in the hospital for a partial hip replacement. When she came home, new voices gradually appeared. She liked them. Things with them have steadily gotten worse; killings, rapes, guns, etc. have now entered her coversations with these new people. She has hearing and visual hallucinations that are starting to disturb the neighbors, mostly during the night. I am now afraid for our safety. I won't allow her outside until 9am. This morning she lit a cigarette for the first time in house. I have recently been prescribed Xanax for stress, which I am definitely feeling this morning with these new events. I am scared.

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I'm going to assume that if your mom is lighting up a cigarette and you don't let her outside until 9am, that she is still mobile. It's time for her to go into a nursing home because it's not safe for either of you to keep her at home anymore. She needs to be in a locked and 24-hour supervised memory care facility. They will also put her on medications that will help with the serious mental illness she has from the Lewy Body Dementia. Good luck to you. I hope you can find her placement soon.
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When my mom started having UTI's, she had seven of them in ten months. The docs finally prescribed meds that helped. Time to get her rechecked.
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This may sound obvious, but have you been in touch with your mom's doctor to apprise him/her of the worsening situation? Hallucinations that involve killings, rapes, guns, etc, and that disturb the neighbors are worrisome. Not to mention, if her behavior is disturbing the neighbors at home, her behavior will also disturb her neighbors in a Memory Care ALF. In other words, she needs medication to calm down and to minimize or stop these violent hallucinations entirely. Yes, a UTI could have worsened an already existing condition, but if she's recuperated and off of antibiotics, I doubt the UTI was ENTIRELY responsible for ALL of this behavior.

The next time you are worried for your own safety, I suggest you call 911 & have your mother transported to the hospital for a psychiatric evaluation. You can't be living in fear in your own home; the stress of that will send YOU to the hospital in no time! If you can get her properly evaluated and medicated, THEN you can place her in a Memory Care ALF that has experience with LB dementia.

Best of luck!
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jojolavender Oct 2020
The voices in her head threatened to kill/rape me and mom only. One of them told her that he killed me while she was in the hospital with blood clots. The nurse called me immediately to see if I was okay.

I'm worried that what her voices are telling her about the neighbors will get out to the neighbors. Last night she was waiting for the lady across the street to kill herself. I know the lady and that wasn't happening.

Nothing real to bother the police with. She has been completely evaluated by a psychiatrist, our family physician, who gave the referral to the neurologist, knows and agrees with the LBD. She is on meds.
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When we start asking ourselves if it is time, it is time.

Has she recently been checked for a UTI? Yes, a UTI, whenever there are sudden changes, should be checked quickly.
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jojolavender Oct 2020
Yes she had a UTI recently.
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I think you know deep down that it is time for a facility.

Mom is suffering and your home is no longer safe, for her or for you. Hearing all that violence in her mind has to be torture! A facility can get a medication regime that will help her, and will be able to handle it when she is panicking. They have the meds, space, and training to handle it all. You can't do this on your own and it's taking its toll on you, as it would on anyone! If your health fails, what will become of Mom then? Needing Xanax to just live in your house with her already shows you're on the brink. This can't go on.

Did she ever have voices like this before, back in her younger days? The description of these voices are more in line with schizophrenia.
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jojolavender Oct 2020
The voices started very nice. She really liked them. They have changed so much. Violent, dirty minded, bossy, etc. They are very real to her and they even make her cry, which is so sad to see. She believes them over me. No voices before that I am aware of. Schizophrenia was ruled out months ago.
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From what I understand is Lewy effects that part of the brain that controlls violence and aggression. You Mom may need meds for her hallucinations. She needs to go to a neurologist and maybe as some members have suggested at one time, a Psychiatrist that specializes in Dementias.

If Mom gets violent, call the police. This could be hitting you to trashing the house. Do not allow her to be sent home until she has a psychic eval. And even then, you don't have to take her back. At that point, you may want to allow the state to take over.
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jojolavender Oct 2020
Hi JoAnne. I'm Joanne. She has seen a neurologist and was diagnosed with Lewy Body Dementia. She is on meds which helped but things have gotten worse. I am going back to the neuro tomorrow to get an appt as I can't seem to get one any other way. She had the psych eval prior to the neurologist. Schizophrenia was ruled out by both.

Mom has called the police twice. I woke up one morning to check on her and heard a voice, mail. She was talking to the police about people in the basement with guns and such. No basement as we live in a mobile home. I got on the phone and told the police she was being evaluated.

About a week and half ago I woke up to find my mom and four police officers in our living room. Same complaint. I took one aside and told him about the LBD and he had already figured out something was wrong.

This morning I was awakened by a neighbor at 5 telling me I needed to get mom in the house asap. She talks to the voices in her head and says some pretty nasty things out load which the neighbors can hear. I got her inside but then stopped her when she wanted to go back out a few minutes later. I had to force her back inside. She loves sitting outside in the swing. It is much cooler now (we live in Mesa, AZ) and she loves it out there. No more during the sleeping hours. We can't afford to get kicked out if people start believing what she says.

It really feels good to talk to someone other than my three sisters.
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JoJo, does she have other symptoms of Lewy's as well?
When my brother was diagnosed with "Probable Early Lewy's Dementia" I asked how they diagnosed it as Lewy's. I was told "by the symptoms". He was very early Lewy's and he died in a year of something else, so I have no way of knowing how it might have progressed. When I looked up symptoms it seemed he was classic; but none of his symptoms matched your Mom. To ME hers sound more like mental illness, but I bet I am missing a whole lot of symptoms that are there.
I usually end up writing a "book" rather than a post. If you would like to discuss or exchange symptoms, do private message me.
Are you Mom's POA? Have you discussed her rapidly worsening symptoms with a doctor? And was it a neuropsychologist that gave this diagnosis? Does she live with you? I think the time to consider placement in general is when the impact on your life is too much; it sounds like you are there.
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jojolavender Oct 2020
She has recently presented visual and hearing hallucinations separate from the voices as well as paranoia about her money and cigarettes and her voices stealing from her room.

I do have her powers of attorney for medical and financial. And her will has been completed.

We have lived together for almost two years in a mobile home. She was fine then but two traumas seemed to have changed that. She recently had blood clots in her leg the same leg as the broken hip.
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Your safety is important. Mum’s safety is too. You cannot keep both of you safe from Mum.

A care facility will have staff 24/7, Mum will be safe and you will too.
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