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My mom was finally diagnosed with Lewy Body Dementia (LBD). After wrestling from doctor to doctors and multiple labs and imaging. The neurophysioloogist said that she is 83% positive that this is LBD. I can live with the confusion, the paranoia but not with the starvation.
There is so much that I would like to say!
Recently I was called by the memory home because she was extremely lethargic. I got there, she was unresponsive!!!! We carried her to ER, the neurologists did every test in the book but could not figure out why in the heck she was not responding to painful stimuli. You could have cut her leg she wouldn't have budged. On the 3rd night of our stay, she just snapped out of it. She was back to "normal". Keep in mind that all she received was Fluid, Vit B12, thiamine Vit B1. They also started her on namenda 10 mg.


We talked for so long. I could not believe my eyes!!! Was this really happening!? We even started making plans. (how she is going to live with me to gain all her weight back, I don't mind driving her everywhere. she was eating, I WAS ECSTATIC!!!).


Well, that lasted for about 10 hours, then as she described it herself. She felt hyperactive/agitated, she could feel hallucinations "creeping in". We tried deep breathing exercises, relaxing music. Who was I kidding?


She was back into confusion. Chasing me down the hallway because she thought that she misbehaved and the nurse is getting upset. Sad does not begin to describe how I felt.
I put her back to the memory care home that same day.
About 4 days later, I picked her up to hang out with her, I could not believe my eyes!!!! She looks like a toothpick. I am afraid the wind will blow her away. I weighed she was at 96.5lbs!!!!!! (just a few days ago at the hospital she weighed 100.6lbs)
WHAT DO I DO???? It is not like she can't swallow. When we hung out, I gave her a slice of cake, 2 ensures, and 4 honey coated shrimps and she ate them all with some prompting.
I have to say that it has always been a struggle to get her to eat anything but her staying in a care home made it worse!!!
The care home does a great job trying to make her eat. They sit with her, they encourage her, I call everyday to remind them to tell her that I want her to eat.
When I ask her, why don't you want to eat, she comes with these stupid reasons that really don't make sense. For her she has to have a reason to eat, and if she does not find the PERFECT reason, she will not touch the food even if she is starving. WHAT THE HECK!?


How much more can I do? I am out of ideas!!!


Please let me know if anybody out there have delt with LBD.
What she misdiagnosed? what kind of dementia sets in 6 weeks!?
Is she schizophrenic? she is 72yo, isn't that too old to be diagnosed with schizophrenia?
PLEASE FEEL FREE TO COMMENT, I need all the ideas I can get!?

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Do you know if your mother ever suffered from any kind of eating disorder when she was young? Like anorexia or bulimia?
Was she ever obsessive about her weight or others and constantly on a diet or preoccupied with staying thin?
If it's yes to any of these, the dementia may have brought these obsessive/compulsive behaviors back.
Check with her doctor about putting her on some anti-anxiety meds. It could help.
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Reply to BurntCaregiver
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I have that issue with my 91 yr old dad. I told him sooo many times that he was committing a slow and painful suicide. I did 3 things, (he still lives with me). I had his Dr order an IV, 2000ml saline for his extreme dehydration, the #1 cause of 1,000 things. #2, I had the IV lwft in for 5 days (in case he needed more and as a reminder that he would end up in a nursing home if he cont'd to not drink or eat.). #3 has helped the most. I make sure he prays and thanks God for his food before he eats and to be thankful for having water. This was the turnaround for him. He eats every bite most of the time and drinks to avoid the IV. After just 3 weeks, he has energy, takes showers, gets dressed, !!!!. He looks 10 yrs younger. Encourage her to be thankful. Something all of us should always be. My dad also won't eat alone. He wants company just to sit with him. Isolation is devastaing. God made us to interact with others, especially those whom they love.
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Reply to Sle247365
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If your mother is found to have Creutzfeldt-Jakob disease, a possibility in Beatty's reply, there is very little you can do and the end may come very quickly. A young bride I knew when we were both in our 20s collapsed so quickly it was really frightening for everyone who knew her even slightly.

Watching my own mother die of cancer in 3 months was very hard, but at least it was understandable. She, the doctors and I all knew what was happening. You are bewildered and terrified, and no-one has the knowledge you want. Perhaps the best you can do is to accept the situation, bless any good times that you still have together, and try not to feel that you can and should make everything better. I hope that her end of life is peaceful for both you and her. Remember that it comes to us all, and most of us would hope that it will be quick and pain free for ourselves and those we love. Peace and love, Margaret.
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Reply to MargaretMcKen
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I am so very sorry you have this situation.

I believe LBD can be quick onset & that symptoms can vary significantly.

But I have heard of other rapid progressive dementias, but without knowing any more. So looking online I found;

"Rapidly progressive dementias (RPDs) are dementias that progress quickly, typically over the course of weeks to months, but sometimes up to two to three years. RPDs are rare and often difficult to diagnose. Early and accurate diagnosis is very important because many causes of RPDs can be treated".

"Some causes seemed to be vitamins deficiencies, auto-immune diseases, seizures, cancer, prion diseases".

"One type is a prion disease called Creutzfeldt-Jakob disease which causes a type of dementia that gets worse unusually fast". 

I know having a diagnosis & then a treatment plan is the usual pathway. Sadly, sometimes there is no dx & sadly sometimes no treatment works.

Is there a hospice support you could reach out to? I'm not saying there is no hope, but sometimes people don't eat for reasons we can't see. Their body or brain is just not working right. Can I ask, not to upset you, but with sympathy, if this is some dire awful untreatable thing, how would you spend your next visits with Mom? What do you like to do together? Sit in the garden? Chat about the good days?

(((Hugs)))
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Reply to Beatty
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I might read all I could about the condition, talk with others who have family members with the condition and arrange a discussion with her doctor to ask questions about the diagnosis and prognosis. I was under the impression that Levy Body Dementia is marked by fluctuating episodes of unusual behavior and symptoms. You can ask her doctor about her appetite, too. Most dementia patients that I know eventually lose a lot weight and may have periods with little appetite. Even patients who eat well often still lose weight. Dementia is due to damage to the brain, so unusual behavior is common. I wouldn’t expect to receive logical or correct answers to questions. Certainly, your love and support will bring her comfort. I hope you find the answers you are looking for. Perhaps, someone who has a LO with LBD will chime in.
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Reply to Sunnygirl1
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