You have an awful lot on your plate at this time. So sorry you are having to go through this. Hard as it is, try to keep positive thoughts and do something for yourself.

My LO gets very jealous, accusing and hard to deal with at times. He has not exhibited violence, other than threats...yet..and hopefully it will not come to that.

Each person is so individual with LBD it is difficult to know what tomorrow will bring. Be careful and be safe. You are in my prayers.

You said: "Here is what medication my husband is currently on. They are not done making changes and some will be dropped. He still has had some moments of hitting but has calmed down due to the meds they give him. He is on Excelon patch, Clozapine 100mg 1xdaily, Klonopin .5 2xdaily, Serequel 50mg in a.m. & 150 mg p.m, Abilify 25mg 1x daily, blood pressure medication, and PRN's as needed: Ativan, Valium, or Klonopin."

I hope this list is wrong because this is ridiculous. Clozapine, Seroquel, and Ability are all antipsychotics. Not everyone reacts well to Klonopin. And not everyone reacts well to Ativan.

Your husband must be sleeping ALL the time. These are seriously sedating drugs.

Can you find an LBD-savvy MD? I would suggest you use the Boeve "Continuum" paper as your guide for proper treatment:
http://www.lewybodydementia.org/docs/DL ... nuum04.pdf

Good luck,
Robin

Shawna,
No wonder he has calmed down, he is very medicated! I do hope before they are done with his med adjustments he is not taking all of this. I understand these behaviors need medication but this amount medication is a lot. I sure hope all the adjustments are successful!

Everyone reacts differently as others have said, but Ativan is a drug we found was very unhelpful for my father. He was either asleep or hallucinating when he was on it, with not much in between. He also had behaviour which the hospital interpreted as "violent" and we saw as trying to protect people from the things he was hallucinating....

Ditto on Ativan...it put my LO in the hospital with severe delusions....hard to believe it is PRN...I would trust NO ONE to deliver this PRN...I have seen cases where facilities just give it the minute anything happens. It took my LO weeks to recover from the dosage.

Last night my husband hit a male caregiver so hard in the head that my husbands hand is slightly swollen. I am meeting with the doctor today. I have asked them not to give him Ativan as well. I have called some back up doctors familiar with my husband as well. Hopefully we can get some major changes over the next few days. During visitation last night, I was walking him and there was some live music and he tried to dance with me. Just a little sweet blessing in the midst of this nightmare.
Shawna

Shawna,

I do hope that things will settle down soon, this is a horrable situation you're in, but I m very glad for you that you had a beautifull moment with eachother dancing

Rgds,
Sandra

Wow Shauna - my heart just cried and cried for you. I can so relate to all you are feeling, the roller coaster, the loss of your loved one, the stress of dealing with all of this and probably just wanting your husband back!. I was taking care of my 88 yr old mom with alz and my husband with LBD. It has been awful, a nightmare. My mom got suddenly very ill one day and was put in hospice for 12 days. Within 24 hours after she passed my husband went bizerk in the middle of the night with what they called a psychotic seizure. I think it was all the confusion of going to the hospice day in and day out and strangers and me being under the pressure.He ended up in the hospital 8 days during my mom's death. It was awful.

I had to place him in a care home which I hated! I cried and cried day in and out and had to work on top of it all too. It's such a hard thing to manage the meds. Either they sleep all day or are in a zombie state. He got a little better and I took him home for a couple nights in which he ended up attacking me in another episode. I had to call the police and they had to tazor him., It was awful. Anways, I know this is too long but I have him home with me with the help of a caregivers part time.

The risperadol helps a lot. After 8 months w/o any episodes and more decline he had another one this week. It was scary but I just left the room after miraculously getting a risperidol down him. I see they have melt in your mouth ones now,He went to sleep and when I came back in all was well just like the previous two, didn't have much memory of it except for he was so SCARED of whatever he was seeing and who I was.

You all are amazing people to go thru this. May God just reward you and bless you with better days ahead and give us all wisdom to deal with our sweet spouses and loved ones.

I too hate the peeing everywhere and now inappropriate pooping places too. I hope someday I can clean this w/o gagging and sweating to death. I also need to know the best way to rinse the poop out of pants and carpets etc... Any suggestions.

Oh the Adivan was HORRIBLE for my spouse too. I cannont believe they give it first thing. Maybe for regular alz people but not for LBD. It sent him into worse hallucinations and couldn't do nothing, not even sip from a straw. It was an ordeal!!!

Lori,
You might post your pop removal issue under the "Bathroom Issues" topic! And you may find some suggestions there already.
Robin

Shawna,

My father has LBD and he was perscribed Aricept and Namenda. The Namenda is supposed to help with the aggression. So far, it has worked for him. I do so feel for you. This is a terrible, terrible disease that robs those we love of the lives they once knew. The only consolation that I have through all of this is that when the good Lord decides to take him, he will not be aware of what is going on. God Bless you.

Karen

My husband has been on Namenda for two weeks now and it seems like it is making him worse. Today was the first time in all of this that I have seen any kind of agression from him. Told me to "get out of the way" He has always been a gentle, sweet man. I called the doctor to see if it would be safe to give him an extra 25mg of Seroquel. I was told it would be safe so he took that but it calmed him a bit but the delusions are very bad. Accusing me of letting people in the house and they are under the bed. We've looked under the bed of course and he scratched his arm on the bed frame. Now that is my fault and he says he needs to wear a bandage for the rest of his life. Tomorrow I will call the neuro that prescribed the Namenda. All of this happening in only five months. Every day I pray for guidance and please let me stay healthy for him.

I think that aggression is part of the normal progress. My dad, even with Namenda, is showing more signs of it. He sees people in his home all the time and then will ask me where they all went. He is now giving his live in more problems and even called me a name the other day. He has never verbally attacked me. When he is lucid and finds out what he has done, he is so apologetic. His neurologist has told me that the biggest problem with LBD is that it does not respond well to meds. That is not good news. I, too, worry about my health because I am his sole family caretaker. This is a life in hell for both us, the caretaker and the patient. I also worry that it is hereditary.

Karenda
It sounds like your Dad and my husband are having the same behavior. I have a call in to the neurologist this morning. His nurse advised me not to give the morning dose until she has talked to the neuro and gets back to me. This weekend my husband said I had let all kinds of people into our house. Once I caught him going out the door. He had my purse. I asked him where he was going and he said "I have to help ML" I asked him who ML was and he said "my wife". I asked him who I was and he said ML. He said his wife ran out of gas and she needs his help. I told him he didn't have to worry about her because she had a cell phone. I said lets take a walk, which usually calms him down a bit. On the walk he looked at me funny and said "You're ML" and I said yes, and you helped me didn't you. You have been a good husband for 51 years. I worry for my children. I have to make sure he is taken care of if something happens to me. I know every one says this but Take Care of Yourself and Blessings on both of us.

LBD is a family disease, in that I mean it effects everyone around the LBD person, aggression is common but not everyone that has LBD gets aggressive, I don't know what the percentage is as far as the caregiver leaving this earth before their LBD spouse but it does happen and that's why it is so very important to take care of the caregiver first and have plans made in the event there is a sickness with the caregiver. As to the meds many are trial and error, There isn't one medication specific for LBD yet.