Follow
Share

My dad has Lewy Body dementia and Parkinson's. His caregiver is my mom but he does not recognize her and does not trust her. He hides important mail and is not nice to her. She is having to hide EVERYTHING. What can we do?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
My DH has LBD as well. It's a terrible disease. Work with the doc to adjust his medications, including anti-psychotics. If it doesn't improve, he may have to move to a memory care facility in order to protect your Mom.
Helpful Answer (5)
Report

This delusion is common enough to have a name -- Capgras syndrome. One study found about 17% of persons with LBD experienced it. Now that you have its name you can look it up on the internet and learn more about it.
Helpful Answer (6)
Report

Thank you for your responses. How does a caregiver cope? Do you have help? How is this help paid for? This situation has brought my family to our knees and reading your responses is comforting.
Helpful Answer (1)
Report

Many of us pay for caregivers in our home from our savings. When the savings are gone, Medicaid (not Medicare) kicks in. If Mom and Dad have more than a few thousands in savings, it makes sense to get a Certified Elder Care Attorney involved to protect assets for Mom, to the extent possible. And yes, I feel your pain in dealing with your situation. You will find more info on the financial aspect of this horrible disease at alzconnected.org/discussion.aspx?g=topics&f=151
Helpful Answer (2)
Report

My husband has Parkinson's and Parkinson's Dementia, which is very similar to LBD. He used to think that I was one of his children and kept asking them (me) "what did you do with Pam?" And I was standing in front of him the whole time. The longer it went on, the harder it was to "reset" his mind so he would see me again. His neurologist put him on Aricept. What a life saver! After 6 weeks to the day that he started taking it the hallucinations stopped! That was three years ago and still no recurrence. I have heard of others having similar experiences with it. If your Dad is not on it already, ask your doctor about it. My husband also takes 1 1/2 tablets of Seroquel at night, an anti-psychotic medication. That is a very low dose but enough that it has stopped him from acting out "dreams" at night and keeps us both safe.

Blessings to you. Hope you can find the right answer.
Helpful Answer (4)
Report

Thanks Kitten! I just left a message for the dr to see if we can try it!
Helpful Answer (1)
Report

This is difficult.
With LBD the person can become violent and this might be the time that you may have to consider placing your Dad.
This is a big step and I am sure that your Mom will not like the idea but it will get more and more difficult for her.

A few ideas for you though.
My Husband loved going to get the mail. I would go out first and grab the "important" stuff and leave the junk mail. That way if something was lost it was no big deal. I would also go out with a few pieces of junk mail just in case there was no mail I would put the mail in for him to get out and bring in.
I also got a small safe to keep important papers in, I also had to hide the car keys as he took the car of 2 occasions.
Lucky for me some of these phases did not last long but you always have to stay 3 steps ahead.
I do hope your Mom has found a good support group to attend. I can not tell you the information, support and guidance that a support group give. And you find that you are able to give as much as you get since there are always new people coming into a group and they are where you were a few months ago so you can pass on what you have learned. Not to mention the socialization that is so important.
Helpful Answer (2)
Report

Other than his spouse wearing a cute pin that says "wife" (not meant to be acrimonious), evenso he may not recognize that. He may require a different home.
Helpful Answer (0)
Report

My husband also has Parkinson's with dementia or LBD with partial success with seroquel or quetiapine. His neurologist also prescribed Nuplazid which is made especially for Parkinson's patients with delusions or hallucinations. Both together are extremely helpful. I also read that Capgras is visual but not auditory, so if you speak before he sees you it can help him make the connection.
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter