My husband has lewy body dementia. I know that the symptoms of lewy body and alzheimers are very similar at the later stages of the disease but there are differences in the beginning. My husband has started asking me if I would do things, such as take a walk with his wife, ME. This has been occurring more often in the last few months and yesterday he told me there was someone else in the downstairs bathroom, so he had to use the one upstairs. There was no one else in the house, so I am suspecting he saw his image in the large mirror. I would really appreciate hearing from the other women on this site whose DHs suffer from lewy body and could they tell me if this is normal. I am guessing that my husband has had this disease for at least 3 years. There are no support groups for lewy body spouses anywhere near where I live and I have absolutely no one to talk to about this. I'm also trying to find a therapist but have no idea where to start looking for one. His issues have been mainly loss of executive function, but this new development is starting to frighten me. Thank you for listening.
It looks like you are new here. It brings back the time I was new here. I found much help here and I'm sure you will also. My persomal dementia problems are over now but I can relate to yours with heartfelt saddness. I am not as well qualified to give advise as others, but if you just hang on, they will take care of you................You can do it, Lady Golfer,....Hang on.........
My husband doesn't have lewey body dementia so I am sorry I can't help. Hopefully someone will come along to answer your questions. Also, you may wish to go to the top of the page with the blue tabs and "search" for topics which may relate to your questions on topics that have been discussed over the years.
My heart breaks for you as you are dealing with the continual struggles of being a caretaker. Hang in there... You will find that there is lots of support here with many issues.
My AD husband did not always know just who I was. One time I told him, 'I'm right here,' but he said 'Oh, no you're not.' He was looking right at me. He also talked to that nice man in the mirror and didn't recognize my reflection when I stood right beside him. Sometimes he thought someone was in the house & I told 'them' to go away, and 'they' did. All of this can be very disturbing when it first happens, but you get used to it as time goes on and then something else comes along. Just don't try to bring him back to your reality, you always have to just agree, even when you know it's not right. You can't win an argument and even if you do, it will come up again and again. Sometimes LBD patients fall more frequently, but as you know, most of the symptoms are very similar to AD and, for the most part, you learn to respond in the same way. I think you will do well to stay on this site, but you might also look up sites for LBD and find others you can talk to as well. We're here, someone always is.
Thank you all for your support. I needed those hugs today. Bettyhere*, I have looked at the Lewy body forums on the web, but none of them compare with the support and information here. Divvi pulled up past discussions on Lewy body that was very helpful. Thank you all again. I don't know how you all manage. Some days I think I just cannot do it one more day. I am at the dentist this morning, and it is a treat just to be out of the house. How sad is that? A trip for a dental cleaning is an outing! I pray for patience and strength every day. Some days it works and some days it does not. I am so afraid of the future, I feel paralyzed. I am only 66 and a healthy 66 and I feel 100 years old. Guess I'm having a pity party.
Lady Golfer--What you are describing is a symptom of various forms of dementia--it's called agnosia. The brain doesn't recognize what the eyes are seeing. Thus, when your husband doesn't recognize you or thinks his own reflection in the mirror is someone else, it's due to agnosia. Divvi has pulled up some old threads that describe the mirror problem in detail--my husband has AD and agnosia hit him bigtime in the middle stage of the disease. For example, he couldn't "see" the light switches to turn lights on and off. If you do a search for "agnosia", you will find many posts about it. Although the symptoms of Lewy Body disease may be somewhat different from other forms of dementia, I think you'll find that most of them have been discussed in detail in prior threads.
I see you are new here......Welcome ......When I have a long story to submit, I take the suggestion of Wolf (an old timer here) and write it in word pad or whatever, then copy and paste it into this site. .......Please try your letter again......We will be waiting to here from you.
Yes Connie - when we sit too long writing it will often sign us out. Best way is as George said, second best is before hitting 'add your comments' copy what you wrote. That way if it goes missing you can paste and post it
My husband was originally diagnosed with Lewy Body Dementia, but while he has Parkinson's symptoms he still (5 years later) only has mild cognitive impairment. So his diagnosis was changed to Multiple System Atrophy. He never had the hallucinations that usually lead to an LBD diagnosis.
There is a yahoo email group for LBD spouses--I find support from other spouses so much more useful than the groups dominated by children. But I have found some of the Parkinson's material helpful because my husband's apathy and emotional distance is particularly characteristic of Parkinson's dementias. Also the executive function issues--he sounds pretty competent until the topic gets complicated.
Welcome suzyQ. This is a wonderful place for you to find information and have amazing support from others that truly "get it" in trying to navigate through this disease process. My husband was 56 when diagnosed with Alzheimer's Disease. That was just over 5 years ago. I feel in my heart that he actually has LBD. It is so often under diagnosed or just simply dx'ed as Alzheimer's. He has a lot of the Parkinson's components and has visual hallucinations. He also has had the REM sleep disorder for many years prior to diagnosis. This is a very good place for you to gain support and vent as you need to. Welcome to the club!
Hi SuzyQ. I've been away for quite awhile, My DH passed away exactly five years ago this Monday. Your message reminded me that my friend and counselor at the Alzheimer's Association had been married to a dear man with Lewy Body Dementia. She is now working at the Alzheimer Association office in Houston. There is a good chance your Alzheimer's Association can match you up with a LewyBody widow. All of these offices have 1-800 numbers in case you don't live in a city. I was able to call and ask questions, shed tears and laugh a little any time, day or night. If you haven't sought out this site, you should. I'm so far out from those years, I don't have the numbers on my Speed Dial anymore. Trust me, they WERE!
I am well, thank you. I'll always be an Alzheimer's Spouse, though. Still able to spot a Alzheimer couple across a room. My heart skips a beat., because I was there. We can share the "I understand" looks, .. and a bond is made. Bless you all.
My husband's diagnosis was changed from Lewy Body Dementia to Multiple System Atrophy--a different atypical Parkinson's. He still doesn't have hallucinations, so I think the change is right. He thinks he is fine cognitively but I see slow decline mostly in executive function which was clear to me from the beginning. He is now in a nursing home.