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| Author | Topic: losing dad |
| sandy |
posted 8/28/03 4:11 PM
Last thursday, I buried my father. Dad suffered from Diffuse Lewey Bodies. A dementia coupled with parkinson. The last 2 years have been the worst. He was originally diagnosed 4 yrs. ago with alzeheimers.In addition he suffered from reoccurring bladder cancer and scolerois of the spine.He was my Hero. My brother and I fought to get him the best of care. But no one seened to care about his severe pain. If I heard it once , I heard it a thousand times. "He is old . He is DNR.What do you expect us to do?" and my favorite- " You need to get a Grip. " |
| Suzanne |
posted 12/27/03 4:59 AM
I just found this web site so hopefully you read this. My grandfather was recently diagnosed with Lewey Bodies and my family is trying to deal with this. We don't seem to be doing well. We just seem to be lost as to what to do. We know he is not going to get better. I guess we just don't know how to cope and how to make things "better" for him. How did you get through it? I feel this is giong to be a long journey. |
| Tay |
posted 12/27/03 5:12 AM
Suzanne...Here's the link to the website's other dementia area. Youll find information about LBD as well as Lewy Egroups. Hope it helps!Tay http://www.zarcrom.com/users/alzheimers/odem/lewy-d.html |
| Tay |
posted 12/27/03 5:13 AM
[This message has been edited on 12/27/2003] |
| Suzanne |
posted 12/29/03 1:03 AM
Thanks Tay for the website. I'll be sure to look. |
|
Tay (Moderator) |
posted 12/30/03 6:51 PM
You're most welcome My Friend! And I'm sincerely glad I could help! |
| Pat |
posted 5/6/04 12:47 AM
My father has late stages of Lewey Bodies and is in rehab because he spent a week in the hospital and his condition seemed to deterioate. I am now looking into alternative living arrangements for him. Does anyone know the life expectancy of this disease. |
| Pat |
posted 5/6/04 12:48 AM
My father has late stages of Lewey Bodies and is in rehab because he spent a week in the hospital and his condition seemed to deterioate. I am now looking into alternative living arrangements for him. Does anyone know the life expectancy of this disease. |
| Carol |
posted 6/26/04 2:10 AM
My Mom was just diagnosed with Lewey bodies a year ago and seems to be doing fine on Seroquel. I understand the life expencancy (sp?) is 7 years. Good luck |
| Pam |
posted 11/9/04 7:01 PM
I have a brother with DLB and I had to figure it out because the VA kept saying it was small blood vessel disease dementia although he was in his mid 50's and never had any type of stroke or High blood pressure. The hallucinations were vivid and scary to him and he was showing some signs of Parkinson's disease. He's now 61, lives in a "special needs" home and has little short term memory and more andmore difficulty walking. It's now been about 5 or 6 years since the problems started. The average life span is around 7yrs. but he has no other health problems, so I'm not sure how long he will live this way..it's an awful way to see someone you love die |
| Patti |
posted 1/28/05 4:11 PM
My mom was diagnosed with Alzheimers approximately 4-5 yrs. ago. Dad had to put her into a facility about 2 yrs. ago due to her wandering, verbal abuse and anger. After she was in the Alzheimers unit she was diagnosed, doctors just guessing, that she had Lewy Bodys due to her very fast decline, violet behavior, plus she lost all verbal ability and just speaks jibberish. When she was first diagnosed, she was on Aricept and all the other drugs for Alzheimers -- nothing help. She began talking to people who were halleutiations and still does to this day. She can't carry on a conversation -- but, occasionally she does say something that makes sense and gives me such a lift. She might have a second of responding that just gives me such joy. She no longer knows who I am or my dad. She also doesn't know "mom" and I have to call her my her name "Evelyn". She has a great appetite but is still losing weight. I have to help her use her fork or spoon because she just doesn't understand how to use it -- and she hates when you try to feed her! I have to help her walk and sit. She is incontinet and has been for about 1 yr+. My question is, when is the end time for her. Will it be sudden? Why is she still losing weight when she eats so well? |
| Tay |
posted 1/29/05 0:05 AM
Patti -It's hard to say when the end will come for your mom. It may be next month, next year - no one ever knows. In all probability it won't be LBD that takes her, but rather an infection, such as pneumonia or possibly a stroke or heart attack. http://alzheimers.zarcrom.com |
| Tay |
posted 1/29/05 0:06 AM
[This message has been edited on 01/29/2005] |
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