Wildiris Posted July 22, 2014 Share Posted July 22, 2014 Questions: How does this disease progress? I've tried looking up Lewy Body Dementia (LBD) online, but there is little information. I am trying to figure out what stage my Mother is at so I can either have live-in care 24/7 (She has daily care now.), or move her closer to me. It would be a 500+ mile move. LBD patients do not do well with changes in environment, so a move could be traumatic. Any insight would be welcome. Thanks Quote Link to comment Share on other sites More sharing options...
Splash Posted July 23, 2014 Share Posted July 23, 2014 My father in law had this. My mother in law was told not to move him too but she needed to be closer to us so we could give her some help. I won't lie, it was hard, however it was just as hard before she moved. By the time they moved here it was pretty advanced. He cried all the time, wouldn't let my mother in law out of his sight, only my dh could give her a little break now and then. He had hallucinations and vivid dreams. He'd kick and scream in bed and sometimes fall out and not be able to get back up. Sometimes she'd have bruises from his thrashing around. Eventually she had to put him in a home. He was there from November to April and then he died. They say it is seven years from first signs to death as their brain shrinks. I'm so sorry your family is going through this. It is an ugly disease. Quote Link to comment Share on other sites More sharing options...
lailasmum Posted July 23, 2014 Share Posted July 23, 2014 My dad had this. He died when I was 18 so I only remember the progress of it loosely but he had many years with milder symptoms like being a but of a danger to himself, getting confused but having most basic functions and getting out and about. It changed quite fast though when it got bad, he went downhill and needed a lot more care quickly, spent more time confused. Probably the last two years he needed constant or close to constant care. My mum looked after him at home with a bit of outside care and occasional respite care. He had the same problem that Splash mentioned with hallucinations and didn't recognise us at times etc. I think whether they would take to being moved would depend ok how early on the disease is. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 23, 2014 Share Posted July 23, 2014 I don't have personal experience with the disease, but it would seem to me that if a move is inevitable at some point, it would probably be far easier on your mom if she moves near you before she gets even sicker and more fragile. I'm so sorry about your mom. :( Quote Link to comment Share on other sites More sharing options...
TeacherZee Posted July 23, 2014 Share Posted July 23, 2014 I'll ask my mom, who works as a geriatric nurse specialized in dementia care what she would recommend. Hugs Quote Link to comment Share on other sites More sharing options...
Luckymama Posted July 23, 2014 Share Posted July 23, 2014 Oh man :grouphug: Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted July 23, 2014 Share Posted July 23, 2014 My mom has this. Dad had to retire this. Year someone has to be with her 24/7. She went frrom independant to dependant in a year. For us the prograss has been. Rapid However she has been having hallutionation my whole life along with vivid dreams Quote Link to comment Share on other sites More sharing options...
G5052 Posted July 23, 2014 Share Posted July 23, 2014 My mom has this. Dad had to retire this. Year someone has to be with her 24/7. She went frrom independant to dependant in a year. For us the prograss has been. Rapid However she has been having hallutionation my whole life along with vivid dreams I just saw this thread, and I agree. Mine had vascular dementia, and then there were aspects of it that they thought was LBD in addition to the vascular issues. It isn't uncommon to have mixed dementia. Unfortunately my mother's case was managed by a primary who really didn't know what she was doing according to the neurologist who initially made the diagnosis. Multiple times she was given medication to deal with her symptoms that was completely inappropriate for vascular dementia. If you can get a neurologist in charge who primarily treats dementia, medications can help with the caregiving even if you can't stop the progression. Medication can sometimes smooth out the hallucinations, agitation, paranoia, poor sleep, and such. Both vascular dementia and LBD can go in stair steps with big drops in capabilities. Alzheimer's tends to be more gradual. So yes, you need to get your resources worked out pronto. Don't forget the legal end of things as well. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
lauranc Posted July 23, 2014 Share Posted July 23, 2014 My dad was recently diagnosed with this. It has gotten worse pretty quickly since my brother moved my dad out to where he lives. Probably due to the change in environment. It is a really tough diagnosis, and he now requires 24/7 care (my brother has him in a 'home'). He went from hallucinating and falling occasionally, but living independently.... to not being able to walk at all, not being at all in touch with reality, and needing full time care in a matter of about 5 months. He is still fairly young... It has been difficult. **edited to say that I don't think the change in environment was the only reason he has gone downhill so quickly. It was important that someone take care of him, and my brother offered. So he had to be moved.** Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted July 23, 2014 Share Posted July 23, 2014 They are say her lbd is related to her parkinsons that also went untreated for years. Mom is at end stages of both diesases. It is hard but when we had rehab her decline was rapid. We fought to do in house therapies this time Quote Link to comment Share on other sites More sharing options...
TeacherZee Posted July 25, 2014 Share Posted July 25, 2014 I just saw this thread, and I agree. Mine had vascular dementia, and then there were aspects of it that they thought was LBD in addition to the vascular issues. It isn't uncommon to have mixed dementia. Unfortunately my mother's case was managed by a primary who really didn't know what she was doing according to the neurologist who initially made the diagnosis. Multiple times she was given medication to deal with her symptoms that was completely inappropriate for vascular dementia. If you can get a neurologist in charge who primarily treats dementia, medications can help with the caregiving even if you can't stop the progression. Medication can sometimes smooth out the hallucinations, agitation, paranoia, poor sleep, and such. Both vascular dementia and LBD can go in stair steps with big drops in capabilities. Alzheimer's tends to be more gradual. So yes, you need to get your resources worked out pronto. Don't forget the legal end of things as well. :grouphug: :grouphug: :grouphug: Just talked to my mom and she says that with LBD unfortunately the hallucinations cannot be treated with medication :( She said that it is a question of finances and really YOUR comfort. Unfortunately with LBD your mother won't recognize you or her surroundings as the disease progresses. She did say that it is good for individuals with LBD to be activated and that this might be easier in a facility however without knowing anything about the facility she found it difficult to say what was best. She did caution anyone dealing with this to try and care for their loved one on their own. Hugs Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted July 25, 2014 Share Posted July 25, 2014 I will just reiterate what everyone else says, that LBD progresses both quickly and erratically. I'd go for the move now, if it's coming in the future anyway. I am so sorry. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
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