My father has dementia with lewy bodies. I have been blessed beyond measure with this man as my father. He is the sweetest, kindest, more wonderful person you could ever meet. He would be there for anyone anytime. He has always been my biggest fan and made me feel that he was proud of me my whole life. I am honored to be able to be a part of helping him through this part of his journey and onto the next. I have processed and still grieve the loss of my father, but have accepted that he is not going to get better and my relationship with him is now a different one. It is hard and my heart breaks everyday that I look into eyes that look back but don't look the same. To hear him struggle with things that once came so easy for him, to see the fear and confusion that comes over him sometimes it is heartbreaking. But I will be there until the last breath to help make it as easy as possible. My parents have been married for 62 years. He is 84 and she is 80. Besides the dementia he is in excellent health for a person 30 years younger than him! My mom is the same. He has been rapidly declining and has become more aggressive and insistent on leaving the house or trying to do things. My mother is very controlling and is constantly redirecting him and telling him he can't do things, even if it is just getting up to use the bathroom. She is so scared he is going to do something that she tries to control his every move. (this is not new and has been how she is our whole lives.) They are polar opposites and always have been. She has terrible social anxiety and is controlling, he is a social butterfly and is laid back and cheerful. I have been helping out as much as I can. I am a therapist and have been making space for her to process the loss of her husband as she knows him and adapt to the new relationship she has with him as he is now and help her handle the challenges that come with this. I am sad for what they both are going through. He recently has had some more aggressive instances and it is becoming more difficult for her to "control him". We (my brothers, kids and I) have all tried to help her learn how to deal with things that make it less likely for him to react that way but she wont listen. His dr. recommended looking into a local agency that will come into their home or a nursing home. She will not under any circumstance let anyone come into their home. I understand that and I respect her wishes. However, I also know that she is going
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Hello everyone, does anyone here know about lewy body dementia? It's the type of dementia my mother's doctor initially thought she had. My aunt then saw a neurologist, he said it's pretty much impossible to diagnose lewy body dementia without an autopsy and from what he sees he ''thinks'' it's alzheimer's. I still think it's lewy body and I can't get it out of my head, I keep reading about it and I'm sure it is. She has tremors in her hands, problems with walking (shuffling) and her postures. Her muscles are stiff, like if you take her hand it's hard to get the arm to move. She has a lot of hallucinations, all of these point out to LBD over AD. I'm just wondering if anyone here has a family member that was diagnosed with it? What did it take to get a diagnosis?
My mom has gone majorly downhill the last year. She went from independent to not at all. Sane to insane. SPECT scan shows mild dementia with Lewy bodies but dr said symptoms can still be severe with mild brain results. Anyway. Her dad and sister had this. It was always our biggest fear and nightmare and now it’s here. If she ONLY had this disease and was otherwise happy or carefree I could maybe deal. But she’s miserable. MISERABLE. Scared. Depressed. Aliens or ghosts are stealing her things and trying to hurt her. I mean she’s terrified and then gets mean. It’s awful. Her being scared and miserable is way worse than any memory loss. I have her 4 days a week, sister 3. Neither of us have the space time or Money. Sooner than later we won’t be able to care for her. Most likely while she’s still with it. Putting her in a facility if any kind will kill her. I know the moment that happens she’ll die or disappear. She’s on mirtazapin lexapro melatonin and gabapentin next week. What else can I do??? I can’t stand to see her miserable. I cook for her. We play games. Watch movies. She’s got grandchildren at my sisters. We are doing everything we can to make her happy but she’s SCARED AND MISERABLE AND ANGRY.
This is the worst.
I saw my grandmother (79) today for the first time in her memory care nursing home for the first time in 6 months due to covid. She was diagnosed with Lewy Body Dementia about 3 years ago. She constantly is saying that she’s trapped in her nursing home and that they’re trying to hurt her. She literally fears for her life when there is no danger or anyone trying to hurt her. How do I comfort her? What do I tell her to make her feel better? Is there any way to deal with this fear or is it just a part of her disease? I feel terrible not being able to help. Any recommendations would be greatly appreciated.
I've been reading this subreddit quite a bit the last year or so and I thought I'd share my story.
My dad was diagnosed in about 2010. He was doing really well for a long time, he had his neurologist and also an integrative GP who was prescribing diet and supplements. He has a trainer and goes to the gym a few times a week. I was living with him for a number of years while I was studying but I moved out a couple of years ago.
In that time he has gone downhill quite significantly, mainly due to what we now know is Parkinson's' lewy body dementia.
He lives with his partner who we're not close with, she's very controlling, and we have a hard time communicating. We're grateful she's there and helping but wish the relationship was different.
I had been planning to move overseas before covid hit but I don't think I can go now.
Last month his partner placed into respite care for 2 weeks while she went away and it really seemed to progress things further. He's home now but is having trouble finding the bathroom at night and getting paranoid and aggressive. He is talking to his hallucinations all the time. I'm really worried about what the future holds and how we're going to manage.
Thanks for reading.
“God is good” my fucking ass. Fuck this shitty religion.
My father seems to have rapidly progressing Lewy Body Dementia and I have no clue what to do. He only occasionally deals with lack of motor skills and laspes in memory (this is very slowly getting worse) but his hallucinations are now often and they get bad. He often hallucinates that there are people around the house trying to break in, or that there are people across the street throwing rocks at our house. He's however only 55 and still fairly active so whenever these hallucinations happen he insists that he tries to take care of the situation himself. This causes him to almost never sleep (He averages only a few hours of sleep a day, sometimes none) which then makes the hallucinations even worse. One time I even saw on one of our security cameras that he was throwing rocks and oranges into a neighbor's house because he believed someone was there taunting him. Whenever we try to take him to a doctor he fights it and assumes we think he's crazy. I'm only 21 and being kept up all night by him while trying to balance work and school has stressed me out past my limit. Is there any way I could get a diagnosis or treatment for him here in the US without it being painfully obvious that we're saying he has dementia?
I know this is kind of a legal question and such - but I figured someone here would have dealt with this.
My dad's about two years into Lewy Body and he's doing about as good as you can expect at this stage. He's a really selfless guy and he wants us to get what he's saved for us.
Anyhow, he wants us to find a way to get it before he's forced into a care facility or some similar situation plays out.
I know zilch about this sort of thing and have no idea where to start. I don't even know how it's being held - but I assume it's in some kind of life insurance policy? He was able to articulate there would be "fees" or "penalties".
His wife is still alive and she's onboard with this. I have power of attorney documents - but that wouldn't be useful in this situation as far as I can gather.
Any advice Reddit?
So I’m 22 years old and my dad is 56 and he’s had what we and all of his doctors think is Lewy body dementia for about 5 years now. His symptoms didn’t start getting really bad until about 2-3 years ago. I recently moved back in with my parents to help out since my mom is disabled and he’s getting worse. It’s so hard to know what to do or how to feel when all the doctors say they can’t diagnose him for sure and none of their “experiments” are doing anything for him. His symptoms are: rem sleep disorder, slurred speech, shaking, sometimes his legs just don’t work, he is constipated most days of the week, he pees at least 4 times an hour and sometimes he’s unable to make it to the bathroom in time, he complains his vision changes a lot, he’s forgetful, angry, paranoid, depressed and he’s starting to have trouble eating sometimes. He has a hard time walking and he’s fallen many times which scares my mom and I so we moved to a house which is easier for him to move around in. But he has really bad anxiety and anger and it makes him hard to be around sometimes. He accuses my mom of cheating on him and talking bad about him behind his back, he gets mad over little things and he recently in the last 6 months or so has started forgetting things which makes him even more angry. And I’ve tried teaching him to play video games, I’ve tried offering to take him on drives, Ive tried to get him to paint with me but he doesn’t want to do anything but watch movies and tv all day. I make sure to get him Dairy Queen at least once a week since it’s the only thing that really excites him anymore but it just makes me so sad that he isn’t enjoying anything. He complains all day about how he is sick of watching tv and how much he hates living and it makes me so fucking sad. And the reason I decided to post today is, today he has mentioned at least 5 times that he’s “only going to be around for a few more days” and I can’t tell if he’s just in one of his moods or if something is happening that he’s not telling us about. He hides when he falls and he tries to hide most of his symptoms from us so I’m scared something new has happened or something. Sorry for the rant but I don’t know what to do and I’d really appreciate it if anybody has any insight to share or ideas for things to do for him to cheer him up or any info on Lewy body dimentia. I don’t have anybody to talk to about this and it’s been progressively getting worse just since I moved in in October and I would really apprecia
... keep reading on reddit ➡Which clinical test or exam would allow you to distinguish Lewy body dementia from Alzheimer's?
Hi, it's my first post here. My mom (72 yo) was diagnosed with dementia with Lewy bodies about a year ago, and has been on Aricept since then. Fast forward to this April, and her husband died unexpectedly after a surgery. After several months of staying with her every other week, it became clear she needed help and could not live alone. My husband and I decided that we were going to need to move in with her as none of her other children will be able to participate in her care, and we lived 90 minutes away. We moved in permanently one month ago. So that is the very quick back story.
My mom talks to her husband's photo on her iphone, and although she says she knows it's just a picture and she knows that he's been buried, it's not the reality we see. She talks with him all the time and talks about how his facial expressions change. She also started talking to other pictures of people, and it becomes like she's at a party, socializing with all the people. It's pretty strange to experience for us, although in some ways I'm becoming used to it. I don't know, I'm not sure what I'm looking for or asking, but maybe just wondering if anyone has experienced these types of delusions with their family member? Besides this, she's just mostly very forgetful. Doesn't accomplish much but has a positive attitude for the most part.
Thanks, and glad to have this resource to turn to!
Long story long Mom has Lewy body dementia, not severe enough to qualify for a home. But hallucinations, poor executive functioning, sun downs, looses her words, etc. Dad has schizophrenia which is moderately managed. They are still married, live out in the country, no Uber/taxi services. Dad hallucinates has hx of multiple car wrecks. Mom no longer can drive (hallucinations, poor executive function). No family other than my brother and I. He live 30min away full time work and a family. I’m an hour away part time work with 2 small kids. Parents have No money to speak of, insist on staying in their home. We gutted the house so they can easily live on one floor. So that’s not a problem. The problem is they refuse to take any steps towards finding what services they qualify for. We have taken them to lawyers, set them up with social workers. They just nod their heads and say they will get to it and then do nothing. Just to add here, if we get legal POA (which I don’t think would be too much of a stretch) it would effectively end our relationship with mom, she wouldn’t forgive us. Although I know that time will come. This leaves my bother and I (mostly him due to proximity unfortunately) to do everything. Which my mom resents, until she is expecting something that we didn’t get done. My brother and I had resigned to live and let live. Go up once a week we would alternate and bring groceries make sure the house hadn’t burnt down and do light cleaning. Until she called me this weekend and told me she wanted to Kill herself becuse I have taken all of her freedoms (referring to her ability to drive). I stopped the conversation to clarify that I heard her correctly. She confirmed it. Then said the same thing to my dad when I got off the phone. I called her doctors (I have medical POA) and headed to her house. She was hysterical thinking we were going to lock her up in a psych ward (detour here, my dad has had multiple suicide attempts, and didn’t even tell us mom was considering it until we drug it out of him) I was super pissed, and hurt that she was going to put this on me. But after a few days I feel like I understand better. She has a shitty quality of life, and I know she can tell I am having a hard time being around her. It’s very hard to enjoy her company when all that’s happening is us going around in circles about her care/driving/money. I just don’t want to deal with that aspect. I’d like to enjoy what time we have left together. But it’s all she wants to
... keep reading on reddit ➡Family of four - myself, my wife, our two kids aged 13 and 7. Very tight, loving, supportive family of four with the typical challenges of childrearing which currently includes virtual school during the pandemic. We also operate our own business from home which requires a good deal of focus.
After having shown early signs of it for months my mom was very recently diagnosed with LBD. We've decided to move her in with us for as long as we can provide care for her ourselves. We are not healthcare professionals and our intention is to provide a safe space for her until she's progressed to the point where she requires professional and/or constant attention. She is presently able to look after herself mostly with assistance on complicated tasks. When the time comes she will utilitize her long term care insurance policy. In the meantime we'll look after her. Thought we would buy a place with a separate but attached in-law unit so she could be close by but maintain her privacy as well.
That sounds like a neat plan but we're not factoring in what we don't know.
I guess I'm looking for wisdom and guidance from those with familes in a similar situation. What should we expect as a family unit as she progresses under our roof? When did you make the decision to move her from your own place to assisted living/memory care?
Looking forward to whatever insights you can provide to help us look around corners we can;t see ourselves yet.
My grandmother, 86 with lewy body dementia, caught a small case of pneumonia that cleared up with antibiotics about a month ago, the follow up CT scans and xrays showed that it was gone.
About a week before I knew she had pneumonia, she was confused as to who i was—her grandson that's been living with her since i was 7—and where she was. She gets UTI's somewhat frequently so figured it might have been something related to that because i'm aware how much a bacteria infection can change her moods/personality (but one has never caused her to straight up not know who i was). After we found out she had pneumonia I chocked it all up to the infection and a few days after it cleared up she was back to normal for about a week. But now she keeps dipping in and out of the same delirious state, thinking i'm some random caretaker from some company and that she isn't in her own home.
Now, this seems incredibly sudden from how she was before the pneumonia. Even the geriatric/memory specialist doctors that she sees say patients never develop that quickly and that it more than like has to do with her infection. Literally overnight from her standard dementia of being a bit forgetful of things and dealing with hallucinations at night, to just not recognizing who i am or where she is some days.
However, it's been about a month and she just isn't really shaking it. She has good days and bad days. Is it possible the pneumonia had affected her brain permanently? A possibility of another infection somewhere else?
38M, USA. My 68 year mother rapidly went from a Parkinson’s diagnosis two years ago to late-stage Lewy Body Dementia today. Her mother died in the 1990s around age 70 of similar symptoms (though we aren’t certain of the official diagnosis). My mother’s older sister has Parkinson’s movement issues but no dementia.
I understand from some quick research that Parkinson’s and LBD usually aren’t genetic? Of course, considering my family history, I am concerned. Is that anything I can do, whether it’s medicine or lifestyle, that might help reduce my own chances of getting it when I’m older?
Thank you.
Sorry for putting this up here- can anyone please outline the difference bw the two?
From what i gather- both have EPS, both can have visual hallucinations, both will have dementia...is there any clear differentiating feature between the two?
Thanks in advance!
