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Lewy Body Dementia - Support Group for Caregivers

Caring for a loved one with Lewy Body Dementia (LBD)? This group is for you! Get feedback and suggestions for caregiving challenges -- connect with others in similar situations and receive online support. Welcome - please share about your experience, and as you can: add responses for other members too.

This group was originally started by Caring.com member, "jannon" in March 2014 who wrote: "My mother has Lewy Body Dementia, which is different in many ways than Alzheimer's. I am her primary caregiver now, and it's a very stressful. I would like to know if anyone else is dealing with LBD."


What's New Today

18 days ago

Hello fellow caregivers..... you have my empathy and sincere acknowledgement of your undying care and concerns for your loved ones having to deal with this terrible illness of Parkinson's with Lewy Body Dementia.

My husband of 42 yrs. is going downhill very quickly with this illness. I feel like I'm playing catch-up all the time and in a game where the rules keep changing on me..so I'm kinda chasing my tail, at best....

He is just about ready for diapers..as his incontinence is starting to get very noticeable....as are his many many trips to the bathroom....

We live in Oregon...on modest means....he's not a veteran..we have no long term insurance. Just SS and medicare with a supp.

I don't know when the time will come when he will require more care and attention then I can offer to keep him safe. He now suffers greatly from hallucinations, dementia, vascular insufficiency, which causes his legs to light up and get bright red upon standing or sitting on the toilet...and then that causes orthostasis, when he does try to stand. He has to use a walker and rollator to get around..and falls frequently now. I'm afraid to take him out for a walk on concrete or asphalt..as he's so frail and has lost so much muscle mass..he would certainly break a bone if he fell on that kind of surface. But yet he wants to get out and walk......and then we have to deal with the pesky urination problems.....can't be out for too long...

I have read countless postings from caregivers of all kinds...and I wonder.....just how much of OUR lives are we expected to be using up taking care of our loved ones, alone. I, like so many other caregivers now understand what is meant by..'burnout'. As much as I try and take care of 'me' in this 'dance'...I fall woefully short of that. I'm 72 and vibrant..in excellent health....and wonder if I'll even have a life left after he passes...am I alone here?? I know his condition will get worse...it's the way of LBD. I also understand the 'cry wolf' part of this illness...where at times he can act totally normal..like when he sees his doctors. not at all the basket case he presents at home!

I would love to hear from any of you that share these concerns. Also, take some deep breaths my brothers and sisters.....and do something that brings YOU joy today!!

Only1 said...

15 days ago

15 days ago

Only1 said...

23 days ago

Palliative care: When do you know you need to think about palliative care? My mom is still kind of ok. She has issues lately with walking again and a lot of her talk is jibberish. She can still use ordinary words, sometimes the wrong ones, but a lot of jibberish now too. I used to be able to ask what do you use it for and she would describe it in a combination of words that I could figure out. Now when I ask, it's all jibberish so my response is often "I don't know". I don't know what stage she's at right now. I'm seriously wanting a new neurologist since this one never calls me back. I only see him when we have an appointment. My mom has her primary care appt next week and I will ask him for a referral. Is it the doctor who initiates that conversation or do you ask for it yourself? Does you LBD loved one need to be bedridden at that point? Does some drastic event need to occur?

playtenor said...

26 days ago

My mother in law has LBD. I have 2 questions: 1. Is it common for people who have LBD to get extremely attached to one person? Like their world revolves around that one person? If so how can you deal with that? 2. When she becomes agitated at something we are talking about and tries to argue, how far should go into the conversation. Should it just be left alone? It seems no matter what she never believes anything we tell her, like we are planning something behind her back. And she won't wear her hearing aids so she thinks we are saying something other then what is actually said.

isolated said...

about 1 month ago

My mother was finally diagnosed with LBD in 2013 after a collapse in 2010. Many misdiagnoses occurred between 2010 and 2013 and many harmful medications were prescribed, Since I just located this support group site for LBD, I would appreciate speaking to you about your plight and current situation to see if it is similar to the horrific lack of physician, nursing, Alzheimer/Dementia facilities there are in this country and the lack of media coverage there is about this devastating form of dementia,

Hiimlilmama said...

3 days ago

Only1 said...

1 day ago

Cody777 said...

about 1 month ago

how fast does this disease usually progress

Only1 said...

about 1 month ago

about 1 month ago

I am at the end of my rope as a caregiver to my 97 year old father with Parkinsons Disease related dementia and 86 year old mother who cannot cope with her husband's behaviour problems. They have medications but it seems like it's getting worse

schnucki120 said...

about 1 month ago

My mom 88 has LBD and it becomes harder and harder to deal with. Worst for me is the hallucinations with kids and animals and i would like to know if anybody can give me some tips how to deal with that. Doctor had put her on quatiapine which made it only worse she was only sleeping. Now i give her xanes 0..25mg but only if she needs it. Does anybody know if this terrible decease comes in stages and has any tips for me.

Only1 said...

about 1 month ago

Only1 said...

25 days ago

Only1 said...

about 1 month ago

My mom was just given a new drug to try. I told the doctor that she sometimes doesn't swallow her pill. She takes a generic Stalevo. She gave me Rytary, which is a new drug. It comes in a capsule and you can open it into their food. I gave her 2 capsules as required t equal what she was taking in Stalevo. She gets seriquel and a slow release carbo/levo (25 mg) at bedtime as well. She went into such a deep sleep I thought she was in a coma! But it looked like just a deeper sleep. In the morning she seem to come out of it and was actually a little better. Cognitively she was better as well. We skipped her noon dose since she was still napping on and off.. The doctor told me to drop it to one pill instead. In the evening I gave her the one capsule and she swallowed that.. I left out the carbo/levo and gave her a small does of seriquel. this morning I got her up for her bathroom trip and she was a bit shaky. She had only the 1 capsule this morning. My mom's aide called me and she was still in bed sleeping! she tried to get her up several times. She gave her a sponge bath and said she couldn't really stand up on her own feet very well, and gave her ensure to make sure she had something.. What's going on with this? Every time my mom makes a little progress and I get my hopes up, the next day it's gone. It's like having the rug pulled out from under me every time. This was supposed to help give her a better quality of life.

Only1 said...

about 1 month ago

dc1718 said...

2 months ago

OMG - reading this scares me to death and makes me so sad. My husband who is 67 got a partial diagnosis of LBD a couple of weeks ago. Specialist is reviewing his MRIs taken over the past 3 years and all lab work and he asked us to have husband get Vitamin B-12 and Thyroid test to rule those issues out, have not gotten those test results yet. He had a lot of the same symptoms I see listed here - his rigidity in body movements, general confusion one minute, clear as anyone the next so it's so confusing how to deal with it. I think we are both still in denial. He took the doc's information that it wasn't AZ or Parkinson's as a clean bill of health but obviously it's not, it's a combination of both diseases if he truly does have LBD. One day I am angry one day I'm in tears. He is so rational and remembers things I don't most days then all the sudden he says something that makes no sense. I get angry sometimes but I think it's an emotion I can deal with, sadness I can't deal with. I work full time two jobs to support us and fortunately we own our office and have an apartment space in the back where he spents the majority of each day watching tv. Otherwise I would have a situation I couldn't deal with at all. I am scared, feel alone, and am afraid to share his condition with anyone outside the family. His condition started 3 years ago but got noticably worse just a few months ago. He lost interest in almost everything, doesn't do anything at home or the office anymore, just watches tv. It's depressing to me but I can't get him engaged or interested in anything.

Yorkiegirl said...

2 months ago

Is crying part of the disease? My dad has it and is in memory care facility. We don't know whether to bring him home and hire someone to take care of him or leave him where he is. My mom has dementia , too, but is still living at home. It's rough!

Only1 said...

2 months ago

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