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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."


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Mjkb said...

3 days ago

My mom has lewy dementia...I'm also her primary. For me, the only thing I find stressful is how clueless my sibling are. I am with her every step of the way n I feel they need to open their eyes. Nobody seems to see or understand how challenging it could be. Mentally physically emotionally....for me it's the days I need support, strength emotionally. It's heartbreaking n then there are days where I'm scared..all the time n j just need her with me. Looking at me. Talking to me.

Only1 said...

2 days ago

igou96 said...

10 days ago

New here. My wife has LBD and is 62 years old.. Fighting now for almost 2 years and seems to be getting progressively worse.. Constant hallucinations and delusions when awake (sleeps a lot).. Has spasms and falls. Her Neurologist doesn't seem to be too interested in doing much other than prescribing pills and telling us that it will get worse. She cries uncontrollably and is very depressed..

Only1 said...

10 days ago

9 days ago

Nancelot said...

15 days ago

New here. Husband diagnosed 2 months ago.

15 days ago

Church kid said...

25 days ago

My husband has just been diagnosed with LBD

24 days ago

16 days ago

wabpita said...

about 1 month ago

My problem is that I have dragged my husband (73) to two different neurologists and neither has diagnosed him with LBD or offered any help. My research showed the symptoms of lewy body disease and they match in many ways. Can't get a doctor to pay attention and help. If they don't agree on this diagnosis, then tell me what I am dealing with. They just brush it off as a decline in cognitive abilities.

LaFemmeDArgent7 said...

26 days ago

wabpita said...

25 days ago

Smileyj said...

about 1 month ago

Yes, my father was diagnosed with lewy body in 2011 and it is very stressful. I am the only caregiver with no family support. I finally had to get a CNA so I can have a break. The constant worry and not knowing what to expect from day to day is exhausting. My dad just recently dealt with a bout of UTI,S and became sepsis twice. Sepsis can be life threatening if not treated quickly. He is now taking a daily antibiotic and drinking lots of water and juices. ( He told me I was gonna kill him with all the water)????????????. I have found that physical therapy is very good for the rigidity and balance issues that come with Lewy Body Dementia. It's a heartbreaking disease to watch your loved one go from a vibrant hardworking man to not even knowing where he is most of the time. He still knows who everyone is and I Am grateful for that. I will be praying for everyone dealing with this horrible disease. We have to keep loving on them and continue to treat them as the person we know them to be even though they are not the same person.

Only1 said...

about 1 month ago

2hope said...

about 1 month ago

My husband was diagnosed with LBD on 9/14/16 and on 10/6/16 was admitted into the hospital for a kidney stone. Today I was told that hospice would be the best option. His disease has progressed so much. He is bed ridden, wears disposable briefs and is on a special diet, thick liquids and puréed foods due to trouble swallowing..

about 1 month ago

Only1 said...

about 1 month ago

3 months 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...

3 months ago

3 months ago

Only1 said...

3 months 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...

3 months 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.

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