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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

about 1 month ago

is it too late for long term care insurance? my mother was in denial about her symptoms and never purchased additional insurance. now her entire life of work, house, stocks, etc will be drained by nursing home care. is there any way to get some sort of insurance at this late date? she is already admitted

about 1 month ago

treasrideas said...

about 1 month ago

My husband has been diagnosed with Lewy Body Dementia and is on medication but he no longer makes sense when he talks and constantly follows me from room to room. I realize he does not want to be alone but I am the only caregiver and it is starting to wear on my nerves. Any advice? He will not watch television unless I am in the room with him.

14 days ago

BrendaWWBW said...

about 1 month ago

I'm the caregiver to my mother-in-law and although she's now living in an independent living apartment, I've hired a service to give her morning medications and helps her with dressing. I come over in the evenings to help her shower and take care of any other daily needs.

Lately, she's been leaving her room early in the mornings (5am) because she thinks it's time for breakfast. She packs her room up to "go home" just about every day and her anxiety is off the carts. She's scared most of the time and I really don't know what to do with her. We've changed and changed her medications and nothing really helps. HELP!

Mark NY1 said...

about 1 month ago

Help! My dad was diagnosed with LBD about a year ago and since he has been prescribed seroquil and more recently nuplazid for the delusions and hallucinations. Both those drugs just him worse. What can he take to ease the delusions and hallucinations if antipsychotics only serve to worsen his symptoms?

emptynest said...

about 1 month ago

vvicin01 said...

about 1 month ago

2 months ago

My mother was recently diagnosed. My mother's " symptoms are very mild.
She has confusion some days Most of the time she is angry with me and does not want me there Some days she just stares into space My frustration is " I think" maybe she doesn't need me here 24/7 My sister thinks she does Help

2 months ago

My Dad was unofficially diagnosed with LBD in November and again in January. My Mom also has dementia. Hers is just asking the same question 20 times and forgetting what I just said. I'm so lost as to how to handle the delusions. I'm the primary care giver for both of my parents. I have 11 siblings that like to give their opinion but really don't understand what I deal with day to day. My sisters tell me to change the subject when he is having the delusions. But he can have the same delusion for days, weeks, and months. I most of the time end up lying to him to ease his anxiety and paranoia. When I do that, he will drop it and have a different delusion. I get so frustrated with them, my sisters, telling me I'm handling his delusions all wrong. They tell me not to feed into them. At the most, they have only spent 8 hours with him the times they have visited. Am I doing the right thing by lying to him to get him off a specific delusion causing paranoia or should I always try to change the subject? I feel like I'm doing nothing right in my siblings's eyes because they berate me on how I handle things. Thank God I have an amazing best friend to vent to!!! I'm looking for specific tips that I may be overlooking. Most of Dad's delusions cause extreme paranoia and he always cuts himself down for thinking he did something horribly wrong.

Only1 said...

2 months ago

Chrissie O said...

2 months ago

My mum has taken care of my dad for 7 years. She has been through hell but loves him so much just wants to look after him, give him good meals, make sure he is showered, keep him in clean clothes, a lovely bed to sleep in and his own home. He fell almost every day over the last 6 months but she always managed to get him up again until this week.. Today they took him away and she knows he will not be coming again....It is like she is bereaved and I am not there due to living away. I will be there Saturday but she has no support right now. They just took him to a care home.. They have been married for 63 years. My mum is 86 but would have done anything to keep him home. So so cruel LBD

Only1 said...

2 months ago

Kimmiebrat said...

3 months ago

Hello all,

My father was diagnosed with LBD 4 years ago. He is 74 years old and lives with his wife who is his primary caregiver. The responsibility and stress that she endures in taking care of my father is now suffering and I feel that it is time to seek outside assistance. My father's wife will not be very enthusiastic to this change, but myself and other family members feel that it is time. Can anyone give any advice to approaching her with this delicate conversation?

Always open to suggestions......regards.

3 months ago

Celsius16 said...

about 1 month ago

Bjc122478 said...

3 months ago

Hello everyone,

My mother in law was diagnosed with LBD going on 2 years now. This has been the most stressful thing me and my wife have ever been through and it's taking a toll on us on all levels. It's as though the old her is gone and has been replaced by someone else. She has constant delusions, thinking that people are after her, laughing at her, talking about her. The government is out to get her, listening in on her. She won't take her meds, she doesn't believe anything is wrong with her. Me and my wife get the brunt of her wrath. This past Friday the 13th, full moon, she was rolling around on the ground like she was on fire, telling my wife she hates her, hitting her. She thinks we're keeping her prisoner. She thinks the government gave her a "shock" and thats why she's like this. She's Hispanic and used to speak English fairly well, but that's deteriorating. She has a lot sexually inappropriate and religious delusions. She just acts very bizarre, a lot of twisted and morbid delusions and it's too much for us to cope with at this point. My wife tells me there's nothing we can do until she starts to harm herself or someone else. She wants to keep her mom until the very end, when we have no choice to send her away or call the police, so she has a clear conscience that she did all she could for her. Any thoughts, help is appreciated

sharon0321 said...

4 months ago

My husband has been diagnosed with Lewy Body Dementia/Disease. I'm reading a lot about it and it's very scary. He falls a lot and has dementia and a lot of mood swings. Does anyone else know about LBD

4 months ago

3 months ago

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