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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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MarieAndrews said...

8 days ago

I would like to join this group. My husband has LBD and I would love to be able to talk to others who understand and might offer suggestion that would help with certain things.

Hungryg said...

3 days ago

Only1 said...

3 days ago

Cody777 said...

9 days ago

my husband has lbd and is loosing strength in his body,and is finding very hard ti do things for himself. I try very hard to help him,but I know it is very frustrating. His mind is still good,thank God,but I see him getting weaker all the time.I need to know how others feel at this stage. i

Only1 said...

9 days ago

Beckyal said...

about 1 month ago

Good morning, my mother has defused Lewey body dementia. She has episodes to go on that the doctors cannot explain. It starts in a panic attack, turns into a horrible episode where her legs Hurt severely. Sometimes other things go along with it like her back and neck. She feels like she has to walk around trembling and crying. It seems nothing we can do to help her, and these episodes last sometimes up to seven hours. I was just wondering if anyone out there has any of the same symptoms? Please help!

Only1 said...

about 1 month ago

popscicle said...

about 1 month ago

I lost my husband in March of this year to Lewy Body after many years of taking care of him. I finally had to admit him to an Assisted Living Home after many falls and injuries. Watching my man decline and lose everything he enjoyed doing was so hard. It destroyed my spirit and I suffered from depression. His feet would freeze up on him and he couldn't walk until the spell passed.. I won't take the time now but just know my thoughts are with you. We had wonderful help from Hospice and the staff at the home. But the responsibility for everything is on the caregiver. Be good to yourself get out with friends and rest as much as possible you have a long road ahead of you. I HOPE YOU HAVE FAMILY TO HELP YOU.

Hungryg said...

2 months ago

Well, even though no one has responded to my previous post, I will use this as an opportunity to voice my thoughts and experience ... even if I'm the only one reading them! This morning I left pre-dawn for an airport run. I lock the deadbolt on the door when I left as my husband, who suffers from LBD, was still sleeping. On the return trip I received a call from him. "I'm lost. I think I'm at (a neighbors house). I can't get the door open to leave. I'm locked in." So glad I locked the door or he might have been wandering the neighborhood in the dark! Since it was so early, I thought I could get to the airport and back before he woke. Lesson learned.

Only1 said...

2 months ago

2 months ago

Hi, our Mum sadly died from dementia with Lewy bodies last year. To help others dealing with this hideous disease, I have written the story of our journey which includes key information about Lewy body dementia.

https://www.amazon.co.uk/Same-Destination-Different-Journey-Dementia-ebook/dp/B06XC1FHC2

Hungryg said...

3 months ago

My husband was diagnosed with LBD 2 1/2 years ago, but I'm convinced he has been suffering with it longer than that. Our small town does not have a support group, of which I am in desperate need. The "Are you suffering from Caregiver Burnout?" quiz but me right at the edge. We do not live near any family. If I break, there is no one here for him. Someone to share this journey with would be awesome. Any takers?

MarieAndrews said...

8 days ago

5 days ago

4 months 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

4 months ago

treasrideas said...

4 months 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.

3 months ago

BrendaWWBW said...

5 months 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!

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