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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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AnneKW said...

21 days ago

My husband was diagnosed about a year ago. Although looking back, changes were occurring four of five years ago. His major symptoms right now are losing words and executive function. He can carry on a conversation (except for finding the right word) very well, but has trouble with "doing" things. It's so sad because he was always so active and loved math, science, computers - all the things you need to be able to do things sequentially. Sometimes he can't remember the steps to tie his shoes. On the other hand, he will latch on to an idea (often for wanting do so something he's not able to do any more) and won't let it go. He will keep badgering me for weeks. Physically, the Parkinsonism is there, but not too bad. He can still go for walks and do some light exercises, but really can't help around the house because of a bad back and diminishing executive function. He's still very sweet and really feels bad when I get frustrated. .

The real problem right now is me. I'm feeling trapped and overwhelmed, especially knowing that things are only going to get worse. Sometimes I just lash out verbally--even though he doesn't deserve it. I resist complaining to family and friends or asking for much help, because I know I'm going to really need it later and don't want them to burn out on me and my problems. My children really aren't much help. One lives in another state and the other has an anxiety disorder and learning disabilities and she and her husband live in their own little bubble.

Just need to vent. Wish there were a local support group. Nearest one is 60 miles away.

MarieAndrews said...

about 1 month 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...

about 1 month ago

Only1 said...

about 1 month ago

Cody777 said...

about 1 month 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...

about 1 month ago

Beckyal said...

2 months 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...

2 months ago

popscicle said...

3 months 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...

3 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...

3 months ago

3 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...

4 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...

about 1 month ago

about 1 month ago

5 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

5 months ago

treasrideas said...

5 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.

4 months ago

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