Lewy-Body Dementia: a PSA

[a la izquierda]

My grandmother died on Saturday morning. She suffered from Lewy-Body Dementia. It's an awful disease. I'm making it my mission to educate people about this terrible disease that turned my grandma from a happy woman into a person I barely recognized.
Robin Williams also suffered from it.
I wish I could more eloquently talk about it, but I'm too grief-struck at the moment. For more information: http://www.lbda.org

[winter is coming]

1. I'm sorry this happened to her, and to you.

[NYC_SKP]

2. My stepfather...

[Triana]

3. I'm sorry about your grandmother

Thanks for the info.

[arikara]

4. My father just died too

he lived with dementia for 20 years. Not Lewy body, but some kind of vascular dementia. I can't comment much more at this time, just know I feel your pain.

[progressoid]

5. ...

[brer cat]

14. I am so sorry for your loss, arikara.

20 years with dementia...how heartbreaking for you and your family. Peace to you.

[a la izquierda]

15. Peace to you, arikara.

[pipoman]

6. It is one of the faster progression dementias

For some that is a blessing...there are worse things than death...

[yodermon]

7. Condolences, and thank you for the link. I will read up on this. n/t

[mahina]

8. Peace to you and your family.

Aloha.

[ND-Dem]

9. My condolences for your loss.

[Tuesday Afternoon]

10. my condolences on your loss. May she rest in peace.

[Hekate]

11. One of my oldest friends has Lewy-Body Dementia. We had to help her sell her house....

A disease like that affects everyone, not just the sick person, as you know.

Condolences on your loss.

[lonewolf674]

12. I'm sorry for your loss

Casey Kasem also had this disease, and it affected me personally because my grandfather also suffered from it. He passed away over 10 months ago. My grandmother had Alzheimer's and she passed exactly 3 weeks ago today. I miss them both very much, but as their primary caregiver I also witnessed first hand what these diseases do and know that they're both in a better place now. My personal wish is that when the media covers dementia spectrum diseases, they would make it clear that it's much more than grandpa forgetting where he put the car keys again, or grandma's having trouble balancing the checkbook and bounced a few checks -- it was like gradually someone else completely different from my grandparents started inhabiting their bodies. In the beginning with my grandfather, each decline in his cognitive abilities happened so slowly and gradually it was only noticeable to people who weren't around him every day. His personality and behavior went from mild mannered and easy going to mean, nasty and paranoid. Several times, he took swings at me or charged at me and my grandmother. He never would have done something like that before the disease. Every day he would pace in circles around the house, sometimes from the time he finished breakfast until it was lunchtime, and then start pacing again until dinner. The only thing that stopped him from pacing was exhaustion, or he couldn't stand up because of weakness in his extremities or trembling caused by lewy bodies. Fortunately, he had a neurologist that specialized in dealing with elderly populations, so with the doctor's help, we were able to set up a drug regimen and home environment that allowed us to keep him at home for the rest of his time instead of having to put him in a nursing home. Again, I am sorry to hear of your grandmother's loss from this disease and thank you for posting this because it's one that very few people have ever heard of.

[brer cat]

16. Excellent post, lonewolf

although I am sorry you and your family had to live with dementia even once; twice must have been almost soul destroying. Many people don't realize how devastating dementia is for the family and caregivers.

Welcome to DU.

[liberal_at_heart]

13. I'm so sorry.

[brer cat]

17. My deepest sympathy to you and your family.

I hope that educating people about LBD will help you work through your grief. May you find peace and comfort.

[Greybnk48]

18. My condolences to you and your family.

My husband lost his mother Dec. of 2013 to Lewy-Body. It felt like she was my mother too, for 34 years. Watching this happen to someone is really sad, much worse if it's someone you love dearly.