Lewy body dementia and its rapid decline

It's a complicated disease the widow of actor Robin Williams once called "the terrorist inside my husband's brain." It's affected more than one million people.

[mics]

Lost my Dad to LBD. He was my best friend, we worked side by side 6 days a week at the same job. We shared the same hobbies and loved family. It was the hardest thing I have ever endured. A slow goodbye, losing a little bit of my dad each day. God I miss him.

[cope]

to have a person tell me they’ll catch the later train, i would’ve cried so hard

[chellegriggs]

My husband was diagnosed with Lewy Body Dementia 3 years ago, he was a brilliant, funny, loving man....a pilot...he now can barely walk, sleeps most of the day and has forgotten how to do most day to day things. I'm his caretaker. I'm awake most of the nights with him worried he will crawl out of bed or have a dream that scares him. It's a horrible disease. God bless all that are going through this. Pray they fine a cure or at least a treatment.

[SouthernBelle]

“If you decide to get on the train, then I will catch a later train & meet you!”🥰 So beautiful, metaphoric & full of LOVE!❤❤❤❤

[Arion]

Lost my dad to dementia with LB 2 weeks ago. It was a slow progression downhill for almost 13 years. He became incontinent. He ultimately lost his ability to stand up and/or walk and then he faded fast from there. He had great difficulty swallowing and would breathe water and food into his lungs. Watching him struggle to breathe during his final days was soul crushing. He could not speak during his last week. I would not wish this disease on anyone.

[treed]

My mom passed away from a rapid form of lewy body dementia. She got diagnosed in June passed away in early July. 😢 it was so sad cause we had to watch her go threw everything and there was nothing we could do. I pray they find a cure or something to easy there pain. That is and still is the hardest thing I have ever been threw. I never got a chance to say I love u or thank u. Life is so fragile and time. To all u all who r going threw this your not alone and many prayers to you. Theres gonna be a SERIOUS solution to help ease them.

[MrDlt]

My 58 year-old brother has been diagnosed with Lewy for three years. Only a few years ago, he supervised about 100 cement truck drivers; marshalling, scheduling and dispatching them to various customer sites. That takes a lot of skill and attention to detail. Now, we have to make his sandwiches for him because it's too complicated a task. The worst part is, he's completely aware of his predicament and is cognizant that it's getting worse.

[dejavu]

What an Amazing wife! This education has brought So Much help to our family!

[lindamckenna]

My father is currently dying with and from Lewy Body Dementia. It is so hard to see. Thankyou for this clip as it has made me see that his symptoms are not different from what other Lewy Body sufferers have to endure

[fonsecarichard]

Wishing all of you who are dealing with a loved one who has this, lots of love and hugs. 😘😘😘

[sherribegay]

It's been so hard to see my dad change since he was diagnosed with Lewy Body with Dementia last year. There's times I feel guilty to not be there with him every day. God, why? I want my dad back to normal.

[rachaelbarton]

I just lost my father to this, plus Covid-19. For years, we never got a specific dementia diagnosis and I lived in denial. I would tell people that "he didn't really have full-out Alzheimers or anything". I didn't find out about LBD with Parkinson's until a few months ago when I asked exactly what his diagnosis was. As others have shared, it is so hard to see your loved one decline mentally and physically. We kept him at home for as long as we could, but eventually had to move him into a facility at the end of November as the dementia and incontinence worsened. That was so hard on the family mentally. He didn't have the hallucinations, but he had plenty of other symptoms. Towards the end, he experienced a lot of pain. Between this and his kidney issues and Covid, he just didn't make it. Thanks to all of you for sharing your stories.

[williammichael]

Thanks for this, I'm 59 yrs old from Scotland, and I've been diagnosed with this ...

[FluxyMiniscus]

We lost mom to LBD last week… the changes were swift and frightening

[UmbilicaLashed]

I watched someone die from this firsthand and I will tell you right now that if I had it I would give myself a lethal dose of some heroin or morphine. No way would I put my family through it or want to go through it myself. We don't let our animals suffer but we let our loved humans go through it till the end. I don't believe that's fair because they are truly in hell.

[SandyzSerious]

My husband is dieing from this disease right now. Six months ago he was diagnosed and already he is in final stage. He can't swallow so basically he's starving. He suffered from the worse hallucinations that you can imagine. God bless all that have it. It's a horrible way to die.

[sallyclay]

My sister had Lewy Body Dementia, for 7 years. She spent the first 4, in her house in Ridgefield, CT, with round the clock caregivers. The last 3, were at The Assisted living facility, The Residence, in Darien, CT. She started to have symptoms almost immediately. She fell, forgot where she put things, and then started hallucinating. She started to see, little furry green animals. She couldnt talk in sentences, and then became infirm. The Lewy Body Dementia, destroyed her mind and body quickly. At the end, she wouldn't eat, and then hospice was called. She passed a way, on Jan 28th, 2021.

[wendymiller]

My husband died a week ago after a six year journey through Lewy Body, Lewy Body is like Alzheimer's on steroids, I am glad he finally has peace.

[maryjones]

Very sad situation. I am sorry that this happened to your loved one. What struck most, me of all the things you spoke of is how you told him ‘…to get on the train, and that you would meet up with him.’ Letting him know that it is okay if he chooses to go, and he will see you again one day.

[sallyfong]

Thank you for this helpful information!! This horrible disease runs in my family.