Lewy Body Dementia: My Father

This video demonstrates some of the symptoms of Lewy body dementia. It is a personal account of this disease through the eyes of a daughter.

[raegray]

My husband died less than two years after being diagnosed with LBD. His deteriorating was I quick and no-one ever discussed the condition with us. Everything I learned I had to research for myself. When things started to be obvious it was if a bomb struck . It's the only way I can describe it. Everything that happens with LBD, happened all at the same time. The hardest thing was the fact that he was aware of the things that were happening to him. He would looked his hands and say " I can't do anything" He just couldn't figure out how to do the thing he wanted or needed to do.
But with the help of the family we managed to keep him at home and he died peacefully surrounded by family and friends, just as he would have wanted. No more suffering, now safely in the arms of God

[mitzi]

My dad has been stolen also! Some days he just sleeps when I am visiting. So I sit there and think about what a wonderful father and honorable man he is. I appreciate those moments, although his caregivers don't understand why I sit there and watch him sleep. I know the day will come when that blessing will be gone and I will wish I could sit and look at him, uninterrupted... Thank you for your video.

[patriciaflood]

My husband had LBD with Parkinson’s for seven years before death: at least after diagnosis. We know now he had symptoms years before. Hallucinations at the beginning were terrible. My husband called the local police a couple times while I was asleep because he saw people behind trees and bushes on our property. Thankfully we live in a small community and they were so kind and understanding. Loss of smell and taste and therefore not wanting to eat another big problem. The paranoia is so very real. He didn’t trust anyone. He has been gone six years now and as much as I loved him and miss him after fifty years of marriage I am so thankful God took him out of his confusion. What hell that sweet, loving, brilliant man went through those last years of his life. Sending prayers for those of you going through this horrible disease and loving caregivers. 🙏💕

[anneg]

That was my MIL to a T. We lost her three weeks ago. It was so rapid at the end. The neuro psychiatric symptoms began years ago. And she was so stubborn she refused to be diagnosed, no matter what my FIL tried. And the delusions. The anger. When it got really bad at the end, the doctors put it together for them, but she almost immediately went on hospice at that point. She had been shuffling everywhere, all that you describe. I’m so very sorry. And we think the same thing about my MIl. Of the 28 years I’ve been married, I had a wonderful mother in law and close friend for around 23, and that’s how I think of her. With love to you and prayers ♥️🙏🏻

[danda]

My mother passed away from Lewy Body Dementia. She wasn't diagnosed until 6 months before she died. The stories I could tell... when she fell and broke her hip seems like she really went downhill very fast. She thought 2 men lived in her attic and had a computer that when pushed a button bad things happened. Another was she seen little kids playing that weren't there. So many more. Thank you for sharing your story. So sad this happens. Last time I had my mom visit me she was adamant that I was trying to poison her so she wouldn't eat or drink anything. I had to take her home. Before she was bedridden she eventually couldn't hold her head up. Had to strap her head to wheelchair to feed her. She pretty much starved to death. Last day before coma she had one tablespoon of baby food. That's it. Well won't go on and on but there is so much more. Thank you again for sharing a part of your life with us.

[brandystar]

My dear lady friend was sliding quickly into grumbling communication, in the senior's home. I held her hand, and she squeezed my hand. I knew she was still there, inside her body. In short, in one night, she came to me in my dream. She showed me her arms, her skin was like porcelain with a gray undertone. I woke up immediately and phoned the senior's home. They told me she had passed away four day prior. No one else would have told me this news. She was always there, in her heart and I knew that. I felt simply honoured to be contacted by her of her passing. Love you Pearl.

[lisaerl]

My sweet mom had LBD for 16 years starting at age 65-66...she passed away in 2011. It was so sad and tragic. God bless you and your dad.

[ToddLuvsGolf]

Thank you for sharing. I’m suffering with the same condition and am somewhere around Phase 3-4. My heart goes out to you and am very happy he has such a supportive daughter. I’m very concerned for what my kids will go through caring for me as this progresses.

[nanalcd]

Thank you so much for the ìnformation, I watched the video, put it on pause, rewound it, and replay it so many times, because my English is not so well. I am on my way to visit my oldest brother in France from USA next month. I found out he had just started to have dementia. Now, I understand the future of my brother. and I am more prepared. All I can do right now is accept and pray to God. I wish you well and may God Bless all of your loved ones. Goodbye.

[craig]

My Father in Law is 80 years old and currently in The Veteran's Administration Hospital for evaluation - they are leaning towards a diagnosis of LBD. Interestingly, we hadn't noticed any alarming decline until very soon after he received his Covid vaccine - that is when his extreme insomnia began. He struggled with that and extreme agitation for about 6 months and then had shoulder surgery which seemed to make his condition even worse (I have read of others who feel exposure to anesthesia often is a trigger or worsens such conditions). His condition has deteriorated rapidly over the last 3 months or so, often involving wild mood swings from day to day or even within the same day. He now suffers at times from delusions, paranoia, occasional hallucinations and has begun threatening care givers during bad episodes. Hoping the physicians can hit upon an effective medication regimen which will improve things without too many negative side effects.

Thank You for sharing your and your Father's experiences in this video.

[dorothycotten]

My dad had a stroke in 2017 and seemed to begin The symptoms of LBD. He has I have been with him taking care of him since his stroke. I just called in hospice for him because he has really turned to a distant place. And it’s just too hard to try to get him to doctors anymore. I’m blessed the Lord has made a way for me to be able to care for my dad, as he cared for me in my life. My heart goes out to all the caregivers out there. No one really knows how much strength it takes to be you. May the Lord bless you all❤

[jaimito]

Thank you for doing this work. It has been not only informational but also a great tribute to your love for your father.

[marynielson]

He is indeed first and forever your dad and what an incredible daughter he has in you. My heart goes out to you and all others who have to face the cruel consequences of LBD.

[krisi]

This was a very helpful video, thank you for sharing your story.
I’ve been caring for my mother who’s 65 years old, she was misdiagnosed with altimeters 4 years ago and was recently diagnosed with LEWY body dementia in January 2023. Altimeters never made sense to us because it originally presented as a movement disorder with delusions, mood changes and hallucinations.
She’s had symptoms for about 7-8 years now and I’ve been fortunate to be able to live with and care for her.
Thank you for spreading awareness about this disease.

[mutzicat]

My mother suffers from dementia and until just yesterday, I had no idea that it is so likely to be Lewy Body... it was an eye-opener to start watching videos about this form of dementia and in some ways a relief to know more specifically what it is (most likely). I too question - who is this person? Are we still a person if we don't have memories? Good question. I think about this a lot as I look after my poor old mother with the same advanced stage dementia as the man suffers with in the last few minutes of the video. When I see her trying so hard to find a word, help with a small easy chore, make her way onto the toilet seat with so much difficulty etc. I see a human being who is struggling and fighting to prove herself as a worthwhile, functioning and valid being and the great compassion I feel tells me that she is really more human and valid thank when life was easy..

[Mickey-jnhz]

Just breaks my heart what people have to go through before finally dying….we should all be able to cut the cord when this happens. Once you are far along with dementia you can no longer do anything. We should be allowed to make a living will that we can be euthanized before it gets to this. I am 80 this year and fear this for my family. I would hate it for them to have to go through something like this and also for me to be afflicted and live in fear or disbelief until the end…..thank you for making this video and explaining every step of this awful disease or condition…..may this wonderful man finally rest in peace….

[GrndmaTJ]

Your descriptions and explanations are spot on. My husband passed away from LBD in 2014. He was 62. His symptoms began in his mid forties. He was misdiagnosed for 8 years. I was blessed to be able to stay home with him as his caregiver until the end. Hospice helped me his last 6 months.

[retiredyeti]

My wife and I both worked in health care until our retirements. We both worked with Alzheimers patients and those with other forms of dementia. My wife retired 5 years before me, to care for her mother, who had Alzheimers Syndrome.
Mom's doctor refused to listen to us when we told her about Mom's symptoms of paranoia and memory loss, and inability to clean house, because Mom would deny it and the MD did not do any cognitive tests. After we moved Mom out of her home, to ours, we got our MD to take her as a patient, and the correct diagnosis was then made.
She lived with us until her death here at home with us by her side one morning, quite suddenly and unexpected. She needed assistance with cares, constant encouragement to take a bite, to chew and to swallow. She never became combative, but she could be extremely argumentative at times. We are grateful that we had training and experience with Alzheimers, but it can really be wearing on the main caregiver. We had Mom in a twice weekly daycare, so that my wife could get a break.
Now, 10 years later, I am seeing the early signs of dementia in my wife, who is 5 years younger than me. As a retired nurse, at least I am not unaware of what is happening, and how to deal with it. Bless all those folks who are caregivers for their aging and demented parents or spouses - you are all secret angels.

[deborahlecomte]

I found this video of your Dad so interesting.I feel privileged to be able to listen to your video.

[Pink__]

My mom is in late stage Alzheimer’s. She is home and hospice is with us for support. I left my job to care for mom during this time. It’s a cruel and unforgiving disease. I love you Mom ❤️ TY for sharing this video and your expertise. It helps.