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
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.
I’m sooo sorry! 😢 I’m so sad right now because this is happening with my dad right now.. it’s so sad and I’m so overwhelmed and scared about the future. And I’m also a single dad to a 3 year old little boy
I am currently going through the same thing with my grandmother 👵🏿, it hurts ! But. I am beyond hopeful for current gene 🧬 therapy treatment to not only treat but cure it
@@javionriley8739 I'm right here with you friend. My father was officially diagnosed a little over a year ago but he was diagnosed late due to his commitment to working. He's had the REM sleeping combative nightmares for several years, though he finally got it checked out when he woke everyone up telling us there was someone outside with a gun and that one or two had already broken in. He also frequently sees "little people" prior/during sleep + while waking up. I'll never forget the first time he had a memory lapse in public. We were at a restaurant, he went to the restroom but I saw him come out confused, he walked outside as I was going to ask if he was okay. When I tapped on his shoulder he turned and looked at me with the blank face/eyes glazed over. He didn't know where he was, who I was, or even what his name was. He sleeps the majority of everyday now, mainly because of how bad/frequent his falls have gotten. He also has Hemiplegic migraines that mimic strokes.
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 ♥️🙏🏻
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. 🙏💕
I hear you Patricia...sorry for the loss of hubby.. And for your gallant effort going thru what must have been the most trying time in your life. Stay well friend.
Very much the same with my father. As a psychologist, I suggested LBD to the doctors after I had read a couple of studies about it. His neurologist wouldn't have it. For him it was Parkinson's only, and he explained everything away that didn't fit. Seeing this video, reading comments, I am 100% sure he had LBD. Don't know if the diagnosis would have helped in any way, though. My dad passed away 10 years ago ...
@@brettspieleiq2384 John ‘s doctor was so knowledgeable and kind. He also cared about me as well. He now is teaching at a university in Cincinnati and no longer practicing because of health reasons.
@@muttleysmith726 Thank you. I pray every day that with all the research some day this disease will be gone. My youngest daughter’s husband found out about three years ago that his mother has dementia. They live in London. I was worried about her because I began seeing signs the last couple years. I think I saw what they ignored because they passed off as just “oh well , just getting older”. But since I visit once or twice a year I could tell the difference in her. My heart breaks for my son-in-law and his brothers.
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.
Thank you for sharing bits of YOUR story! And you're right ... the stories we could tell. Seeing children is a common hallucination for people with LBD ... I don't know why really. I'm just grateful that the hallucinations he has now aren't stressful. I'm so sorry you had to go through it with your mom. So very, very hard.
My mother was very much the same. Her first symptoms showed up about a year and a half before she fell and broke her hip. I noticed that she could not understand numbers, and she was developing the Parkinson shuffle when she walked. After she fell and broke her hip she drastically declined. Fortunately, her delusions and hallucinations were merciful. She believed she was daily talking to her parents, both of whom had died thirty five years earlier. And she believed she was living in the house she grew up in. Occasionally she told me that she had seen my dad. He passed away ten years earlier. Every now and then she would accuse her caregiver of stealing things, but for the most part she had retreated back into her childhood. At the end, she was comatose for two days before she passed away. When I went to see her for the final time and tell her goodbye I thought she couldn’t hear me. But she moved the fingers on her right and and tried to open her eyes.
@@frazzledude There were/are times when his hallucinations weren't scary. But he often accused caregivers of stealing and then accused me of not knowing what was "really" going on. He is starting to talk about his father and it seems comforting to him. While he lost all numerical concepts, he still counts like he's measuring and talks about things being even. I'm glad you had that gift at the end ... something you can hold in your heart and memory for the rest of your life. Thank you for sharing your story.
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..
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.
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.
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.
Wow, great video. This is the reality of LBD. I’m going thru this with my older sister. She calls me multiple times a day every day with one crisis after another and wants me to come over to her assisted living facility. She’s a hoarder, very paranoid, thinks people are stealing from her and trying to poison her. Loses things constantly. Some days I don’t know how I can keep doing this. Thank god she can afford assisted living. It’s very stressful for the caregiver. Thanks for sharing your journey!
I know how it feels to not know if you can do it one more day. I got to that point several times. And yes, the blessing of assisted living is tremendous. I knew he was cared for .. and I knew I didn't have to be the only one. And LBD is so hard!!! Unpredictable, scary, behavioral, etc. I wish you ease as you go through it. ❤️
My father suffers from hallucinations EVERYDAY!!! They are awful. He sees people in the house every day and argues with them for hours at a time... who are you, what are you doing in my house? This is my house, get out. Than he turns on me...you are stupid, you are gonna lose everything you let these people in. They dont care about you. It just goes on and on. You got two minutes to get out of here and then I'm gonna hit you until the blood comes out. Everyday I wish him dead. Can you imagine wishing your own father dead? It is an awful awful disease To suffer like this? 40 percent of all caregivers die before the dementia patient. Sometimes I text a friend and ask them to text me in the morning and if I dont respond to call the police because I am dead. This disease takes 8 years off your life. I wonder if I will live another year? 10 million people a year will be diagnosed with dementia. And, the way dementia is treated is the same way it has been treated over 100 years ago. I feel like crawling in bed and staying there for a week... but i can't. I work full time and then come home and have to deal with all of this. Today before I even left for work at 730 I changed 2 beds, washed 3 loads of clothes, made him breakfast, changed him, fed 5 cats, got myself together and a ton of other things. My stress level is out of this world along with my blood pressure.
My brother passed away from Lewy’s body last year. What a horrific disease. I am still in shock how quickly he deteriorated the last 6 months of his life. His hallucinations, his dementia. His wife had to brush his teeth and help him to do the simplest things. What a dreadful way to go. The day he died my sister-in-law came downstairs and he was nowhere to be found. She found him wondering around the neighborhood “looking for my house”. My brother was a vibrant man, always on the go. Breaks my heart and miss him. My brother was only 72.
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.
Oh Todd, it's so wonderful that you are thinking ahead about that and that you are aware of your condition. This was not the case with my father. Of course, family dynamics are complicated and influenced by many things, but while I wish this hadn't been our journey, it has given me the opportunity to really become the daughter I want to me. At the end of it all, I can look in the mirror and feel good about my choices. Perhaps your children, or even one (statictically, daughters are twice a likely as sons to step up) will grow, learn and become a better person as a result of this journey. Best to you and your family!
@@pebroproductions Thank you for the kind words. As I’m sure you’d agree, I wish nobody has to go down the dementia journey at all. Someday I pray there will be a cure and families won’t feel the pain and anguish it causes. I still miss the Old Pueblo. Coming back in October for my 40th class reunion.
@@ToddLuvsGolf I do agree whole-heartedly. Glad you'll be here in Oct. when temps come down. I wish you and your loved ones as easy of a journey as possible.
Todd Brodsky...you are so brave for announcing Your sickness like you have, my hubby is going thru the same only mild at present 23 out of 30. We have said nothing at the moment to him But it is a little confusing for me as I don't know what to expect, as yet I can see some obvious changes, but what next?? Stay as well as you can Dear friend.
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….
I absolutely agree with you. I wouldn't be able to live with the reminders of how a loved one suffered so much towards the end. It is inhumane to allow such suffering when we are expected to care about people's welfare. Nothing short of cruel.
Thank you so much for sharing this journey. This described my dad so perfectly. sadly he passed on August 18th 2020 and due to covid, we could not be with him. He was in a lovely care home and although it was difficult to see such a strong competent man decline we just rolled with it .one day we visited he told us that they (the staff) would not allow him breakfast and he was upset and said I'm going get me out of here. when we spoke to staff they told us that dad would come for breakfast at 6 am as a lifelong early riser he was hungry. The kitchen staff would give him as much toast he could eat with a pot of tea as it was too early for a cooked breakfast, dad would then go back to bed for an hour and then show up at 7 am for breakfast again he was served toast and tea .8am again dad shows up I want the porridge to which he was given porridge tea and toast 9 am again he turns up and is served cooked breakfast. He was upset that he couldn't get his cooked breakfast at 6 am and this was the part that he remembers.so sad but the staff were so good to him and really cared so much 💔
My father died last year of vascular dementia at age 95. The father I knew growing up was a different, more competent man than my father at the end of his life.
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.
Like you I did the same,quit my job four years ago and I have been taking care of her since then. My dad at 93 cannot help her as she doesn't like a man she doesn't recognize giving her any aid. We shall never put our mum in a home as we want her showered with lots of love all the time.
until I found your channel as well as others...I would not have known about Dementia/Alheizmer etc. I couldn't get my darling husband to see a Specialist...He showed Parkinson motor and non motor signs for about 20 yrs. I was resentful and sometimes frustrated and thought he had no common sense ...and all the host of other symptoms...I am ashamed and asked for his forgiveness each time...He has been diagnosed after rushing him to emergency...my heart goes out to my husband...a very brilliant Scientist...He denies he is ill and it's ok...He is now in a Care center...I see him daily so we can have beautiful moments still...He was fearful, I would leave him...I assured him...I would not! He is grateful...he still remembers me but no other family or colleagues and friends...I will forever love him!!! Before Dementia and all other illness under that umbrella...I heard but never knew...I pray, he will NOT Suffer till the end...He is such a beautiful HUMAN...
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.
I'm so glad if it was helpful at all. The lack of accurate diagnosis adds one more layer to the challenges. I hope this will improve in coming years. 💜
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.
I wish I had see this video four years ago. Our late mother was suffering with dementia.....it took four of us to care for her that we didn't have to put her in a facility. She passed away in her own bedroom surrounded by her things, and her loved ones. Obviously, you have done an excellent job sharing this information, but I would like to contribute one thing.... As moms situation worsened....we found out that CBD oil was helpful (we live in California), we checked with her treating physician, and he agreed it could be helpful.....it was. If you live in a state where CBD is legal, you may wish to speak with your loved ones treating physician in regards to that "medication", and find out if it could be beneficial to your loved one.
Thanks for the video! My dad, who died of vascular dementia, had 10 flip phones. He stopped doing things he ALWAYS DID like picking his teeth with tooth pics. He started sleeping in his clothes. He forgot how to turn off the lights with the wall switch and would instead unscrew the bulbs, even the ones on the ceiling. This last one really got me! He was somehow smart enough to hide the ladder so I kept replacing light bulbs & and wondering why they were blowing out so fast! I could go on and on! He had so many lucid moments I would get confused. Many people thought he didn't have dementia....because of the lucid moments. I say dementia is catching because I had to mirror or go along with his crazy beliefs, because he was my dad and always such a dominant personality. If your family member is suspected of having dementia? Do your best to get the diagnosis ASAP. Has anyone had trouble getting the dementia diagnosis for a family member? It took me 9 months to get the diagnosis.
My dad had a stroke in 2017 and seemed to begin The symptoms of LBD. He has Seizures/hallucinations/anxiety/suspicion/anger/mischievous. 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❤
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.
Thank you for your video. My mom was bipolar, which later in her life had a medication reaction which brought on Lewy body and Parkinsonism (the specialist did nuclear brain scans and many other tests for the diagnosis) with practically over night body function shutdowns. Hers was bad, bad, bad. My heart broke and shattered so many times, especially getting a call in the middle of the night from nursing that my mom called 911 because someone was coming through the window to kill her. I won’t say who, but it was a family member she was frightened of. I’d talk her down from the ether for many hours, more than I can tell you all the while having my dad here living with me having vascular dementia. I was alone, no support or help and ran on no sleep for several years. There wasn’t help offered, not any to get. Anyhow, your video was interesting and I’m so happy your dad doesn’t have the really scary bad moments that some have. It’s so hard on them and us.
Thank you for sharing a small part of your story ... the details are so similar to my journey including that overwhelming experience of being in an endless, high level crisis (every day for years) and alone in my effort so save him from himself. It was one of the most isolate experiences of my life. And while he was always healthy in terms of mental health prior to dementia, when the was first being assessed, I had to tell the experts over and over that he had never been depressed, never been bipolar in his life. We also experienced some of those more violent hallucinations and paranoia. He would call the police because someone was trying to break into his house with a gun. His behavior is stable now but he functioned as a person with psychosis for several years. Again, thank you for sharing a part of your experience. It helps to connect with others who understand. ❤
I was the sole caretaker of my partner of 44 years, I kept him home until the end of stage 6, it was the hardest thing I've ever done; the incontinence, the hallucinations, the falls, the sundowner episodes every night. I didn't sleep, couldn't eat, couldn't leave the house for fear of what might happen. When he finally got violent, I had to call 911 and they said they couldn't leave him in the house with me because he might hurt me. He was admitted to the hospital for evaluation and moved to a care facility three weeks after his meds were stabilized, the progression of the dementia in four weeks was mind boggling, he lost his ability to walk, speak, eat unassisted, and at the end he could no long swallow. Death was a blessing; I'd lost my loving partner three years before his death.
@@AZHITW it shows what a wonderful and selfless person you are. You did what so many couldn’t or wouldn’t. I don’t know about you, I have reflected back to the many years i was doing similar for my folks and there isn’t anything I would have done differently. It was the right thing to do. I hope you find solace, comfort and happiness.
@@AZHITW What you've gone through is so much like what I'm going thru now.Mine was Diagnosed with Early Onset 3yrs ago...Just sad😢 I'm so sorry that you went through all of that.Prayers❤
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.
It's my hope that it will be useful to families and caregivers. There's so little information that is easy to understand and isn't an hour long video. I share this with my dad's caregivers and found out that they didn't know anything at all about LBD. It would have helped them, I think, if they had known more. 💜
I'm so sorry. I imagine it was even harder in 2014 as it was even less known. It's a hard journey, isn't it? Thank you for keeping me in your prayers. That touches my heart! 💜
Wow. I needed this. My mom was just diagnosed with LBD and you have no idea how this helped me to listen to this. It has been a nightmare and I can relate to every single thing you said and showed. God bless you and your father and thank you for sharing this.
Thank you for the video. It highlights what so many go through but those who suffer from it and their family. My dad has Alzheimer’s and vascular dementia. He lost his ability to speak quite early. Before then he would horde keys as people were breaking in and stealing them. He’d even take vehicle keys in and get them copied. When he finally moved into a care home we found hidden keys all over his basement and garage workshops. Also lots of tape measures. So many tape measures. He was a brilliant mechanic (and great hobbyist woodworker) and could just look at something and figure out how it worked. Among other mechanics in town, he had a reputation of being able to fix the things others couldn’t. But as his disease progressed he couldn’t even figure out how to set up the awning on the trailer. Strangely, he wouldn’t remember a simple fix but was ingenious at finding the complicated “fix”. Eg He flicked a switch to turn the trailer water pump on, but then forgot the switch existed. To turn off the pump, he emptied the storage crawl space, crawled in, located the water pump wires, and cut them. My mom would come home and find several things in the house “fixed” in a similar destructive manner, often done through the basement wiring or plumbing. He’s in a wheelchair now. Mostly just stares into space or sleeps. He can still feed himself and has a healthy appetite. He’s 82 now, and likely won’t make it to 83 which is good because who he was is long gone. Not even the child-like person he became remains. But I have many of his woodworking creations. A table, cabinets, magazine racks, wooden games and toys, bird feeder, and many of his old tools that I take pride in using when I’m fixing things. I have newer tools but if my dad’s old tool works, I’ll use that. It makes me feel connected to him…and rather aptly some of the tools are ones his dad used so I like knowing I’m using the same tools my granddad and my father used. I don’t think I’ll grieve when his body dies because who he was died a while ago. I’ve done lots of grieving already for him, and now I get comfort in the things and lessons he left behind. I’ll be visiting him tomorrow with family but he will just stare into space so we’ll (mom, brother, me) recount good memories of his time with us. Maybe locked somewhere inside is a part of him who will understand us and recognize what his life meant to us, and he will feel at peace.
Thank you for sharing your journey. I had to fight the system so hard to finally get my dad diagnosed with his frontal temporal lobe with Lewy Body dementia . He passed in 1999 . It was a rollercoaster of a journey for us all . The Rare Dementia Support group based in UK has excellent information available on line and they also hold conferences too. They are a very good resource to be aware of. Sending love to all of you travelling this journey. Be gentle with yourselves. Take one day at a time. Reach out for support . 💜
Your video has given my husband and I better understanding of this dementia. His mother passed away a few weeks ago from this horrible disease. The different stages you describe are exactly the ones she exhibited. My mother-in-law was a nurse and extremely intelligent making this almost unbelievable to us. She went through every stage you covered in this video. She passed away just 3 months after diagnosis. I was very concerned about my husband's almost stoic reaction to her death. He in my mind was not not grieving as deeply as I thought he would be at her sudden death. When out of concern I asked him about his grief he quietly told me that he had been grieving for 3 months. He said “my mother died 3 months ago”.
Mom was diagnosed as early onset at age 95 with LBD. She lives with me and we now have hospice coming in several times a week. The other day I didn't know if it was a UTI or another hallucination. The roller coaster ride breaks my heart but I keep a brave face for her even if she doesn't know who I am at times. The most heartbreaking part was her depression when she realized something was wrong
Yes! The depression! He used to say that he was going to kill himself if he could find a way out of his memory care facility. And I understand the ups/downs related to UTI's. Those cause falls and hallucinations so it's difficult to recognize. And I know that brave face all to well. It must be hard to keep it for so long while she lives with you. Thank you for sharing this part of your story. 💜
Thank you for your last comment...he is not his disease. Your video was like watching my own Dad, still trying to figure out how to best help him...thanks.
Well done and very informative. My brother has LBD and was misdiagnosed with Alzheimer’s from 2016-23. He was recently diagnosed with LBD when he was admitted to a care center. He is only 67. His case seems rather severe as he has extreme anger and anxiety. The disease has taken away my sweet brother.
So sorry you are going through this with your dad. My grandmother had Parkinson's induced Alzheimer's. She passed away many years ago. It's horrible to see someone you love in the throes of this disease. Thank you for sharing. I try to just remember the good old days, too.
That is an excellent video. It is so sad 😞 anyone has to go threw such a terrible illness. From Wisconsin, take care, you did such a great job explaining it.
Thank you so much for making this video and passing on this information. My aunt had LBD and passed away last year. The disease progressed in the way you described.
Thank you for sharing this personal story. The last sentence is, for me, very important. In my previous work I have creating teachings for clinical staff to remember the ‘person inside the patient’. I’m so glad that you try to honor him in this way.💕
Thank you for posting this excellent video. My grandma had Alzheimer’s, and my father’s doctor doesn’t believe me when I tell him that this disease is so very different from what my grandma had. My dad has a lot of autonomic nervous system dysfunction, the Parkinsonian rigidity, and the cognitive fluctuations. The caregiver fatigue is suffocating at times. I look forward to more videos if you feel so inclined to share.
Thank you for sharing a bit of your story. Yes, trying to tell others, especially family members from a distance, that this is NOT like other forms of dementia can be very hard. And your description of caregiver fatigue being suffocating is a perfect choice of words. I am still documenting my father's decline and will likely share more. 💜💜💜
Your vlog has helped me more than any other. My father is 95 years old and is in the same stage as your father. It is challenging for the caregiver and distressing for the person suffering from it. There is no rationality to what my father is going through. He has days where he is very angry and accusatory with me. His world only involves him now with no concept of the needs of others. I am his sole caregiver and I can say that I am lucky to have a very supportive husband although my husband doesn't really fully understand my father's condition. He still thinks that because my father is able to hold a conversation, although the conversation is full of delusions, that he is still able to understand and comprehend concepts. I have to continually remind him that my father doesn't have the ability to comprehend simple things anymore. My father will argue that things haven't been done when they in fact have and when I ask him to come and see that they have been done, he still tries to say that they haven't been done. He has no appreciation, no gratitude, no happiness in his life and everyday is a day that I have to be stronger than I have ever been in order to deal with him. Thank you so much for making this vlog, it is greatly appreciated.
Thank you for sharing this information and your story. As a RN with a cardio/thoracic surgical step down back ground the doctor just assumed I understood what he was saying. First off my specialty was heart and lungs and secondly as a daughter I am not necessarily thinking like a nurse and that was frustrating. I am fortunate in that as a RN I am able to find the info I needed and that I know how to advocate for what is needed.
This is a very educational video, and very hard to watch at the same time ; Hard to see your hero going through such changes in life and can’t do much about it smh . Thank you for sharing with us ♥️🙏🏾
Thank you so much for taking a moment to write this comment. Thank you for watching it even if it was hard to see. There is comfort in having others witness the journey. 💜💜💜
I live with someone with Louy dementia. She is the nicest person but when she has a delusion her personality totally changes. I appreciate your work in compiling all this information. I will share this video with others. I can't stress enough to be kind to yourself. And use your pain to be stronger for your dad. God's peace.
Thank you for this fantastic clip. What you have described is exactly what so many of us have seen with our loved one with LBD. Your calm descriptions, documented evidence and explanations are very helpful.
Thank you for taking a moment to leave this comment! This journey so isolating and without the dx, we had no idea what was happening or what to do. I hope that our journey can help ease the suffering of others who are experiencing the same thing. 💜
Thank you for sharing. My sister, 73, has just been diagnosed with LBD, a month ago. This is really hard and your information helps me understand this disease.
Thank you so much for helping make sense of such a horrible disease. As a fellow family member, you feel stuck on the side-lines, not knowing what to expect next or what is the new normal each day.
My husband has been living with LBD for the last 5 yrs. and this video has been so similar to what he has been going through. He has been sliding into later stage for the last year and it’s has been quite comforting to watch this.
What an honest video this is, showing such love for your father. It is such an awful disease. Sufferers need as much support and love as possible. It could happen to anyone and no one asks for it. Thank you for educating me on LB dementia.
God bless everyone that’s living with this disease and the families who are heartbroken helping their loved ones through it. I always wonder when the last time I actually saw my mom aside from her disease. Just like this video says, like they were taken from you over night. This video along with all the comments, do give a true description of what it’s like. My mom was diagnosed with Corticobasal Syndrome, with an overlap of LBD. She’s in her 60s and it’s taking her so fast. For what we see in her it’s a cross between Dementia and Schizophrenia with her major symptom being Aphasia. More attention needs to be focused on these neurological diseases in order to find something to slow it down, and maybe one day cure. Thank you for sharing your journey. God bless your Dad, he’s a strong man for enduring this disease. Prayers to you and your family 🙏🏻
This just popped up on my feed and I was thankful for it. My husband has PD with LBD. He is sharing many of the same symptoms as your dad. I have subscribed and will be interested in seeing his progression if you care to share. My husband is in Stage 5 Parkinson's, and about Stage 4 LBD, I think. Bless you and thank you for sharing. Very helpful!
Thank you so much for leaving this comment. I'm continuing to document his decline and plan to create more videos in hopes of reaching others who are sharing this impossible journey. Thank you for encouraging me! 💜
Thank you for this video from a daughter's perspective. My dad had his first hallucination about 20 years ago (that was his only symptom for about 12 years and they were rare)...he was not officially diagnosed until 6 years ago. The part where your dad is playing the piano and he says a nonsensical question and then you answer him so quickly trying to appease him. I do this with my dad all the time. Trying to figure out what answer he wants or what to say back sometimes is very challenging. My dad knows me but does not always understand my role in his life. He knows I am "one of the most important ones" so really that is all that matters! It has been so hard to watch him dissolve away! God bless you and your dad!
Thank you for this post. Your description of your experience is so similar to mine. In the future, I hope to work with families and loved ones around that communication part. It can be so challenging but it's everything. Best to you!💜
Thank you this is so much more helpful than you know! My step father was just diagnosed with LBD last month (after a year of navigating the wonderful medical system we have in the US) and we estimate him to be in stage 5. He has gone from not being able to remember how to get home and losing his job as a truck driver to tremors, hallucinations, and a severe cognitive decline in the span of 8 months. It's good to hear your persepctive. Thank you for sharing.
@PhyllisBrodsky I am so saddened to see what your Dad went through; you are an Angel for all you did and especially sharing such a personal story. God Bless You and your family and May God watch over your Dad… 🙏🏼
Thank you for sharing. My husband is 84 and has some dementia. The way you explain what is happening with your Dad will help me a lot. Praying for you guys
Thank you a million times. My husband and I moved in with my mother 4 years ago . She has Lewy body dementia and it is the most insane and heartbreaking thing I’ve ever seen. You are right that my mother is no longer there save a few lucid moments. She was the most logical human I’ve ever known and not being able to reason with her has been the hardest struggle. The hallucinations are mostly terrible as well as the delusions. I love what you said at the end- it’s the disease- not my mother and I hold dear the lifetime of memories I have of her being her.
I so share your description of this experience being the most insane and heartbreaking thing you've ever seen. Me too! And not being able to reason with person who was previously logical, was definitely one of the hardest parts. It didn't help us that he had been very stubborn throughout his life. That personality trait made it hard for us to see it as the disease instead of his personality. And doctors were of no help at all. The memory loss and repetitive conversations were so easy compared to the "behavioral disturbances". I applaud the courage I know it takes every single day to be your mom's caregiver. I've told so many people that this has been my opportunity to really define who I am as a daughter. Perhaps this applies to you too. I wish you comfort along the path. Thank you for sharing some of your story. 💜
@@pebroproductions Thank you so much. When I was dealing with mom hallucinating that she was being “told” she could not use her bathroom this morning I just remembered that I’m not alone and that someone somewhere was dealing with something similar. It gave me strength.
@@suzymoon2067 thanks for the advice. Sadly my mama passed one month ago. Hospice allowed her to have a peaceful, pain free transition from this world to the next. Dementia sucks.
My heart goes out to you my dad had Lewy body his hallucinations towards the end were horrific. I wish I had had something like this video back then to refer to seeing your dad reminds me so much of mine.
Like you, I also wished I would have had anything that could have explained in any way what were were going through. We didn't have answers or support. I know you understand. Thank you so much for leaving your comment. It really means a lot to me. 💜
Thank you for sharing. This is one of the best videos I have seen on this subject. My mother had what we believe to be LBD, although no doctor said that until a couple of months before she passed. We had lots of paranoid delusions and were told she had major depression with paranoid features. She has been gone 2 years now and I am still waiting on the pathology report from the brain bank to verify LBD. The delay is still due to COVID. Prayers for you and your dad. It is so hard. We are in Tucson too. ❤
I’ve been in the hospital for 4 days with my grandmother, watching the saddest thing i’ve ever seen😭 we are pretty sure it’s LBD/parkinsons. I thank God for videos like this to help me understand more during all this.💔 thank you
what’s even crazier is i didn’t even search for this. we’ve just been talking about it so much, i guess my phone heard and put this video on my suggested. Or God. idk.
My father passed away from Early Onset Alzheimer’s in June of this year. What a journey. I appreciate so much finding these videos where even the slightest thing said by a loved one and I feel understood. I’d have this little game with my dad where I always had to respond differently to the same questions but the goal was to get him to smile. Whatever answer to whatever question…as long as he smiled. I’m sorry you are experiencing LBD…though our journeys are/were somewhat different, they are terribly parallel. Sending love and hugs.
I really understand how hard it is to really feel seen and understood. I felt like I was wandering around all alone even though I had plenty of people who loved me. No one could go through it with me. Thank you for your post. It makes ME feel understood!💜
I’m so sorry you and your dad have to go through this disease. I look forward to the day in the future when no one will be sick Isaiah 33:25 and no one will be in pain or die Revelation 21:3,4 We need God’s kingdom which is the only solution to all our problems. Please take care.
You did a lovely job compiling this video. I noticed three years ago that my husband had dementia and balance issues. It took another 2-1/2 years to get a diagnosis of Dementia with Lew Bodies with Parkinsonism. It is so frustrating for loved ones who want to help, and do not get any help from the medical field. I learned a lot of what you mentioned in your video from support groups. And yet there is so much more to this disease that is still unknown. I wish you the best on the journey with your father.
Not having a diagnosis or understanding that what was happening was a disease was in many ways the worst part. We couldn't stop him from self-destruction until we could step in legally ... and that took way too long. I wish you the very best with your husband. It is a horrible disease. 😢
Absolute great video! Thank you so much for sharing. It is clear, simple, to-the-point and very informative and practical. I've been an Occupational Therapist for over 15 years and everything seems accurate.
Thank you for sharing your journey of heartbreak withh us Having lived with a person diagnosed with Paranoid Schizophrenia I have noticed similarities in behavior. I wish you and your family strength for whatever lies ahead. It takes a lot of patience and )ove and understanding to have to deal with a situation like this.🙏💝
Thank you for this reply. You're right ... it was very similar to paranoid schizophrenia. Except for the memory loss, he was functioning like a person with a severe mental illness. We didn't know about Lewy body back then and now, in retrospect, it all makes sense. I wish I would have known as it would have made it easier. I'm grateful that the worst of of it is behind us. I wish you the very best. 💜
Thank you sooo much for this. ❤ seriously you are brave for sharing this. This helps others to better understand a tough situation. I know it helped me.
Wow. I learned a lot watching this and your father is fortunate to have such a wonderful, caring daughter. I also appreciate the ending of the video. Yes, your father has a cruel disease, but no, he is most definitely NOT defined by it. My mother died with dementia and in no way does that impact who she is and was to me. Thank you so much for sharing this.
Thank you for taking the time to leave this comment. It is very comforting especially for those of use who have to watch a person who looks like our parent but is no longer our parent. I know that you understand. I wish you the very best. 💜
Thanks so much for sharing with us your father's experiences with LBD, and your own story related to that. There's so much I can relate to. My father officially had a Parkinsons diagnosis, but it bothers me to this day that it was almost certainly not a fully accurate diagnosis. I saw how rapidly his cognition declined (he'd been very highly intelligent, so the shock of seeing this was hard to digest) and after doing some research, I felt very sure that he actually had LBD. No treatment he had ever received seemed to benefit him and I'll always wonder if this was why.
This is incredibly helpful, thank you. My Mum has both vascular dementia & Alzheimers, she “sundowns” which was very weird at first, she’d phone me & we’d have a lovely phone chat, then she’ll immediately call my sister & call me horrible names! We have family code when she’s being angry, we just look at each other & say, “That’s not my Mum.” Thank you so much.
Now in the last stages and with good meds, he doesn't sundown any more but when he did, anything could happen. And like you, he said terrible things to me and about me with family members. Still, we keep going, don't we? Thank you for sharing a bit of your story!💜
Thank you. That is my dad. But they still know who we are and trust us. That is so comforting right now. The rivastigmine patch helps my dad a lot ... All the best Julia
I’m so sorry to hear about your trials and tribulations. I too live in Tucson. My little sister was diagnosed with LBD, about 4 years ago. I’m 65, I believe she’s 59. She was an elementary school teacher, her decline has been pretty rapid. It’s hard because she lives in a small town near Houston, Texas. I have been an RN for many years and will graduate with my FNP in May. I tried super hard to convince her daughter to get other opinions as there are meds that can slow down the progression but it fell on deaf ears. I just cry and pray. Sending you prayers of love and light.
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
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.
I hear you. I did the same thing.
I’m sooo sorry! 😢 I’m so sad right now because this is happening with my dad right now.. it’s so sad and I’m so overwhelmed and scared about the future. And I’m also a single dad to a 3 year old little boy
I am currently going through the same thing with my grandmother 👵🏿, it hurts ! But. I am beyond hopeful for current gene 🧬 therapy treatment to not only treat but cure it
@@javionriley8739 I'm right here with you friend. My father was officially diagnosed a little over a year ago but he was diagnosed late due to his commitment to working. He's had the REM sleeping combative nightmares for several years, though he finally got it checked out when he woke everyone up telling us there was someone outside with a gun and that one or two had already broken in. He also frequently sees "little people" prior/during sleep + while waking up.
I'll never forget the first time he had a memory lapse in public. We were at a restaurant, he went to the restroom but I saw him come out confused, he walked outside as I was going to ask if he was okay. When I tapped on his shoulder he turned and looked at me with the blank face/eyes glazed over. He didn't know where he was, who I was, or even what his name was.
He sleeps the majority of everyday now, mainly because of how bad/frequent his falls have gotten. He also has Hemiplegic migraines that mimic strokes.
I'm 71 and have Lewy body Dementia. Very scary on
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 ♥️🙏🏻
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. 🙏💕
I hear you Patricia...sorry for the loss of hubby..
And for your gallant effort going thru what must have been the most trying time in your life.
Stay well friend.
⁹
Very much the same with my father. As a psychologist, I suggested LBD to the doctors after I had read a couple of studies about it. His neurologist wouldn't have it. For him it was Parkinson's only, and he explained everything away that didn't fit. Seeing this video, reading comments, I am 100% sure he had LBD. Don't know if the diagnosis would have helped in any way, though. My dad passed away 10 years ago ...
@@brettspieleiq2384 John ‘s doctor was so knowledgeable and kind. He also cared about me as well. He now is teaching at a university in Cincinnati and no longer practicing because of health reasons.
@@muttleysmith726 Thank you. I pray every day that with all the research some day this disease will be gone. My youngest daughter’s husband found out about three years ago that his mother has dementia. They live in London. I was worried about her because I began seeing signs the last couple years. I think I saw what they ignored because they passed off as just “oh well , just getting older”. But since I visit once or twice a year I could tell the difference in her. My heart breaks for my son-in-law and his brothers.
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.
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.
Thank you for sharing bits of YOUR story! And you're right ... the stories we could tell. Seeing children is a common hallucination for people with LBD ... I don't know why really. I'm just grateful that the hallucinations he has now aren't stressful. I'm so sorry you had to go through it with your mom. So very, very hard.
Thank you for sharing! Sending prayers to you and Phyllis -
My mother was very much the same. Her first symptoms showed up about a year and a half before she fell and broke her hip. I noticed that she could not understand numbers, and she was developing the Parkinson shuffle when she walked. After she fell and broke her hip she drastically declined. Fortunately, her delusions and hallucinations were merciful. She believed she was daily talking to her parents, both of whom had died thirty five years earlier. And she believed she was living in the house she grew up in. Occasionally she told me that she had seen my dad. He passed away ten years earlier. Every now and then she would accuse her caregiver of stealing things, but for the most part she had retreated back into her childhood. At the end, she was comatose for two days before she passed away. When I went to see her for the final time and tell her goodbye I thought she couldn’t hear me. But she moved the fingers on her right and and tried to open her eyes.
@@frazzledude There were/are times when his hallucinations weren't scary. But he often accused caregivers of stealing and then accused me of not knowing what was "really" going on. He is starting to talk about his father and it seems comforting to him. While he lost all numerical concepts, he still counts like he's measuring and talks about things being even. I'm glad you had that gift at the end ... something you can hold in your heart and memory for the rest of your life. Thank you for sharing your story.
So so sorry ❤️
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..
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.
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.
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.
Wow, great video. This is the reality of LBD. I’m going thru this with my older sister. She calls me multiple times a day every day with one crisis after another and wants me to come over to her assisted living facility. She’s a hoarder, very paranoid, thinks people are stealing from her and trying to poison her. Loses things constantly. Some days I don’t know how I can keep doing this. Thank god she can afford assisted living. It’s very stressful for the caregiver. Thanks for sharing your journey!
I know how it feels to not know if you can do it one more day. I got to that point several times. And yes, the blessing of assisted living is tremendous. I knew he was cared for .. and I knew I didn't have to be the only one. And LBD is so hard!!! Unpredictable, scary, behavioral, etc. I wish you ease as you go through it. ❤️
My mums the same :( x
God bless you and your sister ❤️🩹❤️🩹
My father suffers from hallucinations EVERYDAY!!! They are awful. He sees people in the house every day and argues with them for hours at a time... who are you, what are you doing in my house? This is my house, get out. Than he turns on me...you are stupid, you are gonna lose everything you let these people in. They dont care about you. It just goes on and on. You got two minutes to get out of here and then I'm gonna hit you until the blood comes out. Everyday I wish him dead. Can you imagine wishing your own father dead? It is an awful awful disease To suffer like this? 40 percent of all caregivers die before the dementia patient. Sometimes I text a friend and ask them to text me in the morning and if I dont respond to call the police because I am dead. This disease takes 8 years off your life. I wonder if I will live another year? 10 million people a year will be diagnosed with dementia. And, the way dementia is treated is the same way it has been treated over 100 years ago. I feel like crawling in bed and staying there for a week... but i can't. I work full time and then come home and have to deal with all of this. Today before I even left for work at 730 I changed 2 beds, washed 3 loads of clothes, made him breakfast, changed him, fed 5 cats, got myself together and a ton of other things. My stress level is out of this world along with my blood pressure.
@@brendarobertson5011 mine too
My brother passed away from Lewy’s body last year. What a horrific disease. I am still in shock how quickly he deteriorated the last 6 months of his life. His hallucinations, his dementia. His wife had to brush his teeth and help him to do the simplest things. What a dreadful way to go. The day he died my sister-in-law came downstairs and he was nowhere to be found. She found him wondering around the neighborhood “looking for my house”. My brother was a vibrant man, always on the go. Breaks my heart and miss him. My brother was only 72.
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.
Oh Todd, it's so wonderful that you are thinking ahead about that and that you are aware of your condition. This was not the case with my father. Of course, family dynamics are complicated and influenced by many things, but while I wish this hadn't been our journey, it has given me the opportunity to really become the daughter I want to me. At the end of it all, I can look in the mirror and feel good about my choices. Perhaps your children, or even one (statictically, daughters are twice a likely as sons to step up) will grow, learn and become a better person as a result of this journey. Best to you and your family!
@@pebroproductions
Thank you for the kind words. As I’m sure you’d agree, I wish nobody has to go down the dementia journey at all. Someday I pray there will be a cure and families won’t feel the pain and anguish it causes. I still miss the Old Pueblo. Coming back in October for my 40th class reunion.
@@ToddLuvsGolf I do agree whole-heartedly. Glad you'll be here in Oct. when temps come down. I wish you and your loved ones as easy of a journey as possible.
@@pebroproductions Thanks Phyllis!!
Todd Brodsky...you are so brave for announcing
Your sickness like you have, my hubby is going thru the same only mild at present 23 out of 30.
We have said nothing at the moment to him
But it is a little confusing for me as I don't know what to expect, as yet I can see some obvious changes, but what next?? Stay as well as you can
Dear friend.
Thank you for doing this work. It has been not only informational but also a great tribute to your love for your father.
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….
I absolutely agree with you. I wouldn't be able to live with the reminders of how a loved one suffered so much towards the end. It is inhumane to allow such suffering when we are expected to care about people's welfare. Nothing short of cruel.
I found this video of your Dad so interesting.I feel privileged to be able to listen to your video.
Thank you so much. I hope it helps anyone who is coping with a family member of loved one who has this disease. 💜
Thank you so much for sharing this journey. This described my dad so perfectly. sadly he passed on August 18th 2020 and due to covid, we could not be with him. He was in a lovely care home and although it was difficult to see such a strong competent man decline we just rolled with it .one day we visited he told us that they (the staff) would not allow him breakfast and he was upset and said I'm going get me out of here. when we spoke to staff they told us that dad would come for breakfast at 6 am as a lifelong early riser he was hungry. The kitchen staff would give him as much toast he could eat with a pot of tea as it was too early for a cooked breakfast, dad would then go back to bed for an hour and then show up at 7 am for breakfast again he was served toast and tea .8am again dad shows up I want the porridge to which he was given porridge tea and toast 9 am again he turns up and is served cooked breakfast. He was upset that he couldn't get his cooked breakfast at 6 am and this was the part that he remembers.so sad but the staff were so good to him and really cared so much 💔
My father died last year of vascular dementia at age 95. The father I knew growing up was a different, more competent man than my father at the end of his life.
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.
Like you I did the same,quit my job four years ago and I have been taking care of her since then. My dad at 93 cannot help her as she doesn't like a man she doesn't recognize giving her any aid. We shall never put our mum in a home as we want her showered with lots of love all the time.
until I found your channel as well as others...I would not have known about Dementia/Alheizmer etc. I couldn't get my darling husband to see a Specialist...He showed Parkinson motor and non motor signs for about 20 yrs. I was resentful and sometimes frustrated and thought he had no common sense ...and all the host of other symptoms...I am ashamed and asked for his forgiveness each time...He has been diagnosed after rushing him to emergency...my heart goes out to my husband...a very brilliant Scientist...He denies he is ill and it's ok...He is now in a Care center...I see him daily so we can have beautiful moments still...He was fearful, I would leave him...I assured him...I would not! He is grateful...he still remembers me but no other family or colleagues and friends...I will forever love him!!! Before Dementia and all other illness under that umbrella...I heard but never knew...I pray, he will NOT Suffer till the end...He is such a beautiful HUMAN...
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.
I'm so glad if it was helpful at all. The lack of accurate diagnosis adds one more layer to the challenges. I hope this will improve in coming years. 💜
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.
Hi 👋 how are you doing?
I wish I had see this video four years ago.
Our late mother was suffering with dementia.....it took four of us to care for her that we didn't have to put her in a facility.
She passed away in her own bedroom surrounded by her things, and her loved ones.
Obviously, you have done an excellent job sharing this information, but I would like to contribute one thing....
As moms situation worsened....we found out that CBD oil was helpful (we live in California), we checked with her treating physician, and he agreed it could be helpful.....it was.
If you live in a state where CBD is legal, you may wish to speak with your loved ones treating physician in regards to that "medication", and find out if it could be beneficial to your loved one.
Thanks for the video!
My dad, who died of vascular dementia, had 10 flip phones.
He stopped doing things he ALWAYS DID like picking his teeth with tooth pics.
He started sleeping in his clothes.
He forgot how to turn off the lights with the wall switch and would instead unscrew the bulbs,
even the ones on the ceiling.
This last one really got me!
He was somehow smart enough to hide the ladder
so I kept replacing light bulbs & and wondering why they were blowing out so fast!
I could go on and on!
He had so many lucid moments I would get confused.
Many people thought he didn't have dementia....because of the lucid moments.
I say dementia is catching because I had to mirror or go along with his crazy beliefs,
because he was my dad and always such a dominant personality.
If your family member is suspected of having dementia?
Do your best to get the diagnosis ASAP.
Has anyone had trouble getting the dementia diagnosis for a family member?
It took me 9 months to get the diagnosis.
My dad had a stroke in 2017 and seemed to begin The symptoms of LBD. He has Seizures/hallucinations/anxiety/suspicion/anger/mischievous. 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❤
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.
Thank you for your video. My mom was bipolar, which later in her life had a medication reaction which brought on Lewy body and Parkinsonism (the specialist did nuclear brain scans and many other tests for the diagnosis) with practically over night body function shutdowns. Hers was bad, bad, bad. My heart broke and shattered so many times, especially getting a call in the middle of the night from nursing that my mom called 911 because someone was coming through the window to kill her. I won’t say who, but it was a family member she was frightened of. I’d talk her down from the ether for many hours, more than I can tell you all the while having my dad here living with me having vascular dementia. I was alone, no support or help and ran on no sleep for several years. There wasn’t help offered, not any to get. Anyhow, your video was interesting and I’m so happy your dad doesn’t have the really scary bad moments that some have. It’s so hard on them and us.
Thank you for sharing a small part of your story ... the details are so similar to my journey including that overwhelming experience of being in an endless, high level crisis (every day for years) and alone in my effort so save him from himself. It was one of the most isolate experiences of my life. And while he was always healthy in terms of mental health prior to dementia, when the was first being assessed, I had to tell the experts over and over that he had never been depressed, never been bipolar in his life. We also experienced some of those more violent hallucinations and paranoia. He would call the police because someone was trying to break into his house with a gun. His behavior is stable now but he functioned as a person with psychosis for several years. Again, thank you for sharing a part of your experience. It helps to connect with others who understand. ❤
I was the sole caretaker of my partner of 44 years, I kept him home until the end of stage 6, it was the hardest thing I've ever done; the incontinence, the hallucinations, the falls, the sundowner episodes every night. I didn't sleep, couldn't eat, couldn't leave the house for fear of what might happen. When he finally got violent, I had to call 911 and they said they couldn't leave him in the house with me because he might hurt me. He was admitted to the hospital for evaluation and moved to a care facility three weeks after his meds were stabilized, the progression of the dementia in four weeks was mind boggling, he lost his ability to walk, speak, eat unassisted, and at the end he could no long swallow. Death was a blessing; I'd lost my loving partner three years before his death.
@@AZHITW it shows what a wonderful and selfless person you are. You did what so many couldn’t or wouldn’t. I don’t know about you, I have reflected back to the many years i was doing similar for my folks and there isn’t anything I would have done differently. It was the right thing to do. I hope you find solace, comfort and happiness.
@@AZHITW What you've gone
through is so much like what
I'm going thru now.Mine was
Diagnosed with Early Onset
3yrs ago...Just sad😢 I'm so sorry that you went through all of that.Prayers❤
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.
Incredible. Thank you so much for sharing with us. You are a wise and caring woman. Your dad is so lucky to have you.
Thank you for taking time to leave this comment. It really means a lot to me 💜
I am a caregiver for people with dementia. I appreciate your video. It helps families understand a bit more about the disease.
It's my hope that it will be useful to families and caregivers. There's so little information that is easy to understand and isn't an hour long video. I share this with my dad's caregivers and found out that they didn't know anything at all about LBD. It would have helped them, I think, if they had known more. 💜
I’m so very sorry. This horrible disease took my daddy in 2014. You are in my prayers. ♥️🤠🙏
I'm so sorry. I imagine it was even harder in 2014 as it was even less known. It's a hard journey, isn't it? Thank you for keeping me in your prayers. That touches my heart! 💜
Wow. I needed this. My mom was just diagnosed with LBD and you have no idea how this helped me to listen to this. It has been a nightmare and I can relate to every single thing you said and showed. God bless you and your father and thank you for sharing this.
Thank you for the video. It highlights what so many go through but those who suffer from it and their family.
My dad has Alzheimer’s and vascular dementia. He lost his ability to speak quite early. Before then he would horde keys as people were breaking in and stealing them. He’d even take vehicle keys in and get them copied. When he finally moved into a care home we found hidden keys all over his basement and garage workshops. Also lots of tape measures. So many tape measures.
He was a brilliant mechanic (and great hobbyist woodworker) and could just look at something and figure out how it worked. Among other mechanics in town, he had a reputation of being able to fix the things others couldn’t. But as his disease progressed he couldn’t even figure out how to set up the awning on the trailer.
Strangely, he wouldn’t remember a simple fix but was ingenious at finding the complicated “fix”. Eg He flicked a switch to turn the trailer water pump on, but then forgot the switch existed. To turn off the pump, he emptied the storage crawl space, crawled in, located the water pump wires, and cut them. My mom would come home and find several things in the house “fixed” in a similar destructive manner, often done through the basement wiring or plumbing.
He’s in a wheelchair now. Mostly just stares into space or sleeps. He can still feed himself and has a healthy appetite. He’s 82 now, and likely won’t make it to 83 which is good because who he was is long gone. Not even the child-like person he became remains.
But I have many of his woodworking creations. A table, cabinets, magazine racks, wooden games and toys, bird feeder, and many of his old tools that I take pride in using when I’m fixing things. I have newer tools but if my dad’s old tool works, I’ll use that. It makes me feel connected to him…and rather aptly some of the tools are ones his dad used so I like knowing I’m using the same tools my granddad and my father used.
I don’t think I’ll grieve when his body dies because who he was died a while ago. I’ve done lots of grieving already for him, and now I get comfort in the things and lessons he left behind. I’ll be visiting him tomorrow with family but he will just stare into space so we’ll (mom, brother, me) recount good memories of his time with us. Maybe locked somewhere inside is a part of him who will understand us and recognize what his life meant to us, and he will feel at peace.
Thank you for sharing your journey.
I had to fight the system so hard to finally get my dad diagnosed with his frontal temporal lobe with Lewy Body dementia . He passed in 1999 . It was a rollercoaster of a journey for us all .
The Rare Dementia Support group based in UK has excellent information available on line and they also hold conferences too. They are a very good resource to be aware of.
Sending love to all of you travelling this journey. Be gentle with yourselves. Take one day at a time. Reach out for support . 💜
Your video has given my husband and I better understanding of this dementia. His mother passed away a few weeks ago from this horrible disease. The different stages you describe are exactly the ones she exhibited. My mother-in-law was a nurse and extremely intelligent making this almost unbelievable to us. She went through every stage you covered in this video. She passed away just 3 months after diagnosis. I was very concerned about my husband's almost stoic reaction to her death. He in my mind was not not grieving as deeply as I thought he would be at her sudden death. When out of concern I asked him about his grief he quietly told me that he had been grieving for 3 months. He said “my mother died 3 months ago”.
Yes you lose people twice, firstly when they develop early onset dementia then when they actually pass.
Mom was diagnosed as early onset at age 95 with LBD. She lives with me and we now have hospice coming in several times a week. The other day I didn't know if it was a UTI or another hallucination. The roller coaster ride breaks my heart but I keep a brave face for her even if she doesn't know who I am at times. The most heartbreaking part was her depression when she realized something was wrong
Yes! The depression! He used to say that he was going to kill himself if he could find a way out of his memory care facility. And I understand the ups/downs related to UTI's. Those cause falls and hallucinations so it's difficult to recognize. And I know that brave face all to well. It must be hard to keep it for so long while she lives with you. Thank you for sharing this part of your story. 💜
Thank you for your last comment...he is not his disease. Your video was like watching my own Dad, still trying to figure out how to best help him...thanks.
Thank You for sharing your story.It helps for people to get a better understanding of this disease. I'm so sorry for your pain.
I'm so sorry this is happening to you and your family. For what good it may do, you and your father are in my prayers.
Well done and very informative. My brother has LBD and was misdiagnosed with Alzheimer’s from 2016-23. He was recently diagnosed with LBD when he was admitted to a care center. He is only 67. His case seems rather severe as he has extreme anger and anxiety. The disease has taken away my sweet brother.
So sorry you are going through this with your dad. My grandmother had Parkinson's induced Alzheimer's. She passed away many years ago. It's horrible to see someone you love in the throes of this disease. Thank you for sharing. I try to just remember the good old days, too.
Thank you so much for your kindness and for sharing a bit of your story. 💜
That is an excellent video. It is so sad 😞 anyone has to go threw such a terrible illness. From Wisconsin, take care, you did such a great job explaining it.
I am sorry for your pain and I thank you for this video. Sending good thoughts your way.
Thank you so much for making this video and passing on this information. My aunt had LBD and passed away last year. The disease progressed in the way you described.
Thank you for sharing this. Very helpful. May God bless you all during this very difficult time 💖
Very thoughtful video. Thank you so much for sharing your experience with your dad.
Thank you for taking a moment to reply. It means a lot to me.💜
Thank you for sharing. I am going through this with my Mom and finding such comfort that others are having similar experiences.
This clip was a great tutorial for me. Thank you for this.
I'm so glad that it was useful to you!
Thank you for sharing this personal story. The last sentence is, for me, very important. In my previous work I have creating teachings for clinical staff to remember the ‘person inside the patient’. I’m so glad that you try to honor him in this way.💕
Thank for sharing your family’s story
Thank you for posting this excellent video. My grandma had Alzheimer’s, and my father’s doctor doesn’t believe me when I tell him that this disease is so very different from what my grandma had. My dad has a lot of autonomic nervous system dysfunction, the Parkinsonian rigidity, and the cognitive fluctuations. The caregiver fatigue is suffocating at times. I look forward to more videos if you feel so inclined to share.
Thank you for sharing a bit of your story. Yes, trying to tell others, especially family members from a distance, that this is NOT like other forms of dementia can be very hard. And your description of caregiver fatigue being suffocating is a perfect choice of words. I am still documenting my father's decline and will likely share more. 💜💜💜
Your vlog has helped me more than any other. My father is 95 years old and is in the same stage as your father. It is challenging for the caregiver and distressing for the person suffering from it. There is no rationality to what my father is going through. He has days where he is very angry and accusatory with me. His world only involves him now with no concept of the needs of others. I am his sole caregiver and I can say that I am lucky to have a very supportive husband although my husband doesn't really fully understand my father's condition. He still thinks that because my father is able to hold a conversation, although the conversation is full of delusions, that he is still able to understand and comprehend concepts. I have to continually remind him that my father doesn't have the ability to comprehend simple things anymore. My father will argue that things haven't been done when they in fact have and when I ask him to come and see that they have been done, he still tries to say that they haven't been done. He has no appreciation, no gratitude, no happiness in his life and everyday is a day that I have to be stronger than I have ever been in order to deal with him. Thank you so much for making this vlog, it is greatly appreciated.
Thank you for sharing. This was fascinating and very well done. Blessings to you and your Dad.
Thank you so much for taking a moment to leave this comment. It means a great deal to me.
Thank you for sharing this information and your story. As a RN with a cardio/thoracic surgical step down back ground the doctor just assumed I understood what he was saying. First off my specialty was heart and lungs and secondly as a daughter I am not necessarily thinking like a nurse and that was frustrating. I am fortunate in that as a RN I am able to find the info I needed and that I know how to advocate for what is needed.
This is a very educational video, and very hard to watch at the same time ; Hard to see your hero going through such changes in life and can’t do much about it smh . Thank you for sharing with us ♥️🙏🏾
Thank you so much for taking a moment to write this comment. Thank you for watching it even if it was hard to see. There is comfort in having others witness the journey. 💜💜💜
I live with someone with Louy dementia. She is the nicest person but when she has a delusion her personality totally changes.
I appreciate your work in compiling all this information. I will share this video with others. I can't stress enough to be kind to yourself. And use your pain to be stronger for your dad.
God's peace.
Thank you so much for sharing your story. This is the journey I am on right now with my Dad, and this video was very helpful ❤🙏
Thank you for this fantastic clip. What you have described is exactly what so many of us have seen with our loved one with LBD. Your calm descriptions, documented evidence and explanations are very helpful.
Thank you for taking a moment to leave this comment! This journey so isolating and without the dx, we had no idea what was happening or what to do. I hope that our journey can help ease the suffering of others who are experiencing the same thing. 💜
Thank you for sharing. My sister, 73, has just been diagnosed with LBD, a month ago. This is really hard and your information helps me understand this disease.
Thank you so much for helping make sense of such a horrible disease. As a fellow family member, you feel stuck on the side-lines, not knowing what to expect next or what is the new normal each day.
SO stuck! Not knowing what's happening or what's next. I wish you an easy road to travel. ❤️
My husband has been living with LBD for the last 5 yrs. and this video has been so similar to what he has been going through. He has been sliding into later stage for the last year and it’s has been quite comforting to watch this.
What an honest video this is, showing such love for your father. It is such an awful disease. Sufferers need as much support and love as possible. It could happen to anyone and no one asks for it.
Thank you for educating me on LB dementia.
God bless everyone that’s living with this disease and the families who are heartbroken helping their loved ones through it. I always wonder when the last time I actually saw my mom aside from her disease. Just like this video says, like they were taken from you over night. This video along with all the comments, do give a true description of what it’s like. My mom was diagnosed with Corticobasal Syndrome, with an overlap of LBD. She’s in her 60s and it’s taking her so fast. For what we see in her it’s a cross between Dementia and Schizophrenia with her major symptom being Aphasia. More attention needs to be focused on these neurological diseases in order to find something to slow it down, and maybe one day cure. Thank you for sharing your journey. God bless your Dad, he’s a strong man for enduring this disease. Prayers to you and your family 🙏🏻
This just popped up on my feed and I was thankful for it. My husband has PD with LBD. He is sharing many of the same symptoms as your dad. I have subscribed and will be interested in seeing his progression if you care to share. My husband is in Stage 5 Parkinson's, and about Stage 4 LBD, I think. Bless you and thank you for sharing. Very helpful!
Thank you so much for leaving this comment. I'm continuing to document his decline and plan to create more videos in hopes of reaching others who are sharing this impossible journey. Thank you for encouraging me! 💜
Thank you for this video from a daughter's perspective. My dad had his first hallucination about 20 years ago (that was his only symptom for about 12 years and they were rare)...he was not officially diagnosed until 6 years ago. The part where your dad is playing the piano and he says a nonsensical question and then you answer him so quickly trying to appease him. I do this with my dad all the time. Trying to figure out what answer he wants or what to say back sometimes is very challenging. My dad knows me but does not always understand my role in his life. He knows I am "one of the most important ones" so really that is all that matters! It has been so hard to watch him dissolve away! God bless you and your dad!
Thank you for this post. Your description of your experience is so similar to mine. In the future, I hope to work with families and loved ones around that communication part. It can be so challenging but it's everything. Best to you!💜
Thank you this is so much more helpful than you know! My step father was just diagnosed with LBD last month (after a year of navigating the wonderful medical system we have in the US) and we estimate him to be in stage 5. He has gone from not being able to remember how to get home and losing his job as a truck driver to tremors, hallucinations, and a severe cognitive decline in the span of 8 months. It's good to hear your persepctive. Thank you for sharing.
@PhyllisBrodsky I am so saddened to see what your Dad went through; you are an Angel for all you did and especially sharing such a personal story. God Bless You and your family and May God watch over your Dad… 🙏🏼
😭Thank you!
Thank you for sharing. My husband is 84 and has some dementia. The way you explain what is happening with your Dad will help me a lot. Praying for you guys
Praying for you too.💜 It's a hard and unexpected road. I'm glad you have the knowledge to better deal with it all.
Thank you a million times. My husband and I moved in with my mother 4 years ago . She has Lewy body dementia and it is the most insane and heartbreaking thing I’ve ever seen. You are right that my mother is no longer there save a few lucid moments. She was the most logical human I’ve ever known and not being able to reason with her has been the hardest struggle. The hallucinations are mostly terrible as well as the delusions. I love what you said at the end- it’s the disease- not my mother and I hold dear the lifetime of memories I have of her being her.
I so share your description of this experience being the most insane and heartbreaking thing you've ever seen. Me too! And not being able to reason with person who was previously logical, was definitely one of the hardest parts. It didn't help us that he had been very stubborn throughout his life. That personality trait made it hard for us to see it as the disease instead of his personality. And doctors were of no help at all. The memory loss and repetitive conversations were so easy compared to the "behavioral disturbances". I applaud the courage I know it takes every single day to be your mom's caregiver. I've told so many people that this has been my opportunity to really define who I am as a daughter. Perhaps this applies to you too. I wish you comfort along the path. Thank you for sharing some of your story. 💜
@@pebroproductions Thank you so much. When I was dealing with mom hallucinating that she was being “told” she could not use her bathroom this morning I just remembered that I’m not alone and that someone somewhere was dealing with something similar. It gave me strength.
@@suzymoon2067 thanks for the advice. Sadly my mama passed one month ago. Hospice allowed her to have a peaceful, pain free transition from this world to the next. Dementia sucks.
My heart goes out to you my dad had Lewy body his hallucinations towards the end were horrific. I wish I had had something like this video back then to refer to seeing your dad reminds me so much of mine.
Like you, I also wished I would have had anything that could have explained in any way what were were going through. We didn't have answers or support. I know you understand. Thank you so much for leaving your comment. It really means a lot to me. 💜
Thank you for sharing your experience.
Thank you for sharing. This is one of the best videos I have seen on this subject. My mother had what we believe to be LBD, although no doctor said that until a couple of months before she passed. We had lots of paranoid delusions and were told she had major depression with paranoid features. She has been gone 2 years now and I am still waiting on the pathology report from the brain bank to verify LBD. The delay is still due to COVID. Prayers for you and your dad. It is so hard. We are in Tucson too. ❤
This video was so well done and will help many people dealing with this disease. Thank you.
Excellent video!
I’ve been in the hospital for 4 days with my grandmother, watching the saddest thing i’ve ever seen😭 we are pretty sure it’s LBD/parkinsons. I thank God for videos like this to help me understand more during all this.💔 thank you
what’s even crazier is i didn’t even search for this. we’ve just been talking about it so much, i guess my phone heard and put this video on my suggested. Or God. idk.
Thank you for making this video. Love & light.
Thank you! You too!💜
My father passed away from Early Onset Alzheimer’s in June of this year. What a journey. I appreciate so much finding these videos where even the slightest thing said by a loved one and I feel understood.
I’d have this little game with my dad where I always had to respond differently to the same questions but the goal was to get him to smile. Whatever answer to whatever question…as long as he smiled. I’m sorry you are experiencing LBD…though our journeys are/were somewhat different, they are terribly parallel. Sending love and hugs.
I really understand how hard it is to really feel seen and understood. I felt like I was wandering around all alone even though I had plenty of people who loved me. No one could go through it with me. Thank you for your post. It makes ME feel understood!💜
This was amazing! You did such a good job. I
"He is not his disease." Important to remember.
Thank you for this video.
Yes, it's a reminder I've had to tell myself many times. Thank you for your kindness. 💜
This is so very interesting. Thank you
I’m so sorry you and your dad have to go through this disease. I look forward to the day in the future when no one will be sick Isaiah 33:25 and no one will be in pain or die Revelation 21:3,4 We need God’s kingdom which is the only solution to all our problems. Please take care.
Amazing documentation of such a cruel disease ❤❤❤
You did a lovely job compiling this video. I noticed three years ago that my husband had dementia and balance issues. It took another 2-1/2 years to get a diagnosis of Dementia with Lew Bodies with Parkinsonism. It is so frustrating for loved ones who want to help, and do not get any help from the medical field. I learned a lot of what you mentioned in your video from support groups. And yet there is so much more to this disease that is still unknown. I wish you the best on the journey with your father.
Not having a diagnosis or understanding that what was happening was a disease was in many ways the worst part. We couldn't stop him from self-destruction until we could step in legally ... and that took way too long. I wish you the very best with your husband. It is a horrible disease. 😢
Never heard of this...I appreciate the education.
You are so right....your father is not his disease! How wonderful that you have lovely memories of your father! Thanks for sharing.
Absolute great video! Thank you so much for sharing. It is clear, simple, to-the-point and very informative and practical. I've been an Occupational Therapist for over 15 years and everything seems accurate.
Thank you for that feedback! I hope it helps anyone who is learning, suffering, or just needing acknowledgment. 💜
Thank you for sharing your story. It really helps
Thank you for sharing your journey of heartbreak withh us Having lived with a person diagnosed with Paranoid Schizophrenia I have noticed similarities in behavior. I wish you and your family strength for whatever lies ahead. It takes a lot of patience and )ove and understanding to have to deal with a situation like this.🙏💝
Thank you for this reply. You're right ... it was very similar to paranoid schizophrenia. Except for the memory loss, he was functioning like a person with a severe mental illness. We didn't know about Lewy body back then and now, in retrospect, it all makes sense. I wish I would have known as it would have made it easier. I'm grateful that the worst of of it is behind us. I wish you the very best. 💜
Thank you sooo much for this. ❤ seriously you are brave for sharing this. This helps others to better understand a tough situation. I know it helped me.
I'm so glad. I find it comforting to know that I can take my own struggles and help others in any way. 💜
Thank you so much for sharing. I particularly love the way you ended this… most important perspective in the grand scheme of things. Again, thank you.
Thank YOU! And yes, I think of that photo, that man, and our lives. LBD was a horrible disease and not my father! 💜
Wow. I learned a lot watching this and your father is fortunate to have such a wonderful, caring daughter. I also appreciate the ending of the video. Yes, your father has a cruel disease, but no, he is most definitely NOT defined by it. My mother died with dementia and in no way does that impact who she is and was to me. Thank you so much for sharing this.
Thank you for taking the time to leave this comment. It is very comforting especially for those of use who have to watch a person who looks like our parent but is no longer our parent. I know that you understand. I wish you the very best. 💜
Thank you!! …thank you… your father would be proud… you have helped me so very much….I know you will touch & help many more….
Thank you for taking time to say that. It really does mean a lot to me. 💜
Thanks so much for sharing with us your father's experiences with LBD, and your own story related to that. There's so much I can relate to. My father officially had a Parkinsons diagnosis, but it bothers me to this day that it was almost certainly not a fully accurate diagnosis. I saw how rapidly his cognition declined (he'd been very highly intelligent, so the shock of seeing this was hard to digest) and after doing some research, I felt very sure that he actually had LBD. No treatment he had ever received seemed to benefit him and I'll always wonder if this was why.
Wow. Thank you for sharing your father with us. I'm so sorry you are experiencing this. It is terrifying.
Thank YOU for taking a moment to comment. It means the world to me. 💜
Sooo informative.
My sympathies.
This is incredibly helpful, thank you. My Mum has both vascular dementia & Alzheimers, she “sundowns” which was very weird at first, she’d phone me & we’d have a lovely phone chat, then she’ll immediately call my sister & call me horrible names! We have family code when she’s being angry, we just look at each other & say, “That’s not my Mum.” Thank you so much.
Now in the last stages and with good meds, he doesn't sundown any more but when he did, anything could happen. And like you, he said terrible things to me and about me with family members. Still, we keep going, don't we? Thank you for sharing a bit of your story!💜
Thank you. That is my dad. But they still know who we are and trust us. That is so comforting right now. The rivastigmine patch helps my dad a lot ... All the best Julia
I am sorry to hear this, and it must have been tough for you to document this at the time. Very helpful though. Thank you
Such a profound video. Thank you.
Thank you for taking a moment to leave this comment. 💜
I’m so sorry to hear about your trials and tribulations. I too live in Tucson. My little sister was diagnosed with LBD, about 4 years ago. I’m 65, I believe she’s 59. She was an elementary school teacher, her decline has been pretty rapid. It’s hard because she lives in a small town near Houston, Texas. I have been an RN for many years and will graduate with my FNP in May. I tried super hard to convince her daughter to get other opinions as there are meds that can slow down the progression but it fell on deaf ears. I just cry and pray. Sending you prayers of love and light.
That's so hard on so many counts. Not being able to facilitate what you know is right must be so painful! Sending you love and light as well! 💜