The Painful Truth About Lewy Body Dementia - A Personal Story
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- เผยแพร่เมื่อ 7 ก.พ. 2018
- Learn about Lewy Body Dementia through this personal story from the wife of an actual patient.
Dawn shares actual footage of her husband's painful hallucinations, her thoughts and feelings about the difficulties she faced in convincing doctors that something was not right, in hopes of helping others who are going through this difficult disease, Lewy body dementia. An up close and personal story of caring from a caregiver's perspective and how laughter helped them get through some of the the difficult days.
Lewy body dementia, also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer's disease dementia. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).
Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia may experience visual hallucinations, and changes in alertness and attention. Other effects include Parkinson's disease-like symptoms such as rigid muscles, slow movement and tremors.
Signs and symptoms worsen causing severe dementia, aggressive behavior, depression, and increased risk of falling and injury.
By Mayo Clinic Staff
(1080p)
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Clinical Differences Among Four Common Dementia Syndromes
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My mom had it for 12 years before, finally, she had peace. It’s VERY difficult taking care of a person with this disease. Finally, after about 6 years, we could no longer take care of her needs at home. We felt terrible terrible guilt. I just want to say to anyone in that position right now.... don’t let anyone tell you you are being selfish putting your loved one in a home. There are sooo many factors that go into the decision, and unless someone has been there they have absolutely no right to make you feel bad.
Thank you. This video should be mandatory to watch for doctors going into elder care. Eldercare in the US is a disgrace.
The whole healthcare system seen from a European perspective is a disgrace. In the UK there would never be any mention of payment ever .All medications and treatment would be cost free.
Our atrocious "health care system" is a mega disaster. Dealing with one greedy, smug "doctor" after another is both frightening and extremely tiresome. They have no problem taking your and your loved one's last penny though; then slam the door shut in your face.
A totally inhumane medical system. Created for profit not purpose. Heartbreaking. Humans are worthless in the dollar system. 😭
@@frankboff1260
Yup. My hardworking husband supplies our health insurance, which we cant use because even tho we have insurance, it doesn't mean that we can afford to go to the doctor. On the other hand, my relatives get govt checks guaranteed to arrive every month and can see a doctor 24/7, get MRI's and surgeries and dental for zero $ out of pocket, while my husbands teeth pains him. I hate this feeling of being jealous of the "poor".
AGREED
This is what marriage is all about. To be there for each other and to remember when your spouse cared and loved you.
I was a primary care giver for someone with lewy body my brother's mother in law She also became very combative and was seeing things that weren't there eventually they put her in a dementia facility. I used to go and visit her at least every other day but then she in recognize me anymore and she's to get angry at me and tell me to go away and it wasn't long after that that she passed it was very sad she was such a sweet lady
Not mine . I'm going to be homelrsd
In 2 days . I can't even think right and now have multiple symptoms
It's not easy, one has to be very patient loving humble person to take all that responsibility. I rate her, hats off to her.
@@margaretsomerville1411 q
With dementia.....how you supposed to remember?
One of the most heartbreaking things i have seen...I am so sorry for your loss Dawn...you did a beautiful job.
Indeed ey.
I lost my husband of 37 years on January 21, 2017 after a battle with Levy Body Dementia. I cried watching your video. I know the pain and heartbreak of this disease. Bless you for making this video for other caregivers and medical professionals to understand.❤️ Viki
He had such a kind and friendly face... reminds me of Ray Morano.
You mean Ray Romano. I thought the same thing.
I thought that too.
Me too just like ray ..need more patience than I have ...
My heart sank to see him wipe his tears in the end. I could not watch the whole thing. Very sad. How helpless we humans can be. Yet we want to control everyone and everything. Mam you earned heaven.
It made me cry.
With my dad it was the moments for clarity that were the saddest. He would suddenly realize what his life had become.
I'm so sorry for your loss - that must have been extremely difficult to watch.
Absolutely. The hardest moments! Each moment is (was) a gift though. I actually thought I would have many more years but was cheated.
My heart goes out to you. My husband, also called John, passed away four years ago from a combination of three dementias, Alzheimer’s, Vascular Dementia and Lewy Body Dementia. Dementia is the cruellest disease of all.
🤍🤍
So true. I still can't differentiate between alzheimer's disease and dementia 🤐
Mine just passed away Saturday I wish I would have known about these sites it would of help me alot
This women is one of the best caretakers and wives ever, I can tell you really loved him. You all will be together again, bless you lady.
I lived your life for 3 years💕my mother passed at 67 years old. Caring for her was the MOST HEART BREAKING, MIND BLOWING, WONDERFULLY SAD & HAPPY and THE HARDEST THING, I’ve EVER done. You’re a wonderful human being!
Thank you for the video, God Bless you all🕊🙏🏽🕊
Thanks for watching!
A wonderful man new to the Orchid Community the past few years has talked about having this disease on his channel off and on. His channel on TH-cam is called Rick's orchids. I think he first started out raising African violets when he had to retire. From what I've glean from his videos and some pictures on his website or rather I should say his channel he was a very active person. There's a built-in pool in their backyard and I can see a big collection of motorcycles and he's talked about them every once in awhile on his videos. And then he started to collect orchids and learn a lot about them and applied what he knew about Hydroponics to orchid care. Apparently as an engineer who built hospitals. He didn't have any video posted just about his life but as you watched his videos bits and pieces would come out. He teasing they called himself one time on a video the crazy man. His wife went through nursing school so she would know how to take care of him when things got bad. He hasn't posted a video it almost a year. His last video he talked about why he hadn't posted in a month or so. The reason he had made a video was due to the fact he said with this disease when it says we're going away on a trip you can't argue you can't say no it just takes you away. And he was able to come back for a while and he didn't know how long he'd be back and what he meant by that is being normal and no worry was and who everyone was. But apparently the disease is taking him away from us again. I love to watch an even just listen to his videos because I've learned so much not only about my orchids but about how nutrients work inside a plant is even drawn pictures to demonstrate. And he's also taught me and I'm sure many other people how to cope with things we can't control. I think that's why he wanted to get involved was Orchid something he would have to learn and they always say you need to keep learning all your life so that you keep making new brain cells and I think that's why Rick was able to keep on going because he was always planning the next thing to do with this orchids. a wonderful man new to the orchid community the past few years has talked about having this disease on his channel off and on. His channel on TH-cam is called
You are utterly lovely. The way you were interacting with him was objectively perfect, and it’s obvious to me that you loved John very much.
And he loved you and all the children and Grandchildren.
I'm truly sorry for all of your loss and not happy with the
"Doctor's after Doctor's that misdiagnose's of him for so long" as it made it "harder on you both."😥
I believe he's with Our Heavenly Father and watching over you all.. Prayers of love, comfort, peace and continued strength for you Dawn and your family, as you are an amazing wife, Mother, Geandmother and truly a Christian Sister. Stay blessed and safe to all. Amen 🙏✝️❤
Love...
Thank you for posting. I am going through the same with my mother, who was diagnosed with Lewy Body Dementia. I pray for anyone going through this.
And we pray for you as well Mitch. You may find some of our other videos helpful too www.mmlearn.org
Thank you Mitch. You can do this!
Mitch,
God bless you and you can do this!
stay strong and love her.
Love her, she is like a small child who is scared and is now sure who to trust. It is overwhelming but understand they really are scared yet cant articulate that nor would. I’m here for you.
I'm so sorry it's so tiring dn it with my late mum
You were spot on with your approach. I cared for my mother-in-law as she fought alzheimers. As challenging as it was, we had a lot of laughs and fun. They don't wake up and decide to be like that to upset others; it's a physical degeneration of the brain.
I really don't think I've ever witnessed a more beautiful couple.
Thank you so much. WE did love one another and came through a journey together. I miss him so much it hurts.
@@dawnhamilton2357 We lost my father January 30th of this year because of Louie Body dementia, as soon as I started watching your video's I started bawling, we went through this exact same behavior, he always thought people were trying to break in the house and harm us, he would get up, get dressed and start packing all of his stuff because he said we were moving. My father was a highly intelligent man as well and it was excruciating watching his decline, and it was excruciating for him as well. I remember when he took his cognitive tests, I took him, he couldn't do any of it and he cried like a baby that night because he knew he had done bad, here I am consoling the smartest man I knew that it was ok that he failed hos test and that if he hadn't, then we wouldn't be any closer to knowing what was wrong. And the day he asked me if they had a cure for what he had, it broke me in half, he would say "I don't wanna die." The biggest puece of our family was stolen from us by this disease and it made me even more angry that the medical assistance was almost non existent, they treated him like a problem because towards the end he was aggressive, he was confused and I told them to explain things to him. He gave his entire life to this community and in the end, he deserved more. I am still so angry about that. Now I am trying to hold my mother together, this has just broken us. I taped my father's psychotic breaks as well so we could show the doctor's what was happening and I just bawled watching your video's, I have so many of the same memories. God bless you Dawn, may he comfort you until you can be with your husband again one day. I tell mother she has to pull through this, all my dad ever said was he wanted her to be happy, her happiness was everything to him. I miss him so much.
Beautiful love. Bless you & your family. Truly a gift
Robin Williams had this, but no one realized it until his autopsy. When he took his own life, people said he was "selfish". He had been misdiagnosed with Parkinsons and did not get adequate treatment. HIs wife wrote an eloquent essay about Lewy Body which was published in a medical journal, but it was pretty much ignored, and people still believe it was depression or (maybe) Parkinsons. After his death the doctors said they were amazed at how well he had coped, for so long.
I have deep respect for Robin Williams
Yo Gumby u got that right.
Those who commit suicide are not selfish!! They are sick!!
how does the treatment differ? my mother has shown symptoms of Parkinson's Disease since 1990...been on medication since 1997 and has had a DBS since 2007. recently, the term Lewy Body Dementia has been diagnosed but there has been no change in medication.
His diagnosis was almost right. None of these things can be picked up by CT or MRI scans. He was likely judged to have a typicle Parkinson's the rest can only be confirmed on death unfortunately. God bless all sufferers.
I absolutely love the way she's so loving. Even when she doesn't understand why he's doing something.
Such love.She should be proud of how well she handled an impossible task.He was a sweet smart and kind person.This will probably help people get a diagnosis.
i'm so sorry you had to go through this. John was lucky to have such a loving caring person like you in his life
Thank you, Gary.
My mum has just been diagnosed with this condition, it struck her down in just six weeks😢 Now she can't even wipe her own bottom or clean her teeth... Everyday we loose a little bit more to the confusion and hallucinations. It breaks my heart to watch my dad breakdown in tears because he can't keep her safe like her promised when they got married...😭 I've cried sooooo much for the loss of the person who is my best friend, my mum😢😢😢
So sorry to hear this! We have a free guide full of easy, purposeful activities for people with dementia: training.mmlearn.org/activities-for-dementia-patients
Hopefully you can find it helpful!
This really got me....my dad has dementia parkinsons...and I am so tired and sad over this...Thank you...I am not alone..
God bless you and your family.
Please check out the power of music for dementia and Alzheimers. It's unbelievable how sufferers come alive when exposed to music they've always liked via headphones. All bar none were able to retrieve memories after a session of music and answer questions.
This is such a sad illness, especially for family however there is some hope.
Also someone I know has been getting great results with giving her mom small quantities of coconut oil and hemp oil interchangeably in her diet.
I wish you well and God bless x
This lady is so strong. Gotta love her. God bless you and prayers sent.
no one deserves this.
You are an amazing woman. I wish every Alzheimer patient had a care giving as giving and caring as you are. Thank you for being there for him. I think you did a great job making him feel ok. you are very inspiring woman.
God carried me, as I have no idea how I did it!
Kenia,
It was a higher power! I am just a person on the journey. It was the hardest thing I have ever done. Please share so many others can have an idea if someone in the future starts acting "different"... He didn't seem at all like he was sick, yet we cannot see the brain. Hugs
Thank you. It was a tough journey, but we made it.
It's even in the title. It's not Alzheimer's. It's Lewy Body Dementia.
Alzheimer's is dementia, LBD is dementia,
but Alzheimer's IS NOT LBD.
Your love for each other was so beautiful, and he clung to it, and was comforted. Bless you .
What a sweet, gentle man. This is heartbreaking. God bless you all.
Dementia is the worse thing ever. I just lost my grandpa 12/15/2020. A day before my birthday, which hurt me the most. My grandpa was a father figure to me and I’m thankful that I had him in my life. May all those people who we lost to this horrific disease rest in peace and know that they’re dearly missed and loved ❤️
I've seen this firsthand working in the hospital as a nurse and I can say this is a very misunderstood type of dementia. Still...this lady seemed determined to keep her husband at home. I really commend her because it is not easy being the primary caregiver of someone with Lewy Body Dementia!
God blessed this man with a kind loving wife full of compassion.
Thank you so much!!!!!
He was truly loved. God bless his family. May he rest in heaven.
I do not know him but, I felt sad watching his dementia take him. You were a good & loving wife, just as he seems to have been a good & loving husband & father.
Your husband is in peace now; I hope you are doing well. God bless you.
Thank you for sharing your story.
I needed to see this video I’m my grandmothers care taker I cried watching it because I am going through this right now thank you I don’t feeel so alone
Daniel - sometimes the reality of what is going on is more than we can bear. We wish you all the best as you care for your grandmother.
Stay strong, you are a blessing to your grandmother. I'm so sorry.
Daniel Jones The lady is right find humor remember she will not always be there so do the best you can with patience so when the time comes you will have no regrets. Look into nutrition for the brain what ever can help her and help you.
Daniel Jones hang in there my friend. Strength and prayers to you both.
Read the bible to her. Acts and then John.
Oh what a beautifully tender moment shared by them towards the end! So much love...🥰♥️🥰
No mater how toughs he was going through, he still crack a beautiful smile. RIP John.
What a heartbreaking story. But how blessed he had such a wonderful wife and family to care for him till the end. May he Rest In Peace God Bless your family 💕
The tenderness between you & John shines through this deeply touching video. I'm so glad you filmed that sweet conversation in the garden.
My brilliant husband suffered a TraumaticBrainInjury Nov2008, and thankfully awoke after a 3-week coma remembering he loves me.
They originally predicted his improvement would plateau after 6 months, leaving him with Dementia, which was true. Then it would be a series of neurological events that would precipitate periods of decline. So nobody tried to keep him alive but me. That was 11 1/2 years ago! He stopped talking 4 years ago, tho we can still communicate. But he nearly died recently.
He's here with me in Hospice care now, and what they DON'T see is his adoring smile when he looks at me, how he used to say "Thank you", sometimes, just taking my hand...and how we end every night watching standup comedy specials..having a laugh before lights out. Just because he can't talk nor feed himself doesn't mean he's not IN THERE, and even tho we're old, we're still just teenagers in love. He now has hallucinations that frighten him, but I give him meds for that, and hold his hand & tell him I'll scare the boogeyman away. I treasure every minute he is still with me. He always used to say"Keep me alive! Just not if it's in a coma on life support!" So I have done that. I promised I'd never leave him alone or scared or lonesome...that I'd always take care of him. It's getting worse now, but I do my best to keep him cheery. I'll be devastated when he's gone. Your video makes me wish I'd been filming him earlier...not just hard stuff to show to doctors.
Thank you for this beautiful, heart-wrenching video. Your advice is what I would give, too. Love them, make them feel safe, and scare the monsters away for them. I'm so grateful for these difficult years together, because there's been more than enough love to have made it worth it.. I longed to hear his voice..and lately he's taken to repeating what I just said to him! That makes me laugh, and I praise him for trying to talk, tho he's just mimicking me. He's communicating. The words don't really matter...they're all the right ones. And it's all love.
I do not have words except thank you so very much for sharing this with us. It really means a lot. I'm crying yet it has "warmed" my heart. I would be honoured to hear more.
Hugs to you from Oklahoma; I lost my better half n best friend of 17 years, 2 years ago and soo miss him....I'm with my adopted mom now who started a couple years ago on her road through dementia. ❤
I will pray for you both!
Thank you
This brings back such sad memories. The long nights. The amazing gift of LBD is that amidst all the devastation, the person remains. Thank you for bringing awareness of LBD.
It’s so sad how this hits the brilliant ones. My dad had it too. It was heartbreaking. The psychosis was terrible.
Absolutely! It seems like the most brilliant intelligent ones get this, my father included. He sees people in the house who dont belong there, and yells at them to get out. He blames me for them being there... Says I let them in
It is God awful. Speaking of God, I dont believe in one anymore
I'm sending my angels to everyone who suffer from this terrible disease but most of all, to those who relentlessly care for them. I know what you are going through.
My mom passed away on November 24, 2018 from Alzheimer's. My dad now has dementia. I'm just going to leave it as that. Stay strong everyone. Let's make our lives count. And breath.
My step mum and my 78 year old dad have been married for over 50 years, but not very happily, unfortunately. My dad was diagnosed with LBD a few months back, devastating myself and my brothers. My step mum walked out on him a couple of weeks ago. She couldn't continue to take his abuse, apparently. He is verbally abusive. Im in a different state and I don't know what to do 🙁
It’s the disease. Not your dad . People can’t abandon , yet they do have to keep themselves safe. It is gut wrenching and incomprehensible. It’s like a drug addict out of control
And nothing works as the brain dies. They don’t have answers- just high dollar lock up units that are private pay- 5000.-7000 a month ! No one has that be type of money or support .
such a good wife...thank you for share!
You're welcome.
Laura Laura I
Laura,
I was not so good at moments, I have been told by the experts "after he passed" and they see my video I did things wrong! I did the best I could! It was incomprehensible . Family dynamics and denial play a big part of the insanity.
@@dawnhamilton2357 Sometimes, the "experts" are full of bull! Probably not one of them has ever had to actually go through what you and so many others have.
I hope your life is "normal" and you are happy.
Touching story; you could see the love he had for you through all the confusion. God bless you
What a sweet couple and family. The characteristics of love, compassion, reliability, commitment, persistence, humility -- all the qualities that made him such a great leader are still apparent. All the qualities that brought you such success as a couple in your marriage and family are still apparent. Wishing you and your family love, comfort, and solace
The bittersweetness if it. I cried for your pain and loss and your trial of watching him fade away, caring for him, loving him and being helpless to stop the disease. Bless you❤️❤️. My husband's battle was with bladder cancer. It remained low grade and manageable for 18 years, then became invasive and totally out of control. It advanced rapidly and I saw him worsen and weaken every day. I felt so helpless and so devastated, which I am still. He passed away 12/18/19...exactly 4 months past his 66th birthday. We had so much life left to live together, so many plans. I feel so alone without him. I'll gain my footing eventually, but for now I feel like a stranger in a strange land without him. God bless you for standing by your husband and providing him with such loving care. ❤️🙏
How could the doctors not see this. It’s so sad and frustrating she was deprived of insurance help. I hope she was able to sue those that denied her.
My uncle passed of LBD. He got the help he needed. But what this lady showed us only scratched the surface. It’s so intense and exhausting to the caregiver. But she loved and cared for him to the very last as this this lovely soul.
my brother is going through this right now I had never heard of it until he was diagnosed I'm thankful he has a loving wife there to help him
Thank you for sharing this. My husband and I cared for my father for six years as he declined. Not sure if it was Alzheimer's or Lewy Body, but it was hard. I mean hard hard. We had three young children at the time... the oldest was 8 the day my father passed. My dad remained physically strong until the end. He passed in our home November 2016. It is such a surreal experience... no one can get it unless you experience it. You captured it well here. Your love is remarkable. You honored your husbands life beautifully. Sometimes I just remember the difficult times... you remind me to remember the beauty of my father ...even in his illness. Thank you.
That was so hard to watch. But I love how caring his wife was through it all. What an awful thing to happen. 💗😥
Thank you- Please share with your circle.
Thank you so much. I believe all families would love and protect their loved ones.
How could you not.
This is truly heartbreaking and terrifying at the same time. To lose one's mind can be such a terrible burden on family. The wife truly is amazing but I can't even begin to imagine how the wife has dealt with the burden of not getting the medical help he needed 😢
It's amazing how music helped him talk on that interview.
I cared for my mother who had dementia. I was her full time caregiver for 14 yrs, but the dementia was really bad about the last 2. If I could give one piece of advice for anyone caring for someone with this disease, it would be to tell them whatever they need to hear. If you argue with them or remind them of the death of a loved one, it only stresses them out, which stresses you out and exacerbates the situation. Just lie if you have to and agree with the rest. Trust me, it makes life so much easier.
My Mother had LBD after a long search we did get good doctors. She was able to get a fair amount of understanding of her disease with the help of a really good clinical psychologist. We used both medications as well as some vitamins and herbs. It was such a strange disease with times of great clarity and times of madness. The psychiatrist we saw for some meds was always surprised at how much she understood. She was the first one that could discribe her hallucinations- she actually would sometimes ask if what she was seeing was real. She also maintained a wicked sense of humor and her ability to play the piano. She had also called the police for men with rifles outside the house. It was a wild ride. I finally left work to be with her full time her last 2 years. Hospice was a blessing the last few months allowing me to keep her home until the last week. She spent her last week at the hospice house- which allowed her to be kept comfortable and painfree. The doctor that helped us her entire journey was her pain management doctor- he researched both LBD and also parkinsons. He did walk the path with us until the end. She chose to donate her brain to Mayo Clinic in Jacksonville FL. It did show both Lewy bodies and also the damage from Parkinsons.
Thank you for being transparent and sharing this. I couldn't help but shed tears at the end when he was calm and repeated back to you in the form of a question that ......" he was your angel. ??" THAT was priceless! Moments like that would make up for all the difficult moments. You attempted to help him recall the names of your children. Wow the message he gave them. Also, the moment of clarity when he said "I did the best that I could to take care of you all. Wow!! This vid will be a family keepsake for years to come. God used this to help increase my level of patience today. Your love and compassion are inspirational!!!! Truly, God blessed you with super human compassion and love for others ! Thank you for sharing❤️❤️🙏🙏🌝🌝🌝🌝🙏❤️🙏!
God carried me and John . That’s all I know.
I have tears streaming down my face. God bless you for having extraordinary love and patience. John was definitely blessed to have you for his wife and caregiver. I hope the rest of your life is full of happiness.
Be well and stay safe.
😷
I cried through the whole thing so sad Rest In Peace John Edward
One of the most revealing, emotion evoking videos I have seen. What a wonderful couple. The wife's patient endurance was amazing. You can tell how much they loved each other. Glad he is finally at peace.
Thank you for sharing your beautiful love story. I know the pain of losing a loved one to Alzheimers and memory loss. We are blessed and FOREVER changed by the HOPE OF HEAVEN, John 3:16 🙏🏻💗🌺🎉
My cousin has been diagnosed with Lewy Body. I am beyond devastated. She is like my sister. I love her so much. Right now she is being taken care of by her daughter. I am happy about that. I know it’s going to get tough for her daughter. I want to help. How should I act? How should I talk to her? I don’t want to cry in front of her. I thank you for this personal testimony. God bless you !!
Hi Janis, we have a library of videos for caregivers, which you can search by topic and other filters: training.mmlearn.org/caregiver-training-videos
Hope you find them helpful!
What a strong story. I hope I won't make it to hard for my family and will fight this as long as I can
How long have you had it and what stage are you in?
There's a wonderful man who has a TH-cam channel and it's called Rick's orchids. He also has the same disease his wife Jan became a nurse so she would know better how to take care of him as the disease worse than. He has made wonderful wonderful videos on how to take care of orchids and explaining how different minerals or fertilizers work in different parts of the Orchid. He talks about having this disease sometimes. It really took him for a tumble for a few months last summer and we didn't hear from him he didn't make any postings. Then he had some Lucid moments and he described what it was like. He said when the disease comes along and takes you for a ride away from yourself you have no warning and you can't say no you just have to go. It's his last video that he posted where he talks about it just go to Rick's orchids. He was so brave and he even called himself the crazy man on one of his videos. This is heartbreaking I think he was taking some medication that was helping but it wasn't going to cure him. It's been almost a year since he posted that last video. He was
My God! This was my life with my husband Louie. No one, not his kids, his Drs no one believed the issues. This is exactly what my life was like. No one knew what the problem was. They blamed me until one very kind smart Dr said Lewy body dementia. It all made sense. He was strong, physically healthy, and it would go back & forth. Some days great other days totally crazy. I felt so responsible but he wore me out! He was a CEO of a Fortune 500 company!!! And he was very young!
My heart is broken for you & everyone dealing with this
Amy I'm so sorry that you too were in this horrible situation. We are sorry for your loss.
Amy,
I am personally responding to you. I am so sorry that you went through what I did. We need to share with the world our experience, AND HELP OTHERS. THAT IS WHY I MADE THE VIDEO. God doesn't want families to suffer like we did.
May God bless you and you are not alone. I only made this for the people like us who did their best and loved until the end. Hugs
RIP Sir, in the arms of the Lord!
Bless you lady ... this is something to see. Have a beloved long time friend who is battling a mysterious debilitating issue - his wife thinks it's Lewy Body. Very difficult to diagnose him.
My mom passed from this disease. Thank you for sharing John's journey. Thank goodness he had you....In the garden segment, the viewer could see the gentleness and kindness that embodied John. I hope this has been therapeutic for you as you presented a true depiction of this horrible disease.😔😌
Thank you Rhonda - I felt it was important to tell my story in hopes of helping others.
Please share with everyone, as my intention is to educate people about "what if"... I was actually at a Dementia conference for work when i said to myself " holy cow...does John have this?" Then proceeded to go and pay cash for a CT scan to start the ball rolling! Some people will not be lucky like I was- going to a conference I had no need to go to! Information is power- I want to start the ball rolling for helping people.
John was so gentle and so kind in the end, and was not the epitome of what I was told. Moments were scarey but not the entire journey. I only made this to help others walking through this horrible disease and journey.
My mom passed away from this disease too. I miss her so much
Gosh, what a loving wife. What a gift to have someone like this care for you while you're ill and declining.
My aunt just got diagnosed with this, and doing research I came across this video, I'm horrified and so saddened for my aunt and ur husband, thanks for sharing xo
You had a wonderfull husband and he had the wife he deserved, really sad to loose someone to such an illness but the love you have for him is so heartwarming and real and you seem so strong, I admire people who seem to have such a wonderfull character and heart in them like you booth. I wish you can feel his love forever in your heart. Thank you for sharing hope.
Thank you for your kind comments Jasmin.
Thank you. I will feel his love forever. His spirit of "love one another" and BE KIND..even at the height of his disease. So powerful and a choice!!!!
I was so blessed and he was my world. I’m sad it was cut short and I didnt get 50 years married like we wanted, Please share to help others. He loved Jesus.
He was my ange3l in my life and my world, I would o anything for him to be here. I only know that I was blessed to have him. Thank you
So poignant, yet amazingly beautiful. So much love for each other.
Thank you!!! It was God and a gift of love.
My grandmother lived and suffered from Lewy body dementia for several years before she finally passed in 2006. It was horrible to watch, our whole family were so devastated. She'd have times of complete lucidity, and we'd have her back again for a brief period, and then she'd slip back into the dementia. Thank you for shedding light on this condition and sharing John's story.
Very moving. My father had lewy body disease . It's truly awful.
Oh, my, how moving this was. Thank you for sharing your bittersweet journey with this beautiful man. So so sorry. God bless. ❤️✝️🙏🏻
This was the saddest videos out of all the others I watched. What a beautiful wife, she stayed with her husband and loved him through his pain....God bless you and your children and may your husband be at peace now with the Lord ~
Thank you Angelfirelite.
Thank you so much. John 3:16
Angel
Thank you for your support and kindness. I did love him and make sure he was safe. He didnt know he would hurt himself or others. Please share this with many. We must spread the word and help people recognize the signs.
Ironically I didnt realize how lucky I was to have the perseverance and time with him. It is so lonely without him and I know he is in a better place but this has been so gut wrenching. I want to share we can do this and find peace and love even in the hard times,.
I never heard of Lewey Body dementia. My husband is just starting to have memory problems and I need to research.
God bless you and your family.
This is very sad. My heart goes out to you. You both were the perfect couple to go through this together. Boy, we never know what the future has in store, do we?
What a wonderful man, and his wife was lovely, keeping his dignity until the end.
Oh bless you!! Your husband was a very special man, and you are a fabulous family!! Thank you for sharing your story!! Xx
Your're welcome. Thank you for your kind comment.
Louisa, Thank you for your feed back. My only goal is to help people understand how hard it is to have this diagnosed and to manage the disease and stay sane. Please share with as many as possible.
*HEARTBREAKING.*
Yes it is.
Thank you- Please share!
Thank you for documenting this. And a reminder to family caregivers that no matter how much the symptoms worsen, to love and nurture them even as you would a baby. My father has dementia and no one sees how hard it is to give and hope for the best yet to witness their deterioration. The lack of emotional support ( or otherwise) and empathy from other family, doctors, etc., who would rather leave them for a stranger to deal with. You gave him love, comfort, and security to the very end. God bless you!
I’m so very sorry you had to go this alone. In this day and age there’s no excuse for the medical community to miss this obvious illness! I’m a caregiver on a memory care unit and this is an obvious dementia. You’re an amazing woman! May God bless you richly 🙏🏻
This is a smart and compassionate lady!💔
My Dad’s “long goodbye” took 10 years of my Mother’s soul as well. But, just like Dawn, her love and soft words helped calm him down. Right until the very end, when you asked him how he was feeling, he would always say , “ I’m doing the best I can with what I’ve got.” You can see that same effort in John’s eyes.
When life goes dark…love goes deep
I just found this. I've been a Geriatric Registered Nurse for forty years and have never witnessed such a tribute. God Bless you for giving a voice to those stricken with this disease. xo
Dear Dawn: Your loving final video was very touching and John was so present with you, and all the love you had for each other and your kids came through. My mother has a slow moving dementia. It is heartbreaking and cruel, and I’ve had to be strong for years, breaking down very little, as has my poor father, who has his own host of health issues to deal with. I’ve never written about this on TH-cam, but your video did move me to tears, and I just wanted to thank you for sharing such an important, beautiful moment. I’m so glad you had that with your loved one.
Dear Mercedes - Thank you for your kind comment. I will pass this on to Dawn. I am so sorry to hear about your difficulties in caring for your parents. Please go to our website and take advantage of our free videos for caregivers. www.mmlearn.org We have over 300 videos that deal with caring for older adults, including many videos on Alzheimer's, caregiver stress, medications and more. We wish all the best as you do this important work of caring for your parents - we know it is not easy.
I am so happy it moved you and I know where you are. I am still fighting the emotions and journey I was on. I wanted so much to have footage to remember him when he could speak. Nothing prepares us for this type of journey. We know how to buy a house, prepare for children, and do most things. John would never talk about the "let's have the CONVERSATION".. make a plan. That is why I want to help as many people as I can. I would love to get some of us together to have a conference. It's gonna take a Village to prepare families for this journey. How are you doing and how is your mother? Sadly, the caregiver (your father) will have many health issues from depleting his energy and perseverance. God Bless you. I can be reached at dcnhamilton@gmail.
Thank you for sharing, it takes a chunk out of me every time I revisit the site. The illness is a task, but we are not weighted down by that, it is when we lose them we truly feel the loss- TWICE! that’s why i wanted to share my journey. Stay strong
As soon as I started watching this i said that's my mom. And he made me laugh. And at first they make you laugh. I mean he says "are you crazy?"
Then it gets to the point it's not funny and you cry. And cry. My Mother is in a nursing home.
This has been so helpful. We are going through the same thing with my husband, he is 62 and started to show symptoms in late 2015, but the doctors just put it down as minor memory issues and said not to worry about it. The last 12 months have been awful and his decline is becoming more and more concerning. He is almost mimicing John as he went through the phases, from hallucinations to paranoia, he goes through his clothing multiple times a day, he gets confused where the bathroom is and thinks he needs to pack his old military uniforms because he is going on deployment, he retired from over 20 years ago. It is such a cruel disease, nobody should have to go through it, not the patient or the care givers.
So sorry to hear about your husband, Helen. We have a free guide for family caregivers that is available online: www.mmlearn.org/family-caregiver-guide-caring-for-a-senior-at-home
Hope it's helpful!
Watch the money scams- there is no solution. Hard pressed hands on care. Comes at a high price either way.
Thank you for posting this. I went through this with my dad and it's so hard not to lose patience. I believe he had Lewy Body because of his intense hallucinations, but there is so little help for caregivers.
I'm sorry Cathy - that must have been a very difficult situation with your father. And you are right - there is little help for caregivers, that it why we are committed to providing caregiver training videos at www.mmlearn.org.
I’m so sorry for your loss. He seemed like a beautiful soul much like yourself. God bless you and your family ❤️
I just lost my 68 yr old mother too LBD... I cared for her FOR 3 years... she was so terrified especially at the end. She couldn’t comprehend WORDS OR OBJECTS like how to use the toilet... the decline was mind blowing!!!
My mom, she was so scared and she tried to hide it from everyone... it was AGONIZING FOR MY FAMILY☹️😢
We read JESUS CALLING FOR HOURS which was the only verbal way too keep away the major anxiety, because SHE WAS SOMEHOW AWARE OF IT.... Ativan at the end, because her brain lied and she thought she was ok☹️
I laid in bed with her after she forgot how to walk, and I got her a catheter to void, (for her too pee) because she held it for 2 days...which led to SEPSIS and ultimately her passing-because she forgot how to walk... after she didn’t know how too pee anymore😢
I pray for the world to gain more KNOWLEDGE OF THIS HORRIBLE DISEASE, my thoughts and prayers. For all going through THIS!
I love YOU MOMMA! I’ll see you in Gods time! YOU DID GOOD🙌🏼🙏🏼😇
So sorry to hear about the loss of your mother. Bless you for your love and care those last three years of her life.
Holly Warehouse 👐👐👐👐👐❤🌸
So sorry just tragic!
Thank you so much. Your momma was so blessed to have you. You made her feel safe and cared for. It was definitely hard on our hearts right !!!! God Calling is my go to Book to this day!
Wow! What a great closing in John’s life! He has those moments of lucidity to think about children, wife and God! He had a wonderful partner in life! ❤️
This brought tears to my eyes and memories from 2019 when my husband passed away. We also lived with his dementia, although we never got an 'official' diagnosis because he was too stubborn to see a doctor about it. I think one of the hardest parts of this disease is knowing that you will never see the person you once loved again. Their body may be there, but the essence of who they were is gone. It is so difficult. Bless you and your family for taking care of John until the end. He was fortunate to have you and the comfort of home.
This video breaks my heart. I lost my husband last February 2022 to dementia. He worked so hard and raised a wonderful family. When I met him one of the most awesome things I loved about him was how smart he was. It got to where he didn't know where we lived. I am so grateful for every day we had. God bless dear one.
What a beautiful tale of love and devotion to one another. I hope you are both at peace now - on different planes of course. Thank you for sharing your story.
This was very hard to watch from me but cathartic as well. I helped my grandmother take care of my grandfather when he had this terrible disease. I know what you went through and you did the best you could. you were so good to him, never getting visually upset in front of him is a big deal because they don't know what they're doing. Like you said they've regressed to infants and when an infant is upset you coddle them. When my grandfather finally passed away he sometimes remembered two people. I was lucky enough to be one of them along with my grandmother. RIP to all the souls taken from us too soon that we love.
My mother died of this incredibly horrible dementia. Very hard to diagnose. Looks like Parkinson's at times. Alzheimers at others. Thank God for the support of my sister and spouse. Many many sleepless nights. May God bless you and give you peace.
It's worse in South Africal
You do a great job, it's sad and scary how our body can fail us like this. I am an aged carer, I go to peoples homes, many with some form of dementia. The families really appreciate the help and support. It's a tough illness to be dealing with for both family member and patient
Had me crying 😢 you both love each other you can hear it and see it. Thank you for sharing. Your a kind and wonderful lady x
What an amazing teaching moment. You are a wonderful person. You’ve been to hell and back . Thank you for sharing this part of your story.💕
I pray for everyone who is dealing with this awful illness, patient, spouse, and family. I was the sole caregiver for my father and while he never got the right diagnosis, they called it Pre-Senile Dementia just to give it a name, so he never got the right meds that might have helped him a bit. It is almost two decades ago that I dealt with that, and the scars are still there. You do the best that you can and just try to help you both through it. Dawn, you are an angel and it was beautiful to see the two of you together, thank you so very much for sharing your story.
Thank you for your prayers Jenny - I am so sorry for your loss.
Thank you Jenny for sharing. I'm so sorry for your loss. Please share with others. we are going to need to inform others so they do not feel like we did. No known cause, or cure. I can be reached at dcnhamilton@gmail.com It takes a long time for the scars to fade.... they never go away.
You cannot reason with someone with dementia. Distraction is key. I am a caregiver and so terribly sorry for every family going through this.
My husband was diagnosed in 2017 on our Anniversary. Many of the things you show in this video are almost word for word conversations and experiences we have had. I covered all the mirrors and got rid of all the clothes in the closet except the bare minimum. Putting the shoes or other items in the car is almost a daily event. Waking up and following him around the house all night when caregivers and family are not there to help. I could not do this without my daughters' help. It is a very expensive disease even with Medicare. I finally bought child safety knobs for all the outside doors. Like your hubby, mine was an expert in his trade, but now cannot even push the buttons on a remote or turn on the light. We have night lights throughout the house and it is a common occurance to have every light in the house on all day and all night to try to circumvent hallucinations. The most horrid part is when Capgrass gets ahold of him.We spend hours looking for Me because in his mind I am someone else. You are correct. He is like a helpless toddler only too big for me to pick up and carry to safety. Only the Lord has been able to sustain us and help us to enjoy many joyful moments and your message is spot on, there are many opportunities to nurture and love & have an all out belly laugh....even in the middle of the night.
I am Living in the midst of this. I have heart failure and anxiety and don't know ow how long I can do this.
I’m so sorry. I just lost my precious husband 2 years ago to LBD. it was so heartbreaking to see him be paranoid that I was trying to poison him and refusing to eat. Also it was so hard when he said I was. Or his wife. Demanded to see his wife. No amount of talking could reassure him so was better to change the subject.
Awe, that was so sad but also very sweet when he was talking about his babies
Came across this video this morning and watched it thinking of my mother who had LBD. Initially my mother was told she had MS. About three years into her “MS” she was diagnosed with LBD. Eventually she needed more care than I could give her and I had to tearfully place her in a nursing home. When she was diagnosed with it everyone I talked to had never heard of it. this included Doctors and all the staff at the nursing home. I had to print out information from the internet in addition to giving them a LBD information packet. I would visit her two or three times a week and changes in. Nursing staff and doctors always meant I had to re-educate because the new staff didn’t read the info in the chart!! There were many missed steps and info as well as treatment during her LBD journey. I ave a family member who works at a hospital and often detects the LBD before the doctor do! So much more education needs to be done to make life easier for the patient and the caregiver. Thank you for posting this video. God bless you for all the love and care you gave your husband.
The lack of support for this man and his family is beyond words for me.