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The Painful Truth About Lewy Body Dementia - A Personal Story 

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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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Other Videos of Interest:
Clinical Differences Among Four Common Dementia Syndromes
training.mmlearn.org/video-lib...
Seniors and the Side Effects of Psychotropic Medications
training.mmlearn.org/video-lib...
#LewyBodyDementia #Lewy #dementiacare #dementiacaregiver #LewyBody #dementia

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7 фев 2018

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Комментарии : 1,4 тыс.   
@bigwhiteheron
@bigwhiteheron 3 года назад
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.
@suelyons531
@suelyons531 4 года назад
Thank you. This video should be mandatory to watch for doctors going into elder care. Eldercare in the US is a disgrace.
@stanleywoodison8699
@stanleywoodison8699 3 года назад
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.
@irisrose4732
@irisrose4732 3 года назад
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.
@frankboff1260
@frankboff1260 3 года назад
A totally inhumane medical system. Created for profit not purpose. Heartbreaking. Humans are worthless in the dollar system. 😭
@saltpepperketchup7082
@saltpepperketchup7082 3 года назад
@@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".
@chelsea_belle
@chelsea_belle 3 года назад
AGREED
@SLP8041
@SLP8041 4 года назад
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
@lakeshadow100
@lakeshadow100 6 лет назад
With my dad it was the moments for clarity that were the saddest. He would suddenly realize what his life had become.
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
I'm so sorry for your loss - that must have been extremely difficult to watch.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Absolutely. The hardest moments! Each moment is (was) a gift though. I actually thought I would have many more years but was cheated.
@acree3739
@acree3739 3 года назад
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.
@sueandpatrick
@sueandpatrick 3 года назад
One of the most heartbreaking things i have seen...I am so sorry for your loss Dawn...you did a beautiful job.
@khonkhosilelihle7414
@khonkhosilelihle7414 Год назад
Indeed ey.
@bmell1252
@bmell1252 4 года назад
He had such a kind and friendly face... reminds me of Ray Morano.
@maryblumreich9813
@maryblumreich9813 3 года назад
You mean Ray Romano. I thought the same thing.
@frankboff1260
@frankboff1260 3 года назад
I thought that too.
@fluffgirl1000
@fluffgirl1000 3 года назад
Me too just like ray ..need more patience than I have ...
@usmanhassan1278
@usmanhassan1278 3 года назад
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.
@debbiejansen1178
@debbiejansen1178 3 года назад
It made me cry.
@glynisansara
@glynisansara 4 года назад
This is what marriage is all about. To be there for each other and to remember when your spouse cared and loved you.
@margaretsomerville1411
@margaretsomerville1411 3 года назад
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
@larrygregoire842
@larrygregoire842 3 года назад
Not mine . I'm going to be homelrsd In 2 days . I can't even think right and now have multiple symptoms
@fifitheflowerpot
@fifitheflowerpot 3 года назад
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.
@gdowe1393
@gdowe1393 3 года назад
@@margaretsomerville1411 q
@veeelle2275
@veeelle2275 3 года назад
With dementia.....how you supposed to remember?
@silverlady6126
@silverlady6126 Год назад
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😢😢😢
@MmlearnOrg7
@MmlearnOrg7 Год назад
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!
@pamelalalaable
@pamelalalaable 4 года назад
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.
@Kay-ci5kj
@Kay-ci5kj 2 года назад
🤍🤍
@khonkhosilelihle7414
@khonkhosilelihle7414 Год назад
So true. I still can't differentiate between alzheimer's disease and dementia 🤐
@kathykimes5724
@kathykimes5724 Год назад
Mine just passed away Saturday I wish I would have known about these sites it would of help me alot
@hollywarehouse7938
@hollywarehouse7938 4 года назад
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🕊🙏🏽🕊
@MmlearnOrg7
@MmlearnOrg7 4 года назад
Thanks for watching!
@kathleenmurphy2379
@kathleenmurphy2379 4 года назад
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 RU-vid 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 RU-vid is called
@tips_and_tricks_for_life100
@tips_and_tricks_for_life100 3 года назад
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.
@dominiquedoeslife
@dominiquedoeslife 3 года назад
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.
@samfic6751
@samfic6751 3 года назад
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 🙏✝️❤
@emahoable
@emahoable 3 года назад
Love...
@savaughiefrench9901
@savaughiefrench9901 3 года назад
I absolutely love the way she's so loving. Even when she doesn't understand why he's doing something.
@Mykidsaresmarterthanyours
@Mykidsaresmarterthanyours 5 лет назад
I really don't think I've ever witnessed a more beautiful couple.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you so much. WE did love one another and came through a journey together. I miss him so much it hurts.
@brandyb2931
@brandyb2931 4 года назад
@@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.
@ritasympson2228
@ritasympson2228 4 года назад
Beautiful love. Bless you & your family. Truly a gift
@kwiklathe1979
@kwiklathe1979 6 лет назад
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.
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
And we pray for you as well Mitch. You may find some of our other videos helpful too www.mmlearn.org
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you Mitch. You can do this!
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Mitch, God bless you and you can do this! stay strong and love her.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@eileenlocke7877
@eileenlocke7877 4 года назад
I'm so sorry it's so tiring dn it with my late mum
@ferociousgumby
@ferociousgumby 6 лет назад
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.
@geanjones1506
@geanjones1506 6 лет назад
I have deep respect for Robin Williams
@sundayweiss3065
@sundayweiss3065 5 лет назад
Yo Gumby u got that right.
@ontoyoualways9183
@ontoyoualways9183 5 лет назад
Those who commit suicide are not selfish!! They are sick!!
@tdelbruegge
@tdelbruegge 5 лет назад
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.
@andrewm514
@andrewm514 5 лет назад
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.
@robingallagher8589
@robingallagher8589 4 года назад
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.
@susiemuirhead561
@susiemuirhead561 3 года назад
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!
@jenniferreyes8794
@jenniferreyes8794 3 года назад
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 ❤️
@garysmith7476
@garysmith7476 4 года назад
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
@MmlearnOrg7
@MmlearnOrg7 4 года назад
Thank you, Gary.
@juliecruz6499
@juliecruz6499 3 года назад
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 🙏🏻💗🌺🎉
@timberwolf717
@timberwolf717 6 лет назад
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
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
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.
@Racerboy535
@Racerboy535 6 лет назад
Stay strong, you are a blessing to your grandmother. I'm so sorry.
@mosmith9187
@mosmith9187 5 лет назад
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.
@tectonicD
@tectonicD 5 лет назад
Daniel Jones hang in there my friend. Strength and prayers to you both.
@marilynwillett804
@marilynwillett804 5 лет назад
Read the bible to her. Acts and then John.
@keniacorniel-dipiglia2620
@keniacorniel-dipiglia2620 6 лет назад
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.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
God carried me, as I have no idea how I did it!
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you. It was a tough journey, but we made it.
@paulatiredofthisshit
@paulatiredofthisshit 5 лет назад
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.
@taleandclawrock2606
@taleandclawrock2606 4 года назад
Your love for each other was so beautiful, and he clung to it, and was comforted. Bless you .
@ommandababineaux1888
@ommandababineaux1888 3 года назад
He was truly loved. God bless his family. May he rest in heaven.
@kitno5
@kitno5 5 лет назад
God blessed this man with a kind loving wife full of compassion.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you so much!!!!!
@mrwin8
@mrwin8 3 года назад
This really got me....my dad has dementia parkinsons...and I am so tired and sad over this...Thank you...I am not alone..
@darlenealeckson1254
@darlenealeckson1254 3 года назад
God bless you and your family.
@devina1100
@devina1100 3 года назад
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
@saveournsrey2018
@saveournsrey2018 2 года назад
No mater how toughs he was going through, he still crack a beautiful smile. RIP John.
@cynthiaarons9373
@cynthiaarons9373 3 года назад
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.
@marynnalindseykerce7510
@marynnalindseykerce7510 2 года назад
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
@sweetangiegirl1
@sweetangiegirl1 3 года назад
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.
@JillPickle416
@JillPickle416 4 года назад
What a sweet, gentle man. This is heartbreaking. God bless you all.
@Anna-gz2sh
@Anna-gz2sh 3 года назад
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.
@katsullivan7274
@katsullivan7274 Год назад
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 🙁
@dawnhamilton2357
@dawnhamilton2357 Год назад
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 .
@debbiejudd6512
@debbiejudd6512 4 года назад
This lady is so strong. Gotta love her. God bless you and prayers sent.
@leoross5777
@leoross5777 3 года назад
no one deserves this.
@theroguewriter66
@theroguewriter66 4 года назад
Oh what a beautifully tender moment shared by them towards the end! So much love...🥰♥️🥰
@janiscalaba4932
@janiscalaba4932 3 года назад
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 !!
@MmlearnOrg7
@MmlearnOrg7 3 года назад
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!
@ImeldaFagin
@ImeldaFagin 3 года назад
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.
@mikewood8680
@mikewood8680 3 года назад
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.
@rhondaholland719
@rhondaholland719 3 года назад
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 💕
@lauralaura2293
@lauralaura2293 6 лет назад
such a good wife...thank you for share!
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
You're welcome.
@vickylombardi7908
@vickylombardi7908 6 лет назад
Laura Laura I
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@lindajacobs1487
@lindajacobs1487 3 года назад
@@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.
@deborahfoster3928
@deborahfoster3928 3 года назад
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. ❤️🙏
@Jebbyfur61
@Jebbyfur61 4 года назад
It’s so sad how this hits the brilliant ones. My dad had it too. It was heartbreaking. The psychosis was terrible.
@freddygigliotti7214
@freddygigliotti7214 2 года назад
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
@Zombie-adventures
@Zombie-adventures 4 года назад
Touching story; you could see the love he had for you through all the confusion. God bless you
@sythompson9331
@sythompson9331 4 года назад
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.
@dionnewillis2374
@dionnewillis2374 3 года назад
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.
@chamberpaint
@chamberpaint 4 года назад
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.
@emandeli1
@emandeli1 4 года назад
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.
@tandiparent1949
@tandiparent1949 3 года назад
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. ❤
@sheliafortner2991
@sheliafortner2991 3 года назад
I will pray for you both!
@aiyaemotionaldamage5544
@aiyaemotionaldamage5544 2 года назад
Thank you
@fatratz2012
@fatratz2012 4 года назад
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
@hollzie7348
@hollzie7348 4 года назад
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 😢
@sandywhat2429
@sandywhat2429 4 года назад
Gosh, what a loving wife. What a gift to have someone like this care for you while you're ill and declining.
@clonewarsstudio5609
@clonewarsstudio5609 3 года назад
It's amazing how music helped him talk on that interview.
@aliccolo
@aliccolo 3 года назад
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.
@user-sh2mk8ew4c
@user-sh2mk8ew4c 4 года назад
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.
@rhondaz356
@rhondaz356 5 лет назад
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.😔😌
@MmlearnOrg7
@MmlearnOrg7 5 лет назад
Thank you Rhonda - I felt it was important to tell my story in hopes of helping others.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@michellehollensteiner3624
@michellehollensteiner3624 Год назад
My mom passed away from this disease too. I miss her so much
@debroahisaacs2452
@debroahisaacs2452 Год назад
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.
@zwedenhuizen
@zwedenhuizen 3 года назад
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
@iamlegend6676
@iamlegend6676 3 года назад
How long have you had it and what stage are you in?
@Realityof76
@Realityof76 5 лет назад
That was so hard to watch. But I love how caring his wife was through it all. What an awful thing to happen. 💗😥
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you- Please share with your circle.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you so much. I believe all families would love and protect their loved ones. How could you not.
@kathleenmurphy2379
@kathleenmurphy2379 4 года назад
There's a wonderful man who has a RU-vid 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
@kevinburland7103
@kevinburland7103 2 года назад
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
@slwsoul
@slwsoul 4 года назад
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
@sheliametcalfe
@sheliametcalfe 3 года назад
I cried through the whole thing so sad Rest In Peace John Edward
@amyluvslouie8288
@amyluvslouie8288 6 лет назад
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
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
Amy I'm so sorry that you too were in this horrible situation. We are sorry for your loss.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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
@Chahlie
@Chahlie 3 года назад
You cannot reason with someone with dementia. Distraction is key. I am a caregiver and so terribly sorry for every family going through this.
@normadebodt7718
@normadebodt7718 Год назад
Diagnosed 1-1/2 years ago. Widowed 66yo woman. I hope my kids put me in care before I get to be a problem.
@IamLinda_
@IamLinda_ 4 года назад
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. 😷
@mariondudek564
@mariondudek564 3 года назад
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.
@kathbraxt1
@kathbraxt1 3 года назад
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❤️❤️🙏🙏🌝🌝🌝🌝🙏❤️🙏!
@dawnhamilton2357
@dawnhamilton2357 Год назад
God carried me and John . That’s all I know.
@frnesbit
@frnesbit 3 года назад
Such a sad story and such beautiful people.God loves us,what else can I say.Sometimes you would think it is not fair but love overcomes all.Thank you Jesus..
@kimlersue
@kimlersue 5 лет назад
RIP Sir, in the arms of the Lord!
@isabelrolon3237
@isabelrolon3237 3 года назад
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.
@khonkhosilelihle7414
@khonkhosilelihle7414 Год назад
It's worse in South Africal
@jennyq4979
@jennyq4979 5 лет назад
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.
@MmlearnOrg7
@MmlearnOrg7 5 лет назад
Thank you for your prayers Jenny - I am so sorry for your loss.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@cheryldavis6011
@cheryldavis6011 2 года назад
Oh, my, how moving this was. Thank you for sharing your bittersweet journey with this beautiful man. So so sorry. God bless. ❤️✝️🙏🏻
@margarethoward1752
@margarethoward1752 3 года назад
Oh my Lord, this is the most heart breaking video I’ve ever seen.... I see why you loved him so much. He’s with Jesus with no pain or confusion. Thank you Jesus! You were the perfect wife. Thank you.
@amypetra5021
@amypetra5021 3 года назад
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 🙏🏻
@cacampbell3654
@cacampbell3654 4 года назад
The lack of support for this man and his family is beyond words for me.
@joans5953
@joans5953 3 года назад
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.
@suzyb7187
@suzyb7187 3 года назад
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!
@MM-ti6yk
@MM-ti6yk 3 года назад
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! ❤️
@zentafergiefergie7044
@zentafergiefergie7044 3 года назад
Any form of dementia is terrible to watch someone who you love decline is heart wrenching
@penylayne
@penylayne 6 лет назад
So poignant, yet amazingly beautiful. So much love for each other.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you!!! It was God and a gift of love.
@ReAnnRing
@ReAnnRing 4 года назад
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.
@angelfirelite
@angelfirelite 6 лет назад
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 ~
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
Thank you Angelfirelite.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you so much. John 3:16
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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,.
@suzannelacy8093
@suzannelacy8093 3 года назад
I looked after my wonderful 💓 neighbour who had Lewy Body Dementia for several years and the hallucinations were so terrifying for her because***she did see her mother ***even though she herself was 90yrs old . My husband thought telling her that she wasn't seeing the images would help but he was wrong because she was furious and upset . I told her that mother had gone shopping ..then all was well until the next time , I have never loved anyone who wasn't family as much as that beautiful neighbour .
@jgirl345
@jgirl345 4 года назад
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
@NickanM
@NickanM 6 лет назад
*HEARTBREAKING.*
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
Yes it is.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you- Please share!
@gailwagoner9906
@gailwagoner9906 3 года назад
My Mom knew she had Dementia. In 2010 then Alzheimers sets in. So hard to watch an be around that. She was a beautiful person to see this an be around. She was in Nursing home in Plains Montana for 14 months died December 3, 2017. Watching her fade away. An losing her was hard. I wished there was a cure for Alzheimers 😥♥️
@MmlearnOrg7
@MmlearnOrg7 3 года назад
We do too, Gail. Thank you for sharing your story.
@poppyflower7873
@poppyflower7873 4 года назад
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?
@maryannanderson7517
@maryannanderson7517 3 года назад
This interaction between you and your husband reminded me a lot of conversations I had with my husband who had Alzheimer's. He was so confused and one thing he was confused about was the fact that his doctor told him he could not drive any more. He couldn't remember he had been told that so I had to hide the keys. I also asked his doctor to write a brief note to remind my husband that he couldn't drive so his doctor wrote "Mr. Anderson is not to drive any more. Signed, Dr. Smith." The next time he asked for his keys I presented that note with a flourish and he looked at it and read "Mr. Anderson is not to drive any more." He studied it for a while and then he said, "Hmm. I think I'll write a note saying, 'Dr. Smith is not to practice medicine any more.' " There were many times that I cried and many times that I laughed!
@alisonhopper6724
@alisonhopper6724 3 года назад
Very moving. My father had lewy body disease . It's truly awful.
@catman8670
@catman8670 3 года назад
This is a smart and compassionate lady!💔
@bamagrad09
@bamagrad09 5 лет назад
My precious Papa passed away from this terrible illness on June 27, 2018. I hate how this disease took my strong independent Papa and turned him into someone none of us could recognize. I pray that a cure is found one day!!
@MmlearnOrg7
@MmlearnOrg7 5 лет назад
We are so sorry for your loss Brittany. We too pray for a cure.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
Thank you so much!!! Please share this video with all you can to help others know what to look for for their family for anyone that might need this info.
@hollywarehouse7938
@hollywarehouse7938 6 лет назад
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🙌🏼🙏🏼😇
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
So sorry to hear about the loss of your mother. Bless you for your love and care those last three years of her life.
@lesleymaclennan7899
@lesleymaclennan7899 5 лет назад
Holly Warehouse 👐👐👐👐👐❤🌸
@pameladelmonte2418
@pameladelmonte2418 5 лет назад
So sorry just tragic!
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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!
@PrincessJaz13
@PrincessJaz13 6 лет назад
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.
@MmlearnOrg7
@MmlearnOrg7 6 лет назад
Thank you for your kind comments Jasmin.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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!!!!
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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.
@dawnhamilton2357
@dawnhamilton2357 5 лет назад
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
@karenthomas1158
@karenthomas1158 3 года назад
What a wonderful man, and his wife was lovely, keeping his dignity until the end.
@noelearl5545
@noelearl5545 3 года назад
My Mom died with Lewy Body Dimentia. Watching this video brought back wretched memories. I can’t believe the medical community hasn’t made more strides in understanding this disease. And I know first hand how much they cannot understand what caregivers go through. It was so painful. God bless you!
@peggyr3862
@peggyr3862 4 года назад
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.
@helensmith3917
@helensmith3917 Год назад
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.
@MmlearnOrg7
@MmlearnOrg7 Год назад
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!
@dawnhamilton2357
@dawnhamilton2357 Год назад
Watch the money scams- there is no solution. Hard pressed hands on care. Comes at a high price either way.
@bobb8738
@bobb8738 Год назад
Unfortunatel, we are not all to help our at some point in time the way this loving, caring lady did. I have a couple friends that I knew their spouses also. They guys became so hard to control and almost impossible to be around. They finally had to do what they thought they woukd never do and that was to put them in a care facility. Very sad but injury was happening to the spouse and getting worse. What a sad day for the wife.
@janb2162
@janb2162 2 года назад
I lost my husband of 57 yrs to Lewy Body...he was a beautiful soul & now at peace in his "Heaven Vacation"...
@djkoenig4716
@djkoenig4716 3 года назад
It's hard to know what to say... when my Dad had it & we were caring for him & he would do something like that: I would hear my Dad out & then I'd say: "well there's no emergency regarding that right now, so I'll take care of it tomorrow". Luckily that worked with him.
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