LIVING WITH LEWY BODY DEMENTIA | EP.17 FRUSTRATIONS ARE HIGH AS WE PROGRESS

[@carolbopp7736]

I'm an RN and I took care of my husband for 6 years with ALS. My husband had a great sense of humor always and that made the progression of his illness much easier to adjust to as the changes occurred. Your medical knowledge of neurological diseases and Jason's sense of humor will help you keep your sanity during this horrible chapter in your lives. I admire your dedication to continuing to put out these videos and take all the negative comments by the public. First of all, they have NO understanding of what you and your family are going through and how stressful this illness is for you as his caregiver. My husband was only 59 when he passed and 23 years later I still grieve what we lost. I know you probably cry in the shower, cry in the car, cry everyday and I hope you have a good support system around. My husband was lucky enough to have his friends come everyday. Keep your wonderful laugh Leslie. You have a beautiful family.

[@m.jcardinal]

Sorry for the loss of your husband at age 59 from ALS. I have know 3 people with ALS. Very sad to see them decline at young ages. May God Bless you and if you celebrate Easter, Happy Easter 2023.

[@bethk9329]

I lost my Dad after watching him struggle with 10 years of torture with Alzheimer’s dementia. My Mom is now going through 15+ years of dementia and is in stage 6. Totally different then Dad only a few similarities. Those of you who are here to judge others in their worst times need to go educate yourselves better and scroll on to another Chanel. These people have been the most gracious and kind people to share part of their journey with you. If it’s not exploitative enough for you then just move on. Blessings and much love to you Leslie and Jason and your families.

[@FaithAloneUK]

Ah yes. 💔 The tears that flow when we are alone… But then we take a deep breath, dry our eyes and put on our best smile again, ready for whatever comes next. God bless you all who suffer and can rarely smile ‘in your heart’ any longer.

[@hahayourmom00]

I don't think calling it a "horrible chapter" in their lives is helpful.

[@creativemair]

Carol, you hit the nail on the head! No one can possibly know what it's like unless they have walked in our shoes! I have one dear friend I can talk with because they have been through it!

[@tdebisschop1432]

My dad is in stage 7 where he doesn't know us anymore and can no longer walk and mumbles more than talks. I've seen these stages first hand and know how frustrating, hard, and heartbreaking they can be. Things no one sees first hand. May God's guiding hand be with you during this stage in your lives 🙏

[@jellyandjam08]

So sorry that you are going through this with your dad. I cant imagine the pain and anguish of seeing someone who was so full of life and energy and now they are in these stages and their memories are gone. Prayers for you and for all going through this.

[@tracyanderson3715]

My Aunt is 7 stage. Hospice is making it so she can come home from nursing home to a hospital bed hospital equipment Care Team and it’s not like she’s passing in a week they based it on 6 months or less and other scales they have. I’m just happy that she can go home and have support and let her pass with dignity. My heart truly goes out to you. This disease is horrible for patient and their family.

[@kimkelly9046]

May God bless you as you navigate this

[@maureenostermann291]

People just need to stay in their own lane especially when they have no idea what they are talking about. It infuriates me that you get criticized. Hope you have a blessed Easter!

[@sunshinegal4294]

Amen!

[@pattykochenower4222]

Totally agree!! Stay in your own lane and if you can’t support Leslie and Jason, don’t watch . I think you’re doing an amazing job everyday . I do feel bad for Jason , still being so young, and all the trips and adventures he still wants to go on . Hang in there 🙏Thank you for taking us on your journey. Happy Easter !! Bless you guys and yes, stay kind everyone!!!🐣🐇 ❤️

[@sheilahackney6214]

I so agree!!🤔😥

[@kathythomas4839]

For Jason’s privacy it is not necessary to “see” the bad parts! He deserves to have his dignity respected as you do also! God bless you both!

[@burnsdiana1]

I think it IS necessary when she says she is trying to educate her viewing audience about the realities of his disease.

[@Nbdycares2]

​@@burnsdiana1 absolutely not. Her and Jason sitting and talking is plenty. Absolutely do not need videos of anyone at their worst. If you are going through it them you already know, you don't need to see it.

[@kathythomas4839]

@@burnsdiana1 I think them just talking about it is enough. It’s hard enough knowing what kind of man you once were & now seeing how much you’ve changed & lost. He won’t always be able to put on a “show”.

[@plantsbythemoon9049]

Amen

[@juliehowman3912]

@@burnsdiana1 there will come a time where Jason won’t be able to engage with show time. Already we have seen his decline in that. Recording a man in his vulnerabilities for others morbid curiosity is not being a responsible educator. The way Leslie chooses to share the journey she currently traverses exhibits her love for the man she married. She safeguards him from people like yourself who take pleasure in the torment of others. During times of distress, reaching for a camera is the last thing on one’s mind. They share the testimony of how his thought processes are flawed and his dexterity compromised. They inform us of the different foibles he faces thereby expressing the taxing nature of his decline without denigrating or humiliating Jason. Together they have safeguarded his dignity.

[@lizdavidhopper8924]

I don't know anybody, personally, that would be willing to hold up a camera as they go through there day and show how it really is. To be able to talk about what the two of you experience in a day, is amazing to me. My husband and I are in our 80's and we are experiencing some of the frustrations Jason commented on, re: we remember how we would have so much energy to work in the garden, go camping, visit our family and friends and that is not realistic anymore. I feel your frustrations, Jason. Thank you, both of you for what you do and why you do it. Liz

[@donnatorres7145]

🙏🙏🙏

[@marlenebeck1739]

Thank you again for sharing your difficult journey. It is so obvious that Jason has an amazing mind and his showtime episodes are still so fun to watch. Leslie, what a gift you are. Your million dollar smile and laugh are an absolute delight even through your tears. 😢 I’m linking my heart with yours in prayer support. So thankful that you are leaning on the everlasting arms.

[@jettawilcox467]

Laughter rhe best medicine.

[@lisarosebud6404]

Love and prayers and He is risen indeed! Happy Easter

[@rhondadavis1483]

So well said…He IS risen indeed!❤️

[@BrLambert]

I have to tell you I laughed so hard concerning his last purchase, you don't do anything mediocre, that was priceless and at the same time I wanted to hug ya both. I will be smiling and thinking of you all. Glad you were credited too.... 💕

[@amyberg1413]

Yes! I got caught up in all the emotion and forgot about the hilarity of the air craft loader/unloader(?). So funny and sad at the same time. But you both pulled off the dichotomy of the story so well. I didn't know if I should laugh or cry!

[@teijaflink2226]

Honestly I think this shows of Jasons incredible, funny personality and brain, not many would cone up with a stunt like this, even if it was sad and stressful.

[@leslieskoor2351]

Leslie, you are doing exactly what is needed for Jason. No one knows your situation. You are the expert! This long goodbye is so very hard.

[@Nbdycares2]

A long goodbye is a very good term for it. So hard.

[@pbickley1]

You’re educating more than you know. My best friend is in the final stage of Lewy Body which I never heard of before. She seems to be progressing very quickly. Try not to listen to the mean comments, you are doing good work.

[@kathycampbell1977]

My mother has dementia and it's very hard to deal with. I'm not at all like you...positive, pleasant , upbeat. You're so patient and kind .......I feel like I'm such a b*tch. You are wonderful! Bless both of you ❤

[@lobo1368]

I'm so sorry for your friend. Prayers for you both and other friends and family ❤

[@joglesby8079]

@@kathycampbell1977 we all deal with things differently. Our lives may look the same, the diagnosis may be the same, but every case is different and hard in its own way. May God bless you and your mom.

[@mobilehomelife4028]

@@kathycampbell1977 Kathy, please do not be so hard on yourself, the situation you are in is very difficult, I know, my brother and I were 24/7 caregivers for our mom for almost four years in her home, it can be an exhausting experience.

[@highpocketsnana1333]

Hi Jason and Leslie, I just wanted to let you know how much I look forward to your updates. I am the caregiver of my husband with dementia. We are much older but it is still very hard. We do not know what type of disease it is but his short term memory and logic is extremely poor. He is now loosing some of his long term memory. Like Jason he was a highly educated man and was a systems analyst for the space shuttle. He retired at 70 and is now 84. I'm ten years younger. I just simply wanted to say thank you so much for all your videos and sharing. I wish you a glorious Easter. Sending much love and light to you both. ❣️

[@susanmckim6637]

Until someone has walked a mile in your shoes, those unkind comments need to be kept to themselves. Bless you both for your informative videos regarding this journey you did not chose. And why on earth would anyone want to be filmed if they are having a bad day? I sure wouldn’t. Have a blessed Easter!

[@sandragarwood1948]

“Don’t ever let anyone put your light out.” I love that. Keep smiling and laughing, Leslie, because goodness knows you could be choosing the opposite so very easily. I adore your bubbliness ... you do shine, so very brightly. 💕💕

[@sanditubia5061]

I truly enjoy your videos, and find myself looking for them. Leslie, you handle these situations with such grace and understanding. Jason, you are one funny dude. The love between the two of you is evident, in so many ways. I appreciate the effort and amount of planning and editing these videos require. Thank you for sharing your lives with all of us. Happy Easter!

[@kandicec.5081]

Yes exactly what I wanted to say!! I thank you for sharing y’all’s journey. I know it’s super duper hard because my Granny had Alzheimer’s and it is so hard to watch your loved ones go through any of these. Somehow you make the journey seem a little bit more brighter because you both have such an amazing disposition. I think your doing a great job showing your journey. Caregiving is so hard but yet so fulfilling. I’m so thankful for the opportunity to be able to care for my Mom. It’s a super hard “job” but I wouldn’t trade it for anything. Special memories are made. God bless you both.

[@mscoffeenews]

I about died when I saw what Jason bought. I know it probably wasn't funny to you Leslie, but oh my goodness. I had to run into my son's room and show him what it was. Leslie you are a trooper and I love the love you have for each other.

[@debbrajsligar]

What she said ☝️❤

[@sherrya6902]

I’m so sorry…do people really say those things? How incredibly stupid they are!

[@penelopemoon2848]

💞 I’m with you guys. My mom is in the middle of the decline from Hydrocephalus. Today, she forgot my name for the first time. I didn’t let her see my eyes tear up. I miss her sooooo much. Dementia is the cruelest of the cruel. I know we’re tested, it’s just overwhelming me this minute. I have siblings and other family. I still feel alone. I have conversations with Jesus, I know He is with us. Thank you for sharing your experiences and courage. You help me with the loneliness. 💞🙏🏻

[@tracyquamme7669]

@penelopemoon2848 I read your comment and teared up myself. I feel the sorrow of dementia in my father, I too feel alone although I have two brother's. I share in your faith in the Lord and am so thankful to have Him to cry too and get strength from. My prayer is that I finish well and love and honor my parents through this very difficult and trying season of life. Not many around me understand the grief of slowly losing a parent to this disease, and having to watch it everyday because I am the one that lives the closest. I see you, I hear you and send you a big hug as a sister in Christ. Happy Resurrection day!

[@creativemair]

I hear you Penelope. I feel very lonely. I feel so alone in this situation. It is my husband that has Alzheimer's Dementia. I too have conversations with Jesus! There is no one to be "My Rock" except Jesus!

[@terrym.2264]

Penelope can you explain about the hydrocephalus? Is it common for someone with hydrocephalus to get dementia?

[@Alisha_79]

I am so sorry!! I've only faced not being known to my great grandmother. Last 6 months, my mom didn't have kids and I was my aunt. Who happened to be my age when my mom didn't have kids. It's soo hard. She may still have days she remembers you. There was a transition period before I permanently became my aunt. I hope the same for you!!

[@elainespratt5521]

My husband has Lewy body, he will show boat in front of people. I once had my brother say the same thing about he didn’t think my husband had anything wrong with him because he aways seems ok in front of people. He is roughly on the same stages as Justin. I can only applaud you guys with these videos. Thank you xx

[@yvonnekneeshaw2784]

Agree

[@torontokat54]

Oh Leslie, I really need to have a conversation with you because I am the caregiver to my father who has Lewy Body Dementia. It is so, so, so, so frustrating when they Show Time and people think I am the sick one because "there couldn't be anything wrong with Dad". I have been blamed and criticized and all sorts of things with this journey I am on with my Dad. Big, big, big Hugs to both of you and an extra big hug to you Leslie for making these wonderful videos and yes I also follow you for your Charming Abode as well!

[@jackieschulz2028]

I remember when you first shared being afraid to leave him home alone while you were a nurse and explaining what Jason used to do for a living. That really put ot into perspective for me.

[@karynerickson6943]

I have never, ever left a comment on KZbin but must applaud you and Jason for your courage to make your journey public. In 2021, my brother was diagnosed with Corticolbasal Degereration after a fall at work. This is a journey down a long road with unexpected twists and turns - it is unchartered territory for both the person diagnosed and the family care providers. Bitter and sweet. Emotional. Financially straining. It can tear a family apart or bond them together. I have followed your videos silently. No more. Thank you! One thousand times.

[@yvonnejenkinson9460]

I am with you on the “ he doesn’t look any different to me “comment 😏I get that off my family at times about my husband who has vascular dementia and Alzheimer’s 🤷‍♀️ I just don’t have the energy sometimes to even reply or explain but, like you I live with my husband 24/7 we see it all 🙏🏻

[@kimhamburger673]

God Bless You both. The frustration is real. I fought stage 4 cancer for 3 years, it came to the point I had to have help with everything. It’s really hard. I’m doing great now. I admire you forvtelling your story.

[@iansmom3305]

I literally had to cover my mouth while laughing when you showed the aircraft loader, because , logically, I was like , you could totally use it to paint a house or hang Christmas lights on a roof . And I hope you can look back at it and laugh too ❤ I hope that you continue to record all his good days so you can look back and remember them as the stages progress . Lastly, Start using the middle finger emoji to address the ignorant comments. 😊

[@lynnshepard7485]

Weeping through this video, I FEEL you! I have LBD and my precious daddy died with LBD last October. I slept till 5:30 this afternoon…definitely not getting anything done; I sleep through my medication alarms. I’ve made very little progress cleaning out his house to be able to sell it. I live by myself with no family around. There is a support group in my area. It’s run by a care agency that I used for my dad before he went in to a care home. The caregivers didn’t understand LBD and some of them were very impatient with him, so I figure why try to attend that group? They were excellent cooks, though! Daddy loved that! 💗 I’m not sure why I’m writing this seemingly missive, except to say there are those of us that have some understanding of what you’re going through and maybe we can love and pray each other through this journey. I try to find joy in each day and I praise God for my blessings. Love and prayer for you both. James 3:12

[@ruth6110]

Just read your comment and wanted to send a word of encouragement your way. It's great that you are taking the time to continue to be grateful. I think it really touches God's heart in a special way when in spite of our hardships, we remember to give Him thanks for His blessings. Keep thanking God and calling on His Name for help in all your difficulties. He is still a miracle working God. May the grace of the Lord Jesus Christ, the love of God and the fellowship of the Holy Spirit be with you. God bless 🙏🙏🙏

[@lego65100]

I love the awesome, loving duo that you and Jason are. ❤ Yes to that last statement... "Don't let anyone put your light out!" I love Leslie's gentle humor and the way Jason is always trying to get a laugh out of her. As for the frustration about people's thoughtless comments... been there myself, and experienced that. 😐 Dad had Frontotemporal dementia, language variant (not the behavioral variant). He quickly lost his words, and got to where he didn't understand our words. He was well and truly lost, without a way to communicate! The frustration was that he showboated in front of doctors, friends, and anyone he felt had a high degree of judgment or power. So people often thought that Dad's only problem was the lack of language. But what they didn't see... he had zero short-term memory, no sensory ability (we couldn't let him prepare his own food, because he would poison himself accidentally), he lost things constantly, and his Sundowners was off-the-charts awful. But all friends saw was this jovial, kind, wonderful man (that he absolutely was!!) without all the issues we saw behind the scenes. In short.... I know, Leslie and Jason... I know what you're going through is so much harder than it looks, no matter how well you're able to do these videos. There's just no way to capture the EVERYTHING. Much love to you both. You're doing the best you can... and with a large amount of grace.

[@elynrebels4535]

I love you two. Keep your laughter Leslie! ❤That comment reminds me of a time when I was in a new podiatrist's office (with my teen son) and was simply being friendly, and the doctor commented "Wow, you have a big smile-I've never seen someone smile so much", and it was said in such a way to clearly be meant as a critique. I was stunned and embarrassed by his comments and momentarily silent. Then my son said "I like your smile. I think it's great." This happened 20 years ago but is still a precious memory of my son sticking up for his mom. Never went back to that podiatrist.

[@sdeaglefeather]

Wow! That brings tears to my eyes. What a wonderful son. I hope he still finds your smile great.

[@teijaflink2226]

How wrong to shame people who smile and try to be happy.

[@bess8523]

I love you guys, GOD bless you.

[@peggydingee1808]

My husband had lewi body dementia. No one is the same

[@em......]

sending massive hugs to you both. I felt sad when you said that you try not to take Jason's anger personal when he lashes out. I never managed to succeed in that area when my mum had dementia. I knew it wasn't personal logically, but the things she said were so harsh and the time she tried to punch me in the face just made me cry. She also wanted to travel and I felt so guilty for not taking her back to Scotland one last time. So much love to you both. Hugs from Australia x

[@yvonnekneeshaw2784]

My mom was also angry & volatile for 8 years and it was the hardest years of my life. Now the latter 2 years at a home she no longer recognizes me and is very calm. Thank God

[@Angela-do8xk]

Another one of the most frustrating things for me is that if I feel sad or hurt by something, I can't discuss it with them because there isn't really any empathy there to work through something like there used to be. I know they can't help it, but it still hurts.

[@creativemair]

Angela, do you get frustrated when others say, "They can't help it" because I do. We know they can't help it. I don't talk with those people because they don't understand what it's like!

[@peggydove8756]

I absolutely understand. My husband was completely different from Jason. The stages are the same but my husband lost his speech. I know it has to be hard to understand if you've not been thru it. Prayers for you guys! 😊

[@melaniedowning8421]

I only cry whenever I read these comments. Soo much love for you both and everyone suffering with this disease. My husband was a heart surgeon and very kind with great bedside manner. He started with the legs tapping to music in his head 20 years ago but we never knew anything was really wrong. He was diagnosed with Alzheimers 2016, then vascular as well as Lewy body 2022, plus he has Lyme disease and the black mold in our house made it all get real crazy. I miss him terribly even while he still lives. I could never film a bad time as you live in the moment with them helping them at their weakest most anxious. Trying desperately to help them and console them everytime. No you would not even be able to film that. God has blessed us with each other and He knows best.. I am so grateful to be the one chosen to care for my husband and we will have an eternity together as he came to Christ after the black mold made us homeless for a while. Hallelujah. Thank you for filming and posting for us to learn and laugh with you at your sweet man. You guys are wonderful! Hang in there.

[@ACharmingAbode]

Sending you hugs!

[@carolynneyounan571]

Jason and Leslie, thank you for being so vulnerable. The pain this disease causes to your hearts is evident, and yet the smiles still surface with God’s help. Praying for you both and for your girls too.

[@Sedum54]

An aircraft loader...The shock for you Leslie! You couldn't make that up! You obviously dealt with it so well.

[@suzanneburns2931]

Went through the same thing with my husband , buying things he didn’t even know how to use or need , making phone calls to people he didn’t know from advertisements in other countries , then I would get the bill . He did these things in secret. The best day was when he forgot how to use the phone . We had a hospital appointment and they asked him if he knew why he was there , to which he answered “yes I’m here to learn how to sing “ He was serious . If company dropped over he also tried to be funny because he remembered fun times with these people , but approached the situation with inappropriate behaviour that he thought was normal. Not funny .He also would ask people for money , even people we hadn’t seen in years , it was mortifying , if he was “himself” he would not have done these things. At that pint he could still be animated and try to interact ,but it was uncomfortable and exhausting , then he would crash sleep for long periods of time .Eventually he confused night and day . God help you both and give you strength , patience and humour for as long as you need it . Blessings .❤️💕❤️

[@rogerokelley]

Jason is still our daily prayers. Thank you for your service🇺🇲🇺🇲.

[@lmkays]

You are both so awesome! The grace in which you handle this season of your lives is truly inspiring

[@pennasylvania]

So eloquently spoken. Thank you.

[@janicethompson7923]

I know I've said this before but when my late Farmer has LBD no one knew anything about, we had very little guidance, so I love that you do these honest real life videos and help everyone that is watching & dealing with LBD or any dementia by sharing your experience. It was very lonely for me and my Farmer - I wish I had your videos to help give me 'community' which in itself is very supportive.

[@sharonsomers5513]

It is very brave of you two to share your life. I can’t believe how people criticize people that only see them on a video for a few short minutes. You are amazing Leslie being the care giver. Jason does a pretty good job explaining his life

[@janetbailey6639]

My Mom died from MS when I was 21 and then my dad remarried and his second wife got Alzheimer’s 30 yrs into their marriage. I know it’s not the same as Jason’s but we all knew it wasn’t the one with the dementia’s fault and it’s not the caregiver’s fault it just is what it is. No one wants it, no one is prepared for it, but the one thing I learned along the way was my Parents generation was really good at being married, they were devoted to each other in a way that doesn’t exist too much anymore. So when I care-gave to my dad for his last 3 yrs of life it was such a privilege for me and so Lesley I pray you will also have that special honor too with Jason. You two are very special and I am just amazed how Jason will take the time when he can to share his walk with others. Thank You bith and I will give continued prayers your way. Hugs Jan from Ohio

[@3kidmama]

I'm the one being cared for by my amazing family. Thank you for this video, Leslie and Jason! - For yrs when well-meaning friends would get a chance to briefly see or talk to me, they would then inevitably (out of my range) tell my hubby and daughters "That must be great that your Mom is doing so well!" My family knew the wks of EVERYONE planning, hrs of hard work, and actual praying behind the scenes that it had taken to get me in place to meet/chat a few minutes w those friends. I didn't fully understand my family's frustration with those kinds of comments - as I would be just be happy that my friends saw me looking fairly well. - After watching these videos I now understand how much MY "show timing" during those brief encounters gives a very different perspective on what my life/OUR family's life looks like to outsiders. Hearing Leslie's comments help me understand how hard it is for caregivers to hear those uniformed opinions expressed. When so much of your life is being the caregiver, comments (unintentionally) dismissing the suffering/pain/difficult of day to day living for BOTH caregivers and disabled/sick one. It would be much more encouraging for caregivers if (when the "sick" one looks well) their amazing care and love were acknowledged rather that it feeling like these life consuming efforts are not needed. Caregivers - you are unsung heroes and we appreciated you even if not able to communicate that - God sees you and is honored by your hard work and dedication to your family!

[@Cinloushe]

Your comment here made my eyes leak, I’m sorry you are on this walk but am glad you are not alone. Blessings to you and yours.

[@3kidmama]

@@Cinloushe Thank you, Cindy! ♥

[@alj770]

I took care of my husband with vascular dementia for around 10 years. The toughest part to watch was the change in his personality and the loss of his short-term memory and executive function. Happy to see that Jason's language skills still seem to be intact and that he is still very much able to speak to the point, once he gets past "show timing." It was wise to include the example of the aircraft loader -- that brought his deficits into much sharper focus. Kudos to you both for continuing this series. I know it can't be easy to share your lives this way but it is very helpful to those on similar journeys. Hang in there, guys.

[@debbieblair3329]

Thank you for the update. My husband has a lot of health issues and it’s frustrating as a caregiver as it is for him. Glad you talked about how Jason is different with friends. I find this very frustrating with my husband. Some only see that side of him. And so true caregivers catch it all. Prayers for both of you.

[@debbrajsligar]

I feel for you both. I was a life enrichment director at care centers for many years & people would get on me for not having their family member at an activity they usually enjoy...and let me tell you that sleep after stimulation for about the amount of time your talking about is the NORM! My heart breaks that anyone would get on another about laughing too much. I'm sorry some people are bullying you. I had tears in my eyes watching this time. You've been so amazing & my prayers go out to you! I know how much you love your man & it's commendable what you're doing for him every * single * day! I'm hoping you're getting loved on by those closer to you! I love you girl! You got this 🌷❤️🎉🙏

[@mariekizzia938]

Thanks for being real - I am struggling with depression and getting older which are limiting my activities as well. Leslie, your laugh is helpful.

[@karenmartin1894]

Lewy wife here, and I’m sending a big ehug to you, Leslie. Y’all are a little bit farther down the road--not much. Thanks for bringing awareness to this horrid disease.

[@pam164]

It seems like your living on a roller coaster with Jason and it must be so hard as you love him and you see the changes in him as each day goes by.

[@poppies1215]

It is so courageous when in a teaching moment you both can be openly vulnerable to your subscribers about how you are handling such a debilitating disease and its progression. In that seesaw of emotions that are unpredictable your portrayal of how you handle the stages of the disease is so helpful to see and learn from. The most difficult part of living with these setbacks is remembering to take the bad times with a grain of salt. Let it roll off your backs so you don’t take things personally. As a caregiver myself of an elderly parent, I find the unpredictable mood swings of anger and frustration sometimes overwhelming. When those tough times come along (more often than not these days), I lean into my personal space and take a step or two away from the drama to refuel for the next challenge. That could mean just stepping out of the room, perhaps shedding a few reality tears and then regaining the composure to endure and handle the next times to come. For Jason it is Showtime. For me as a caregiver (and more than likely Leslie’s time)it is my version of the Sopranos on Homebox. You win some, you lose some, but somehow you see it through. Hang in there you lovebirds. Keeping it real is what makes your videos so moving and worthwhile. God bless you both for reminding us all to greet our life challenges gracefully with compassion, understanding and common sense. Keeping it safe always. Easter blessings.💖

[@pamelapainter7350]

I wish I'd said that! 👍

[@Barbara-fy8cs]

People just don't understand how hurtful they can be in their blind ignorance. As an RN if seen all the stages of this disease; there is a time to film and a time not too. Thank you for sharing your story and sweep the ignorance of others away.

[@rebeccarich1913]

Just had to reply to this wonderful segment, You and your husband remind me so much of my husband and myself. Married very young and now we are 53 years into our marriage. While we have not had the lewy body situation to deal with, my mother suffered dementia for years and has since passed. I was always told to take her into my home and care for her and quit my job, on and on. When I would have her here, she would try to get the basement door open to go see her friends in the basement 18 wooden stairs and just danger every where you looked. She would try to go outside in the middle of the nite.. we live outside Chicago and this could have been catastophic. She did have to go into memory care until she passed. Oh the remarks I had to endure. You are doing such a great job with Jason, the love of your life. Please know you are doing the best you can and what a blessing for you to share your journey. Such an inspiration you both are..God Bless you both and your beautiful family.

[@janicecoil7320]

Thank you for sharing. You both are so delightful to listen to, even with all the complications that come with these frustrations. Just keep laughing. I love your laugh, Leslie

[@sunshinegal4294]

You keep on laughing Leslie! Laughter is sooo healthy, contagious and needed. And as you’ve said, “Don’t let anyone put your light out!” 🌟💡

[@g5369888]

I'm so sorry that you have to deal with defending yourself, Jason, or the disease to random strangers. Everyone's story is unique. I pray that Jason will always have the ability to show boat, because dementia is not something to wish upon your worst enemy. I want to say thank you for sharing a small glimpse of your story....it is a privilege for us. I thoroughly enjoy your videos and have shared them with friends and family. You guys are the best!

[@mariabailey3691]

Proverbs says laughter does a heart good like medicine. Keep laughing!! I really admire both of you and praying for strength and joy in this difficult journey.

[@rainewilson7139]

I can’t believe I’ve followed you on this journey from the beginning and never commented. I think this has been out of the greatest respect for you and the disbelief that there can be so many negative comments out there, as you share this incredibly personal journey. I have experienced dementia within our family and it is a tough journey. I have the greatest amount of admiration that you share this challenging journey, so that we might all be prepared and possibly recognize symptoms that enable us to be proactive in seeking medical assistance that we might disregard had we not have foresight. Your ability to put a positive spin on life, even when not feeling positive, is remarkable. And I had the utmost respect a few postings ago when Jason couldn’t be the showman. Jason - you don’t have to be the showman for the people that care. I am following your journey, witnessing a couple dedicated to their care of one and other and as advocates for many struggling on an unknown journey. You are brave, strong and caring. Thank you for sharing your journey, so that we may all learn xox

[@tracywilliams61]

Love that Jason’s there with you talking the good, bad and ugly. Just know there’s more of us that love your channel than the crappy ones

[@jtdavis4411]

You guys are so sweet to allow us into your lives, to try a reach people about this disease. We thank you for that. To address the you not showing when Jason is having a difficult time, I think that is a respect thing and I for one am glad that you dont film that. We are such a nitty gritty world, we dont need to "see" that. We continue to pray for Jason's Dr's that God give them to knowledge needed to care for him, for the support you and your family need going thru this. ❤

[@alvagardner9678]

Lewy! My darn keyboard!! Tony is the guy being interviewed on this radio show. Has helped us more than words can say!

[@donnamcinelly7774]

Thank you for these videos. Sometimes I feel so alone and frustrated . My hubby was diagnosed at 65 with dementia that was 10 years ago .The last three years have been challenging. He has cannot drive , has problems communicating and doing things he wants to do. You inspire me to be a better care giver

[@bonniedugle1763]

Most of us are aware Jason is Uber intelligent. I feel like this contributes to people not understanding his illness. Because he's able to be so eloquent in conversation, which is a huge blessing, they don't think he's sick.

[@carolkoehn6225]

I am with you no one should ever compare their situation to anyone else’s. I absolutely enjoy your channel. I am a CNA and I am with all different clients, patients & residents that I do on a daily basis. Plus I had to take care of many family members with Alzheimer’s, Dementia & other Diseases, I enjoy your updates on Jason. I’m sorry people are being so rude or whatever y’all don’t deserve it. We continue Praying for y’all.

[@yvonnekneeshaw2784]

I SO feel your frustrations when people say there is nothing wrong. Mom has Alzheimers (10 years now) and in a PCH for 3 yrs now. The relatives who never spent more than an hour or 2 with her…told me “you are the worse daughter ever” “she is fine” when in fact I am a very loving daughter who took time to become informed about this disease, went to support groups, and loved/cared deeply. And mom was NOT fine. Caregivers have to be very thick skinned when it comes to such comments. It hurts and makes one feel like a liar…which we are not. The relatives were in complete denial and mom “show cased” well all her life and esp during the early to mid stages. Dementia care blazers on you tube has great info as well. Thank you two for sharing and being honest. I know your lives are getting tougher and I also know that your faith & love from others keeps you going…prayers.🇨🇦 your channel is your gift to us right now❤

[@ionecuff6323]

I have no one with any form of illness right now. I was a care giver for both my parents and my husband till they all passed. I subscribe and watch your channel because of the tremendous amount of love you two have for each other. There is so much RESPECT that you two share for each other. So you see, I watch because of the wonderful people you are and you show what a marriage/relationship really is; being loving, nurturing, caring, and devoted not just through the good times, but the challenging times too. Thank you for sharing your journey, but more so, what marriage and LOVE truly encompasses. May God Bless you and your family with more days filled with love and laughter.

[@bettecox1730]

When you've seen one case of dementia, you've one case of dementia. I admire your courage. I've walked the Alzheimer's road with my husband. Blessings to you both.

[@Secular-Serenity]

So many people appreciate you sharing your journey. I think you mainly share about how you are handling this as a wife and caregiver. Maybe most people do not know what true Lewy body disease looks like and good for them, they are lucky. Keep doing as you are doing, people don’t have to see everything and I don’t think they truly want to. Everybody loves Jason and how he makes you giggle.

[@ericmartin7603]

I love your laugh. Please don't let anyone put YOUR light out!

[@paulaweaver1438]

Are you feeling better, Leslie? It takes a lot out of you to go though all this!!! And I know through your videos you are dealing with your own health issues! Bless you both!

[@darlenesmith7680]

Leslie.. I am so sad for EVERYONE dealing with this cruel disease. I think life is cruel enough at times and when you're living with this horrible disease-it's just hell on earth I would imagine. Never let ANYONE take your beautiful laugh from you....Jason is BLESSED to have that laugh daily. I am so sorry but God has the answers..the blessings and the love, for you both. Keep your faith in him! 🙏💛💛🙏

[@cathysolis1948]

You two have an obvious love and devotion. As hard as this is, the fact that your love and positivity shines through is very much inspiring . My husband who had a stroke 11 years ago at 55 has to deal with not doing a lot of things he has loved in the past. What I do admire about his attitude is that he says, I got to do these things before and is grateful. Thanks for your honesty and God bless you

[@janwilliams6517]

I feel every word you both say. My husband is in stage 3-4 with Alzheimer’s. He wants to travel too, but I can’t do it because I can’t keep him safe. Years ago he was up early and out the door to see everything, now if we go somewhere he would just rather sit and watch TV. He doesn’t know what is going on. He always was in good shape, now he is huffing and puffing right away. I feel your frustration, I feel your pain, deeply. I know about the rage that comes from my husband. It all hurts. God bless you. You are both truly remarkable people, who love each other. You are educating us who are going through the same type of frustrations and trying to hold onto some small piece of normalcy. You both express yourself so well and so kindly. Blessings to you and your family. ❤ I am so glad I found your channel. It makes me feel less isolated. I feel that God led me to you. For encouragement and advice.

[@carolynwright3026]

I love that you guys can still laugh and show time for us:) that encourages me😊 If people don’t understand how bleak this disease is and how debilitating it is ! That is their problem. I am sorry that you are hurt by their comments! I went home to Decatur Alabama where my parents live. My mom is near the end of her dementia journey. My dad is almost 93 and still taking care of her. She did not know me and was agitated that I was there. It was so sad mainly because I live so far from them that I likely want get to see her again. However she is 88 and has had a long life! My dad is so sweet to her that I am seeing a side of him that I would not have seen if her mind was healthy! Please don’t be discouraged by people that say ignorant and even unkind things to y’all! Just know that you have a community of people that love you and truly understand that Jason is very sick! Sending love and prayers from Oklahoma City❤

[@smiller6925]

Jason is such a manly man. I know it is causing him so much angst to no longer be able to protect, provide, take care for his family. It hurts. It's not just frustration- it's GRIEF. I love that Jason and you are on the same side- he trusts you.

[@LW0214]

Thank you for sharing and educating us. Continued prayers for you both as you navigate this awful disease. Shame on anyone, I mean anyBODY as Jason says lol, that doesn’t appreciate your laughter! This world needs more like you, Leslie.🤗

[@jo-annmaruszak9885]

I love you both and thank you for these videos. My husband is not yet there but I am expecting it to come. I already was a caretaker for my father. He passes away two months before his 96th birthday. Just in time for me to devote my time to my husband who was diagnosed with cancer. I can’t imagine anyone criticizing you … you are a kind, caring, wonderful caretaker Leslie. God bless you.

[@cinnie2543]

You guys are just the sweetest things. I want to say to both of you, as my husband's caregiver (he has slow progression ALS) that sometimes I know we just need someone to hear and believe and know that this is HARD! God bless you both.

[@Stacey_95]

Sitting here sobbing. One of my biggest frustrations as a caregiver is when people say “she seems great to me! If that’s radiation - induced cognitive decline it doesn’t seem that bad!”. The way it is said makes me angry it’s as if I’m lying for self gain. I wouldn’t wish this awful result of disease on any 25 year old nor would I ever have seen myself in this caregiver role, but here we are. RICD is just one of my daughters struggles and every person is so different. Ellie does an amazing job in public but it literally takes everything in her. She can ride her recumbent bike 20 miles and be tired and need a nap or go to a couple of Dr. Appointments and be wiped out for the next 24 hours and completely unable to make simple choices because she show times and tried to hide what’s going on. Leslie and Jason - thank you for all you do! Our stories are different but you help me feel so much less alone and I think to also be a better caregiver.

[@pamelasimmons1689]

Just wanted to pop on and say you are doing great sweet lady. This IS so hard. I love that you all laugh and have as much fun as you can but I know how difficult and tragic this is. I know it's just a given, but thank you for continuing to love your man through this family trauma. You are his strength and you are honoring him in a way most of us can't fathom. This changes people, being a caregiver. The highs and lows are maddening and I pray you are practicing many self care techniques. You are doing great and that's all I wanted to say. ❤

[@lindagustafson343]

Having a mom with dementia I see how are it is to not have the relationship you once had! You put ourself out there and I really wish people would leave bad comments to themselves! Praise God you have His strength and comfort! 🥰

[@vernayoung2467]

Oh Leslie, you are such a brave lady to put your life out for all to see the good, the bad (well maybe not the ugly), but we feel the pain you are going through. Thank you for your honesty. We love you both.

[@christygreuter3765]

I just love watching you guys. I lost my mama to Alzheimers last year. I certainly don't claim to know exactly what you deal with on a daily basis Leslie, I do know that it takes a major toll on the caregiver, mentally, emotionally and physically. You are doing am amazing job. Keeping AND living your vows...in sickness and in health. You got this girl !

[@Kim-Dalton]

This is probably your best update so far. Praying for you both.

[@barbaraearl917]

My husband had a horrible time getting motivated. It was totally gone. He would get up and eat, brush his teeth, and go lay down. It was horribly frustrating watching him go down. He would want to help set the table, but couldn't follow through. Thankfully he didn't buy things online, but I knew it was a possibility. He could also go to a doctors appointment and showtime, so the doctor never saw what I saw. That was extremely frustrating for me. He was never diagnosed with LewyBody, but I knew from doing my own research that he had it, along with Parkinsons. Keep up the good work, and thank you for sharing your story. It is helpful for me to process what was going on with him even though he has passed away.

[@tonymichaud8683]

I'm still in the early stages of LBD and I have trouble walking now. Stiff shuffling gait, balance issues etc...As you say, everybody presents differently.

[@khess3892]

Please stop worrying about the negative remarks from people. I am so grateful to have found your channel because of my sisters onset of early dementia and just not wanting to feel alone in the journey. I pray for you both and thank you for your honesty.

[@christierebe3134]

Thanks for sharing and keeping this real. I know how hard it is to watch your loved ones decline in their health. My Mom and brother in law had dementia. We were all frustrated at times and you are right people don’t see the really bad moments. 😕

[@ellenh9381]

I’m sorry people say dumb things to you, please don’t let it get to you, we learn so much from you both. ❤️👍🏻🙏🏻

[@carlabestor6159]

Thank you so very much for sharing your journey. I know that your conversations with us are so very important to individuals going through their own journey. Much love and happiness to you both and family🥰

[@b25mech]

I can’t believe people are saying that stuff. Ugh. Leslie, I don’t blame you for being frustrated.

[@tamarwardlaw8593]

I am so thankful for your channel and especially this episode!!!! As a caregiver with a spouse with early onset, I struggle with feeling I have to validate his diagnosis to others because they do not see it. I don't want to point out all the changes I see to everyone so they "understand." Please don't stop sharing; I just cannot express how much your channel helps me!!!!

[@lauraanderson7492]

Everyone progresses differently. It’s not fair to anyone compare anyone else’s journey.

[@kathyadams6230]

Thanks for the update, Leslie & Jason. We call those people who try to make us feel bad about ourselves (i.e. calling out your laughing) “candle blower outers”. Don’t let anyone blow out your candle. ❤️

[@themoralmama3883]

You know what's frustrating on my end as one that has watched your journey from the start? The fact that you feel you have to explain yourselves! You have the most wholesome, real channel. I enjoy your content consistently. As a viewer who has followed for a long while, I can see the difference in Jason. Also, as someone who works in Healthcare, don't forget that there are uneducated people (not meaning they're dumb, they just don't know..) I appreciate your journey and watching your role as a CG. Unless you have experienced the CG role for a terminal illness or witnessed it, you have NO clue the struggle. You are essentially "exiting" the spouse role and taking on a role that is new to you. To the ones reading this, making ugly comments, please be kind. "You don't know, what you don't know!"

[@daleclark8872]

So sorry that you are both having to deal with this horrible disease at such a young age. My heart breaks for you. Please know that everyone supports you - some just don’t get the severity of the disease. We are praying for you two beautiful people!! 🙏❤️🙏

[@nruegner]

The 2 of you are amazing. Sharing your life with people is a great way to educate others. It is very annoying when others talk about your life and they really know nothing. It's like saying that every 3rd grader is just like every other 3rd grader in his class. We are all different. I would never try to tell you how to run your life with or without dementia. Hang in there. Keep up a positive attitude and ignore the naysayers. HUGS!!

[@Iwoasasaned]

I Love you guys and that you open up to us even about the hurtful parts of your story. Jason’s showtime was excellent AND, to be fair, a aircraft load would be a really cool thing to play around with 😅 - if only the financial part wasn’t involved. It’s a good thing, that you can have a laugh about it (of course after the initial shock and all the work to resolve the problem and working to all the frustration). Leslie, you are a trooper ! Please take very good care of your health and soul because your life seems exhausting (not just physically but especially psychologically), balancing your both’s lifes like a rope dancer with so much grace as you do. Your love for Jason is very present in your videos, he is such a lucky guy to have you 💕

[@dottiebachtell8029]

4-11-23 4:45pm I love watching your program. And I pray for both of you! My dad, husband, son, and daughter-in-law were in the military. My son flew the A-10! Anyway, we now have a family member with Lewy Body. So several of us watch and we learn. Thank you for doing this. I pray you will be blessed in many ways! We are fans and prayer partners, so let us know if there is something we need to pray for. Love y’all, Dottie

[@FawnhillFarmhouse]

Leslie and Jason, thank you for openly sharing. You are SO loved by all of us. Sending hugs and prayers! ❤

[@Hd-yy6zh]

You are doing a great job!!! Quit reading these negative messages. God knows and we are your support!! Praying in AR!! Beautiful Godky couple showing others how to walk through a fire with faith, openness and compassion!!!😘

[@jandoherty5299]

Leslie, I love you too and you are such a kind, caring, loving wife for Jason. I know you are going through so much and you are handling it with such grace and dignity. I don’t know what Jason would do without you.

[@kathyf7862]

Thank you! I've been thru dementia with my mom and now my older brother, who is going into stage 6. Everyone is different as they progress thru the disease! So hard to understand. We just love the person where they are and try to let go of knowing the future. God's in charge and will provide for us if we let him. My brother's dementia has looked somewhat like Jason's; more executive function decline than physical. No matter what, it's a long, exhausting, and often painful journey. I, too, am thankful that I still have much joy and lots of smiles. It brings happiness to my brother. (He is now in asst living where I visit several times a week. ) You two are a true blessing to show a snapshot of your journey with dementia. Few victims of the disease can speak of their experience with others as Jason does.💕🙏🙏🙏💕

[@brendahardy2072]

I really love the two of you interacting and educating all of us with grace and humor. Thank you for being willing to put up with so much frustration on a regular basis - for us. I pray for you both that as the journey progresses you will have love support and humor surrounding you. Love your light - let it shine!

[@michelesmith9750]

I know absolutely nothing about Lewy body dementia But I have a friend whose husband had it and she was his caretaker for seven years and she said it was absolutely horrible. It really makes me annoyed when people come on here and criticize you. you’re both doing the best that you can do when you’re trying to share what you’re experiencing. Take care and ignore all the negative crap that you get! Thank you for what you’re doing by making us aware of this awful disease

[@lavettamoff7883]

God bless you both.Have a Happy Resurrection Day with your loved ones.

[@RealityandCommonSense]

People need to understand that you have no clue what goes on behind their doors. Just like we don’t know what goes on behind your doors. Stop for a second and think about it. I’ll never understand those who think they’re so special to sit and judge. Move along. Find something to watch that betters you as a human being. Thank you for sharing your personal lives. I’ve learned so much. My heart aches for you both and I wish you only the best.❤