LIVING WITH LEWY BODY DEMENTIA | EP.17 FRUSTRATIONS ARE HIGH AS WE PROGRESS
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- Опубликовано: 7 апр 2023
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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.
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.
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.
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.
I don't think calling it a "horrible chapter" in their lives is helpful.
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!
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!
Amen!
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!!!🐣🐇 ❤️
I so agree!!🤔😥
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!
I think it IS necessary when she says she is trying to educate her viewing audience about the realities of his disease.
@@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.
@@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”.
Amen
@@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.
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.
Laughter rhe best medicine.
Love and prayers and He is risen indeed! Happy Easter
So well said…He IS risen indeed!❤️
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
🙏🙏🙏
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.
A long goodbye is a very good term for it. So hard.
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 🙏
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.
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.
May God bless you as you navigate this
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. ❣️
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!
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.
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.
What she said ☝️❤
I’m so sorry…do people really say those things? How incredibly stupid they are!
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.... 💕
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!
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.
💞 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. 💞🙏🏻
@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!
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!
Penelope can you explain about the hydrocephalus? Is it common for someone with hydrocephalus to get dementia?
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!!
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.
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!
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.
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 ❤
I'm so sorry for your friend. Prayers for you both and other friends and family ❤
@@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.
@@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.
“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. 💕💕
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.
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
Agree
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.
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.
You are both so awesome! The grace in which you handle this season of your lives is truly inspiring
So eloquently spoken. Thank you.
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 🙏🏻
Jason is still our daily prayers. Thank you for your service🇺🇲🇺🇲.
I have never, ever left a comment on RUclips 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.
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.
Wow! That brings tears to my eyes. What a wonderful son. I hope he still finds your smile great.
How wrong to shame people who smile and try to be happy.
I love you guys, GOD bless you.
My husband had lewi body dementia. No one is the same
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! 😊
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
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
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.
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!
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 .❤️💕❤️
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
An aircraft loader...The shock for you Leslie! You couldn't make that up! You obviously dealt with it so well.
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
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 🙏🙏🙏
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.💖
I wish I'd said that! 👍
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.
Thanks for being real - I am struggling with depression and getting older which are limiting my activities as well. Leslie, your laugh is helpful.
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!
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. 😊
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 🌷❤️🎉🙏
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. ❤
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.
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.
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!
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🥰
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❤
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
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
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.🤗
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
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.
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.
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!
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.
I can’t believe people are saying that stuff. Ugh. Leslie, I don’t blame you for being frustrated.
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.
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. ❤
Love your “light”
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!
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.
@@Cinloushe Thank you, Cindy! ♥
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.
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
Bless your hearts !! Happy Easter ✝️
Love you guys!
This is probably your best update so far. Praying for you both.
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!!!!
I appreciate you both so much! Our journey has its rough moments too!
Great video, Leslie. Thanks Jason. was enlightening for me.
Bless! I am so thankful you still have your short times! Thank you for keeping it real! Praying for y’all.
Oh no!!!! He bought an aircraft loader 😱
Hugs to you both!! Thank you for sharing your lives so realistically!
Bless you and yours❤
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!” 🌟💡
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.
Love your team approach!
I'm so thankful for your honesty. It helps so much!!!
You are an awsome caretaker and wife!
Love you guys and your attitudes! "Don't ever let anyone put your light out!" Awesome advice!
Love all your videos!
Love that entrance!
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. 😕
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.
Thank you so much for sharing your journey!!
Thanks for sharing! Happy Easter!
Thank you BOTH for letting us in on your journey and educating us during this difficult time in your lives. My heart aches for all you're going through.
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!! 🙏❤️🙏
Just sending love and a huge thank you for sharing all you do. It matters, it does help other people, and I needed to hear that little 'don't let anyone put your light out'! Thank you!
Amazing as always! Love you guys 💖
Love viewing your channel. It is very informative and y’all make my day!
You both are in my daily prayers! 🙏❤️🙏
Blessings on your journey!
It’s always nice to see the both of you! Take care ❤️
Thank you for continuing sharing y’all’s journey. I will continue to lift you up in prayer.
Leslie and Jason, thank you for openly sharing. You are SO loved by all of us. Sending hugs and prayers! ❤
God Bless you both! Happy Easter!
Jason is so self aware. Admiration to you both.
I’m so sorry for you guys that things are getting tougher for you both! Your always in my thoughts and prayers and I’m always praying for that miracle! Thank you for sharing your lives with us ❤
So nice of you to post an update. It will be interesting to get the results & things have advanced in this area I don't think they had or did that test years ago. It has to be hard on Jason to realize that he can no longer do the things he once did. Also hard on you to be his caregiver & wife. Don't ever stop laughing. Wishing you both a relaxing & Happy Easter.
Blessings to you and your family!
I’m sending positive energy to you both. Thank you for sharing.
Leslie& Jason: Our journey is so much different than yours. My husband has never cooked or used a bank card. So I do not have those issues but he was the one to do all the yardwork and heavy lifting. He now cannot run the tractor, drive the car or even figure out how to take the garbage out. I understand your frustrations. I understand how the caretaker gets the blame for everything. My husband also show times when his family or others are around but he just this week unintentionally allowed our sister-in-law see his confusion. When they went home they immediately offered to help in anyway. I don't think they really got how bad it was till that moment. I know I face hundreds if not thousands of moments of confusion or upset a day but it is really hard to convey to others just how difficult it really is. I love that you guys have shared this with us because I honestly felt like I was failing at helping him but when I heard you voice your frustrations I realized that this is all part of the illness. Thank-you and God Bless you both!
❤🤗 Until you live that path that journey, others do not undrstand. Sending support & love to you both.
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!
Thank you Leslie and Jason for sharing your journey. ❤
Bless the two of you.