LIVING WITH LEWY BODY DEMENTIA EP. 10 | DECLINING & HOW WE ARE HANDLING IT

[@hallymariah45]

I noticed when Jason, was asked, "What makes you happy?" It always went back to the word, "we!" We do this, we do that....In other words, YOU make him happy!!!

[@marysal8162]

‘My husband is the smartest man in the room’. Yes, we can see that because he picked you, Leslie, to be his wife. You both are my hero’s.

[@erinwoempner1228]

So beautiful

[@feliciacardone8900]

Being a speaker for Alzheimer's/ dementia and a trainer....no dementia is easy no matter what the person does. Everyone always thinks of the patient in reality the patient is fine living in their own world, the Caregiver is the one who suffers all of it. Remember, they can't live in your world, you have to go in theirs. Hard, sad, long journey. I pray for Leslie and Jason. It really is, one day at a time since their behaviors may be different every day. There's a sadness behind Leslie's beautiful laugh. Understandable. Let's always remember them in our prayers. Jesus is our hope. He does give you peace in the midst of the storm. 💞

[@lillyrose3545]

Well said. I see her sadness and being emotionally tired in her eyes. She has to basically take abuse because of the dementia (not Jason). I really feel for her, and I pray for both of them.

[@grannyjclay-joannieholdhus925]

❤️🙏🏻

[@takecontrolbeauty6402]

Felicia so true! My daughter-in-law's dad suffered from dementia it was hard when they had to put him in a home but he didn't know it really bc he was in his own little world ! I know the people around him suffered who loved him and wanted him to remember them and he did not. When my daughter-in-law would come to visit she would say dad it's me your daughter and he thought she was his mother when she was young or a nurse he didn't know her and that broke her heart. So I learned from then that the ones who are left to look into their eyes are the saddest of them all and it's very hard. That was well said Felicia🙏❤️

[@dawncarnell7029]

Oh how I agree with this!! Praying for you both!! 👍🏼for a sailboat👍🏼 haha

[@teeser2436]

Beautifully said. I was my Mother’s caregiver. The day she didn’t recognize me was one of the hardest moments.❤️

[@4estdweller4ever]

I understand how you feel, Leslie about wanting to care for Jason to the end. My husband was bedridden for 2 months bc of cancer and he would cry sometimes when I had to take care of diapers and apologize and I would say, “Stop! I love that I’m the one taking care of you because you have been the most wonderful husband to me and I’m grateful to show you this love you deserve. And besides, nobody’s going to powder your butt the way I do!”

[@robinredwine1417]

4estdweller, Even though you're an Angel for doing the diaper part and trying to help your husband feel better about it, it may be better for you both to have another Caregiver do those things ❤️

[@rburns9248]

4estdweller we do anything for the ones we love.

[@4estdweller4ever]

@@rburns9248 I know how much comfort it brought him that I protected his dignity the best I could. It drew us close together. I was fortunate to have a dear friend who was a nurse. She explained how to manage with the right methods. She taught me how to change his sheets with him in the bed. She moved in for the last few days and kept me from panicking. Another example of how real love gives everything it possibly can no matter how difficult.

[@thuff1947]

The fact that you choose to educate and help others while going through this speaks volumes about your selflessness. Praying for you both. 💗

[@carolshoesmith5751]

And the honesty is great, they are helping people so much!!! He’s very fortunate to have someone like Lesley in his life, she’s a sweetheart.And his sense of humour is great, love watching them together!!!🙏🙏

[@traciebecker6669]

I totally agree

[@lindagowanscrane191]

Amen to that. It's fascinating to see how you work through this trial. I am beyond amazed by you Leslie with your clarity and love, and by Jason's wit and willingness to share his journey through this. God bless you both!

[@TWalters65]

This is a PHENOMENAL video, so relevant to where I am right now with my Mom. I don't know what kind of dementia she suffers from and she is still in denial after undergoing the initial evaluation a year and three months ago. She refuses to se a neurologist for a correct diagnosis, meanwhile she continues to decline. It's a TREMENDOUS struggle every day. I appreciate your and Jason's transparency - it is incredibly helpful to know his perspective as the one living with the disease and also your perspective as his caregiver. Thank you! Thank you! Thank you! Thank you!

[@Americandream805]

Sending prayers your way! 🙏🙏

[@lianeabeyta4515]

wow...the end of this broke my heart! You are the incredible woman Jesus picked for Jason long before you both found out about this diagnosis. But Jesus knew.... and he trusted you, Leslie to be there for Jason. You will be in my prayers. Now as for that sailboat!!!! Jason wants the experience of being free, in control, out on the water, in the sunshine with you. Is there a way that someone with a sailboat could take you both out, teach Jason how to sail , but you could feel safe out on the water and let him cross this off his bucket list.

[@annieb4728]

You are amazing. My brother-in-law has Lewy Body and when I call my sister to talk, I make sure she can vent to me without any judgement. I just listen to her until and offer my love and support.

[@lquick6]

Leslie, these videos have helped me so much. I am in your EXACT shoes. As I describe it…. Life just isn’t as fun as it used to be. There is still joy but with a lot of heaviness added in at times. It doesn’t matter how great my support group is, I still feel unbelievably lonely at times. It’s ALL on me. My husband has recently started falling more, so that is now a concern. This is the hardest thing I’ve ever done in my life. Letting him do as much as he can and being there to catch him when things reach the point that he simply can’t do it anymore. We are still at the stage where no one knows this except my kids. Soon I will have to fill people in so they don’t think he is weird or stupid. ANYWAY, I know I’m rambling but I want you to know how brave you are and I’m right there with you. ❤️

[@gabriellagrace4734]

Big blessings to you. Stay hopeful! 🌷

[@peggyvick935]

You need to let family, friends & acquaintances know. My best friend of 60 YEARS, failed to tell my husband & myself that her husband has Dementia. We noticed significant changes in him for several years before his diagnosis. Also changes with her! Changes with their adult children. We were left to wonder what in the World was wrong with them, us. We felt unwelcome. My husband felt something was wrong, & we wanted to discuss it with them, but felt pushed out. Please include those who love & care for you. Sending prayers & hugs. God bless.

[@maryannhartzell2958]

@@gabriellagrace4734 There is no hope with LBD. My husband is now in a nursing home and the cost is unbelievable-$12,000 a month. He has been there for one year. I am constantly worried about his care and well being. This illness is a nightmare.

[@lauriemcilrath9391]

I am so happy to see that Jason has maintained his sense of humor. I know completely healthy people that have more negative, fatalistic attitudes that he does. So refreshing and endearing.

[@sallyfong9843]

So true!!

[@em......]

The ending made me cry. I know exactly how you feel. I lived with my mum for 8 years while she had it. I didn't have anyone to talk to about it and I didn't have any help. My mum was aggressive and very angry a lot of the time. I almost walked out into traffic one day because I was so sad and over it all. She died in 2020 and I miss her like crazy. She was a wonderful person before her brain started dying. And you are right, no one understands unless they have been through it. I had carer burnout in the end. I am still struggling today to get my life back on track. Good luck to you and to Jason. Hugs to all.

[@cherylmclemore66]

I’m so sorry that you lost your mom & that you had to endure such suffering. Bless you for being there for her. Now it’s your time & I’m sure she’s cheering you on.

[@dino946]

I went thru this with my Mom for 17 years. After she passed I felt relieved. Know that your Mum is in a better place, I bet she’s chatting with my Mom right now. The best advice I was given was your Mum wouldn’t want you mired down by this. Hope this helps.

[@em......]

@@cherylmclemore66 thank you. I can imagine she is cheering me on, she was my biggest cheerleader in life ❤️

[@em......]

@@dino946 17 years is so long. 😞 I am happy that my mum is no longer stuck in her body that was failing her. I am relieved that she is free of that suffering. I hope she has met your mom, that would be nice 🙂 I do try to think that she wouldn't want me to be so sad and lost. Thank you for your kind words ❤️

[@cherylmclemore66]

@@em...... aww, that’s awesome.

[@ishbelcumming8581]

Hi both, your an inspiration for people who have this condition ... my darling husband has just passed away he had parkinsons plus which started 13 years ago then 3 years ago he was diagnosed with LBD. He used to shuffle and freeze we found that humming a tune helped he could then march around humming or singing, then in 2019 he became incontinent which really distressed him but we alway dealt with problem's with humour... towards the end he could hardly speak which broke my heart. I promised him I would take care of him which I did.... even when he was falling most days ....the times I've cried! We were soulmated and I miss him so much. I'm so proud of you you'll never regret taking care of him. Thinking of you ❤ 😍

[@billg6677]

every young couple should watch you two before they get married to see what love is all about. We have hit 42 years and I still get the warm and fuzzies just watching you, it make my whole day brighter. Much live coming your way!!!

[@sft4081]

I’m 53 yrs old , I’ve had Lewy body for 2 yrs…and I relate to everything he’s going through…it seems this awful disease affects us the same… u are lucky you have a partner to help…I’m alone bc I don’t want to bother my family and it’s getting difficult…so prayers to Jason and his wife…💗🙏🏻

[@pamd4068]

I'm sorry things that you're going through it alone. You really need to reach out to family and friends and let them know what is happening. I'm sure they love you a little rally around you that's what you need. Prayers for you.

[@ndgrandma1818]

Please reach out to your family and friends! I’m sure they love you and would want to know and would want to help you! You can’t continue to go on by yourself! Also, turn to Jesus, as Leslie shared…. He loves you and will give you his strength and peace! 🙏🏻❤️

[@4estdweller4ever]

So sorry 😞 I have the same struggle not wanting to ask for help. I come from a traumatic childhood and find it hard to trust that people care about me. It feels safer not to take a chance that people might not care or be kind. The truth is you deserve love and care. Try to allow people in. My heart goes out to you.

[@teresacox2511]

Dear sweet Faith, I’m so very sorry you are going through this. And the thought that you are going through this alone just breaks my heart.💔😢 Please reach out to your family and friends. Give them a chance to help you. If they say no, pray for them and get help that you need from hospice. If you have insurance that will pay for it. Most people think that hospice is only for people who are near death. But that’s not true. If you have an illness that will end your life in the next few days or in the next few years, you are eligible for hospice care. They will send people to help you in anyway that you need. So please please reach out to your family and friends first and give them the chance to help you. But if they refuse or just physically can’t do it, then call a hospice near you. There are also home health nurses that will come in your home and help you. I pray you have good insurance to pay for these things. I know Medicare and Medicaid will pay for these services. God bless you in the Mighty Name of Jesus. You will be in my prayers. Gentle hugs 🤗 precious child of God.

[@robinredwine1417]

@@teresacox2511 I love your comment, so awesome!!❤️

[@marlenebeck1739]

This episode ‘triggered’ a lot of emotions for me. I was a caregiver a few years ago and can identify with you even though my husband’s suffering was not LBD. I too was committed to the end and it was the strength of God that carried me through so I can believe with you that you will be given what you need for the journey. I also think I see and understand the grief you’re already experiencing; a grief for the loss of what was and will no longer be. At the same time you are grateful for your dear partner. Just before you were talking about Jason being so intelligent I had noticed how articulate he still is even though it is more difficult for him to focus and carry through on a thought at times. Of course his humour continues to be delightful. Thank you, both of you, for these times when you are able to give us a peek into your journey so that we can lift you up in prayer.

[@rhondadavis1483]

Amen!

[@lornabarrett5388]

I have gone through what you have. So similar that makes me sad. My soulmate was not diagnosed so I did not know why he was being so cruel to me as I was always the love of his life. I went from “could do no wrong to could do nothing right“. Prayers to both of you. So heartbreaking. Thank you for being so brave to do this. You are helping more people than you know.

[@robinredwine1417]

Lorna Barrett,. I didn't want to bring it up but it is so concerning to me that the people with this disease can change to being angry and verbally abusive, but most concerning, physically abusive. That happened with my older Aunt and her daughter who was caring for her. She had to go to a nursing home 😔

[@chiczilla]

Leslie and Jason, my husband with LBD and I APPRECIATE these videos so very much. My husband and I are young, too, and your situation is SO similar to ours (right down to careers). Jason, thank you for being honest with us. You help my husband feel less alone in his disease. His progression is on track with yours and I am certain you don't feel comfortable doing these videos all the time. Just know when you feel "Jason Enough" to do them, we thank you. Leslie, thank you for your private message at the end. It's so hard when the medicine wanes...I keep believing for good days, and I'm thankful for now that our meds are working. We who are the wives and support for our loved ones thank you for this channel.

[@kb9847]

I've never been able to justify the cost of Hello Fresh, but I finally see a great reason to have it!! I totally see how this would help you guys both with shopping and just having the meals and products planned and ready to prepare with a recipe. I'm glad this service is available for people.

[@cgarcia3723]

My parents both have dementia and I am the only one that helps them. I totally understand! God bless you & Jason. Love your channel! ❤️

[@dstephenson6144]

God bless you, sweetheart 🙏🏻🤍🙏🏻

[@marionevans5185]

You must have a difficult time, but I hope you can get some help. There is nothing I can do but tell you that you are amazing.

[@shernandez2276]

I am truly sorry you are dealing w/ both parents memory care. As a case mngr for a company that hires Cgr’s, and as a Cgvr myself, I see how hard this is with one parent going through this let alone two at the same time. Praying for strength, courage, peace and help for you. 🙏🏼❤️

[@maryburns822]

My cousin , who is like my sister, has been affected by LBD almost 4 years…smart, pretty, loves to travel, lots of friends, now is a shadow of who she is. It isn’t “ just “ dementia. It is a horrific dementia. I appreciate your candor at the end of your video. I felt every word you said. Her memory is better than mine sometimes, but if I walk out of a room and back in she thinks I just got there and I’ve been there 3 hours or she thinks I’m my mom or another Mary. Prayers sent your way.

[@Sedgies]

I’m so proud of you both. You are absolutely right. People always asked me how I did it, taking care of my husband with DLB. My answer was always the same. It was through the grace of God! I give all the glory to Him. He is my constant. My husband is the love of my life and was also my best friend. It wasn’t easy but it was my honor to care for him. He cared for me as well. There were plenty of hard times but I wouldn’t have had it any other way. I was so thankful for the good days and the bad. I was blessed to have wonderful friends who lifted me up and would do anything for us. I had a wonderful support team in them and still do. My husband was an extremely intelligent man as well but he pulled away from friends. Proud of Jason and his friends for keeping their relationships going. Please know I’m praying for you both and your family as well. Continue to trust in Him. Thank you for sharing your journey. You are helping people so much. Sending love and blessings to you both.

[@kimacker8594]

Such a heartwarming response. Yes, you are right, we should give all glory and honor to God for He is the one who gets us through the hard times.

[@janiscalaba4932]

I lost my dear cousin 1year ago this month from Lewy Body. She didn’t last very long. Last time I saw her, she was in a coma. Although when I started singing to her she opened an eye. God bless you Jason and your lovely wife….. ✌️❤️🙏

[@sheilafurletti2022]

You are doing great. Hugs

[@dicooop]

#1 caregiver job is to take care of the care giver…then things flow beautifully . Be sure that is your focus. EXXTREME self care! Share the burdens… physically mentally emotionally and spiritually. All aspects of our being need our support especially while caregiving. Then you will be able to finish strong. You are doing a amazing job! You are in our prayers.

[@lillyrose3545]

I hope that she gets some respite care to take care of herself. I really do.

[@lobo1368]

Jason is brilliant. You said it as I wrote it. It amazes me how sharp his memory is. Listing things from memory. I'm like how does he do it? 🤣 Because I am not always so alert. I was a caregiver for my son w brain cancer for 6 years. He was 24 when he went home to be with our Lord, 14 years ago this March 12th. Love you guys. Burden of love. Hugs doll.

[@cindys5426]

I'm so sorry for the loss of your son . My daughter died at age 27.You never even get close to getting over it . It's such a comfort to know we will see them again. God bless .

[@susanloveshuskies]

Hugs. I'm so sorry for your loss.

[@maylinehan9135]

After a long struggle (due to lockdown), my husband has just been diagnosed with LBD. So much appreciation and thanks to you both for helping us with our journey which at times is stressful and emotionally charged. Your vlogs help a great deal.

[@soonernow2324]

FYI, as a caregiver myself, I was recently made aware that getting Power of Atty while they are cognitive is critical. Or you miss a very important time where you can get the ability to make certain decisions. I understand and feel your pain deeply. My husband is further along and yes you do have to have tough skin. Our faith gets us through. Amen!!!!

[@debbieparsons6076]

Your candor and open discussions about the challenges of being a caregiver are so appreciated. I feel that you and Jason are doing the viewers such a lovely service enlightening all on how to handle such a devasting diagnosis with love, kindness and dignity. Leslie, you are a very special person; so upbeat, intelligent and supportive. Along with the educational factor about Lewy Body you are also extremely talented in sharing your decorating and designing tips, as well as actually comparing products and providing excellent reviews. I look forward to continuing to be a part of your journey as a couple. I hope you know that many of us are out here wrapping our arms around the two of you with love and prayers. Jesus shines thru both of you in your videos. xoxox

[@sonjasmilbourn]

I just had to pause this wonderful clip, because I feel so much love and gratitude for the two of you as you share your story. Thank you. You are am absolutely beautiful couple and your authenticity, desire to educate, your empathy, are simply amazing.

[@marycampbell8892]

Leslie, your last segment with you alone hit my heart. My husband has dementia and living in the country it got harder and harder to leave him alone. He was like Jason. He made quilts, could draw and paint, built things, moved mountains. He would say he you "you can do anything you want to do, if you only try. His favorite thing was skydiving. It got to the point the anger and hatefulness was so hard, and no help I had to place him in a home. He has never accepted the dementia diagnosis. Now he will do nothing. Sleeps all day. He wants to come home, but I can't take care of him. We are much older than you and Jason. We are in our 70s. He does love the Lord, and that is a blessing. If it wasn't for Jesus, there would be no hope. Love you and know your hurt. Love Jason too. Will be praying for you. We will be with Jesus some day and oh what a blessing that will be. ❤ 💙 💜 💖

[@deko2485]

Mary, Will keep you both in prayer.

[@lynnsalberg5647]

Praying for you and your husband . You are doing the right thing keeping your husband safe.

[@mariemelendez917]

We had to medicate my mother to keep her home. We called hospice for help the last few months before she died.

[@rhondadavis1483]

Mary I’m sure you do realize this, but you’ve done the right thing by placing him. I was an Alzheimer’s nurse for many years and I saw the fatigue, pain and sheer terror that comes with keeping someone with dementia at home...esp safety issues for yourself, and also for your husband. I hope Leslie does have ppl that are willing to come stay while she is doing her errands or taking care of herself...it sounds like she does and I’m happy for her. We had to deal with my MIL’s dementia and the family eventually had to put her in a home bc she became so irrational. The key to peace for the CG, and good care for the pt are for the family to visit the facility OFTEN...daily if possible...even if for only a few min. The staff tend to stay on top of a Pt’s care that have heavy family involvement. My dad got very hostile and angry at my mom when she was his CG. The Dr put him in a hospice center for a few days, adjusted his meds and gave him a lecture about his behavior. Dad always had anger issues, so it really wasn’t dementia...but he blamed my mom for her “controlling” him. She wasn’t, but that unfortunately is how lots of esp men or very independent personality types react as they need more CG help. I’m so glad you have Jesus in your life. I honestly don’t know how anyone deals with this crazy world without Him. God bless you Mary and your husband.

[@marycampbell8892]

@@rhondadavis1483 Thanks Rhonda for the kind words. I have doubts all the time. But like today, I take him his favorite biscuits and gravy from McDonalds, valentine cookies which he liked so much. So I call him tonight and we were talking so nicely then he starts in on coming home and of course I try and change the subject. Before it all ended he was calling me stupid so I had to say goodbye for the night. So hard. I watch many videos on people who are posting on You Tube and their loved ones with dementia and it helps and also hurts to see so many people, both the CG and the person that has it and getting through each day. Grace and the Love of Christ. The only way we can survive until we see Him.

[@Kimbyrleigha]

Thanks for the update. I found your channel a few months ago and watched every video about Jason and his journey. Loved your love story video. You two are so beautiful.

[@cherylmclemore66]

You guys are the most beautiful people ever! I’m an RN (retired) & I admire your strength & your desire to share this journey. My heart aches for you both. Your love & compassion for each other is such a gift. We never truly understand why we are given these burdens. Perhaps it’s so we can realize how much we love someone & want to care for them unconditionally. I’m crying because it hurts me that you’re such fantastic people & that you have to go through this. Sending you love & light. 💖

[@donnahawley126]

Bless you for helping so many of us. Little did I know when I started watching your journey that I would become a caregiver so soon. My husband has lung Cancer and unfortunately he caught Bacteria Pneumonia from the hospital while taking treatment. It has caused a very rapid decline in his health. I pray for you and your family, watching you helps me to try to keep a smile on my face.

[@kcotjo]

Leslie please know I will pray for you and Jason. I cared for my mother for 2 years before we had to place her in a nursing home; she agreed it was time. She passed 6 years ago. I always felt guilty when I "vented" or "complained" but as you stated, one has to get out the frustration and sadness that is part of being a caregiver. You will never regret all that you are doing for Jason. Our marriage vows do state for better or worse, in sickness and in health. You are at a time in your life where becoming grandparents, being empty nesters should be a wonderful time. Yet you are faced with having to basically take care of a child-like husband. Thus not being able to enjoy fully this time of your life. Your being vulnerable and allowing others to see all that you go through is being honest and real about your situation. You are so brave and courageous in sharing your ups and downs. You are no doubt bringing awareness of the difficulty in being a caregiver. Jason is a wonderful man who did not choose this illness. I love how you are relying on Jesus and your faith. God is trusting you to care for Jason. He knows you can do all that you need to do to help Jason during this time. Again, please know I am praying for you both!!

[@lisas2538]

Hugs. Don’t feel guilty about the venting and complaining. I’ve taken care of elderly parents for years and I’ve done it too. Sometimes it’s just overwhelming and you need to do it. We sacrifice a lot to care for others. I wish you well.

[@lorraineculp1504]

Thank you both for sharing your journey through LBD. You have been called to a ministry no one would want, sharing your journey through this horrendous disease, providing education and support for others in the same battle. You have the opportunity to share our Lord with people who might otherwise never be reached. You both embody the peace that passes all understanding. I pray that you will allow others to minister to you, allowing them to be a blessing as well. I pray for God's love and shelter to surround you both on the good days and the bad. ❤🙏

[@kathyclarke5899]

You doing these sit downs is awesome. You're providing a sort of outreach and information for others. Your attitude toward each other and toward this disease is remarkable. Know that I'm praying for you guys. Hang in there. God's got you. Philippians 4:11.

[@kimacker8594]

Love your reply!

[@DeniseNJ]

I feel for you. I was my Mom's caregiver for 5 years, she had Lewy Body Dementia, I call that period a nightmare, so difficult seeing a loved one go through this. Just an FYI, you might want to get a GPS monitor the patient wears at some point, for my area it's run by the County Police and it's to be able to track patients who walk out of the house. My Mom walked out and we found her 2 hours later, thank God, and the Police called the next day to set up an appt. to have her monitored, and it really brought some peace of mind, along with installing extra locks on the doors and hiding the key so she couldn't find it.

[@Kathleensailorgirl]

Leslie I was in the same situation with my husband, I was exhausted and stressed but I was blessed to have a handful of friends to help me . I am a retired oncology nurse and thankfully was ICU trained. My husband had a trache, feeding tube, colostomy and Parkinson’s dementia. My prayers are with you unfortunately there were times that my husband insisted that I was an imposter. If not for my faith I never would have made it.A burdensome day was easy because of my deep love for the man that my husband was. Continue to ask for help and my prayers are with you both 🙏🙏🙏💕💕💕

[@myrnaedmisten599]

How wonderful. And yes, “everyone IS a whole person”, as Jason says. Thank you for being so beautifully real…. ❤️

[@lisas2538]

Aw Leslie, you’re the nicest sweetest person. My heart goes out to you. You’re doing such a good job. You’re in my prayers.

[@bettywatkins3842]

I am at a loss for words! I can’t express how much I admire you! You are so kind, patient, sweet, considerate, (not to mention beautiful), that I would wish every care giver would have half of those traits. Jason is in very capable hands, no one should worry about him, I’m more concerned about YOU. Caregivers are priceless but it comes with a toll. I’m so glad you have Jesus but make sure you have physical people around you also. You have it together I don’t need to go there but please know you are phenomenal! There’s a special place for people like you (and unfortunately it won’t be crowded) in heaven because Jesus is so proud of you. Please keep up with the videos, there are people out here that are concerned and care about Jason. We are all learning something from your experience. God bless.

[@dabailey1000]

The fact that the two of you can be so honest with each other and share with us is amazing. Thank you for sharing and thanks for all the humor. ❤️

[@elainewilliams7184]

Bless your heart! Dealing with my mom with Alzheimer’s was difficult. I can’t imagine what it is for you but your videos give us a glimpse into your pain. Please gather your tribe. You need others to help you and give you time to be normal. Yes you are a nurse and have the skills but even nurses don’t work 24/7. Take care of you. There are others that can help you do that. Take advantage of resources to help with that. You are a real trooper!!!

[@mommamc5771]

Leslie, I cried right along with you at the end of this video. You are such a beautiful light. I will keep you and your family in my prayers 🙏🏼💞

[@cheriejones854]

Love that you do these videos for people going through this. I can imagine how hard being a caregiver can be. Please take care Of yourself. Praying for you and Jason.

[@virginiasargent9876]

My 71 year old sister has LBD. I had her come and live with me. It didn't work out. Very sad. She's in the Nursing Home now. Safe.

[@catherinestrong4470]

Jason you are a true hero, I'm sorry that this is happen to you, but happy to see you happy and moving forward. Leslie thank you for being a loving and strong wife, to give support and understanding Jason and his disease . By the way being an Italian and have spent one month at a time in Italy I can tell you that the rail way is very ifficiant to tray by, I enjoyed that and travel from Milan Venice, Florence, Rome, sicily and back up I had a great experience

[@daynagriffin7517]

I had cancer….that’s when I realized that being a caregiver is the hardest job of the situation there is! Praise the caregiver’s!! My husband never gave it a second thought…..he saved my life!! You are doing the hardest job there is ! ❤️

[@KarMaty68]

I just want to give you a hug. Prayers for Jason and for you.

[@bdlimea7018]

I'm a new subscriber and boy, at the end when you said, unless you are a caregiver you just don't know exactly what we go through, and that sure hit home with me. I moved in with my Mom to care for her when she wasn't able to live alone any longer. Shes not been diagnosed with dementia, but she has mental illness that almost mimics it. She's always confused and you have to repeat yourself over and over. She's also 76 so that's another reason. Its so much different to not live with the person than it is to be with the person 24hrs a day. No one knows what you go through unless they were there all the time like we are. The thing I always hear from my friends are things like, you should feel blessed you still have your Mom, at least your Mom doesn't have to be in a nursing home, things like that. Of course I'm blessed to have my Mom but that doesn't mean my job is any easier! I love my Mother but when you are the person who provides around the clock care with no breaks it's hard. I have 3 brothers that don't help much. My kids are busy with their families, my Moms sister lives 6 hrs away, so I don't get alot of help. It's hard sometimes. I've put my life on pause for now to care for her. Sometimes it feels like I'm so unappreciated but then Mom will look at me and tell me she doesn't know what she would do without me and that she loves me, and it makes it worth it! I'll take care of her until the end. Just like you feel, I don't want anyone else doing it when I can! You are such a lovely person and you are both lucky to have each other! Thank you for sharing your life with the world!

[@DaisyandJesus116]

My father passed away from the same form of dementia 11 years ago. Thankfully, he recognized his family until the end. My mom and I took care of him at the end of his life. Life goes on and Jason has an awesome attitude!

[@ACharmingAbode]

I love when people tell me this. Gives me hope! I also believe Jason will know me until the end 🥰💙 Thank you for sharing!

[@donnaheurung1844]

Even thou your going through illness together. You are so blessed to have each other. My husband has this disease and doesn't accept his illness. It is so hard. Thank you Jason for sharing.

[@donnaheurung1844]

Leslie thank you for sharing I'm a caretaker and suffer from caretaker burn out at times. It's hard. God gets me through. Unfortunately I'm at the time to find memory care for my husband. I'm not able to do it anymore. Sending prayers and love.

[@Mumdownsouth]

God bless you, it's not easy, I have done the caregiver....it's ok to do what you need to cope. Hugs!

[@hollyh5032]

Leslie, you have no idea how much I admire you and how much you inspire me!! I'm praying for you and Jason every day!!

[@susanhall3438]

Leslie, you are so strong. I can only imagine what you are both going through. Jason has a great sense of humour. I wish you love ❤, strength and above all humour in this stressful and anxious time. Love and my very best wishes to you both, from me, Susan in the UK 🇬🇧 ❤ xxxx

[@soccermom1245]

What a testimony! I am so glad I happened by your channel today. I have thought about what would happen if I had to be my husband's caregiver. You have given me hope and a better outlook. Thank you so much!

[@jandahlgren8211]

My husband has LBD and it’s so great that you are sharing your story here. Wish we were neighbors so we could visit. It’s so good to know we are not alone in this journey.

[@christinaamezquita84]

You’re in my prayers to give you strength to be there for Jason. God bless you both.

[@tammymango3028]

You’re wonderful to share your feelings and help everyone with your journey. My husband has Dementia, not LB, but at 75 & 77 years I still do it all & the fear is paralyzing for me. I feel comfort & strength knowing I don’t need to be alone. ❤️🙏🙏🙏

[@janejones1797]

The two of you are truly special! I’m so sorry you’re going through this, but I thank you for sharing your story and helping others to understand. God bless you both!

[@teresavratil8028]

Thank you SO MUCH for sharing. I too am an exhausted caregiver, and my husband is not in the worst part yet. I love your honesty and vulnerability. ❤️❤️❤️

[@deborahvolz3591]

I just had a chance to watch this one, Leslie. I’m so afraid my husband has Lewy body dementia. He has so many behaviors as you describe with Jason. I can’t even begin to tell you my story, but I’m like you, what would I do without Jesus. Right now I need to turn to him more. Whenever I try to talk to my husband he just sends it back to me. He says it’s me w/dementia. He won’t see a doctor. We are both 73….I’ve tolerated his behavior for so long and yes, it’s gotten worse. I thank you for shedding light. I love your videos, decorating style…and Jason. God be with us all❤️

[@lyndsaycochran6784]

Leslie, I see how freaking hard this is for you. And in case you’re ever in need of a permission slip: you are allowed to feel ALL OF IT. You are incredibly brave (and helping others) by sharing all sides-the joy, blessings, and gratitude AND the heartbreak, anxiety, and exhaustion. I am grateful to know you and witness such strength. You are in my prayers ❤️

[@cynthiaakacyndsmith6539]

My love and prayers, for you two. I know for me just the fact, that the love of your life is so different and not where you pictured things for your self.

[@frankmandy1981]

This is what love looks like. When you said to Jason "I got you", so beautiful. Amen to "where would we be without Jesus"? On a side note, you have inspired me to try HelloFresh!!

[@stillwaters7730]

This is what love looks like. Your words are the perfect description

[@EM-vs7wx]

Leslie, you’re awesome!!! I don’t know you personally but I admire and love you! Thank you for the love and kindness you give to all of us in your videos! God bless you and Jason in every way! Thank you for giving God the glory🙏🏻🙏🏻

[@amyrosenberg6004]

My heart goes out to you. This was difficult to watch knowing how much it was taking out of Jason and how emotional it must be for you both. Sending love and prayers 🙏🏻💕

[@mariedolan1205]

Bless u both! Makes u realise how important health is over wealth! Your pain is so real and Jason being aware of what’s happening must b soul destroying! 🤗 🤗

[@kimlux8766]

I have so much I’d like to say but I can’t see through my tears so I’ll have to make this short. 😂. God Bless you both! I have full confidence that you sharing your journey, each of you, is a tremendous help to others. It’s a blessing to me just to be able witness a marriage that stands the test of time and demonstrates the vows you made to God and to each other.

[@karenschlicher8499]

My hardest part was when my partner didn’t know us anymore. Finally had to put him in a nursing home because he would fall and I couldn’t get him up and one day he super glued my follies to the end tables. I came home from work one day and he had everything with a battery on table saying they were all dead. He had lewey body also

[@momjd9985]

You can see the love he has for Leslie in his eyes when he looks at her.

[@sweetbabyasia]

I follow Kelsie on IG and KZbin, so I'm glad that I was able to find you through her. My uncle passed away from LBD and I really wish my aunt would have had more resources like yours while she was going through all this with him. He was a lot older but for many years they had no idea what was wrong. All the symptoms you mentioned now scream LBD in my uncle, but for the longest time they had no idea. There really is limited information out there on it. Thank you so much for sharing your story and your raw, unapologetic feelings about all of this. Sending you lots of love and light and I look forward to your next video. Xoxo

[@DBAMA-wm9jw]

You are an amazing lady..You brought tears to my eyes.Take care of yourself. Praying for you and Jason.

[@Candice-1989]

Prayers for you. I'm a recently widowed Baptist Pastors wife from Georgia. And a horrible autoimmune disease took the love of my life. He went misdiagnosed for over 9 weeks. To end up at our local hospital for 4 days and we were told what they thought was wrong. So he was rushed to UAB where we were told it was wegners autoimmune disease and after 28 days God called the Pastor home. Without my Lord and Saviour I don't know how I would have made it this far. I miss and love him more each passing day. Prayers and love sweet lady . Let your light keep shining. May God bless 🙏

[@sarahm1236]

What an absolutely beautiful couple. You show love & devotion for one another, in every way. What a blessing that Jason’s high intellect helps him compensate, in some of these frustrating areas & obstacles that the disease creates. And that high intelligence explains his wonderful sense of humor, too!😁 Thankful your marriage has the foundation of Christ Jesus. It is very evident.❤️✝️ And I hope the knowledge that SO many are keeping you in prayer, is true comfort & strength as you continue this journey together.🙏🏻 Thank you for sharing your story.💞

[@kathyf7862]

What a blessing to again listen to you share your journey. The open relationship you share makes so much difference in the day-to-day decline, but we know not everyone is able to have this. My older brother at a young 80 with 8+ years of dementia/ Alzheimers still engages well with me with family pictures, etc. and his quick wit allows for great connection between us. I, too, attribute his slower progress to his amazing intelligence. You will never be sorry for this time you have together. God is teaching so many through you both. If you don't already, you both should have a plan each week for something you look forward to doing by yourself or with a friend. Sometimes, we forget that the Lord has a plan for each of us! You are both awesome! Thank you🙏💕

[@TwinsationalRS]

Hey Leslie and Jason! So glad that your meds are working well for you. You both are so sweet together. Leslie you’re always laughing and Jason just love your sense of humor🥰

[@ACharmingAbode]

Thank you so much Rhonda and Shonda! 💗

[@brendapeterson4637]

Your doing great Leslie !! I fully understand what your going through. My husband had Glioblastoma and passed away after a 15 month battle in 2018. As the cancer spread it affected everything, walking, more seizures, sleep, swallowing, you name it. I was his caregiver. Glad you are able to get time away because it's really important to take care of yourself. This is hard but you'll be so proud of yourself for being there for your husband in his time of need. I was that loving wife and would do it all over again regardless of how hard it was.😊😊😊😊

[@debraadamo8396]

I really appreciate Jason and you sharing his experience. My husband is farther along with dementia with Lewy Bodies. God bless you both and thank you.

[@0322LINDA]

Oh Dear lady- you are an amazing inspiration to everyone!!!! I can’t fathom the pain and stress you live with, and do it with so much grace!!! Being a caregiver is tough and taking time for self-care is really tough. God bless you both on this journey! 🙏

[@MyAccount-do4mv]

My friend’s husband was recently diagnosed. I really appreciate you!! MayOur Lord keep you strong!

[@thereserichards5011]

My younger brother is 7 yrs into this journey. Our family is all remote. Your video allows me to connect, understand more and appreciate the emotional and physical impacts. Thank you for sharing. Blessings

[@shirleyvanwieren]

Continuing to pray for you Leslie. Those last few minutes of the video describe my life exactly, including the Bible study and an amazing group of women praying me through this journey. I understand. You are doing the best you can every single day and then you start over in the morning and do the best you can that day too. It’s all we can do. Easy to say but incredibly hard to do. Hugs and love.

[@judithdavies6200]

I admire both of you so much, thank you for raising awareness about this disease, and sharing so honestly with the world.

[@terrymoore3978]

Thank you so much for sharing your heart. My husband was diagnosed with Parkinson's 4 years ago, and we are blessed with a slow progression. However, the dynamics in our marriage have changed so much. I have always looked to him for so many things and now I realize I have to step up. I do that with medication, doctor appointments, etc. It is difficult to handle more personal changes, because of his memory, and me not wanting to insult him. I, too, have Jesus. I can do this! Praying for you!

[@sdeaglefeather]

Love love love you guys. I am also an RN and CNM. So, my life was always about women and babies and mostly young families. After I retired I did medical transcription for about 6 mos. I transcribed for a neurologist and a neurosurgeon. I never knew anything about LBD so learned a lot transcribing for the neurologist. What you are going through is very difficult. We only see a snippet of your day and I am thankful that you are sharing your journey with us. The love the two of you have is magic. Jason’s personality and intelligence show through. The nurturing nurse in you is shining. Leslie, you are so blessed to have a strong faith and wonderful circle of friends and family. Blessings to you both. I only found you about a month ago and look forward to following you through this journey. Forget the negative people. I understand that Utube creators have awful trolls, block them and keep doing what you are doing. You have strong and caring followers. Not only did I not know about LBD, I had no idea the number of people affected by this disease. I also appreciate your followers sharing their stories. See you in the next video. ❤️‍🩹💞💝

[@sharismith6742]

I am a previous care giver. I want you to know this is helped me understand the disease and deal with the guilt that went along with what I couldn't help her with!

[@cathhorlin9536]

You! are AMAZING! & Jason is the funniest guy. Stay strong, dementia along with Cancer sucks big time. Love from 🇦🇺 Australia 😘😘

[@tanaconnelly6960]

When we marry we promise in sickness and health. I dont think when we are young saying those vows how much they mean, the depth. As we grow and age the reality sets in. I know it must be very hard (I am a c.n.a) but it is beautiful to see you take those words you spoke so long ago on your wedding day so serious. Alot of people would not, they wouldn't be able to do it. God knew this was to happen. I believe that is why he had you fall in love. I believe that is why he had you choose to be a nurse. It was all in his plan. Sometimes or alot that must be very hard to comprehend. For those of us on the outside watching your channel for quite awhile, it is beautiful to see your marriage. It is a testament to love and enduring through sickness and health. Thankyou for sharing. And thankyou for showing us all what true love is. You are very special.

[@kimacker8594]

Very well said!

[@alifeblessed2218]

What a beautiful comment! Thank you for sharing. God bless you today.

[@marytheresa1297]

My Mum suffered with LBD, we were 200 miles from her and always in contact day or night, 4 hours almost Daily on the phone are what I miss most, we lost mum 2 years ago, there are no calls now, but I made sure to have her voice recorded,.. she had visual hallucinations' mostly.... The thing I can recommend for you is...Don't ever forget about you , This is cruel disease, Jason is doing very well on camera, you can do this, good or bad days can and will happen, i won't say " Please don't cry", you will ,you are living this disease too 💓.

[@helensmith3917]

Care giving is one of the hardest things I ever had to do, even though my mother did not suffer from dementia, it was still hard giving her the support she needed while still making sure she felt she had some sort of independence. Right now, I am helping my husband who is also an Air Force Veteran deal with amnesia, he too gets frustrated with memory and confusion, so I have nothing but admiration for you Leslie and how you are coping.

[@karenlovett9301]

I love your honesty and willingness to share your experience. I have not had the support with my mother (who is in the end stage of dementia) simply because of my own lack of realizing the resources that were available to me. My family and I moved her in with us for 3 years and I feel that we did the very best we could by her. I ended up placing her in a home after she didn't know any of us because of her strength and ability to climb up on her bed and try to jump to the ceiling (she's 89). I wish I would have known about your channel back then, but you were not on KZbin then. You've brought out so many things that can and will help others. You're a true blessing. Because my husband and I have both mothers with dementia, I am going to have our daughters follow your journey, too. Thank you, Leslie and Jason. We continue to pray for your family.

[@debbiesanderson9466]

I was a caregiver for my partner as he went through his deteriorating condition of MS. He died just before Covid hit and towards the end his behaviour towards me changed so much. I just tried to adapt as best I could as his physical and mental health changed. I have so much respect for you and I’m sending hugs from the uk 🇬🇧 xx

[@michelleraupert8832]

I understand hug my young son has it.

[@kathywhite1921]

Leslie and Jason what a selfless idea to journal your Levy Body journey together. This helps more people than you realize. My father in law had this same terrible disease and it was over 10 years ago. There wasn’t a lot of information about Lewy Body dementia then and we had no idea how to really deal with it! It was the hardest time in our lives. The information that you are sharing is such a valuable resource to others!! Thank you for sharing your lives and experience of this terrible disease with us!! Jason you are an incredible man and God is using you for an incredible purpose. Leslie you are an Angel here on earth!! You are such an encouragement to caregivers everywhere!! Your sweet spirit is evident in how you love Jason in spite of your circumstances. My prayers will be with you both as you travel down this road together!! God bless you and may he show you grace and love in abundance!!

[@jodierhea2658]

"....live every day for what it can be, and enjoy the life I've got....." Such wise words for all of us. Love to you both!

[@dg6144]

Oh, Leslie and Jason, thank you from the bottom of my heart for your open and honest discussion of your journey. You are both in my prayers. Jesus is our Source.

[@robbikarboski2933]

I had a hard time with being sad for what used to be..Just walking behind my love,how he changed made me so sad.I know exactly where you come from.Thank you for sharing with us.My man started to disappear and one day fell and broke his bone in his thigh,things got worse,progressively! I love and miss him so much.He became real child-like towards our end time together,I did not mind.We have to do something about these illnesses. We have the ability,I don't think we are allowed the knowledge for some reason.???

[@janetmyers3729]

You scenario is just what happened to my sister’s husband. He broke his hip in a fall about 8 months. Into his illness. Surgeons didn’t do a full fix because he wasn’t a great candidate for PT rehab. Because he was such a tall man and needed more help than could be provided at home, he went to a care facility. All of this, combined with his progressively terrifying hallucinations, made the next 14 months so sad and hard. My sister was with him everyday even with pandemic restrictions and put her own health on the back burner. She’s still anxious and depressed and full of regrets- it’s only been four months. She’s very lonely and concerned about finances as well. I wish you the very best.

[@janealthurston3200]

Leslie! That was beautiful! Thank you for sharing your feelings with us. I know what caregiving is and what it can do to a person. 15 years my brother/best friend was in a semi-comatose state. It’s so so hard. I’m so glad you have Jesus to turn to. I know exactly what you mean that we rely on Him for his mercy, power and love to get us through those hard hard times. I will certainly remember you both in our prayers. I wish so much we knew each other well enough that you could feel confident to talk to me when you need a shoulder to cry on, because I totally understand. Make sure you watch out for compassion fatigue. I’m sure you know what that is, but it is tough getting over it, and effects all areas of your life. Hang in there❣️

[@jnerlee962]

I love how brave both of you are. My husband, since on his mood drug has been much easier to deal with for his Alzheimer. He is in a moderate stage. Can still take care of himself as to shower, use the toilet, and do small task. He no longer drives and that ruffles his feathers big time. Jason is amazing. You are amazing. I relate to what goes on behind closed doors. We are retired and thank God we did this sooner than later since my husband can't travel any long distance. I prayer to God often and without the Faith I couldn't do this. May God Bless you both . May you find the strength for it is so hard. I cared for my Mom 7 yrs as her Dementia progressed. We can do this my friend. Caregivers are so united together. Thank you so very much for the updates. Please give Jason a big hug 🫂 ❤💯🙏

[@LASPatriot]

God Bless you Leslie and Jason. I can relate to how difficult this is for you. My mother had dementia and I saw her become a completely different person. Everyday was a challenge, not knowing what to expect. I drew comfort in prayer and also remembering all the good times we had, who she was. Sometimes it was so overwhelming I wondered how I would get through it all. God gave me enough strength to make it through and God will give you the strength as well. He will take care of you while you take care of Jason. You are both very special people!

[@ptxaholic]

Jason, thank you for answering questions even though you most likely don't want to. You are both appreciated 💟 Leslie, you are amazing. It's damn hard to be where you're at, and you're dealing with it with such grace.

[@ktcadbury9395]

Agreed. A very courageous thing for him to do.

[@Clutching.My.Pearls]

Absolutely, especially so we can all understand, that's generousity.

[@carriewaters4458]

God bless you both. I lost my mum to dementia in Sept 2021 and gosh I miss her dearly. Wishing you all the very best in your journey.

[@ajcrum3689]

Jason should get a sailboat 🤣🤣🤣🤣 i love how you guys are telling us both sides of this illness . thank you for being honest with us . i know it’s not easy and know things only progress til the unknown i know it’s so hard . take each day and enjoy each moment you are given .