LIVING WITH LEWY BODY DEMENTIA EP. 10 | DECLINING & HOW WE ARE HANDLING IT
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- Опубліковано 11 лют 2022
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FOLLOW ALONG ON JASON'S JOURNEY: • LIVING WITH DEMENTIA
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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!!!
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. 💞
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.
❤️🙏🏻
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🙏❤️
Oh how I agree with this!! Praying for you both!! 👍🏼for a sailboat👍🏼 haha
Beautifully said. I was my Mother’s caregiver. The day she didn’t recognize me was one of the hardest moments.❤️
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!”
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 ❤️
4estdweller we do anything for the ones we love.
@@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.
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…💗🙏🏻
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.
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! 🙏🏻❤️
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.
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.
@@teresacox2511 I love your comment, so awesome!!❤️
‘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.
So beautiful
The fact that you choose to educate and help others while going through this speaks volumes about your selflessness. Praying for you both. 💗
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!!!🙏🙏
I totally agree
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!
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.
So true!!
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!
Sending prayers your way! 🙏🙏
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.
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.
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.
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 😔
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 ❤ 😍
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. ❤ 💙 💜 💖
Mary, Will keep you both in prayer.
Praying for you and your husband . You are doing the right thing keeping your husband safe.
We had to medicate my mother to keep her home. We called hospice for help the last few months before she died.
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.
@@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.
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!!!
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.
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….. ✌️❤️🙏
You are doing great. Hugs
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. ❤️
Big blessings to you. Stay hopeful! 🌷
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.
@@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.
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.
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.
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.
@@cherylmclemore66 thank you. I can imagine she is cheering me on, she was my biggest cheerleader in life ❤️
@@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 ❤️
@@em...... aww, that’s awesome.
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.
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!!!!
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.
Amen!
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 🙏🙏🙏💕💕💕
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.
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 .
Hugs. I'm so sorry for your loss.
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.
You can see the love he has for Leslie in his eyes when he looks at her.
#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.
I hope that she gets some respite care to take care of herself. I really do.
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.
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.
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 .
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.
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.
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. ❤🙏
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 ! ❤️
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!!
This is what love looks like. Your words are the perfect description
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
How wonderful. And yes, “everyone IS a whole person”, as Jason says. Thank you for being so beautifully real…. ❤️
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.
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.
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!!
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.
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.
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.
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. 💖
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
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 💓.
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.😊😊😊😊
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.
My parents both have dementia and I am the only one that helps them. I totally understand!
God bless you & Jason.
Love your channel! ❤️
God bless you, sweetheart 🙏🏻🤍🙏🏻
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.
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. 🙏🏼❤️
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❤️
Prayers, appreciate your willingness to be so open to the reality of this horrid condition.
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
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.
Love your reply!
Leslie, my heart goes out to you and your family. Keeping you all in my prayers 💜
Thank you both for your openness in talking about this journey.
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. ❤️
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!
Blessings to you and Jason! Take care of you!! ❣️❣️
Love you Leslie! Praying for you and Jason!
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
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 🙏🏼💞
Thank you for being a light for others on this journey. Praying
You really are an inspiration to all of us out here watching!
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. ❤️🙏🙏🙏
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.
Jason, thank you so much for your sharing. My Mom had Lewy's and it helps me so much to hear your perspective. I love you guys!!
Thank you for being so brave and putting yourselves out there to help and support others! I will commit to daily praying for you both. I cried with you and for you. ❤
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.
Agreed. A very courageous thing for him to do.
Absolutely, especially so we can all understand, that's generousity.
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 ❤️
Thank you for the update & God bless you both! Words can never express how much you both help! Keeping you in prayer!💜🙏💜
Leslie and Jason, sending much love to both of you. Compassion is the greatest gift we have and can give as human beings. Thank you for the education of this disease. I admire you Jason for being you and letting us become educated and giving us the chance to be wise and listen without judgement. Leslie I admire you as the care giver because in presenting the truth is to also feel great pain. It's the hardest job. So many prayers and 💘 love sent your way. You both are totally authentic and that is rare and the grandest treasure in preserving the spirit and soul.
Much sincere respect.
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. ❤️❤️❤️
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.
I think this is so helpful to understand what my mom might be going through with her dimensia. Jason is so smart and I see that here. Love you two. Thank you both for doing this.
Thank you for sharing your journey, because it helps others and we appreciate it. Love and light to you.
I totally understand your situation, I feel your pain. I know sharing with others helps to ease your pain. My husband was a Vietnam veteran he passed away n 2021 he had renal cancer, diabetes, a prosthesis, which brought on heart disease, all from his being subjected to agent orange. While going through that ordeal, I was and still am caring for my 88 year old dementia mom who is a challenge everyday. I understand your faith being tested, and the frustration of not being able to fix the problem. You are not alone my friend, and you are right God is the answer for strength during these difficult days ahead. We can be strength to each other. ❤️
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.💞
I have no words for the inspiration you both are. Blessings and loving thoughts sent your way. I hope I can face adversity that might happen with the grace you express.
God bless you Leslie. Thank you for allowing yourselves to be vulnerable, it is a blessing to others in whatever they may going through. 💗
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!
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.
Thank you for sharing your lives. I know it means a lot to so many people.
I’m not a caregiver or a patient but do have a couple of friends who’s parents have Lewybodies always love learning.
Leslie the love you give Jason and your family is inspiring
God bless you my friend!!!
We are praying for you and Jason everyday…❤️❤️❤️
I just love you two, thank you for being vulnerable and sharing your lives with us!
So glad I found your channel…def subbing. Dealing with this in my dad. God bless you both and everyone dealing with this.❤️
God bless you both, Jason is so fortunate to have you!
Sorry you have to go through these struggles. Sending tons of hugs your way. 💜
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!!!
I really appreciate all you’re doing to help us learn more about LB Dementia. 🙏🏻🙏🏻💖
It’s great to see you laugh together! And that he is free to interject his comments!
You are so amazing and it’s good to cry and release the pressure. I went through this with my Mother but it’s not the same. For you so young and so much to live for and seeing Jason and his decline it’s just heart breaking. I wish I could just reach out and give you a huge hug. Take care of yourself and try to get rest.
Thank you both for 'keeping it real'. What you are dealing with shouldn't happen to anybody. The pain of not knowing what each day will bring and how long it will last is so unbearable. You are kind and generous of spirit to share your journey with others. Relish your moments of joy and love.
Thank you so much for doing these videos. My partner was just diagnosed with LBD but because of a video last year where Jason talked about a veil coming over him I thought that is what my partner had ( my partner describes the feeling of a veil coming over him).
Theses videos help me so much thank you!
I admire you, your honesty, your resiliency, your faith, and your kind heart.
Leslie, you and Jason have really touched my heart. I absolutely love your videos on home decor. You have a beautiful home and family.
I always look forward to your seasonal front porch videos. 😊
This video, however, was very emotional for me. Thank you for sharing your feelings and what you are going through on this journey with Jason. I love the respect and patience you show Jason in these interviews. I'm so sorry that you both are going through all this, but I truly appreciate you sharing your knowledge and experience with others. God bless you both and you are in my thoughts and prayers.
I'm so glad that January brought some "sunshine" into your journey. The insight you and your husband are offering to the community of people on your same journey, even if its for a different disease, is extremely valuable. Thank you very much for being so giving our yourselves. God bless you and your family.
You’re both amazing! Prayers for peace, strength, and comfort!
I’ve been hoping for an update. I’ve known people with your specific disease. It’s hard but I think it’s wonderful that you are willing to share your story. Thank you and God bless you.
Thanks for being so brave, our hearts are with you.
Thanks for being brave and vulnerable - lovely combination !
You are both an inspiration and helping so many people. Your love for each other will carry you through. Thank you both for sharing your journey. Sending love and prayers from Canada.💜
Leslie and Jason, you're both amazing! Sending you lots of love for you in this journey.
My heart goes out to you both. Thank you for your videos as I wish we would have had this when my Mother in law had Lewy Body and it was so hard but being in her 80’s in someways made it easier to accept I could not imagine if my husband had it. Please do take care of yourself and let others help you as the primary caregiver. Jason Thank You for sharing your life with us, you are helping so many others either in the same boat as you or being a caregiver to learn and know they are not alone. My prayers and thoughts with you both❤️