My aunt had dementia. The easiest thing we did for her was agree with her. When she heard noises that weren't there, we just agreed with her and said maybe they will stop soon. When she asked questions over and over we just answered and never told her she just asked that. It is a very hard thing to go through with your loved one. It looks like them on the outside but on the inside it's a whole new person. My daughter had an old navy shilrt on one day. My aunt asked her about the shirt several times. Asked her if she was in the navy over and over again. Finally my daughter said, yes I'm in the Navy! I drive the boar! My aunt was so proud of my daughter for having that job! lol One night she was scared to go to sleep because she thought someone was going to break in. I told her I called the police and they have policemen stationed around her home. She thanked me and fell right to sleep. Sometimes it is easier to lie to them or agree with them just so they don't get frustrated. At the time my aunt was going through the dementia my Gram was living with alzhimers. What an interesting life we lived for almost ten years. They ended up both living in the same nursing home across the hall from each other. It was interesting, sad, happy and all the emotions at the same time living this with them. God Bless you both.
Both of my Grandparents are going through this right now. It's like you have to talk to them like toddlers. They ask the same question over and over. My Grandmother is worse than my Grandfather. She doesn't know who he is and will scratch and attack him. If he falls at night because he has difficulty getting around because of encephalitis. She sees him fall and doesn't comprehend that he needs help and pick up the phone to call someone, she goes back to sleep.
@@mariamyphone8949 That’s so hard and horribly sad. I hope they have some good care and a caretaker. My mom is starting to have dementia but isn’t this severe yet. She’s almost 92.
Dementia sucks. I cared for an 91 year old gentleman. At 93 his dementia got so bad he had to be placed in memory care. I visit him but he thinks everyone is stealing from him. He started wanting me to "take him home". I can't visit him right now because he really thinks he can come live with me or go back to his house. He can't afford to pay me for 24/7 365 care. I also don't think my husband would like it very much. He's in the best place possible for him, even though he doesn't think so. 😢 I'm not even family or I would. I'm just a hired private duty nurse. I'm also a retired RN. Retired due to a disability, myself. But I could care for this gentleman for 3x a week and driving him to Dr appointments.
I often remember this little saying my Mom taught me: "Yard by yard, life can be hard. But inch by inch, it's a cinch!" It helps me to put things into perspective. And for all of us, Love is the key ❤
Your introduction came so close to home!! I cried! I too am a nurse, empathic, and I retired early to take care of my husband with Parkinson’s and now Lewy body dementia. Yes, it was place in me to take care of him. It is hard but I wouldn’t want anyone else to do it. I need to live one day more than him. The k you for your channel!
Thank you for sharing. Old school nurse here. I have worked with a lot of dementia patients and multiple patients with Lewy body also. They have trouble with dysphagia as you know so the clearing noise Jason is making maybe from just saliva build up in his throat and his nervous system is just trying to clear what seems to be full. Trying to explain it. I hope that makes some sense. Because we just normally automatically swallow were as his nervous system is trying to remind him to swallow. Just a thought. Prayers for this journey you both are on. Leslie, I love your honesty and I know how hard this is on you. ❤
My grandpa had dementia and it was so hard but he never forgot who I was and I thank god for that. Sometimes he had trouble remembering my name but the way his face would light up when I would walk in the room was unforgettable. There days before he passed he was already sleeping most of the day. Out of nowhere I was holding his hand, he sat up and looked at me, said thank you so many times and kissed my cheeks…a moment I will never forget. I miss him everyday. He raised me since I was 3 days old. ❤
My husband was diagnosed in September 2022 with Lewy Body Dementia at 60 yrs of age. He had a triple heart bypass surgery in August 2022 and he came out of that a different man then who I married 36 years prior. He had terrible hallucinations, he was delirious, combative and, especially with me, argumentative and agitated. He is on two different meds to help control the hallucinations and delirium which they think was brought out with the anesthesia. He also has stage 4 CKD, Diabetes (recently had to have all toes off one foot and 1 off other and hasn’t been able to stand or walk since before Feb 1) and Parkinson’s Disease. Unfortunately, I am disabled myself and unable to care for him at home. I’ve watched all of your videos on Lewy Body and this was the first I remembered you mentioning that Jason has hallucinations. My husband goes in cycles especially with sleep. He stares a lot and I know that he goes somewhere else at that time. He has gotten better with the meds and he realizes when he does hallucinate that it can’t be real which is a big improvement. My heart goes out to you and I admire your courage to be able to help others realize what this disease does to both of you. Thank you and my prayers are with you.
YOU GO GIRL! BLESS YOU BOTH. My husband (mild dementia/ possibly LBD) and I are traveling this journey with you. It’s so comforting to have friends on the same path. I started watching ages ago because of the LBD connection and just fell in love with you both. I’m so happy you are listening to the Holy Spirit and moving forward courageously in God’s work. 🙏✝️🥰
I’ve just started watching you because my husband has what I’ve been calling “Short term memory loss”. I am 76 and my husband is 75. He also is a veteran and was diagnosed WITH PTSD. I have just started telling people because I didn’t want people to think he was crazy. He too has gone through personality changes. I too am feeling the stress of “being in charge”. Thank you for sharing, I hope to learn a lot from you and your husband. My husband Kenny isn’t ready to talk about himself but he will agree with me if I ask him. Thank you!
Im currently caring for mum who has late stage Alzheimer's (74 years of age). The swallowing is a HUGE issue. It is called Dysphagia and is very common with ageing and in Dementia specifically. A referral to a speech and language therapist is highly recommended. God bless you both on your journey. You are clearly a wonderful couple and God is with you. Draw close to Him and He will draw close to you. God has a perfect plan for your lives even in the darkest moments. I'm so glad I stumbled across your channel and to be part of your journey. I will pray for you both. Much love 💕
You are walking down a long road of dementia. I've had a mother and brother that had dementia. It is so hard to see them change. With Jason's choking and coughing (I've worked with geriatric patients) I've learned if my patients would tilt their chins down and swallow it helps. Making memories is so important. I'm sorry you have this going on. His smile 😁 is so warming. You two are so great. Keep the faith. Thank him for his service. When he gets frazzled change the subject or walk away. Pain makes ya cranky. My degenerative discs in my back when I'm having a pain day I am cranky. Take care.
Leslie, we are here because we adore you! Anything you want to share we, well I, want to hear. I love your creative side but I really love your gentle heart and your caring soul. I always wish I could just reach into the screen and give you a hug. You and Jason are in my daily prayers now and always. YOU ARE AMAZING! ❤️🙏🏼🤗
You and Jason are a wonderful couple. I am sorry that Jason had a brain injury protecting us and now has to suffer for it. Thank you Jason for serving for all of us. You are such a caring person Leslie and a wonderful wife and caregiver. God Bless you both.❤️
Thank you for sharing Jason’s and your journey. Every feeling you have courageously described I have had as well. My 66-year-old husband and soulmate was diagnosed with Alzheimer’s fall of 2022. We’ve been married 44 years. Jason and you are a gift in my life.
I sent you a little encouragement from France. Here this disease is not yet very well known. I accompanied my husband for 7 years and he decided to end his lifetime last August. It was wonderful to be at his side and so exhausting the last two years for both of us, even if we had medical help. I wish you both to appreciate the “ normal “ moments and get as much help as possible for the times that might come , when he will no more be capable to do anything by himself… and arrange everything for the future while he will be able to decide. With all my compassion and 💕 love Veronika
I have so much to comment, but I’ll try not to make it a book. My sister makes noises like you described. She’s been making these noises for about three years. I hate today get used to embarrassing situations, they will happen. There are cards you can print explaining there might be odd behavior due to dementia. I considered making some up because when I take my sister into the community, she has embarrassing behaviors. As for the lack of motivation, it’s so common. Sometimes it is lack of motivation and sometimes it’s the lack of executive functions. They can’t put the steps together in their head to get it done. I so understand the communication part. I have no conversation with my sister and haven’t for more than a year. Sometimes she will answer a question with yes or no. But it’s not always accurate. When I ask what she had for breakfast she always tells me chicken. It’s never chicken. I am happy you can have conversations. Sometimes my sister literally does not even understand what is being said. She does talk, but it is mostly a loop of what she wants to say. She also has auditory hallucinations. The meds they put her on for the hallucinations made her movements so slow and stiff. She developed a shuffle. Stopped talking except for the words yes, no, and okay. Nothing else! Off those meds now. I caution you not to decide what you can and can’t handle in the years to come. You’ll do your best, but nurse or not, this can get to a point where you won’t be able to care for Jason yourself. Maybe you will. Just don’t set yourself up for guilt if you come to a place where you need help or placement. I will be following and I wish you the best. Awareness is a good thing.
My uncle had Lewy Body Dementia. The best thing he did for my aunt is when he was first diagnosed they sat down and talked about what happens when... the biggest one for her was when he said when he wanted her to not care for him any longer. That way when it came time she was not questioning if he was going to be doing something wrong. My aunt to this day she says that was a gift that she didn't even realize she would need. Find a support group. My uncle was also fairly young, 50s when diagnosed. One thing that I found interesting was the Parkinsons symptoms that can show with the Lewy Body. Interesting enough he benefited from a nicotine patch for some reason it helped. Also look into day programs. At some point you will need the help. Please don't feel guilty about getting help! My uncle was in the military when he was younger and because of this the VA or their health benefits were able to help pay for some of those costs!
You are both so brave for putting yourselves out there to educate people and show support to others who are going thru something similar. I cared for my mother with dementia for 10 years. I don't regret it one bit, but it was exhausting, and I have some regrets that on certain days my patience was not great. My advice, Leslie, is that you arrange some respite care on a regular basis so you can recharge and be the best caregiver you can be. My advice to you, Jason, is to encourage Leslie to regularly take breaks so that she can continue to have the energy and patience she needs to be the best partner she can be. Your love for each other is obvious. You are both in my prayers.
I'm so impressed with you two. LB is such a tough thing. My dear BIL had parkinsons and LB and it was such a.............can't even describe it. Bad behavior, terrible sleeping, hallucinations.......... He loved music and that was a big part of his day. Very calming for him. There are 11 kids in my dad's family and 5 have passed with alzheimer's and two more were recently diagnosed. It weighs heavily on our mind, BUT we know God is good and has a plan for all of us; you and Jason also. We might forget God, but he will never forget us! My prayers are with Jason and you!
My Dad has dementia caused by a stroke. His wife's daughter had Lewy Body Dementia. It's such a strange thing to comprehend. I think you're doing a great job with Jason and I'd love to continue to hear about your journey together.
Your journey with Jason pulls at my heart. My husband developed Early Onset Alzheimer’s at around the age of 45. He was formally diagnosed when he was 50 after going to numerous Doctors and Neurological Specialists. A few years later he was also diagnosed with Lewy Body Dementia. We too, were high school sweethearts💕. I know how very difficult this journey is. You are an amazing and strong woman …. I am extremely impressed by the love and care and support you give your husband. I love the respect that you have for him as well …. And your Gift of Empathy, completely shines thru in your actions and words. I have been enjoying watching your Charming Abode Channel, which then led me to your journey with Dementia. Please reach out to me if you have any questions or if I may help in any way. Bless you …. Kim
My husband was diagnosed with dementia in 2018 too! It's been 5 years and quite the journey. I was so happy to stumble upon your page tonight. Thank you for sharing your journey with us. It helps alot! God bless you both. The Hooper's ;-)
I AM 73 AND WAS A CAREGIVER MOST OF MY LIFE. MY MOTHER HAD 2 REST HOMES AND I WORKED WITH HER THERE, SO LEARNED A LOT. I HAVE TAKEN CARE OF MANY OLDER DEMENTIA AND HANDICAPPED. I KNOW IT IS HARDER WITH FAMILY. I HAVE CARED FOR MANY OF THEM ALSO. I NEVER HAD CHILDREN BUT ALWAYS FELT I HAD OLDSTERS TO CARE FOR. GIRL YOU ARE DOING SO GOOD.
Leslie your doing a Wonderful job being a Loving caring Wife, Nurse & Caregiver. I’m a CNA, Caregiver for several of my family members who also have dementia. I continue to keep y’all in my Thoughts & Prayers. Thank you Jason & Leslie for sharing your journey with us. Thank you Jason for your Service
Thank you for sharing your journey. I am 52 and recently diagnosed with lewy body dementia and am one of 2 caregivers for my mom who is 81 and has Parkinson’s and LBD/DLB just as her sister (78, diagnosed 2 years ago) does as well and their mom had as well 15 years ago. I think the thing I worry about losing is my intelligence and science/medical background. That has always been something that has brought me joy while also being the one to research how to help my 2 autistic daughters and other family health and wellness issues. I’m hoping that ketosis can help to stall the progression for me as it has greatly helped my mom. I look forward to learning more from you both! 🙏🏾💜
Thank you for all that you and Jason share. A friend that I have known since I was 5 yrs old was diagnosed with early-onset dementia about a year ago when she was in here early 60s. She is like a sister to me and when I recently took her out to lunch it was apparent how affected she is by it. When our dishes arrived she decided that she did not want what she ordered but wanted what I had ordered. I discreetly went up to the manager and told him of her request and I broke down explaining that she was not being difficult but is suffering from dementia. I had not wanted to face it but at that moment I had to. On the bright side, there are a whole lot more laughs and good times that we will have. And I will always be there for her. Praying for you all on this difficult journey. God bless.
I too am a retired RN. My dad had LBD as well. I definitely feel for you and Jason. I almost didn’t watch your video for fear of not wanting to bring back old memories, but I’m glad I did. Each family situation is individual. Initially we thought dad had developed Parkinson’s, which was eventually diagnosed as LBD. Being an RN, I had still always questioned my ability to care for him. Then a colleague once told me, that as long as I did the best that I could, that is really all that matters. Always remember to not be hard on yourself. God Bless you, Jason, and your family. 🙏🏻💕
Your video popped up on suggestions and I was drawn to it. Within 5 mins I know why. I'm a disabled/retired NICU RN and empath. Please check into your local services for respite care. I'm a Reiki practitioner and will add your family to my list. Sending you love, light and blessings.
Thanks for the update! I’ve never heard of lewy body dementia until I watched one of your videos. My mom had Alzheimer’s and lived with it for about 14-16 years, she passed at 94. My oldest sister now has Alzheimer’s for the last maybe 5 years, we just went to visit her for the first time since before covid( she lives about 7 hours from me) she’s now in a memory care facility ( she’s 80) she doesn’t recognize me anymore😢That was expected but very hard, she’s been like a mom to me, she was the oldest of five and I was the youngest. I miss my big sister. Thinking of you, it’s very hard being a caretaker! Jason still has his sense of humor so that’s 😊 ❤ good luck you you both!
Thank you for your service, Jason. My daughter sent this link to me because it reminded her of me and her dad . My husband is suffering from bipolar disorder and dementia. Your story hit so close to home that it made me cry. I saw myself in you . We are older than you two, but the situation is the same.I pray for you both and hope that your journey is lead by faith. That is the only way I have been able to get furlough this. ❤️ be blessed.
Hi Leslie, I feel so much for you and Jason. 🥰🙅♀️🙅♀️ Dementia is the cruelest disease. My Mum and I cared for my late Dad for 20 years, he had Vascular Dementia and boy was it hard and heartbreakingly sad for us all. I started watching your Charming Abode Channel first before i realised that Jason has early onset LB dementia. I wish and please don’t misunderstand my meaning, that I had had someone to watch on TH-cam back then because by documenting your life together with LB it provides valuable insight and information that I didn’t have. My Mum didn’t want help/support or to discuss it, they just wanted me 24/7. I was married with a young daughter so it was full on. I’d do it again BUT not just me and my elderly Mum. It was too much for her at her age and for me. I needed to have insisted upon some kind of support from outside. I watched another one of your videos with Jason where you discuss loneliness. That really got to me. I have been crying a lot and feel quite triggered/traumatised by my memories. Dad passed in 2005. I didn’t want to feel this pain and a big part is my empathy for you and Jason of course. But I’ve realised that I never processed those 20 years and all that happened, even his passing felt more like a relief for which I later felt guilty about. Because it is the ‘long goodbye’ I didn’t grieve for my Dad and still haven’t. I feel that when you lose a loved one from dementia you do almost forget the ‘real’ person they once were and I’m waffling on here but you’ve helped me realise that I still need to grieve my Dad, it has hit me. 💡!! But I will try and do this or ask for help because i never realised this until now. I was about 17 when my Dad began acting differently and it was scary, they had me late it life so I cared for him until in was 44 when he died. I’m 61 now. This realisation is a positive thing i believe and I wouldn’t have realised it without watching your channel, so thank you for sharing with us. I wish I could wave a magic wand and cure Jason and everyone!! Lots of love to you both from Sally in the U.K. 🥰🙅♀️🙅♀️🧁🧁🍹🍹 Obviously I’m in no way comparing my Dad with Jason! I do hope one day soon all brain diseases will be solved/cured.
You are a special wife and the Lord will give you the strength you need to care for Jason and help him when he is living this challenging journey. May the Lord bless you and your family. Thank you for being so open and willing to share your lives.
Just found you guys! Thx for sharing. I’ve worked with Alzheimer’s patients for over 20 years as a therapist but I was burned out and retired from it in 2020. Then in 2021 my mom was diagnosed and now lives with me. She is in middle stages. So I know exactly how you feel about not enjoying that kind of work and then being thrust into as you new everyday life. I have no siblings to help carry the load and moms family isn’t helpful. Thank goodness for my 2 kids and my husband but the “burden” of it all is still on me. I am starting to have chest pain and anxiety that I’ve never had to deal with before. It’s a hard road but videos like this help the rest of us not feel as crazy! God bless.
Leslie thank you both for sharing such a hard thing. My heart breaks for you both. You are doing such a wonderful job taking care of Jason plus all the other things you do. I pray it is Gods will to have your channels grow enough that you will not have to work and can stay home. Please continue to keep us up to date and don’t forget to take care of yourself. Have a blessed week.
Just started watching this because my dad has recently been diagnosed. And the same mom and dad hid this very well. She passed and we were shocked at how many stages he has progressed with so few signs to us. Thank you for doing this!
My mom lived a very long life. She was 93 years old when she passed. However, her last 2 years were spent in a prison called dementia. The hardest day with her was the day she was looking at family pictures and she came across a picture of me and my twin sister. She began to tell me about her kids, her 2 little girls. She told me their names and spoke about them like they were still quite young. I realized….she didn’t know who I was. I told her my name was Susan, and she said that’s my daughters name too. I sat there completely crushed. I knew this day would come….but I wasn’t ready.
I too lived this my Momma suffered for 3 years but I miss her everyday even when she didnt know me I could hold her and love her this disease is heartbreaking
I believe it wonderful that you're documenting your Journey. Sharing it with us is very generous! I've set my alarm to go off at a certain time everyday to pray for you. I also pray God's grace and a special anointing for the task at hand for all of your Family, Friends and Neighbors that love you so much!!! Stay strong in the Lord and in the Strength of His might! Huge Hugs!!!
My dear friend had Lewy Body Dementia, he wrote a poem called finding 20 His neurologist had told him they hoped for 20% improvement. That's how he described the journey.
My husband was diagnosed as bipolar. I can sympathize with Leslie. The two mental health disorders can take a toll on caregiver’s and family. I just talk to God frequently and continue to walk on eggshells. Hang on Leslie. It’s hard.
Love to you guys. As a dementia caregiver myself. I don’t know how we do this. Dementia is such a horrible disease. I feel like it’s killing us both. Stay strong. 💪😢❤️
I’ve been following you two since the beginning as my Aunt is late stage. Bed bound can’t communicate so well and this disease robbed her of her independence strength she’s iconic to me the woman I modeled my own life after. This disease is unpredictable and just awful. You’ll appreciate that you documented this from the beginning. It’s hard I know personally and not fun to watch it’s progression but there will come a day that you’ll be glad you documented this. And huge thank you to you for sharing. It helped me recognize when my Aunt probably started this horrible journey through now. My heart breaks for you as I know what’s to come. But truly enjoy and love every minute you can still communicate with him I wish I could still talk to my Aunt and understand what she’s saying but it’s gone. So truly grab onto the time that you still have to converse and still recognize you The love of your life is still here.
It's can't be easy for neither of you to share such personal aspects of your life. But inwould say you are helping others by documenting this and I would encourage you to continue...through the good and bad. I watched Joe Joe's channel when his mother was going through dementia. It was down right heart wrenching sometimes but I can only imagine how it helped others to know that aren't alone in dealing with something like that. God bless you both. Hang in there. You both are amazing.
I just recently started following you and my heart goes out to you. I admire you both. I am a respiratory therapist and work in all areas. I will keep you in my prayers.
Thank you for sharing your story. It's much like my husband and I. My husband was diagnosed with Parkinsons at age 57, but as we look back, we recognize that symptoms were there almost 10 years before. They were just very subtle. Michael, my husband, has never had tremors. His Parkinsons presented with stiffness and rigidity, it has been 22 years now. Such a long time, but as I listened to you share how this new diagnosis makes you feel, I just wanted to hug you. You're grieving the loss of the man you married.. I still grieve, Michael was my knight in shining armor; intelligent, talented, funny, compassionate, and tender. I was his primary care giver until 4 years ago. We now have a wonderful care giver who helps out four days a week. Michael is completely wheelchair and bed bound. He experiences visual hallucinations. I felt sad when your husband said he sees the future with diapers. We've been there for long, long time. And like your husband said, you both realize that all of the hopes, dreams, and plans you once had are gone. It doesn't mean you can't make plans, they just have to be different. Your relationship will change, maybe from day to day. Just keep loving him. Reach out and get support. Please take care of you. Care giving can be exhausting. I'll be keeping both of you in my prayers. God bless you both ❤.
This video REALLY hit home! My husband had a traumatic brain injury in 2019 your husband says and does so much of the same as mine does. I’m going to have to find a different Neurologist because they don’t listen or talk to me, only him. We as wives see the changes that they are not aware of and Dr doesn’t see in such a short visit. Thank you for sharing!
I haven’t had a family member with dementia to this date but I am a nurse and a wife and I also have empathy and I’m so saddened by what the two of you are experiencing. I can tell you are so grateful to have one another and Jason is in the best loving care possible. I’ll continue to watch your videos to learn more about your experience with this condition and I hope the viewings help you to supplement your income adequately when the time comes for you to be home full time caring for your wonderful husband ! Prayers ❤
Oh my God I'm so sorry Jason and family . What a difficult brain disease to have . ❤ I truly hope you can find the best possible way to manage this . Jason, I hope you continue to receive patience , love , and understanding. Absolutely nothing to be embarrassed about AT all. .. my family member had a tbi, and this triggered her dimentia
I've been following you for ages and I've never seen this video . My heart breaks for you both. I've worked in Aged Care and I've always said it's the carers that suffer too. Take time for yourself too. I don't know what support services you have in the US , but my advice is don't feel bad asking for help . Lots of love to you both ❤❤❤
New subscriber! As my husband and I get older I think about things like this sometimes. I hope you are able to stay home with your loving husband and cherish the days you have.
My heart breaks for you, Jason and your children. My husband had 4 grand mal seizures in 24 hours and it affected his memory and temperament. I had 2 concussions in 2 years and I know I have to be more focused in what I do, but I keep pushing myself to remember details and learning new things, in hopes they don’t lead to anything else. Thank you two for sharing your story, you are both wonderful people. God bless you.
When I was a director in nursing I took a class that discussed ways to calm agitation or confusion. The one thing that stuck with me was a woman who had once been a caregiver was given a doll to “care for” that met with great approval and calmed her daily. It’s taking something from their past and using it to give them comfort.
My mother had Lewy Body Dementia & it was absolutely heart-wrenching. There was no dementia on my mother’s side so it was quite shocking & so disheartening. It’s a very hard journey, God Bless Both You & Jason. Grace, Love, and Patience go a long way. Hugs & Peace to You…
You’re doing wonderful job with educating us on this horrible disease. I took care of my mom for 10 years. Bless you and your husband, I’m subscribed now
Hello Leslie I have a husband who has this I miss him so much. I cry all the time he is in a nursing home. Took care of him for 5 years. My prayers are with both of you. Watch you both because I feel we are family. Thank u so much. May God heal you both. Blessings
Thanks to you both for sharing your journey! I'm from your other channel and I suspect my husband may have Lewy Body also! Y'all are in my thoughts and prayers 🙏🙏 ❤️❤️
Thank you!!! My husband has dementia FTD was diagnosed at 59 ! Thank you for making this video. I completely understand and I’m also in tears. God bless you always.🙏💙😘🕊️
I have been watching your videos a couple months or so now and I already love you guys dearly and now added y’all to my daily prayer list. Jason is a hoot and I mean that with lots of love. He is so funny when he can be and you Leslie are a beautiful lady inside and out when I watch the videos sometimes I laugh very heard and then again I cry hard because of what y’all are going thru. Hug Jason for me and tell him to hug you for me God strengthen both of you and God is still a miracle worker. Hold on yo Gods unchanging hand. 💗💙🙏🙏
Oh sweet girl, you both are amazing. People do need to know more about this type of dementia and how it can affect younger people, and how different it is. Thank you for sharing your journey.
My prayers are with you both every day. I'm so glad you are doing this journey and sharing your story. I was my mother-in-law caretaker for many years, and its a hard journey. Now my sister-in-law is now going through dementia, and it has been 10 + years since we admitted she was having issues. We're at the point now she is calm and sleeping most of the time. So happy to be following along with your journey and learning more about it. God be with you both.
You are both amazing. Leslie because of your loving and caring nature and Jason because of your sweet willingness to share this. I am on the verge of dementia. I forget everything. It is hard on my husband because I don't remember things he told me and hard for me because he thinks I dont listen to him. I will continue to pray for you. I hope you have a great trip to Europe and that you will share your adventures. Bless you both.
Hi Leslie, I adore you and your husband so much. I know as hard as it is to share your story, you are helping others. Caring for and living with a loved one with dementia is so very hard. I took care of my Dad until it was unsafe for him to be left alone. He also lost his short term memory. I want to share something I learned is that it is okay to ask for help and also encouraged. I was his main caregiver and had to deal with him being mad at me and yelling when I had to take somethings away like managing his money that made it very hard. I worked with social workers at the time and they told me for my own mental health was to have someone else take care of that part and I would be just the loving daughter to hug him, tell him I love him, and hold his hand when he was scared. ❤️
❤Please keep sharing your journey. I take care of my 91 yrs le Mom with dementia and your words and explanations are deeply needed. They really make a’ difference to my journey. I feel I’m walking right by you. You are both genuinely beautiful .❤❤
oh, my heart goes out to you both, and to all those who have commented here about their own struggles. what a difficult thing life can be. yes, we all die, but we don't all lose ourselves before it happens. may you be given the courage and strength and grace your journey will require. and may you be held in and by Loving Arms.
New to your channel..I’m so sorry for what your all going through but so thankful you are sharing your part of Jason’s story from your perspective…wishing you and Jason all the best..💫💫💫
This was so heart drenching. I'm not saying this to say don't do it again- is just life- i get it- but you are both so young, full of life and dreams and it hurts to see you two hurting. I pray for you both and pray that one day we all hear your miracle. You are both so sweet. You are also helping so many people going through the same path. Leslie- be strong. Care for yourself as well. God bless you both❤
I know this video was posted 2 months ago, but I just found you. Thank you for sharing your story, I will be one of your faithful followers & biggest prayer warriors. 🙏 My mom passed from Dementia 3 years ago & I was her caregiver, but I relate to Jason’s story more because my 33 year old son was a Corpsman in the Navy & suffered a traumatic brain injury. He is showing some scary symptoms & it scares me to death. He has & is being being treated for his TMI (traumatic brain injury), so we are hoping he’s just experiencing some side effects 🙏🤞. On another note, hearing about the throat growling immediately reminded me of my 8 yr old grandson, who is on the autism spectrum. He clears his throat & does the growling thing often & we think it is a sensory issue. Anyway, you both are so brave to share your story. I will be praying hard for the both of you & your family. ❤
You two are so sweet together. It is wonderful that Jason can be in a familiar setting. My heart goes out to you both. It’s definitely a journey. Plus, it’s so difficult when the dynamic changes in a relationship, when one partner has to assume the responsibilities that were covered by the disabled person before. Bless you for sharing your journeys and perspectives. Don’t be worried about what others think. They will have to deal with it in their own way, just as we all have to. It’s not shameful to be disabled.
You so clearly took all the right words out of my mind and heart and your honesty is healing. Thank you for sharing. I can breathe. I'm so glad you are a nurse. I don't want to try and explain to anyone else or dream of another life. I have accepted that this is my life for now and I am honored to serve and care for my 93 year old Grandmother who was diagnosed with vascular dementia six years ago. I have been blessed to learn more about dementia and alzheimers than I ever thought I would need. Her medical team answers my questions and respectfully listens to me and encourages me to take care of my mental health especially. Having the gift of empathy can be overwhelming sometimes. Please take care of yourself, some time for yourself and accept respite help. It's hardest to help family and her friends to see and understand who she is now. Both of you are going to be okay. You are not alone. May God bless you both with all that you will need on this journey.❤
I think it’s very helpful when people who are in situations like yours, do document and do share because it helps other people who might be in the same situation or might be heading in the same direction. It’s like a community and although I’m sure it is very difficult to share these things, it probably in the long run helps you too and being on TH-cam can probably give you some financial assistance as well. I see changes in my husband who will be 70 this year, but can’t pinpoint if something is really going on or it is normal aging.
You are absolutely incredible, both of you!! I’ve seen the previous video with you and Jason together & grateful that you’re documenting this together.❤
Congrats on the new direction you've been directed to... I'm from your first channel; have been following you for YEARS, and I'm excited to get to walk my family's journey with you holding my hand... And heart. ❤
This video makes me sad and hopeful at the same time. I know this will continue to progress but I also know your faith, respect for one another and your unquestionable love between you both will get you through this. Keep the faith and hope ❤
I am a nurse also. He is so cute and a sweetheart and i can see the love between you. Wondering if you should be leaving him alone at night. Can you get someone to sleep at your house when you work. Don’t stop working, you need an outlet of normalcy. Also, maybe he needs to have ENT check his throat again and see if he needs it dilated again. I am sure you know that Parkinson’s is part of Lewy Body. Maybe his swallowing muscles are affected. It sounds like he may have Restless Leg at night and there are meds to help with that. Praying for you.
God bless you❤. I lost my husband 1 year ago this month. We went through our journey for 7 years. He was diagnosed in October 2015. He was 55 years old. It was a hard, hard time but you can do it. If you ever need to talk to anyone, message me. You will both be in my prayers 🙏🏻
My aunt had dementia. The easiest thing we did for her was agree with her. When she heard noises that weren't there, we just agreed with her and said maybe they will stop soon. When she asked questions over and over we just answered and never told her she just asked that. It is a very hard thing to go through with your loved one. It looks like them on the outside but on the inside it's a whole new person. My daughter had an old navy shilrt on one day. My aunt asked her about the shirt several times. Asked her if she was in the navy over and over again. Finally my daughter said, yes I'm in the Navy! I drive the boar! My aunt was so proud of my daughter for having that job! lol One night she was scared to go to sleep because she thought someone was going to break in. I told her I called the police and they have policemen stationed around her home. She thanked me and fell right to sleep. Sometimes it is easier to lie to them or agree with them just so they don't get frustrated. At the time my aunt was going through the dementia my Gram was living with alzhimers. What an interesting life we lived for almost ten years. They ended up both living in the same nursing home across the hall from each other. It was interesting, sad, happy and all the emotions at the same time living this with them. God Bless you both.
Thank you for sharing this. I’m going to work on doing better at these things with my dear mom who is almost 92 years old.
That’s an act of pure kindness and love. Bless you. 💟
Both of my Grandparents are going through this right now. It's like you have to talk to them like toddlers. They ask the same question over and over. My Grandmother is worse than my Grandfather. She doesn't know who he is and will scratch and attack him. If he falls at night because he has difficulty getting around because of encephalitis. She sees him fall and doesn't comprehend that he needs help and pick up the phone to call someone, she goes back to sleep.
@@mariamyphone8949 That’s so hard and horribly sad. I hope they have some good care and a caretaker. My mom is starting to have dementia but isn’t this severe yet. She’s almost 92.
Dementia sucks.
I cared for an 91 year old gentleman. At 93 his dementia got so bad he had to be placed in memory care. I visit him but he thinks everyone is stealing from him. He started wanting me to "take him home". I can't visit him right now because he really thinks he can come live with me or go back to his house. He can't afford to pay me for 24/7 365 care. I also don't think my husband would like it very much. He's in the best place possible for him, even though he doesn't think so. 😢
I'm not even family or I would. I'm just a hired private duty nurse. I'm also a retired RN. Retired due to a disability, myself. But I could care for this gentleman for 3x a week and driving him to Dr appointments.
I often remember this little saying my Mom taught me:
"Yard by yard, life can be hard.
But inch by inch, it's a cinch!"
It helps me to put things into perspective. And for all of us,
Love is the key ❤
Your introduction came so close to home!! I cried! I too am a nurse, empathic, and I retired early to take care of my husband with Parkinson’s and now Lewy body dementia. Yes, it was place in me to take care of him. It is hard but I wouldn’t want anyone else to do it. I need to live one day more than him. The k you for your channel!
Thank you for sharing. Old school nurse here. I have worked with a lot of dementia patients and multiple patients with Lewy body also. They have trouble with dysphagia as you know so the clearing noise Jason is making maybe from just saliva build up in his throat and his nervous system is just trying to clear what seems to be full. Trying to explain it. I hope that makes some sense. Because we just normally automatically swallow were as his nervous system is trying to remind him to swallow. Just a thought. Prayers for this journey you both are on. Leslie, I love your honesty and I know how hard this is on you. ❤
Nurses rock!! Thank you.
My grandpa had dementia and it was so hard but he never forgot who I was and I thank god for that. Sometimes he had trouble remembering my name but the way his face would light up when I would walk in the room was unforgettable. There days before he passed he was already sleeping most of the day. Out of nowhere I was holding his hand, he sat up and looked at me, said thank you so many times and kissed my cheeks…a moment I will never forget. I miss him everyday. He raised me since I was 3 days old. ❤
My husband was diagnosed in September 2022 with Lewy Body Dementia at 60 yrs of age. He had a triple heart bypass surgery in August 2022 and he came out of that a different man then who I married 36 years prior. He had terrible hallucinations, he was delirious, combative and, especially with me, argumentative and agitated. He is on two different meds to help control the hallucinations and delirium which they think was brought out with the anesthesia. He also has stage 4 CKD, Diabetes (recently had to have all toes off one foot and 1 off other and hasn’t been able to stand or walk since before Feb 1) and Parkinson’s Disease. Unfortunately, I am disabled myself and unable to care for him at home. I’ve watched all of your videos on Lewy Body and this was the first I remembered you mentioning that Jason has hallucinations. My husband goes in cycles especially with sleep. He stares a lot and I know that he goes somewhere else at that time. He has gotten better with the meds and he realizes when he does hallucinate that it can’t be real which is a big improvement. My heart goes out to you and I admire your courage to be able to help others realize what this disease does to both of you. Thank you and my prayers are with you.
YOU GO GIRL! BLESS YOU BOTH. My husband (mild dementia/ possibly LBD) and I are traveling this journey with you. It’s so comforting to have friends on the same path. I started watching ages ago because of the LBD connection and just fell in love with you both. I’m so happy you are listening to the Holy Spirit and moving forward courageously in God’s work. 🙏✝️🥰
I’ve just started watching you because my husband has what I’ve been calling “Short term memory loss”. I am 76 and my husband is 75. He also is a veteran and was diagnosed WITH PTSD. I have just started telling people because I didn’t want people to think he was crazy. He too has gone through personality changes. I too am feeling the stress of “being in charge”. Thank you for sharing, I hope to learn a lot from you and your husband. My husband Kenny isn’t ready to talk about himself but he will agree with me if I ask him. Thank you!
Im currently caring for mum who has late stage Alzheimer's (74 years of age). The swallowing is a HUGE issue. It is called Dysphagia and is very common with ageing and in Dementia specifically. A referral to a speech and language therapist is highly recommended. God bless you both on your journey. You are clearly a wonderful couple and God is with you. Draw close to Him and He will draw close to you. God has a perfect plan for your lives even in the darkest moments. I'm so glad I stumbled across your channel and to be part of your journey. I will pray for you both. Much love 💕
You are walking down a long road of dementia. I've had a mother and brother that had dementia. It is so hard to see them change. With Jason's choking and coughing (I've worked with geriatric patients) I've learned if my patients would tilt their chins down and swallow it helps. Making memories is so important. I'm sorry you have this going on. His smile 😁 is so warming. You two are so great. Keep the faith. Thank him for his service. When he gets frazzled change the subject or walk away. Pain makes ya cranky. My degenerative discs in my back when I'm having a pain day I am cranky. Take care.
Leslie, we are here because we adore you! Anything you want to share we, well I, want to hear. I love your creative side but I really love your gentle heart and your caring soul. I always wish I could just reach into the screen and give you a hug. You and Jason are in my daily prayers now and always. YOU ARE AMAZING! ❤️🙏🏼🤗
You and Jason are a wonderful couple. I am sorry that Jason had a brain injury protecting us and now has to suffer for it. Thank you Jason for serving for all of us. You are such a caring person Leslie and a wonderful wife and caregiver. God Bless you both.❤️
Thank you for sharing Jason’s and your journey. Every feeling you have courageously described I have had as well. My 66-year-old husband and soulmate was diagnosed with Alzheimer’s fall of 2022. We’ve been married 44 years. Jason and you are a gift in my life.
My prayers go out to you both! Please keep us in your journey as you deal with this difficult situation! It helps more than you know! 32:47
I sent you a little encouragement from France. Here this disease is not yet very well known. I accompanied my husband for 7 years and he decided to end his lifetime last August. It was wonderful to be at his side and so exhausting the last two years for both of us, even if we had medical help. I wish you both to appreciate the “ normal “ moments and get as much help as possible for the times that might come , when he will no more be capable to do anything by himself… and arrange everything for the future while he will be able to decide. With all my compassion and 💕 love Veronika
I have so much to comment, but I’ll try not to make it a book. My sister makes noises like you described. She’s been making these noises for about three years. I hate today get used to embarrassing situations, they will happen. There are cards you can print explaining there might be odd behavior due to dementia. I considered making some up because when I take my sister into the community, she has embarrassing behaviors. As for the lack of motivation, it’s so common. Sometimes it is lack of motivation and sometimes it’s the lack of executive functions. They can’t put the steps together in their head to get it done. I so understand the communication part. I have no conversation with my sister and haven’t for more than a year. Sometimes she will answer a question with yes or no. But it’s not always accurate. When I ask what she had for breakfast she always tells me chicken. It’s never chicken. I am happy you can have conversations. Sometimes my sister literally does not even understand what is being said. She does talk, but it is mostly a loop of what she wants to say. She also has auditory hallucinations. The meds they put her on for the hallucinations made her movements so slow and stiff. She developed a shuffle. Stopped talking except for the words yes, no, and okay. Nothing else! Off those meds now. I caution you not to decide what you can and can’t handle in the years to come. You’ll do your best, but nurse or not, this can get to a point where you won’t be able to care for Jason yourself. Maybe you will. Just don’t set yourself up for guilt if you come to a place where you need help or placement. I will be following and I wish you the best. Awareness is a good thing.
Thank you for your service, Jason 👏🏻👏🏻👏🏻👏🏻👏🏻
My uncle had Lewy Body Dementia. The best thing he did for my aunt is when he was first diagnosed they sat down and talked about what happens when... the biggest one for her was when he said when he wanted her to not care for him any longer. That way when it came time she was not questioning if he was going to be doing something wrong. My aunt to this day she says that was a gift that she didn't even realize she would need. Find a support group. My uncle was also fairly young, 50s when diagnosed. One thing that I found interesting was the Parkinsons symptoms that can show with the Lewy Body. Interesting enough he benefited from a nicotine patch for some reason it helped. Also look into day programs. At some point you will need the help. Please don't feel guilty about getting help! My uncle was in the military when he was younger and because of this the VA or their health benefits were able to help pay for some of those costs!
You are both so brave for putting yourselves out there to educate people and show support to others who are going thru something similar. I cared for my mother with dementia for 10 years. I don't regret it one bit, but it was exhausting, and I have some regrets that on certain days my patience was not great. My advice, Leslie, is that you arrange some respite care on a regular basis so you can recharge and be the best caregiver you can be. My advice to you, Jason, is to encourage Leslie to regularly take breaks so that she can continue to have the energy and patience she needs to be the best partner she can be. Your love for each other is obvious. You are both in my prayers.
I'm so impressed with you two. LB is such a tough thing. My dear BIL had parkinsons and LB and it was such a.............can't even describe it. Bad behavior, terrible sleeping, hallucinations.......... He loved music and that was a big part of his day. Very calming for him. There are 11 kids in my dad's family and 5 have passed with alzheimer's and two more were recently diagnosed. It weighs heavily on our mind, BUT we know God is good and has a plan for all of us; you and Jason also. We might forget God, but he will never forget us! My prayers are with Jason and you!
I see God’s love shining in your eyes. Your courage, strength and humor are incredibly inspiring to all of us.
My Dad has dementia caused by a stroke. His wife's daughter had Lewy Body Dementia. It's such a strange thing to comprehend. I think you're doing a great job with Jason and I'd love to continue to hear about your journey together.
Leslie, you are doing a phenomenal job. So hard. You are precious.
Your journey with Jason pulls at my heart. My husband developed Early Onset Alzheimer’s at around the age of 45.
He was formally diagnosed when he was 50 after going to numerous Doctors and Neurological Specialists. A few years later he was also diagnosed with Lewy Body Dementia. We too, were high school sweethearts💕. I know how very difficult this journey is. You are an amazing and strong woman …. I am extremely impressed by the love and care and support you give your husband. I love the respect that you have for him as well …. And your Gift of Empathy, completely shines thru in your actions and words.
I have been enjoying watching your Charming Abode Channel, which then led me to your journey with Dementia.
Please reach out to me if you have any questions or if I may help in any way. Bless you …. Kim
My husband was diagnosed with dementia in 2018 too! It's been 5 years and quite the journey. I was so happy to stumble upon your page tonight. Thank you for sharing your journey with us. It helps alot! God bless you both. The Hooper's ;-)
I AM 73 AND WAS A CAREGIVER MOST OF MY LIFE. MY MOTHER HAD 2 REST HOMES AND I WORKED WITH HER THERE, SO LEARNED A LOT. I HAVE TAKEN CARE OF MANY OLDER DEMENTIA AND HANDICAPPED. I KNOW IT IS HARDER WITH FAMILY. I HAVE CARED FOR MANY OF THEM ALSO. I NEVER HAD CHILDREN BUT ALWAYS FELT I HAD OLDSTERS TO CARE FOR. GIRL YOU ARE DOING SO GOOD.
Leslie your doing a Wonderful job being a Loving caring Wife, Nurse & Caregiver. I’m a CNA, Caregiver for several of my family members who also have dementia. I continue to keep y’all in my Thoughts & Prayers. Thank you Jason & Leslie for sharing your journey with us. Thank you Jason for your Service
Oh Leslie, I’ve been following you for a while now but never saw this very first video. 45 years old, just about broke my heart. ❤️
Thank you for sharing your journey. I am 52 and recently diagnosed with lewy body dementia and am one of 2 caregivers for my mom who is 81 and has Parkinson’s and LBD/DLB just as her sister (78, diagnosed 2 years ago) does as well and their mom had as well 15 years ago. I think the thing I worry about losing is my intelligence and science/medical background. That has always been something that has brought me joy while also being the one to research how to help my 2 autistic daughters and other family health and wellness issues. I’m hoping that ketosis can help to stall the progression for me as it has greatly helped my mom. I look forward to learning more from you both! 🙏🏾💜
Thank you for all that you and Jason share. A friend that I have known since I was 5 yrs old was diagnosed with early-onset dementia about a year ago when she was in here early 60s. She is like a sister to me and when I recently took her out to lunch it was apparent how affected she is by it. When our dishes arrived she decided that she did not want what she ordered but wanted what I had ordered. I discreetly went up to the manager and told him of her request and I broke down explaining that she was not being difficult but is suffering from dementia. I had not wanted to face it but at that moment I had to. On the bright side, there are a whole lot more laughs and good times that we will have. And I will always be there for her. Praying for you all on this difficult journey. God bless.
I too am a retired RN. My dad had LBD as well. I definitely feel for you and Jason. I almost didn’t watch your video for fear of not wanting to bring back old memories, but I’m glad I did. Each family situation is individual. Initially we thought dad had developed Parkinson’s, which was eventually diagnosed as LBD. Being an RN, I had still always questioned my ability to care for him. Then a colleague once told me, that as long as I did the best that I could, that is really all that matters. Always remember to not be hard on yourself. God Bless you, Jason, and your family. 🙏🏻💕
You are an adorable couple - even during this very difficult time your sense of humor shines through! God bless you both!
Your video popped up on suggestions and I was drawn to it. Within 5 mins I know why. I'm a disabled/retired NICU RN and empath. Please check into your local services for respite care. I'm a Reiki practitioner and will add your family to my list. Sending you love, light and blessings.
Thanks for the update! I’ve never heard of lewy body dementia until I watched one of your videos. My mom had Alzheimer’s and lived with it for about 14-16 years, she passed at 94. My oldest sister now has Alzheimer’s for the last maybe 5 years, we just went to visit her for the first time since before covid( she lives about 7 hours from me) she’s now in a memory care facility ( she’s 80) she doesn’t recognize me anymore😢That was expected but very hard, she’s been like a mom to me, she was the oldest of five and I was the youngest. I miss my big sister. Thinking of you, it’s very hard being a caretaker! Jason still has his sense of humor so that’s 😊 ❤ good luck you you both!
Thank you for your service, Jason. My daughter sent this link to me because it reminded her of me and her dad . My husband is suffering from bipolar disorder and dementia. Your story hit so close to home that it made me cry. I saw myself in you . We are older than you two, but the situation is the same.I pray for you both and hope that your journey is lead by faith. That is the only way I have been able to get furlough this. ❤️ be blessed.
Hi Leslie, I feel so much for you and Jason. 🥰🙅♀️🙅♀️
Dementia is the cruelest disease.
My Mum and I cared for my late Dad for 20 years, he had Vascular Dementia and boy was it hard and heartbreakingly sad for us all.
I started watching your Charming Abode Channel first before i realised that Jason has early onset LB dementia.
I wish and please don’t misunderstand my meaning, that I had had someone to watch on TH-cam back then because by documenting your life together with LB it provides valuable insight and information that I didn’t have. My Mum didn’t want help/support or to discuss it, they just wanted me 24/7.
I was married with a young daughter so it was full on. I’d do it again BUT not just me and my elderly Mum. It was too much for her at her age and for me. I needed to have insisted upon some kind of support from outside.
I watched another one of your videos with Jason where you discuss loneliness. That really got to me.
I have been crying a lot and feel quite triggered/traumatised by my memories. Dad passed in 2005. I didn’t want to feel this pain and a big part is my empathy for you and Jason of course. But I’ve realised that I never processed those 20 years and all that happened, even his passing felt more like a relief for which I later felt guilty about. Because it is the ‘long goodbye’ I didn’t grieve for my Dad and still haven’t.
I feel that when you lose a loved one from dementia you do almost forget the ‘real’ person they once were and I’m waffling on here but you’ve helped me realise that I still need to grieve my Dad, it has hit me. 💡!! But I will try and do this or ask for help because i never realised this until now. I was about 17 when my Dad began acting differently and it was scary, they had me late it life so I cared for him until in was 44 when he died. I’m 61 now. This realisation is a positive thing i believe and I wouldn’t have realised it without watching your channel, so thank you for sharing with us. I wish I could wave a magic wand and cure Jason and everyone!! Lots of love to you both from Sally in the U.K. 🥰🙅♀️🙅♀️🧁🧁🍹🍹
Obviously I’m in no way comparing my Dad with Jason!
I do hope one day soon all brain diseases will be solved/cured.
You are a special wife and the Lord will give you the strength you need to care for Jason and help him when he is living this challenging journey. May the Lord bless you and your family. Thank you for being so open and willing to share your lives.
My dad had Lewy body. Seeing it first hand especially one you love can be scary and emotional. My thoughts and prayers are with you both.
Just found you guys! Thx for sharing. I’ve worked with Alzheimer’s patients for over 20 years as a therapist but I was burned out and retired from it in 2020. Then in 2021 my mom was diagnosed and now lives with me. She is in middle stages. So I know exactly how you feel about not enjoying that kind of work and then being thrust into as you new everyday life. I have no siblings to help carry the load and moms family isn’t helpful. Thank goodness for my 2 kids and my husband but the “burden” of it all is still on me. I am starting to have chest pain and anxiety that I’ve never had to deal with before. It’s a hard road but videos like this help the rest of us not feel as crazy! God bless.
Leslie thank you both for sharing such a hard thing. My heart breaks for you both. You are doing such a wonderful job taking care of Jason plus all the other things you do. I pray it is Gods will to have your channels grow enough that you will not have to work and can stay home. Please continue to keep us up to date and don’t forget to take care of yourself. Have a blessed week.
Just started watching this because my dad has recently been diagnosed. And the same mom and dad hid this very well. She passed and we were shocked at how many stages he has progressed with so few signs to us. Thank you for doing this!
My mom lived a very long life. She was 93 years old when she passed. However, her last 2 years were spent in a prison called dementia. The hardest day with her was the day she was looking at family pictures and she came across a picture of me and my twin sister. She began to tell me about her kids, her 2 little girls. She told me their names and spoke about them like they were still quite young. I realized….she didn’t know who I was. I told her my name was Susan, and she said that’s my daughters name too. I sat there completely crushed. I knew this day would come….but I wasn’t ready.
I am so very sorry that has happened to you.🫶🏻
I too lived this my Momma suffered for 3 years but I miss her everyday even when she didnt know me I could hold her and love her this disease is heartbreaking
I just found your series. Thank you so very much for sharing your journey. My husband is at the start of his journey. Be Blessed. Lori
You know what I saw in this video…… not illness, or disability or diagnosis….. I see LOVE ❤️ real LOVE ❤️
I believe it wonderful that you're documenting your Journey. Sharing it with us is very generous! I've set my alarm to go off at a certain time everyday to pray for you. I also pray God's grace and a special anointing for the task at hand for all of your Family, Friends and Neighbors that love you so much!!! Stay strong in the Lord and in the Strength of His might! Huge Hugs!!!
My dear friend had Lewy Body Dementia, he wrote a poem called finding 20 His neurologist had told him they hoped for 20% improvement. That's how he described the journey.
You are amazing. Thank you for sharing your lives with us. Hugs to you. xoxo
My husband was diagnosed as bipolar. I can sympathize with Leslie. The two mental health disorders can take a toll on caregiver’s and family. I just talk to God frequently and continue to walk on eggshells. Hang on Leslie. It’s hard.
Love to you guys. As a dementia caregiver myself. I don’t know how we do this. Dementia is such a horrible disease. I feel like it’s killing us both. Stay strong. 💪😢❤️
I’ve been following you two since the beginning as my Aunt is late stage. Bed bound can’t communicate so well and this disease robbed her of her independence strength she’s iconic to me the woman I modeled my own life after. This disease is unpredictable and just awful. You’ll appreciate that you documented this from the beginning. It’s hard I know personally and not fun to watch it’s progression but there will come a day that you’ll be glad you documented this. And huge thank you to you for sharing. It helped me recognize when my Aunt probably started this horrible journey through now. My heart breaks for you as I know what’s to come. But truly enjoy and love every minute you can still communicate with him I wish I could still talk to my Aunt and understand what she’s saying but it’s gone. So truly grab onto the time that you still have to converse and still recognize you The love of your life is still here.
You and Jason are helping so many people with your videos on this difficult journey. Please continue sharing .
My heart goes out to you both. ❤️
It's can't be easy for neither of you to share such personal aspects of your life. But inwould say you are helping others by documenting this and I would encourage you to continue...through the good and bad. I watched Joe Joe's channel when his mother was going through dementia. It was down right heart wrenching sometimes but I can only imagine how it helped others to know that aren't alone in dealing with something like that. God bless you both. Hang in there. You both are amazing.
I just recently started following you and my heart goes out to you. I admire you both. I am a respiratory therapist and work in all areas. I will keep you in my prayers.
My husband's mother just died from dementia. It is an awful disease. Please keep the videos coming. Thanks and good luck. 🙏🙏
Thank you for sharing your story. It's much like my husband and I. My husband was diagnosed with Parkinsons at age 57, but as we look back, we recognize that symptoms were there almost 10 years before. They were just very subtle. Michael, my husband, has never had tremors. His Parkinsons presented with stiffness and rigidity, it has been 22 years now. Such a long time, but as I listened to you share how this new diagnosis makes you feel, I just wanted to hug you. You're grieving the loss of the man you married.. I still grieve, Michael was my knight in shining armor; intelligent, talented, funny, compassionate, and tender. I was his primary care giver until 4 years ago. We now have a wonderful care giver who helps out four days a week. Michael is completely wheelchair and bed bound. He experiences visual hallucinations. I felt sad when your husband said he sees the future with diapers. We've been there for long, long time. And like your husband said, you both realize that all of the hopes, dreams, and plans you once had are gone. It doesn't mean you can't make plans, they just have to be different. Your relationship will change, maybe from day to day. Just keep loving him. Reach out and get support. Please take care of you. Care giving can be exhausting. I'll be keeping both of you in my prayers. God bless you both ❤.
This video REALLY hit home! My husband had a traumatic brain injury in 2019 your husband says and does so much of the same as mine does. I’m going to have to find a different Neurologist because they don’t listen or talk to me, only him. We as wives see the changes that they are not aware of and Dr doesn’t see in such a short visit. Thank you for sharing!
Hope you have made the change of doctor. Definitely, You must do it ASAP if you haven't.
I haven’t had a family member with dementia to this date but I am a nurse and a wife and I also have empathy and I’m so saddened by what the two of you are experiencing. I can tell you are so grateful to have one another and Jason is in the best loving care possible. I’ll continue to watch your videos to learn more about your experience with this condition and I hope the viewings help you to supplement your income adequately when the time comes for you to be home full time caring for your wonderful husband ! Prayers ❤
I’m right here with you. Best to you and Jason
Oh my God I'm so sorry Jason and family . What a difficult brain disease to have . ❤ I truly hope you can find the best possible way to manage this . Jason, I hope you continue to receive patience , love , and understanding. Absolutely nothing to be embarrassed about AT all. .. my family member had a tbi, and this triggered her dimentia
I've been following you for ages and I've never seen this video . My heart breaks for you both. I've worked in Aged Care and I've always said it's the carers that suffer too. Take time for yourself too. I don't know what support services you have in the US , but my advice is don't feel bad asking for help . Lots of love to you both ❤❤❤
Beautiful lady keep laughing together singing together hugging and touching as you always have
New subscriber! As my husband and I get older I think about things like this sometimes. I hope you are able to stay home with your loving husband and cherish the days you have.
My heart breaks for you, Jason and your children. My husband had 4 grand mal seizures in 24 hours and it affected his memory and temperament. I had 2 concussions in 2 years and I know I have to be more focused in what I do, but I keep pushing myself to remember details and learning new things, in hopes they don’t lead to anything else.
Thank you two for sharing your story, you are both wonderful people. God bless you.
Leslie! Moving this content to a new channel is genius! Thank you for sharing your lives with all of us. I love y’all Large 🤍🤍
When I was a director in nursing I took a class that discussed ways to calm agitation or confusion. The one thing that stuck with me was a woman who had once been a caregiver was given a doll to “care for” that met with great approval and calmed her daily. It’s taking something from their past and using it to give them comfort.
My mother had Lewy Body Dementia & it was absolutely heart-wrenching. There was no dementia on my mother’s side so it was quite shocking & so disheartening. It’s a very hard journey, God Bless Both You & Jason. Grace, Love, and Patience go a long way. Hugs & Peace to You…
You’re doing wonderful job with educating us on this horrible disease. I took care of my mom for 10 years. Bless you and your husband, I’m subscribed now
Hello Leslie
I have a husband who has this I miss him so much. I cry all the time he is in a nursing home. Took care of him for 5 years. My prayers are with both of you. Watch you both because I feel we are family. Thank u so much. May God heal you both. Blessings
Thanks to you both for sharing your journey! I'm from your other channel and I suspect my husband may have Lewy Body also! Y'all are in my thoughts and prayers 🙏🙏 ❤️❤️
Thank you!!! My husband has dementia FTD was diagnosed at 59 ! Thank you for making this video. I completely understand and I’m also in tears. God bless you always.🙏💙😘🕊️
I have been watching your videos a couple months or so now and I already love you guys dearly and now added y’all to my daily prayer list. Jason is a hoot and I mean that with lots of love. He is so funny when he can be and you Leslie are a beautiful lady inside and out when I watch the videos sometimes I laugh very heard and then again I cry hard because of what y’all are going thru. Hug Jason for me and tell him to hug you for me God strengthen both of you and God is still a miracle worker. Hold on yo Gods unchanging hand. 💗💙🙏🙏
Oh sweet girl, you both are amazing. People do need to know more about this type of dementia and how it can affect younger people, and how different it is. Thank you for sharing your journey.
My prayers are with you both every day. I'm so glad you are doing this journey and sharing your story. I was my mother-in-law caretaker for many years, and its a hard journey. Now my sister-in-law is now going through dementia, and it has been 10 + years since we admitted she was having issues. We're at the point now she is calm and sleeping most of the time. So happy to be following along with your journey and learning more about it. God be with you both.
I just subscribed and look forward to going on this journey with you. Bless you and Jason.
You are both amazing. Leslie because of your loving and caring nature and Jason because of your sweet willingness to share this. I am on the verge of dementia. I forget everything. It is hard on my husband because I don't remember things he told me and hard for me because he thinks I dont listen to him. I will continue to pray for you. I hope you have a great trip to Europe and that you will share your adventures. Bless you both.
Bless you. Lost my husband to Early Onset Alzheimer’s. My heart is with you on your journey.
So brave of you both and so helpful to so many people. It's hard for the person dementia, but it is also hard to be a caregiver. Thank you both. ❤
I’m going through the same things! It’s very stressful! Praying for you guys!
Hi Leslie, I adore you and your husband so much. I know as hard as it is to share your story, you are helping others. Caring for and living with a loved one with dementia is so very hard. I took care of my Dad until it was unsafe for him to be left alone. He also lost his short term memory. I want to share something I learned is that it is okay to ask for help and also encouraged. I was his main caregiver and had to deal with him being mad at me and yelling when I had to take somethings away like managing his money that made it very hard. I worked with social workers at the time and they told me for my own mental health was to have someone else take care of that part and I would be just the loving daughter to hug him, tell him I love him, and hold his hand when he was scared. ❤️
❤Please keep sharing your journey. I take care of my 91 yrs le Mom with dementia and your words and explanations are deeply needed. They really make a’ difference to my journey. I feel I’m walking right by you. You are both genuinely beautiful .❤❤
Jaso, Thank you for your years of serving your Country. Your wife is so lovely and she sooo loves you!
Awesome!.try to keep sharing and trust God to help you. 🙏
oh, my heart goes out to you both, and to all those who have commented here about their own struggles. what a difficult thing life can be. yes, we all die, but we don't all lose ourselves before it happens. may you be given the courage and strength and grace your journey will require. and may you be held in and by Loving Arms.
New to your channel..I’m so sorry for what your all going through but so thankful you are sharing your part of Jason’s story from your perspective…wishing you and Jason all the best..💫💫💫
You are both in my prayers. I will be watching your videos to keep up with you and Jason.🙏🏻🙏🏻🙏🏻
This was so heart drenching. I'm not saying this to say don't do it again- is just life- i get it- but you are both so young, full of life and dreams and it hurts to see you two hurting. I pray for you both and pray that one day we all hear your miracle. You are both so sweet. You are also helping so many people going through the same path. Leslie- be strong. Care for yourself as well. God bless you both❤
I know this video was posted 2 months ago, but I just found you. Thank you for sharing your story, I will be one of your faithful followers & biggest prayer warriors. 🙏 My mom passed from Dementia 3 years ago & I was her caregiver, but I relate to Jason’s story more because my 33 year old son was a Corpsman in the Navy & suffered a traumatic brain injury. He is showing some scary symptoms & it scares me to death. He has & is being being treated for his TMI (traumatic brain injury), so we are hoping he’s just experiencing some side effects 🙏🤞. On another note, hearing about the throat growling immediately reminded me of my 8 yr old grandson, who is on the autism spectrum. He clears his throat & does the growling thing often & we think it is a sensory issue. Anyway, you both are so brave to share your story. I will be praying hard for the both of you & your family. ❤
You two are so sweet together. It is wonderful that Jason can be in a familiar setting. My heart goes out to you both. It’s definitely a journey. Plus, it’s so difficult when the dynamic changes in a relationship, when one partner has to assume the responsibilities that were covered by the disabled person before. Bless you for sharing your journeys and perspectives. Don’t be worried about what others think. They will have to deal with it in their own way, just as we all have to. It’s not shameful to be disabled.
I’ll be following you two. The only thing is now these videos don’t show the dates you actually filmed them. Maybe you can put it in your notes.
You so clearly took all the right words out of my mind and heart and your honesty is healing. Thank you for sharing. I can breathe. I'm so glad you are a nurse. I don't want to try and explain to anyone else or dream of another life. I have accepted that this is my life for now and I am honored to serve and care for my 93 year old Grandmother who was diagnosed with vascular dementia six years ago. I have been blessed to learn more about dementia and alzheimers than I ever thought I would need. Her medical team answers my questions and respectfully listens to me and encourages me to take care of my mental health especially. Having the gift of empathy can be overwhelming sometimes. Please take care of yourself, some time for yourself and accept respite help. It's hardest to help family and her friends to see and understand who she is now. Both of you are going to be okay. You are not alone. May God bless you both with all that you will need on this journey.❤
You are a remarkable person. He is beyond blessed to have you by his side! Sending you a big bear hug!!
I think it’s very helpful when people who are in situations like yours, do document and do share because it helps other people who might be in the same situation or might be heading in the same direction. It’s like a community and although I’m sure it is very difficult to share these things, it probably in the long run helps you too and being on TH-cam can probably give you some financial assistance as well. I see changes in my husband who will be 70 this year, but can’t pinpoint if something is really going on or it is normal aging.
You are absolutely incredible, both of you!!
I’ve seen the previous video with you and Jason together & grateful that you’re documenting this together.❤
I’m a nurse too. I’m actually a hospice nurse. Thank you for sharing your experience. It helps me take better care of my patients. Big hug.
Congrats on the new direction you've been directed to... I'm from your first channel; have been following you for YEARS, and I'm excited to get to walk my family's journey with you holding my hand... And heart. ❤
Christina, there are more of us holding your hand as well. Stay strong. ♥️
Here for it 💛
May God fully bless this & the two of you for His Glory. 💪🏻❤️
I love watching y’all so much that I even go back and watch y’all again. Praying for y’all always 💗💙🙏🙏
This video makes me sad and hopeful at the same time.
I know this will continue to progress but I also know your faith, respect for one another and your unquestionable love between you both will get you through this. Keep the faith and hope ❤
I am a nurse also. He is so cute and a sweetheart and i can see the love between you. Wondering if you should be leaving him alone at night. Can you get someone to sleep at your house when you work. Don’t stop working, you need an outlet of normalcy. Also, maybe he needs to have ENT check his throat again and see if he needs it dilated again. I am sure you know that Parkinson’s is part of Lewy Body. Maybe his swallowing muscles are affected. It sounds like he may have Restless Leg at night and there are meds to help with that. Praying for you.
My dad died from lewy body. Thank you for sharing and posting. It's really touching my heart. I'll be praying for you.
God bless you❤. I lost my husband 1 year ago this month. We went through our journey for 7 years. He was diagnosed in October 2015. He was 55 years old. It was a hard, hard time but you can do it. If you ever need to talk to anyone, message me. You will both be in my prayers 🙏🏻