Just wanted to fill you in on a few things going on in our lives right now. Obviously, after watching this, you will see that his doctor is in the loop, and his care is being very well managed. This week his neighbor friend hasn't been doing so well, so that has helped Jason to focus on him and he has stopped his fixation on running away for the moment. Otherwise, all safeguards are in place, and as a caregiver I feel I have been educated and equipped with what I need to do should the occasion arise. More than anything, we know the Lord is in control of the situation and we are so thankful for his goodness. Hope you all are having a wonderful week!
So MUCH LOVE & PRAYERS TO YOU & JASON. It makes me so sad in your talking with us and what you have shared w/o J in the car. 😢 bless you , you have so much love and emotion. I Love you Leslie,. From Asheville, N.C. Been enjoying your other channel so much. ❤
I was crying along with you Leslie. Yes, yes and yes to everything you said. You are grieving the loss of your partner but he’s still right in front of you and that’s such a hard thing. The lack of empathy is crushing. Especially listening to Jason say he doesn’t have any but showing no emotion about losing it. I admire your vulnerability because you are helping more people than you can imagine.
To you and Leslie: I do reach out and understand. And bless you for talking about YOUR feelings and observations. My mom was my LBD mom and friend and partner in her journey. Even then, just a few years ago, there were little honest conversations about changing experiences and perceptions. Not that we can change so Much, but the ability to be aware, to share, to keep our loved one honored and safe too. And to protect your heart and know that we sing your song, too. One can see how great Jason was before and how great he is still! You are brave for sharing. I am grateful. And, we can all care and think and care about all our relationships. Each moment is precious. Thank you, Leslie!
Retired RN, 16 years a widow; I was my husband’s caregiver for the last 7 years of his life. When you begin to feel more like a nurse & less like a wife, when your husband can no longer be a partner mentally or emotionally, it’s heartbreakingly hard. You must take care of yourself as scrupulously as you care for Jason, please.
Praying for you and Jason. Our son was diagnosed 5+ yrs ago with Lewy Body. He is now 61 & is going to see if he can get get that new test. I listen to both of your channels & love all you do. May GOD continue to BLESS you, Jason, & your wonderful family!!❤
Retired RN, worked geriatrics and psych. I've followed your journey. It is becoming clearer with every new posting that Jason is having struggles with the dementia dance. His spark is lessening and his wit is changing. Such a hard time for you and your family. Through this time please take special care of you! It is not being selfish. Your time with Jason is changing. Sending the best virtual hugs that I can. This is never easy.
Disagree with the "wit" thing. To me he still got it and this man is so intelligent and quick. He's sharper than most and considering his illness, I think that is pretty amazing. He's struggling, but to me it seems more of depressed over the situation, which is quite understandable. People with dementia often aren't really aware of the situation (their cognitive losses) Jason is, which makes it even tougher for him.
I get how difficult it is to only show video clips that are respectful to Jason, and then people misunderstand what's going on because they only see an upbeat, together person. I appreciate you being so honest and vulnerable about how it is "behind the scenes".
@@teijaflink2226 I agree. I'm not even sure she withholds things because Jason asks her to, I think she just doesn't feel comfortable showing him in a bad light.
I totally understand because I am my husband’s caregiver ( dementia 4 years now) it is so hard. We’ve been married 56 years. Sometimes my husband just walks off & I have to go get him. I miss my husband & feel totally alone. Prayers sweetheart
I'm so sorry. Both my mother and my mother in law had dementia. It is one thing to lose them and quite another to lose your husband. I loved my mother and mother in law dearly and it hurt to watch them drift into compleley different people. My husband and I were married almost 54 years. He died suddenty 5 1/2 years ago when a car under which he was working fell and crushed him to death. Like you, I have felt totally alone...still do sometimes. He didn't have dementia and I am so thankful for that. The aloneness and loss of the man you have loved so dearly and for so long crushes you and I know how that feels. I will pray for peace for you. Diane in NC
As I’ve mentioned before my father in law had dementia. I’ve come to understand some of the behaviors (pulling away, flatter affect, etc) he demonstrated. This channel is such an important service to others. I also appreciate when you share your faith and assurance of your future in Heaven. Someday it’ll be revealed to you all the lives you affected spiritually and generally through your lives and this channel. ❤️
Oh dear Leslie and Jason.How heartbreaking. Only the good Lord knows the why .I know the here and now ,it's really maddeningly difficult .Prayers always from Blue Springs ❤
That is so true. Your life and the way you lean on the Lord for wisdom and patience is a testimony of your relationship with Christ. What an encouragement you are to others in your situation. May God bless you & Jason as you live for Him. I'm praying for both of you, my sister in Christ. ❤✝️
I went through all of these feeling your going through with my now deceased husband. In fact I did a video on it here on Utube. It touches me deeply to watch you go through this and I prayed for you both. Sandra Brown life pushing60
I hear you loud and clear. My husband tells me I am calling him a liar when I try to explain about phone scams, or banking. When reality is not his reality, I want to keep him safe. Then he talks to others and everything is fine. I have told his family they need to visit while he is himself. They call to check on him, and he tells all is fine. I feel like I am in a twilight zone episode.
My father-in-law could act like all was fine. Someone Came to visit him and I warned them that he might not remember them. They visited and said that he knew them and They could not tell that there was a problem. After They left he asked who the heck they were. People just don’t Understand when they aren’t interacting on a regular basis. And their mood changes from moment to moment.
@@pattibarksdale9806 Exactly!! It makes it sound like you, the caregiver, is the one telling lies or making stuff up. Living it 24/7 is so different than the short visits or conversations .
It’s such a difficult journey you’re both on. The weight rests on the caregiver….you’re taking care of him, yourself, your family and your lives, while also grieving your soulmate that you no longer can count on or even sometimes recognize. Give yourself grace and take some time for yourself to recharge and breathe. Sending love and strength.
Anne, Thank you for saying "that you no longer can count on"! It's hard doing everything that has to be done in life for another person beside yourself. We did it for our children, but they eventually grew up and took care of themselves!
Leslie Feel free to get in your car and talk to us. Live-in caregiver that NEEDED this and laughed and cried with you. Also... If no one has told you today- You are doing an amazing job, through God's grace.
As you were talking I wanted to be able to reach through my phone and give you a big hug. I was my mom's caregiver and it was one of the hardest things I've ever done. There were many times that I would lay flat on the floor and call out to my Lord asking Him for endurance. Leslie you're doing a fine job in taking care of Jason and at the same time helping so many other people. Thank you for your heartfelt sharing and at the same time being respectful to Jason. Continue in your faith and calling on our Lord for His strength and His help.
My brother has just been officially diagnosed with Louie Body Dementia. Before his diagnosis I have been following your TH-cam channel for the last 5 months. Because of your videos I suspected that my brother had the same dementia disease that Jason has. You and Jason are so brave to show the truth of this disease. I am so grateful for your honest videos. Finding your TH-cam Channel was a Godsend to me and my family. Your honest and raw emotions reflect what we are going through and helps us realize that we are not alone in this journey. My heart and prayers goes out to you and your family.
I'm so sorry to hear of your loved ones LBD diagnosis. I'm wondering if you saw Leslie and Jason's video here earlier this year I believe where he had a new test, a skin biopsy I think they called it. It's a test that is newly used to verify LBD. Jason's test was negative for LBD. He still of course has dementia but it is no longer for certain LBD. I am 24/7 caregiver to my 76 year old husband with late stage 6 Alzheimers so I deeply empathize with anyone on this ever changing journey. XX ❤️
Jason explaining about his lack of empathy and how he isn't even aware of his lack of empathy, explains to me what I needed to know about my father. I can't guilt him into feeling empathy or being polite, I can't explain to him how it makes me feel when he is so cruel in his speech because he just doesn't have that "chip" anymore. Now I can stop feeling hurt about the way he treats me because now I know he is just simply unaware and not able to be any different any more. Thank you Jason for your explanation and thank you for sharing so freely so that those of us who are caregivers can get a better understanding of what it is like for you and our loved ones who also suffer from LBD. Thank you Leslie for making this channel available, without you behind it, we just wouldn't be learning in the way you both are helping us to learn. Big Hugs to both of you!
Your response to Leslie says it all for me, too. My husband has dementia and has no empathy for anyone or anything. He has lost the filter that he used to have for his thoughts and sometimes, the things he says are so hurtful and thoughtless. I finally realize I cannot explain to him about what he is doing and I cannot guilt him into thinking twice before expressing his thoughts. Knowing this and understanding this from Leslie's video and your comments has made a big difference in how I can handle my emotions from now on. May God bless all of us who have loved ones with dementia, in the past, present, or future. Thanks again!
Towards the end of his life my 41 year old husband would tell anyone who would listen that I was poisoning him. When a family member “questioned” me, I told them they were welcome to takeover my caregiver duties if they doubted my integrity. They quickly declined saying they knew it probably wasn’t true but just had to ask. Thank goodness we had understanding friends who helped me navigate that difficult time. Praying for both of you. ❤
41 that's so young, must have been incredibly hard and for friends too to understand what is actually going on as getting dementia when you're that young is very rare. Except for asking good they didn't start saying you must be doing something to him and specially considering all the hard work you must have done as a caregiver.
"Towards the end of his life my 41 year old husband would tell anyone who would listen that I was poisoning him." You probably did if you fed him sugar, starches, seed oils and foods high in plant toxins (like in oxalates or gluten)...
@@btudrusOh, please. We all know sugar, seed oils, etc. are very unhealthy. But bringing that up now as if that counts as "poison" to a dementia patient is hilariously ridiculous.
@@TurtleMyrtle12 "But bringing that up now as if that counts as "poison" to a dementia patient is hilariously ridiculous." Sugar is causing dementia. Stopping eating sugar will definitely help.
As a nurse myself, I don’t think you can beat Zoloft & Wellbutrin together. That’s what my husband, a dementia patient, takes & it’s evened out his moods wonderfully. My husband also lies, even though it’s unnecessary. He also talks to himself a lot. Keep the faith, Leslie. I do.❤
My husband does as well, but I dont consider them lies, I think of them as stories, and I honestly think they believe the stories. It stuns me some of the things he tells friends that we have been doing.
Well I cried through your entire beautifully authentic, open and honest initial car chat. I have a non verbal daughter with autism who of course still lives with us as well as parents who are struggling with the dementia aspect of life (my dad 84) . When you said Jason was 49 I bawled! TOO young for this! You are doing a great job of sharing truth yet guarding a bit of privacy too. You are a beautiful couple and I pray for your entire family! Thank you for keeping it real! xo
I’m amazed that Jason can analyze is current situation. My husband’s brain lives in another world and he does not realize there is anything wrong with himself. Leslie, I hear you so loud and clear and I appreciate you more than ever 💙
@tracyfield4238 My husband doesn't realize there is anything wrong with him either. He just thinks he knows what he wants to say in his mind, but can't get the words out. He has aphasia due to Alzheimers Dementia.
Thank you for this heart-rending glimpse into Jason's current life with dementia. My husband also had dementia. He would wander (I would call the police to pick him up in their patrol car). He would confabulate - since he had lost his "real" memories, his mind compensated by creating "fake" memories - which were very real to him. In the purest sense, what my husband believed and said weren't lies, as these were his realities in his diseased mind state and he truly believed these confabulations were happening. Praying for you and Jason.
My Mom did the same thing with creating answers. The only time I was concerned was when she was hospitalized and, despite knowing she had dementia, the doctors and nurses would ask her questions about her condition, her medical history, etc., and she would make up answers. If I was there I would immediately supply the correct information, but if I wasn't there, the medical professionals would rely on her answers. Yikes! I never thought of her behavior as telling lies, since there was absolutely no intent on her part to lie. Her connection to the facts had just been destroyed by the disease. I agree with your assessment ... they are just filling the gaps where the memory is gone. PS. You are doing an amazing job of caring for Jason. I know you must feel overwhelmed at times.
When my very brilliant and strong mother started fading away with dementia, it was such a loss to me because I felt I still needed her! This video today is the first one that really brought all that home to me and helped me understand. I have a huge amount of empathy for you as a wife and you are in my prayers.
Even in his dementia Jason is a smart guy. I can see how hard this is on him. I think it’s excruciating for him, especially the questioning. No one wants to speak publicly about their descent into mental illness. He is a brave guy.❤️
@@judyivie4181 Yeah, sometimes the comments seem accusatory or demeaning. I catch myself watching and thinking “Oooh I bet that hurt.” I think Leslie is fighting her own battles with what used to be and what is now. There has got to be some built up hostility, resentment and frustration that is really hard to deal with. I’m not sure how I would be in such difficult circumstances.
Dementia isn't a mental illness in the normal sense of "mental illness" where the personality is defective in a healthy brain. Dementia is the progressive death of more and more parts of the brain resulting in ever increasing intellectual incapacity and changes to the personality. You do not want to end life that way.
This is the hard part of the journey. When you are married for a long time and enjoyed your relationship the dying of the union is so deeply hurtful. It’s almost as if you have lost a piece of your heart. Stay strong . Know that you will have the peace that you have done all you can.
I’ve been on this journey with my mom for six years with Alzheimer’s. I’ve watched so many of the things that you’re experiencing and it’s frustrating because they’ve lost their cognitive ability, you want to keep them safe and we just can’t understand the changes to their brain. They can change from one day to the next, they become delusional and paranoid then get angry. In our support group we are told that anger is an outward expression of fear and frustration on the inside. Sending you lots of strength and prayers♥️🙏♥️. No one truly understands unless they live with the person on a daily basis. Even though I’m mom’s daughter and she’s my mom, I’m a caregiver 24/7 and it’s hard, it’s really hard. The lies, paranoia and anger do get to you, you’re human and you’re doing a great job, hang in there. It’s the hardest thing I’ve ever done and am 65!
I lost a 64 year old friend to FTD in July. It was a long difficult journey for her family. I can relate so much to this. Her memory was intact, but her brain lost all impulse control. I missed the woman I became friends with 42 years ago.Looking back I can see signs of it starting 6+ years ago. She only talked about it once with me when she was in a care facility after she lost the ability to walk. To hear Jason talk about what he thinks and feels is amazing! I am praying for you both. And thank you for sharing your journey for others going through this. By the way, I am also a nurse.
So many people end up angry and hurt because their loved one with dementia loses empathy or becomes combative or unpleasant. It’s terribly sad that they don’t realize their loved one’s brain is deteriorating and depending on what part of the brain is affected is what will determine certain personality shifts. You both are providing a gift of insight. 🙏🏻💜
Leslie you’re so special, beautiful, and show your Christian character;I don’t think I could do it! Your love for Jason definitely shows like your Christianity. I’m so proud of you and your accomplishments even if they are unpredictable. Be blessed this season 🙏
Sad is the best word to describe dementia/Alzheimers. It takes a village of care givers. My dad has Alzheimer’s and he was and still is the smartest person in the room! Feeling useful seems to be so important. God bless you Leslie and Jason.
Leslie that was tough listening to what you are handling right now. A rollercoaster of emotions and not knowing what to say or do. My heart is hurting for you and Jason. I will ask our Heavenly Father to give you strength to endure this dementia path you are both traveling on. Thank you for sharing your story and know you are helping others . Wishing blessed happiness.
My mom is going thru most of what you are explaining with my dad. She is his caregiver and she dropped into a depression. She was able to climb out of her depression. This disease is tough on everybody nobody knows what it is like until they have to deal and cope with it. I pray for everybody!
Chris and I sat here and watched your video. We totally get it. We are living it too. Chris has Lewy Body Dementia. (He's ok if I share it). Yep, the mood swings, the lack of empathy, and the emotional pulling away, and then swinging back to self aware. Chris has an extreme startle response now. It makes taking him places an exhausting adventure. I cleaned the windshield today, and he about jumped out of his skin! We sat here and we laughed, and we cried. We understand, and we are also saved. Please keep sharing. We need to know we aren't alone. ❤
When my husband had dementia at a young age like this I would say the most difficult part was the daily emotional rollercoaster we were all on. You never knew what was going to happen next. Took years off my life.
Leslie, you are walking this difficult journey with such grace, love and caring. You and Jason are providing an invaluable unserstanding of what it is truly like to face this illness. I have just finished my journey alongside the love of my life; he is now safe in the arms of Jesus. Jason was able to provide me with the answers to many questions I had, and that helped more than you can ever realize. Sending you much love, appreciation and prayers from Nova Scotia, Canada
My dad had this and during that time I was in therapy. My therapist told me it's like you're dealing with a toddler one minute and a teenager the next. My dad was always wanting to escape too. I was on the verge of tears at every moment of every day. I missed my dad but laughed at the absurdity of the things he did & said.
Dear Leslie, what a hard journey you and Jason are on. As his wife and caregiver, so much is resting on your shoulders. You are doing an amazing job! May God continue to give you strength, guidance and comfort each and every day. Love and prayers!!! ❤️🙏🏻🥰
I have dementia. I feel I have one foot in reality and one foot in dementia but I’m sure leaning more toward the dementia side of the tracks lately. My last day of driving was November 24. My last day of work is next Friday. I cried so hard when I saw Jason for the first time a few weeks ago. Because there was someone in the world that was like me. Thank you for that. I’m not alone now.
This was SUCH a great video!!! My husband died at age 30 suffering from dementia. That was 28 years ago and your video took me back to those struggles! You are so clear in the struggles you are facing! Thank you for your courage in sharing. You are very brave and I LOVE that you both know that Jesus is in control!!! You are s a shining example of the love of Christ!!!
I'm so right there with you! I have experienced all the same things. My feeling are so hurt, I feel like I've lost my best friend, my husband and my lover and I live with a stranger. He has no idea he is different now. He does things so not him. I'm crushed.
Thank you for this video. I needed to hear this today, as well as to read all the comments. My husband has Parkinson (21 years) and Dementia (8 years). It has been a long and painful journey. The personality changes have been the worst. I miss him more and more as he slips in and out of reality. He forgets he is ill. He just came home from a month of respite care. It was much needed in order for me to get rested up for the final phase of our journey. He is now in Hospice. God bless you & we will keep you and Jason in prayer. Hang in there!
Hi Leslie, My mom just passed away with dementia almost 4 months ago, she did the same thing, she would tell stories, and I knew that it was the dementia, but I just went with it because somewhere in her mind, that was her reality and I would just completely go along with it and let her tell her stories, it made her happy, which made me happy, and some of her stories were actually really cute and funny! In the beginning, I did correct her but that just upset her so it wasn’t worth it. I learned to just go with it, let her tell her stories, and I learned to enjoy them, and it brought so much peace to our journey. I realize, though that Jason is at a totally different level and situation than my mom was, my mom was 88 when she went to Heaven, she loves Jesus and now gets to have Christmas with Him! Y’all mentioned Enron in your video, My Mom worked for Enron for 16 years and I worked for them for 8 1/2. Thank y’all for posting , it’s helping a lot of us.🤗❤️ I’m also a Believer, so we are family! Merry Christmas to y’all🤗🙏🏻
My heart really broke for you today Leslie. You do such an amazing job in sharing & educating, while at the same time protecting Jason & his dignity. Not an easy line to walk.
When my mom was first diagnosed, she would blame others for her memory loss. If only they didn't stress her, distract her, annoy her... She found it embarrassing and disappointing. She was very often aware of her lapses, and some of them were huge. She lost whole days and significant events. Once, after a Christmas celebration that she hosted, she called me the next day to ask me if it had already happened, how it was, and if I thought she had enjoyed herself. It was very sad for both of us. She would wander out of her home and walk on the road aimlessly. Later in her dementia, when she was confused, she would get angry with people and situations. She was very 'fight or flight' in her responses. She would make threats against others when she (wrongly) perceived a threat. She would make things up to account for her irrational feelings. She would say, 'This is bullshit, and I am out of here!'. One day at my house she wanted to walk home to her care facility when I tried to clarify a misunderstanding. Despite my panicked attempts to soothe and dissuade her, he started to stomp out the door. Then she stopped on the front step and turned back inside to ask me for directions. It was too far to walk, and there was no way she would retain the directions, and I felt so bad for her. Loosing her independence was such a big deal. I calmly told her how to get there, and she decided to wait for a ride home later. You know that feeling when you feel like you have lost face? That's how she looked. I tried to assure her that we were thrilled that she was going to stay for lunch, and not let on that I knew that she couldn't manage on her own. Other times, I might say to her, 'Then let's go!' and maybe we'd only go out to the garden, or to the kitchen for tea, before she changed her mind again. She knew she didn't like her existence, but she couldn't articulate what was wrong or what she wanted. At a certain point there was almost no comforting or distracting her. Her quality of life declined to the point of heartbreak. In her case, meds she was offered caused side effects that diminished her even further. She became a zombie and lost her spirit, so we took her off them and put up with the challenges instead. As her caregiver, she would often be frustrated with me for trying to do things for her, or get her to do things for herself. Personal care and hygiene became huge triggers. She had no love for me then, no matter what I tried, and it was heartbreaking. Then she forgot who I was and called me, 'the girl'. Despite all of that, caring for her only made me love her more. She was so vulnerable, like a small child. Her suffering begged to be comforted. Sometimes she would look at me and smile and say thank you, and that was worth it all. It was traumatic, exhausting and stressful, yet it was my honour. I wouldn't change it. When she died I was sad for me, but so relieved for her. I wouldn't wish her back to that awful existence,. It took many, many months of grief before I was able to recall happy memories of my 'pre-dementia mom', find myself again and start to rebuild my life and take care of myself. In the mean time, my husband's diagnosis came just before my mom passed. We have had to have some very hard, frank, important conversations. Believe me, I know what you mean when you talk about loosing a life partner, and not being able to trust what he says. His judgement, filters, sensitivity, and empathy have gone off the deep end. There is zero emotional intimacy. He can't 'hear' what I say, he just hears what he thinks. In both cases, of caregiving, I have been accused of being 'controlling' in my efforts to look after the one who genuinely needs care. They may present well to outsiders, but those others have no idea how much support and care goes on behind the scenes. I've never tried it, but one person suggested having business-type cards to discretely hand out in social situations, to explain that your loved one has dementia, with a brief explanation. For anyone who doesn't already know the Eight A's of dementia, it can be helpful to understand some of the specific sub-diagnoses. Thanks for sharing. xo
Imagine being married to a man that was leader of the free world and experiencing these same trials. It reminds me that we all were higher functioning and capable before this. I feel like my brain is a third entity in our relationship in it isn’t on either of our sides. My brain feels like the enemy.
My heart to you. To Jason, of course. But to you. He’s not lying to you or others, as much as it feels like it is. He’s storytelling, because he doesn’t know how else to answer questions. He knows something is expected from him, and he’s really trying to provide it.
Leslie, those of us who have gone through what you are going through are aching in our hearts for you! It truly is an overwhelming roller coaster of emotions every single day! You can only do the best you can each day, with God's help, direction, and strength! Love and prayers for you and Jason!❤
My husband told me about a month ago, after having a short discussion about his situation, told me that he was moving to California! We live in Ohio. I immediately knew that he wanted to run away from his disease (Alzheimer's at 62, diagnosed at 59). I love watching your videos. It's good to know I'm not the only one going through this. I do all my crying at night after he goes to bed at 7pm.
So wonderful to hear from you. Thank You! Yes the lying is horrible. People ask me "why would she say that?" and they have no idea. People ask me "did you ask her why she says that?" (lies) and I think they have no clue that I say as little as possible when she lies because it will cause her to rage at me with new lies. If not for God I could not do this. The best thing for me is I have to cling to God every moment through the pain. I know you understand this too- by the Grace of God we are o.k. we are not going through what they are, it could have been me instead, but oh how incredibly hard is it for us to see them suffer. Praying,praying,praying for you, Jason and family. God Bless from a Great Gran in MN
The running away is also wanting to find something familiar. My husband keeps saying just shoot me. And it breaks my heart cause he is serious. Hang in there Leslie. 🙏
Thank you for helping us understand. You're living with a stranger you have loved for 32 years. It's so hard to WATCH you go through this, I can't imagine how hard it is for you both to go through it. 🥰 Sending lots and lots of bone crushing hugs.
Leslie it’s a journey like no other. Especially with younger onset Dementia. I really appreciate your insights and Jason’s as well. I work with people living with dementia and the rise in younger onset is staggering. I hope they do do a study on people like Jason who live with it. Bless you for your love and care of Jason. Bless you both for your faith. Cling tight to the Lord He’s got you in the palm of His hand.
My husband always struggled with self-centeredness and self-focus all his life, so it never came naturally to him to be considerate or sympathetic. Throughout the years he worked on those areas of his life. After his stroke (4+ years ago) and having Alzheimer's run in his family, it's like he went back to square 1 again. It's very difficult. TY guys for sharing your lives. It makes people know they are not alone.
Thank you for showing how you experience the true grief of losing Jason over and over as his abilities decline. This "long goodbye" is so very painful, yet the demands of being a caregiver can keep you from having the space to truly grieve for the loss of your soul mate and best friend along the way. I pray others can step in and help you have more quiet time to process your pain and grief. The loneliness you feel while Jason is still with you is very real but confusing, too. The love you two have shared is so beautiful. It's such a blessing to know the Lord is there to help you thru this. Thank you! I'm continuing to pray for you and Jason. 💕🙏
Leslie, caregivers are in need of care and understanding themselves. It a hard call, there is nothing harder then seeing your loved one in this new light, knowing you can’t change anything but persist in caring for and loving the person he now is. It doesn’t matter what others think or say in response to who he is now. You know the truth and that ok. Be strong and courageous - Joshua 1. Trust in Him who knows all things. What other option do you have, but to give it all to our Heavenly Father. God bless you Lesley. You are doing great!
My mother-in-law has dementia and is living in a memory care home. Now that we’ve been around the other residents, we’ve learned that their conversations with us might not always be true. It’s not that they’re lying, it’s their reality at that moment. Love and hugs to you and Jason. 💕
Thank you! I never thought of it like that. My husband was never a liar, but he has recently began saying untruths to me & when he speaks to others. What you said, never occurred to me. Wow… just wow!
It’s going to get more difficult and sad. It will get worse. I kept my husband with me at home until the end . You will cry a lot but know he isn’t himself. Just keep reminding him of your love through every episode, I found that helped us both… keep repeating your love for him. My heart aches for you both. You are so young. But your strength is your love for one another and leaning on God. Remember that he can’t reason like you do. You can’t correct him or explain things to him anymore. Hang on you are doing good so far. There will be a time you can’t put him in front of the camera. He won’t like it. Just say you love him over and over. Because later you’ll think you didn’t say it enough. Praying
I’m so sorry for your loss. I took care of my mom for 10 years with dementia, with the last about 5 were me taking care of a very angry stranger . It’s heart breaking especially when they show nice emotions to a stranger but with me just angry. I miss my mom ( she passed in 2018) but it took along time to forgive my self for my anger for what happened. My mom had so many stories( “lies”) it was amazing the details shecameupwith. It’s so hard saying good bye everyday. Please remember to take care of yourself ❤
You are doing an amazing job with all that is now your life. A life you couldn’t ever have imagined. Your strength is so inspiring. I know you struggle, but remember you’re doing your best and you’re doing a really great job of taking care of Jason and yourself. 💜
I think I am starting to see some of these behaviors in my husband and I feel so helpless. You have helped me with alot of these things and I thank you.
Thank you so much. Jason’s explanation for empathy has given me a huge piece of what I missed taking care of my dad. Also an Air Force career guy. He got so mean and angry . As an only child, I had no one to help me. He got so he despised me. ex. He wanted to leave cooked chicken out all night, not put it in the fridge…was adamant it would still be fine to eat. As caretaker, I have to say, sometimes I felt like running away too. Yes on the lying. He told his sister and family friends I was stealing his money, etc. it was without a doubt, the most heartbreaking time in my life. Eventually he began the sundowner symptom of wanting to wander, especially at night. It got dangerous. I was lucky, all that money, he told folks I stole, was in the bank. I was able to find a lock down facility to keep him safe, as I could no longer guarantee he would not wander off into the cornfields as many have. I was not near any VA facility, so I don’t know if there was any help there. I do remember there was a caretaker stipend that I could have applied for. Even if there was day care a few days a week, it would be some relief. Jason is so intelligent. It’s easy to see that. I think that makes this whole thing so much more heart breaking. I wish I realized my dad was losing things like empathy because I might not have felt so angry and sad at the things he said to me, and rejection. Hugs judy
I get it and you are allowed to cry, complain, grieve and be angry to see all the changes your husband is going through. Thank you for sharing the not so beautiful side of dementia but know that you are such a strong faithful woman. Sending you prayers and much needed love your way ❤
Oh, my dear, I know what you are going through. My husband has PCA with early onset dementia. You are able to articulate the situation from his aspect and yours, something I struggle with at times. It is heart breaking at times, yet I try to make each day the best possible for him. As his caregiver, I feel so invisible. Just hearing you, makes me feel that I am not alone in this journey. Praying for God to give us strength and wisdom.
Leslie, it breaks my heart when you're sad but you force that smile and giggle. I know everyone processes emotions differently, but you don't have to put that smile on. You "showtime" too.
My hubby used to lie, and steal things at the grocery. He has regressed so much that he doesn’t have presence of mind to do either. Not sure which is worse. My heart goes out to you Leslie.
Leslie, you are a fantastic wife and caregiver. One of my saddest days was when I tried to hug my mother who had dementia and she was afraid of me. It broke my heart. You are in my prayers.
Leslie and Jason, your openness and honesty are helping so many people in your position who are facing the same circumstance. It is hard to hear my 92-year-old mother-in-law cry because she doesn't understand why her daddy can't tuck her in at night. It was so difficult to watch my father, a retired Army colonel, not know how to blow out his birthday candles. It was heartbreaking to lose two friends in their 60's who had early-onset dementia. So many families are in this situation and your willingness to share is helping them. God bless you and your family.
I am so sorry to see you go through this. We are in the last stage of this horrible disease. I understand you so much. I take it day by day. My husband doesn't know me and is nothing like he was before. I understand the staging. It is tough to watch and everyone saying he is doing fine.
Wow it really helps me caring for my husband. The old relationship is gone, no hugs, caresses, or thank you, I’m alone on an island. We took him off the clonazepam but we’re going back on it. The anxiety is way high without it. You are doing way better than I feel I am. I agree totally Leslie. Also he is EXTREMELY reclusive. Refuses to eat inside restaurants, hates company etc. It’s very lonely for the care giver.
My husband was a neurologist. A very brilliant man. He suffered many forms of illness. Most neurological. You struck a memory when you mentioned lying. My husband could fool the best of the best.But, that is dangerous. I encourage you to continue sharing your journey. It’s very difficult to lose a husband or family member who is still living.
It's a fine balance between showing everything for knowledge of us all and protecting your loved ones privacy. What a twilight zone place to be ( like the other viewer said. ) Been there, it's very difficult. They just FILL the gaps, it's not malicious ( but it can cause difficulties. ) What a crazy dance! God knew how strong you both are to help all of us.
Thank you for explaining this. Makes sense. I know how you feel having a husband who acts one way in public and different at home. My husband has many health issues too. I’m glad you have support.
Thank you for sharing this very hard and emotional journey with the world. My grandmother passed from Alzheimers and she had it for 12 years; it also runs in our family so I obviously have fear of it with my Mom and myself. I can't imagine what you two are going through as spouses. We just had a lady with dementia at church Sunday night wanting to make sure of her salvation before her disease got too bad and so she was baptized into Christ for the forgiveness of her sins (Acts 2:38, Acts 22:16, Mark 16:16, Rom 6:3-4). Praise God. I am glad the two of you have a zeal for God. ❤️ I will be praying for you. 🙏🏻🙏🏻
We are walking a similar path at the moment and this video touched me deeply. To know we are not alone gives comfort. My husband is so negative and has no empathy, yet he is stressing that he hasn't bought me a Christmas present or made the Christmas puddings. He is in Respite to give me a break. We had a date day yesterday. I knew after 4 hours that we have a lot of heartache ahead, especially when he comes home. It is so lonely. I have lost my best friend. Hugs to you and thank you for sharing your journey with us. ❤
Leslie, this came at a perfect time for me to hear. I've been very depressed for a few reasons but your video put things in perspective. I can't even imagine losing a spouse like Jason in this way. He is so adorable, eloquent, funny,..I can see how you fell in love with him. And to deal with this is just heartbreaking and so stressful. The fact that you accept this as "just your deal in life" is so admirable and unselfish. You are a true angel.
Leslie it’s been a minute since I’ve watched your ch. I worked with Alzheimer’s & dementia , early onset, lewybody, all of it for a long time….the difference here is I got to go home after a work day . Your work continues 24/7. There is no easy way and please remember yr TH-cam family love you and Jason. You are an amazing woman. Talented, loving, beautiful and I’m so grateful you have the Lord in your life. Praying for you and your family. xoxo
Thank you so much Leslie, your description of the lying and loss of your life partner is so spot on and really helps those of us supportive spouses feel validated and supported. Thank you so so much.
I am dealing with my dad who is much older who has the same issues. It is hard for me because I am a Physician and its so hard for me to stop being a Physician and be a daughter. I really appreciate your channel. You are doing a wonderful job and I admire you so very much.
Leslie, I can hear the absolute pain in your voice that Jason isn’t the same as he was and you miss him! I’m so sorry and I feel so bad. It doesn’t seem fair but God knows and His plans are always perfect. I love you both and pray for y’all every day.💜💜👏
Dear Leslie, even though we have never met, I care for you and Jason so much. As a Christian and RN Case Manager who works with patients and their families struggling with dementia, I am filled with both appreciation for sharing your journey and a broken heart for the battle you never asked for. I am praying for both of you and your family. 🙏
Thank you so much for being so honest with how emotional this journey is! Prayers for wisdom and strength and comfort for this valley! A Christian friend told me yesterday, “even the valleys are higher ground”. Be encouraged that He knows and you are being lifted up in prayer.
I've had a really tough week with my mom who has vascular dementia. There is just so much that people don't see and can't imagine. There really is no way for anyone to know what's going on unless they are living it. I'm living it and I know my reality so I can imagine your reality Leslie. I am here to acknowledge you and send you good vibes and strength. One day at a time friend.
Watching you crying through your laughter broke my heart. I was then crying with you. You are so strong and such a support to Jason but it must be so hard on you to be going through this. I’m so glad you have this outlet and do many people who love you.
I completely understand. I’m so protective yet frustrated. I have said THAT HAS NEVER HAPPENED MANY TIMES. I cry, he gets angry, thinks I’m crazy, etc. this takes its toll. I understand. Im praying for you. God bless your strength. I am not living at this time one on one like you are. You are amazing, I’m just praying you get some kind of rest.🙏🏼❤️
My stepfather had LB- at one point before his passing, he too had the literal obsession with going, going, gone.... It was so difficult for my mother who was still the caregiver at the time. His neurologist told my mother privately that he would try to run away and I remember mom saying she wasn't fully understanding why this would be if everything was ok- but it's as if they are compelled to go with no purpose or plan just to forge ahead. Your description of Jason is the exact that my family saw. Mother coped with this for it's duration until he began to decline in other ways that eventually required a skilled nursing center - but that doesn't mean Jason will experience that immediately - as you know each case is individual. My prayers are with Jason because I'm sure there is such irritation in not feeling in control of your own self and prayers for your strength, patience and personal health. I fully understand the position you are in- and wouldn't expect you to do anything differently, but be very aware that your physical reserves can run out as a caregiver without you hardly being aware - simply because the needs are so demanding. God bless you all from Missouri.
Dear sweet Leslie, I truly hear your emotions of this terrible disease on the caregiver. I went through all the stages with my father that you mentioned and as his only daughter, it was so hard to watch him slip away. Then my husband’s mother developed dementia. It’s a constant job like you said: to keep them safe. I was emotional listening to you as you spoke about the roller coaster effects dementia. Prayers are being sent for you and Jason, for Gods choices blessing on the Christmas season. Thanks! for sharing. 💕🙏🥰
Dear Leslie, I started following you about 18 mos ago as I could relate because my mom had had LBD. At the same time my husband and I got COVID but it caused severe confusion his dementia level to rage. The doctor said it's Alzheimer's. Low dose med was stopped for side effects of dizziness, low BP. So now, he is getting worse. Not sleeping, wanting to "go home", unable to help me with much. My heart breaks for yours. We too are Believers and so thankful for being able to get minute by minute strength from our Lord. Praying for you and Jason and your family. Sending hugs and love!!💞
Right..my Great Grammy passed away from Alzheimer's on April 12,2005 at age 87..and now nearly 19 years later, my Grammy Carlyle (her nearly 83 year old daughter) also has Alzheimer's..I HATE this disease..my family and I are having to make this difficult choice to put her into assisted living effective April 2024..breaks my heart..
My best friend just passed with dementia. She was 80 and she did have other health problems. 1 1/2 year's ago she started showing signs of shutting down and not talking. Our relationship was one sided for the last 8 months. It broke my heart. In the flesh we'd like to fix it all but I realized I couldn't fix it. That broke my heart. She's with the Lord and she's all better.
First my Grandmother had dementia/Alzheimer’s , beginning in her mid 70’s, she passed at 93. Then my Mother got dementia/Alzheimer’s, at age 74, she passed at 77. Then my Dad got dementia/Alzheimer’s, at age 78, he passed at 86. It is so hard to lose them twice, I miss them all so much. Unfortunately the hardest part is yet to come for Leslie. We need to keep her in our prayers.
Leslie listening to these videos makes me feel like I am in a caretaker group, just to know I'm not alone in this. My husband has Parkinson's (9 years now) and has just entered hospice. My dear friend recently commented that I've had 'the long goodbye'. So poignent and true. I've lost him little by little over 9 long heartbreaking years. Thank you for your honesty and compassion. It inspires!
Leslie, my heart breaks for you as you share your feelings and emotions. I can’t imagine the roller coaster ride this is for you. My heart also hurts for Jason because it’s obvious he doesn’t have the emotional empathy. I pray for you both. 🙏🏻
I'm so grateful that you do these videos. My hubby dx age 56, he's 63 now. He lies all the time about allsorts. He also used to 'run away' and we never knew where he was or when he would come back. Now he 'runs away' to bed because he's older and has less energy. (At least I know where he is). Still working on the meds. We are living the same nightmare❤😢
You are showing love by all your measures , and completely understand your situation my daughter and I use to help my mom take care of my Dad with Dementia/Alzheimer’s he use to lie and tell people we were starving him, said my Mom had a boyfriend and she did not. So emphatic to your plight. Dad use to runaway to the point we had to have a monitor put on his ankle. But at the end he didn’t talk anymore so we learned to read his body language. My dad has passed away but enjoy watching you and Jason love you both
Just wanted to fill you in on a few things going on in our lives right now. Obviously, after watching this, you will see that his doctor is in the loop, and his care is being very well managed. This week his neighbor friend hasn't been doing so well, so that has helped Jason to focus on him and he has stopped his fixation on running away for the moment. Otherwise, all safeguards are in place, and as a caregiver I feel I have been educated and equipped with what I need to do should the occasion arise. More than anything, we know the Lord is in control of the situation and we are so thankful for his goodness. Hope you all are having a wonderful week!
Has he got a gps bracelet? That can come in very handy.
@@lineprestkvrn9014 all safeguards are in place.
So MUCH LOVE & PRAYERS TO YOU & JASON. It makes me so sad in your talking with us and what you have shared w/o J in the car. 😢 bless you , you have so much love and emotion. I Love you Leslie,.
From Asheville, N.C.
Been enjoying your other channel so much. ❤
So many prayers for you guys
🙏🙏🙏
I was crying along with you Leslie. Yes, yes and yes to everything you said. You are grieving the loss of your partner but he’s still right in front of you and that’s such a hard thing. The lack of empathy is crushing. Especially listening to Jason say he doesn’t have any but showing no emotion about losing it. I admire your vulnerability because you are helping more people than you can imagine.
To you and Leslie: I do reach out and understand. And bless you for talking about YOUR feelings and observations. My mom was my LBD mom and friend and partner in her journey. Even then, just a few years ago, there were little honest conversations about changing experiences and perceptions. Not that we can change so
Much, but the ability to be aware, to share, to keep our loved one honored and safe too. And to protect your heart and know that we sing your song, too.
One can see how great Jason was before and how great he is still! You are brave for sharing. I am grateful.
And, we can all care and think and care about all our relationships. Each moment is precious. Thank you, Leslie!
That is why they call dementia the long goodbye. You are taking it like a trooper and really helping in educating people.
Leslie, my heart goes out to you in a big way. May God keep you in the palm of His hand ❤️🙏
I have said the same thing numerous times
Yes, I was too. ❤❤
Retired RN, 16 years a widow; I was my husband’s caregiver for the last 7 years of his life. When you begin to feel more like a nurse & less like a wife, when your husband can no longer be a partner mentally or emotionally, it’s heartbreakingly hard. You must take care of yourself as scrupulously as you care for Jason, please.
Yes, take care of yourself. That is the only way you can also keep care of them.
Yes
Oh I feel this x going through this right now
Praying for you and Jason. Our son was diagnosed 5+ yrs ago with Lewy Body. He is now 61 & is going to see if he can get get that new test. I listen to both of your channels & love all you do. May GOD continue to BLESS you, Jason, & your wonderful family!!❤
Our son also follows Jason's info and sh ares it on His Caring Bridge
Retired RN, worked geriatrics and psych. I've followed your journey. It is becoming clearer with every new posting that Jason is having struggles with the dementia dance. His spark is lessening and his wit is changing. Such a hard time for you and your family. Through this time please take special care of you! It is not being selfish. Your time with Jason is changing. Sending the best virtual hugs that I can. This is never easy.
Disagree with the "wit" thing. To me he still got it and this man is so intelligent and quick. He's sharper than most and considering his illness, I think that is pretty amazing. He's struggling, but to me it seems more of depressed over the situation, which is quite understandable. People with dementia often aren't really aware of the situation (their cognitive losses) Jason is, which makes it even tougher for him.
I get how difficult it is to only show video clips that are respectful to Jason, and then people misunderstand what's going on because they only see an upbeat, together person. I appreciate you being so honest and vulnerable about how it is "behind the scenes".
It must be so hard because she can only show what Jason can consent to so people think he is doing better than he actually does.
@@teijaflink2226 I agree. I'm not even sure she withholds things because Jason asks her to, I think she just doesn't feel comfortable showing him in a bad light.
I totally understand because I am my husband’s caregiver ( dementia 4 years now) it is so hard. We’ve been married 56 years. Sometimes my husband just walks off & I have to go get him. I miss my husband & feel totally alone. Prayers sweetheart
Hugs.
Prayers to you
I'm so sorry. Both my mother and my mother in law had dementia. It is one thing to lose them and quite another to lose your husband. I loved my mother and mother in law dearly and it hurt to watch them drift into compleley different people. My husband and I were married almost 54 years. He died suddenty 5 1/2 years ago when a car under which he was working fell and crushed him to death. Like you, I have felt totally alone...still do sometimes. He didn't have dementia and I am so thankful for that. The aloneness and loss of the man you have loved so dearly and for so long crushes you and I know how that feels. I will pray for peace for you. Diane in NC
So right now he is our driver because he is very upset if I insist on driving .He has always traveled on the road with his job
I don’t know how this will end but. Since were in our 80s and I do not enjoy driving so I just trust the Lord thru this time in our journey
As I’ve mentioned before my father in law had dementia. I’ve come to understand some of the behaviors (pulling away, flatter affect, etc) he demonstrated. This channel is such an important service to others. I also appreciate when you share your faith and assurance of your future in Heaven. Someday it’ll be revealed to you all the lives you affected spiritually and generally through your lives and this channel. ❤️
Oh dear Leslie and Jason.How heartbreaking. Only the good Lord knows the why .I know the here and now ,it's really maddeningly difficult .Prayers always from Blue Springs ❤
Amen. How sweet, Debra 💖
That is so true. Your life and the way you lean on the Lord for wisdom and patience is a testimony of your relationship with Christ. What an encouragement you are to others in your situation. May God bless you & Jason as you live for Him. I'm praying for both of you, my sister in Christ. ❤✝️
I went through all of these feeling your going through with my now deceased husband. In fact I did a video on it here on Utube. It touches me deeply to watch you go through this and I prayed for you both. Sandra Brown life pushing60
Yes & Amen 🙏 I totally agree & believe this comment to be on target.❤ ❤
I hear you loud and clear. My husband tells me I am calling him a liar when I try to explain about phone scams, or banking. When reality is not his reality, I want to keep him safe. Then he talks to others and everything is fine. I have told his family they need to visit while he is himself. They call to check on him, and he tells all is fine. I feel like I am in a twilight zone episode.
My father-in-law could act like all was fine. Someone
Came to visit him and I warned them that he might not remember them. They visited and said that he knew them and
They could not tell that there was a problem. After
They left he asked who the heck they were. People just don’t
Understand when they aren’t interacting on a regular basis. And their
mood changes from moment to moment.
@@pattibarksdale9806 Exactly!! It makes it sound like you, the caregiver, is the one telling lies or making stuff up. Living it 24/7 is so different than the short visits or conversations .
It’s such a difficult journey you’re both on. The weight rests on the caregiver….you’re taking care of him, yourself, your family and your lives, while also grieving your soulmate that you no longer can count on or even sometimes recognize. Give yourself grace and take some time for yourself to recharge and breathe. Sending love and strength.
Anne, Thank you for saying "that you no longer can count on"! It's hard doing everything that has to be done in life for another person beside yourself. We did it for our children, but they eventually grew up and took care of themselves!
Leslie
Feel free to get in your car and talk to us.
Live-in caregiver that NEEDED this and laughed and cried with you.
Also...
If no one has told you today-
You are doing an amazing job, through God's grace.
Leslie you are amazing. Hugs.
I So Agree, We are here for you Leslie!!
As you were talking I wanted to be able to reach through my phone and give you a big hug. I was my mom's caregiver and it was one of the hardest things I've ever done. There were many times that I would lay flat on the floor and call out to my Lord asking Him for endurance. Leslie you're doing a fine job in taking care of Jason and at the same time helping so many other people. Thank you for your heartfelt sharing and at the same time being respectful to Jason. Continue in your faith and calling on our Lord for His strength and His help.
My brother has just been officially diagnosed with Louie Body Dementia. Before his diagnosis I have been following your TH-cam channel for the last 5 months. Because of your videos I suspected that my brother had the same dementia disease that Jason has. You and Jason are so brave to show the truth of this disease. I am so grateful for your honest videos. Finding your TH-cam Channel was a Godsend to me and my family. Your honest and raw emotions reflect what we are going through and helps us realize that we are not alone in this journey. My heart and prayers goes out to you and your family.
I'm so sorry to hear of your loved ones LBD diagnosis. I'm wondering if you saw Leslie and Jason's video here earlier this year I believe where he had a new test, a skin biopsy I think they called it. It's a test that is newly used to verify LBD. Jason's test was negative for LBD. He still of course has dementia but it is no longer for certain LBD. I am 24/7 caregiver to my 76 year old husband with late stage 6 Alzheimers so I deeply empathize with anyone on this ever changing journey. XX ❤️
The same for me!💞
Lewy Body Dementia
Jason explaining about his lack of empathy and how he isn't even aware of his lack of empathy, explains to me what I needed to know about my father. I can't guilt him into feeling empathy or being polite, I can't explain to him how it makes me feel when he is so cruel in his speech because he just doesn't have that "chip" anymore. Now I can stop feeling hurt about the way he treats me because now I know he is just simply unaware and not able to be any different any more. Thank you Jason for your explanation and thank you for sharing so freely so that those of us who are caregivers can get a better understanding of what it is like for you and our loved ones who also suffer from LBD. Thank you Leslie for making this channel available, without you behind it, we just wouldn't be learning in the way you both are helping us to learn. Big Hugs to both of you!
Your response to Leslie says it all for me, too. My husband has dementia and has no empathy for anyone or anything. He has lost the filter that he used to have for his thoughts and sometimes, the things he says are so hurtful and thoughtless. I finally realize I cannot explain to him about what he is doing and I cannot guilt him into thinking twice before expressing his thoughts. Knowing this and understanding this from Leslie's video and your comments has made a big difference in how I can handle my emotions from now on. May God bless all of us who have loved ones with dementia, in the past, present, or future. Thanks again!
This is such an important piece to bring awareness for the caregiver!!
I love Jason. I think his wife is alot for him.
Well put! 💜
@@judyivie4181Maybe so, but you’d be a lot too in this situation.
Towards the end of his life my 41 year old husband would tell anyone who would listen that I was poisoning him. When a family member “questioned” me, I told them they were welcome to takeover my caregiver duties if they doubted my integrity. They quickly declined saying they knew it probably wasn’t true but just had to ask. Thank goodness we had understanding friends who helped me navigate that difficult time. Praying for both of you. ❤
Oh yeah, the moment you offer the responsibility to them they can’t get away fast enough!
41 that's so young, must have been incredibly hard and for friends too to understand what is actually going on as getting dementia when you're that young is very rare. Except for asking good they didn't start saying you must be doing something to him and specially considering all the hard work you must have done as a caregiver.
"Towards the end of his life my 41 year old husband would tell anyone who would listen that I was poisoning him."
You probably did if you fed him sugar, starches, seed oils and foods high in plant toxins (like in oxalates or gluten)...
@@btudrusOh, please. We all know sugar, seed oils, etc. are very unhealthy. But bringing that up now as if that counts as "poison" to a dementia patient is hilariously ridiculous.
@@TurtleMyrtle12 "But bringing that up now as if that counts as "poison" to a dementia patient is hilariously ridiculous."
Sugar is causing dementia. Stopping eating sugar will definitely help.
As a nurse myself, I don’t think you can beat Zoloft & Wellbutrin together. That’s what my husband, a dementia patient, takes & it’s evened out his moods wonderfully. My husband also lies, even though it’s unnecessary. He also talks to himself a lot. Keep the faith, Leslie. I do.❤
My husband does as well, but I dont consider them lies, I think of them as stories, and I honestly think they believe the stories. It stuns me some of the things he tells friends that we have been doing.
If that combo doesn’t work, Effexor (venlafaxine) worked wonders for my mom!
Well I cried through your entire beautifully authentic, open and honest initial car chat. I have a non verbal daughter with autism who of course still lives with us as well as parents who are struggling with the dementia aspect of life (my dad 84) . When you said Jason was 49 I bawled! TOO young for this! You are doing a great job of sharing truth yet guarding a bit of privacy too. You are a beautiful couple and I pray for your entire family! Thank you for keeping it real! xo
Hugs.
I’m amazed that Jason can analyze is current situation. My husband’s brain lives in another world and he does not realize there is anything wrong with himself. Leslie, I hear you so loud and clear and I appreciate you more than ever 💙
@tracyfield4238 My husband doesn't realize there is anything wrong with him either. He just thinks he knows what he wants to say in his mind, but can't get the words out. He has aphasia due to Alzheimers Dementia.
Such a surreal experience 😢
@@creativemair 🙏💙🙏
Thank you for this heart-rending glimpse into Jason's current life with dementia. My husband also had dementia. He would wander (I would call the police to pick him up in their patrol car). He would confabulate - since he had lost his "real" memories, his mind compensated by creating "fake" memories - which were very real to him. In the purest sense, what my husband believed and said weren't lies, as these were his realities in his diseased mind state and he truly believed these confabulations were happening. Praying for you and Jason.
My Mom did the same thing with creating answers. The only time I was concerned was when she was hospitalized and, despite knowing she had dementia, the doctors and nurses would ask her questions about her condition, her medical history, etc., and she would make up answers. If I was there I would immediately supply the correct information, but if I wasn't there, the medical professionals would rely on her answers. Yikes! I never thought of her behavior as telling lies, since there was absolutely no intent on her part to lie. Her connection to the facts had just been destroyed by the disease. I agree with your assessment ... they are just filling the gaps where the memory is gone. PS. You are doing an amazing job of caring for Jason. I know you must feel overwhelmed at times.
So hard, hugs
When my very brilliant and strong mother started fading away with dementia, it was such a loss to me because I felt I still needed her! This video today is the first one that really brought all that home to me and helped me understand. I have a huge amount of empathy for you as a wife and you are in my prayers.
Even in his dementia Jason is a smart guy. I can see how hard this is on him. I think it’s excruciating for him, especially the questioning. No one wants to speak publicly about their descent into mental illness. He is a brave guy.❤️
I think shes trying to insult him. Jason is not deserving how shes portraying him.
@@judyivie4181 Yeah, sometimes the comments seem accusatory or demeaning. I catch myself watching and thinking “Oooh I bet that hurt.” I think Leslie is fighting her own battles with what used to be and what is now. There has got to be some built up hostility, resentment and frustration that is really hard to deal with. I’m not sure how I would be in such difficult circumstances.
@@judyivie4181 Hopefully you haven't or never will have to go thru it . Have a little empathy.
Dementia isn't a mental illness in the normal sense of "mental illness" where the personality is defective in a healthy brain. Dementia is the progressive death of more and more parts of the brain resulting in ever increasing intellectual incapacity and changes to the personality. You do not want to end life that way.
Don’t judge till you walk in her shoes. She’s doing what she can to keep going.
This is the hard part of the journey. When you are married for a long time and enjoyed your relationship the dying of the union is so deeply hurtful. It’s almost as if you have lost a piece of your heart. Stay strong . Know that you will have the peace that you have done all you can.
Even with his dementia, Jason’s intelligence and humor shine through! You are doing a wonderful job, Leslie. You are helping so many people.
I’ve been on this journey with my mom for six years with Alzheimer’s. I’ve watched so many of the things that you’re experiencing and it’s frustrating because they’ve lost their cognitive ability, you want to keep them safe and we just can’t understand the changes to their brain. They can change from one day to the next, they become delusional and paranoid then get angry. In our support group we are told that anger is an outward expression of fear and frustration on the inside. Sending you lots of strength and prayers♥️🙏♥️. No one truly understands unless they live with the person on a daily basis. Even though I’m mom’s daughter and she’s my mom, I’m a caregiver 24/7 and it’s hard, it’s really hard. The lies, paranoia and anger do get to you, you’re human and you’re doing a great job, hang in there. It’s the hardest thing I’ve ever done and am 65!
🙏
I lost a 64 year old friend to FTD in July. It was a long difficult journey for her family. I can relate so much to this. Her memory was intact, but her brain lost all impulse control. I missed the woman I became friends with 42 years ago.Looking back I can see signs of it starting 6+ years ago. She only talked about it once with me when she was in a care facility after she lost the ability to walk. To hear Jason talk about what he thinks and feels is amazing! I am praying for you both. And thank you for sharing your journey for others going through this. By the way, I am also a nurse.
So many people end up angry and hurt because their loved one with dementia loses empathy or becomes combative or unpleasant. It’s terribly sad that they don’t realize their loved one’s brain is deteriorating and depending on what part of the brain is affected is what will determine certain personality shifts. You both are providing a gift of insight. 🙏🏻💜
Leslie you’re so special, beautiful, and show your Christian character;I don’t think I could do it! Your love for Jason definitely shows like your Christianity. I’m so proud of you and your accomplishments even if they are unpredictable. Be blessed this season 🙏
Thank you Jason for telling us your side of things. I know it’s hard for you too!
Sad is the best word to describe dementia/Alzheimers. It takes a village of care givers. My dad has Alzheimer’s and he was and still is the smartest person in the room! Feeling useful seems to be so important. God bless you Leslie and Jason.
Leslie that was tough listening to what you are handling right now. A rollercoaster of emotions and not knowing what to say or do. My heart is hurting for you and Jason.
I will ask our Heavenly Father to give you strength to endure this dementia path you are both traveling on. Thank you for sharing your story and know you are helping others . Wishing
blessed happiness.
My mom is going thru most of what you are explaining with my dad. She is his caregiver and she dropped into a depression. She was able to climb out of her depression. This disease is tough on everybody nobody knows what it is like until they have to deal and cope with it. I pray for everybody!
Chris and I sat here and watched your video.
We totally get it.
We are living it too.
Chris has Lewy Body Dementia. (He's ok if I share it).
Yep, the mood swings, the lack of empathy, and the emotional pulling away, and then swinging back to self aware. Chris has an extreme startle response now. It makes taking him places an exhausting adventure. I cleaned the windshield today, and he about jumped out of his skin!
We sat here and we laughed, and we cried.
We understand, and we are also saved.
Please keep sharing. We need to know we aren't alone. ❤
When my husband had dementia at a young age like this I would say the most difficult part was the daily emotional rollercoaster we were all on. You never knew what was going to happen next. Took years off my life.
As a Christian, and a Retired RN my heart is breaking for you.I will put you both on my prayer list
Leslie, you are walking this difficult journey with such grace, love and caring.
You and Jason are providing an invaluable unserstanding of what it is truly like to face this illness.
I have just finished my journey alongside the love of my life; he is now safe in the arms of Jesus.
Jason was able to provide me with the answers to many questions I had, and that helped more than you can ever realize.
Sending you much love, appreciation and prayers from Nova Scotia, Canada
My dad had this and during that time I was in therapy. My therapist told me it's like you're dealing with a toddler one minute and a teenager the next. My dad was always wanting to escape too. I was on the verge of tears at every moment of every day. I missed my dad but laughed at the absurdity of the things he did & said.
Dear Leslie, what a hard journey you and Jason are on. As his wife and caregiver, so much is resting on your shoulders. You are doing an amazing job! May God continue to give you strength, guidance and comfort each and every day. Love and prayers!!! ❤️🙏🏻🥰
I have dementia. I feel I have one foot in reality and one foot in dementia but I’m sure leaning more toward the dementia side of the tracks lately. My last day of driving was November 24. My last day of work is next Friday. I cried so hard when I saw Jason for the first time a few weeks ago. Because there was someone in the world that was like me. Thank you for that. I’m not alone now.
This was SUCH a great video!!! My husband died at age 30 suffering from dementia. That was 28 years ago and your video took me back to those struggles! You are so clear in the struggles you are facing! Thank you for your courage in sharing. You are very brave and I LOVE that you both know that Jesus is in control!!! You are s a shining example of the love of Christ!!!
@RuckFussiahis dementia was brought on as a complication of a long term illness. He was so incredibly loved and I miss him every day. 😊
It all happened to us. I was no longer his best friend. He walked away. It hurt so bad. I’m sorry for you Leslie. Sending love and big hugs.
I'm so right there with you! I have experienced all the same things. My feeling are so hurt, I feel like I've lost my best friend, my husband and my lover and I live with a stranger. He has no idea he is different now. He does things so not him. I'm crushed.
Thank you for this video. I needed to hear this today, as well as to read all the comments. My husband has Parkinson (21 years) and Dementia (8 years). It has been a long and painful journey. The personality changes have been the worst. I miss him more and more as he slips in and out of reality. He forgets he is ill. He just came home from a month of respite care. It was much needed in order for me to get rested up for the final phase of our journey. He is now in Hospice. God bless you & we will keep you and Jason in prayer. Hang in there!
Try ketogenic/carnivore diet. He should absolutely eat no sugar!
I send prayers your way!! ❤
Thank you for your prayers. He passed one week ago and is enjoying the wonders of his Eternal Home with Christ.
Hi Leslie, My mom just passed away with dementia almost 4 months ago, she did the same thing, she would tell stories, and I knew that it was the dementia, but I just went with it because somewhere in her mind, that was her reality and I would just completely go along with it and let her tell her stories, it made her happy, which made me happy, and some of her stories were actually really cute and funny! In the beginning, I did correct her but that just upset her so it wasn’t worth it. I learned to just go with it, let her tell her stories, and I learned to enjoy them, and it brought so much peace to our journey. I realize, though that Jason is at a totally different level and situation than my mom was, my mom was 88 when she went to Heaven, she loves Jesus and now gets to have Christmas with Him! Y’all mentioned Enron in your video, My Mom worked for Enron for 16 years and I worked for them for 8 1/2. Thank y’all for posting , it’s helping a lot of us.🤗❤️ I’m also a Believer, so we are family! Merry Christmas to y’all🤗🙏🏻
My heart really broke for you today Leslie. You do such an amazing job in sharing & educating, while at the same time protecting Jason & his dignity. Not an easy line to walk.
My heart breaks for you as well as Jason. It is very difficult! Hugs
God bless…..
When my mom was first diagnosed, she would blame others for her memory loss. If only they didn't stress her, distract her, annoy her... She found it embarrassing and disappointing. She was very often aware of her lapses, and some of them were huge. She lost whole days and significant events. Once, after a Christmas celebration that she hosted, she called me the next day to ask me if it had already happened, how it was, and if I thought she had enjoyed herself. It was very sad for both of us. She would wander out of her home and walk on the road aimlessly.
Later in her dementia, when she was confused, she would get angry with people and situations. She was very 'fight or flight' in her responses. She would make threats against others when she (wrongly) perceived a threat. She would make things up to account for her irrational feelings. She would say, 'This is bullshit, and I am out of here!'. One day at my house she wanted to walk home to her care facility when I tried to clarify a misunderstanding. Despite my panicked attempts to soothe and dissuade her, he started to stomp out the door. Then she stopped on the front step and turned back inside to ask me for directions. It was too far to walk, and there was no way she would retain the directions, and I felt so bad for her. Loosing her independence was such a big deal. I calmly told her how to get there, and she decided to wait for a ride home later. You know that feeling when you feel like you have lost face? That's how she looked. I tried to assure her that we were thrilled that she was going to stay for lunch, and not let on that I knew that she couldn't manage on her own. Other times, I might say to her, 'Then let's go!' and maybe we'd only go out to the garden, or to the kitchen for tea, before she changed her mind again.
She knew she didn't like her existence, but she couldn't articulate what was wrong or what she wanted. At a certain point there was almost no comforting or distracting her. Her quality of life declined to the point of heartbreak. In her case, meds she was offered caused side effects that diminished her even further. She became a zombie and lost her spirit, so we took her off them and put up with the challenges instead.
As her caregiver, she would often be frustrated with me for trying to do things for her, or get her to do things for herself. Personal care and hygiene became huge triggers. She had no love for me then, no matter what I tried, and it was heartbreaking. Then she forgot who I was and called me, 'the girl'.
Despite all of that, caring for her only made me love her more. She was so vulnerable, like a small child. Her suffering begged to be comforted. Sometimes she would look at me and smile and say thank you, and that was worth it all. It was traumatic, exhausting and stressful, yet it was my honour. I wouldn't change it. When she died I was sad for me, but so relieved for her. I wouldn't wish her back to that awful existence,. It took many, many months of grief before I was able to recall happy memories of my 'pre-dementia mom', find myself again and start to rebuild my life and take care of myself.
In the mean time, my husband's diagnosis came just before my mom passed. We have had to have some very hard, frank, important conversations. Believe me, I know what you mean when you talk about loosing a life partner, and not being able to trust what he says. His judgement, filters, sensitivity, and empathy have gone off the deep end. There is zero emotional intimacy. He can't 'hear' what I say, he just hears what he thinks.
In both cases, of caregiving, I have been accused of being 'controlling' in my efforts to look after the one who genuinely needs care. They may present well to outsiders, but those others have no idea how much support and care goes on behind the scenes. I've never tried it, but one person suggested having business-type cards to discretely hand out in social situations, to explain that your loved one has dementia, with a brief explanation.
For anyone who doesn't already know the Eight A's of dementia, it can be helpful to understand some of the specific sub-diagnoses.
Thanks for sharing. xo
God bless you on your hard journey. 🙏🏼
Thank you, I appreciate your kindness. 💜 @@rhondadavis1483
I’m also dealing with a sick spouse and I often think about a quote from Nancy Reagan, “It’s a slow goodbye.”. So true for me and my husband.
Imagine being married to a man that was leader of the free world and experiencing these same trials. It reminds me that we all were higher functioning and capable before this. I feel like my brain is a third entity in our relationship in it isn’t on either of our sides. My brain feels like the enemy.
My heart to you. To Jason, of course. But to you.
He’s not lying to you or others, as much as it feels like it is.
He’s storytelling, because he doesn’t know how else to answer questions. He knows something is expected from him, and he’s really trying to provide it.
Leslie, those of us who have gone through what you are going through are aching in our hearts for you! It truly is an overwhelming roller coaster of emotions every single day! You can only do the best you can each day, with God's help, direction, and strength! Love and prayers for you and Jason!❤
My husband told me about a month ago, after having a short discussion about his situation, told me that he was moving to California! We live in Ohio. I immediately knew that he wanted to run away from his disease (Alzheimer's at 62, diagnosed at 59). I love watching your videos. It's good to know I'm not the only one going through this. I do all my crying at night after he goes to bed at 7pm.
Leslie, I so appreciate your honest chat with us. We are with you and Jason before our Lord. 🙏🏻
So wonderful to hear from you. Thank You! Yes the lying is horrible. People ask me "why would she say that?" and they have no idea. People ask me "did you ask her why she says that?" (lies) and I think they have no clue that I say as little as possible when she lies because it will cause her to rage at me with new lies. If not for God I could not do this. The best thing for me is I have to cling to God every moment through the pain. I know you understand this too- by the Grace of God we are o.k. we are not going through what they are, it could have been me instead, but oh how incredibly hard is it for us to see them suffer. Praying,praying,praying for you, Jason and family. God Bless from a Great Gran in MN
The running away is also wanting to find something familiar. My husband keeps saying just shoot me. And it breaks my heart cause he is serious. Hang in there Leslie. 🙏
Thank you for helping us understand. You're living with a stranger you have loved for 32 years. It's so hard to WATCH you go through this, I can't imagine how hard it is for you both to go through it. 🥰 Sending lots and lots of bone crushing hugs.
Leslie it’s a journey like no other. Especially with younger onset Dementia. I really appreciate your insights and Jason’s as well. I work with people living with dementia and the rise in younger onset is staggering. I hope they do do a study on people like Jason who live with it. Bless you for your love and care of Jason. Bless you both for your faith. Cling tight to the Lord He’s got you in the palm of His hand.
My husband always struggled with self-centeredness and self-focus all his life, so it never came naturally to him to be considerate or sympathetic. Throughout the years he worked on those areas of his life. After his stroke (4+ years ago) and having Alzheimer's run in his family, it's like he went back to square 1 again. It's very difficult. TY guys for sharing your lives. It makes people know they are not alone.
Thank you for showing how you experience the true grief of losing Jason over and over as his abilities decline. This "long goodbye" is so very painful, yet the demands of being a caregiver can keep you from having the space to truly grieve for the loss of your soul mate and best friend along the way. I pray others can step in and help you have more quiet time to process your pain and grief. The loneliness you feel while Jason is still with you is very real but confusing, too. The love you two have shared is so beautiful. It's such a blessing to know the Lord is there to help you thru this.
Thank you! I'm continuing to pray for you and Jason. 💕🙏
Leslie, caregivers are in need of care and understanding themselves. It a hard call, there is nothing harder then seeing your loved one in this new light, knowing you can’t change anything but persist in caring for and loving the person he now is. It doesn’t matter what others think or say in response to who he is now. You know the truth and that ok. Be strong and courageous - Joshua 1. Trust in Him who knows all things. What other option do you have, but to give it all to our Heavenly Father. God bless you Lesley. You are doing great!
My mother-in-law has dementia and is living in a memory care home. Now that we’ve been around the other residents, we’ve learned that their conversations with us might not always be true. It’s not that they’re lying, it’s their reality at that moment. Love and hugs to you and Jason. 💕
Thank you! I never thought of it like that. My husband was never a liar, but he has recently began saying untruths to me & when he speaks to others. What you said, never occurred to me. Wow… just wow!
@@Widow2B happy I could help you with that. God bless you and your husband.
That sounds so hard Leslie. Even if you don’t feel it, you are doing a great job. In sickness and in health ❤. Continuing to pray for you and Jason.
It’s going to get more difficult and sad. It will get worse. I kept my husband with me at home until the end . You will cry a lot but know he isn’t himself. Just keep reminding him of your love through every episode, I found that helped us both… keep repeating your love for him. My heart aches for you both. You are so young. But your strength is your love for one another and leaning on God. Remember that he can’t reason like you do. You can’t correct him or explain things to him anymore. Hang on you are doing good so far. There will be a time you can’t put him in front of the camera. He won’t like it. Just say you love him over and over. Because later you’ll think you didn’t say it enough. Praying
You have the hardest job on the planet. I’m sorry you have to deal with Jason’s denior. Stay strong and get someone to give you a break.
You are the sweetest most precious and so great with Jason… admired by all of us!!
Yes, I am sure many of us did. ❤❤❤❤
I’m so sorry for your loss. I took care of my mom for 10 years with dementia, with the last about 5 were me taking care of a very angry stranger . It’s heart breaking especially when they show nice emotions to a stranger but with me just angry. I miss my mom ( she passed in 2018) but it took along time to forgive my self for my anger for what happened. My mom had so many stories( “lies”) it was amazing the details shecameupwith. It’s so hard saying good bye everyday. Please remember to take care of yourself ❤
You are doing an amazing job with all that is now your life. A life you couldn’t ever have imagined. Your strength is so inspiring. I know you struggle, but remember you’re doing your best and you’re doing a really great job of taking care of Jason and yourself. 💜
I think I am starting to see some of these behaviors in my husband and I feel so helpless. You have helped me with alot of these things and I thank you.
Thank you so much. Jason’s explanation for empathy has given me a huge piece of what I missed taking care of my dad. Also an Air Force career guy. He got so mean and angry . As an only child, I had no one to help me. He got so he despised me. ex. He wanted to leave cooked chicken out all night, not put it in the fridge…was adamant it would still be fine to eat. As caretaker, I have to say, sometimes I felt like running away too. Yes on the lying. He told his sister and family friends I was stealing his money, etc. it was without a doubt, the most heartbreaking time in my life. Eventually he began the sundowner symptom of wanting to wander, especially at night. It got dangerous. I was lucky, all that money, he told folks I stole, was in the bank. I was able to find a lock down facility to keep him safe, as I could no longer guarantee he would not wander off into the cornfields as many have. I was not near any VA facility, so I don’t know if there was any help there. I do remember there was a caretaker stipend that I could have applied for. Even if there was day care a few days a week, it would be some relief. Jason is so intelligent. It’s easy to see that. I think that makes this whole thing so much more heart breaking. I wish I realized my dad was losing things like empathy because I might not have felt so angry and sad at the things he said to me, and rejection. Hugs judy
I get it and you are allowed to cry, complain, grieve and be angry to see all the changes your husband is going through. Thank you for sharing the not so beautiful side of dementia but know that you are such a strong faithful woman. Sending you prayers and much needed love your way ❤
Oh, my dear, I know what you are going through. My husband has PCA with early onset dementia. You are able to articulate the situation from his aspect and yours, something I struggle with at times. It is heart breaking at times, yet I try to make each day the best possible for him. As his caregiver, I feel so invisible. Just hearing you, makes me feel that I am not alone in this journey. Praying for God to give us strength and wisdom.
Leslie, it breaks my heart when you're sad but you force that smile and giggle. I know everyone processes emotions differently, but you don't have to put that smile on. You "showtime" too.
My hubby used to lie, and steal things at the grocery. He has regressed so much that he doesn’t have presence of mind to do either. Not sure which is worse. My heart goes out to you Leslie.
Leslie, you are a fantastic wife and caregiver. One of my saddest days was when I tried to hug my mother who had dementia and she was afraid of me. It broke my heart. You are in my prayers.
Leslie and Jason, your openness and honesty are helping so many people in your position who are facing the same circumstance. It is hard to hear my 92-year-old mother-in-law cry because she doesn't understand why her daddy can't tuck her in at night. It was so difficult to watch my father, a retired Army colonel, not know how to blow out his birthday candles. It was heartbreaking to lose two friends in their 60's who had early-onset dementia. So many families are in this situation and your willingness to share is helping them. God bless you and your family.
I am so sorry to see you go through this. We are in the last stage of this horrible disease. I understand you so much. I take it day by day. My husband doesn't know me and is nothing like he was before. I understand the staging. It is tough to watch and everyone saying he is doing fine.
Wow it really helps me caring for my husband. The old relationship is gone, no hugs, caresses, or thank you, I’m alone on an island. We took him off the clonazepam but we’re going back on it. The anxiety is way high without it. You are doing way better than I feel I am. I agree totally Leslie. Also he is EXTREMELY reclusive. Refuses to eat inside restaurants, hates company etc. It’s very lonely for the care giver.
Alone on an island is the perfect description of this stage for the caregiver. You nailed it .
Me too, and I do live on an Island! So sorry we’re going through this! Always praying for everyone. God bless you. Your not alone in Spirit ❤
My husband was a neurologist. A very brilliant man. He suffered many forms of illness. Most neurological. You struck a memory when you mentioned lying. My husband could fool the best of the best.But, that is dangerous. I encourage you to continue sharing your journey. It’s very difficult to lose a husband or family member who is still living.
It's a fine balance between showing everything for knowledge of us all and protecting your loved ones privacy. What a twilight zone place to be ( like the other viewer said. ) Been there, it's very difficult. They just FILL the gaps, it's not malicious ( but it can cause difficulties. ) What a crazy dance! God knew how strong you both are to help all of us.
Thank you for explaining this. Makes sense. I know how you feel having a husband who acts one way in public and different at home. My husband has many health issues too. I’m glad you have support.
So tragic as he’s a brilliant man. But you need to show the good, the bad, the ugly to truly educate ppl and give concepts. Love his honesty.
Thank you for sharing this very hard and emotional journey with the world. My grandmother passed from Alzheimers and she had it for 12 years; it also runs in our family so I obviously have fear of it with my Mom and myself. I can't imagine what you two are going through as spouses. We just had a lady with dementia at church Sunday night wanting to make sure of her salvation before her disease got too bad and so she was baptized into Christ for the forgiveness of her sins (Acts 2:38, Acts 22:16, Mark 16:16, Rom 6:3-4). Praise God. I am glad the two of you have a zeal for God. ❤️ I will be praying for you. 🙏🏻🙏🏻
We are walking a similar path at the moment and this video touched me deeply. To know we are not alone gives comfort. My husband is so negative and has no empathy, yet he is stressing that he hasn't bought me a Christmas present or made the Christmas puddings. He is in Respite to give me a break. We had a date day yesterday. I knew after 4 hours that we have a lot of heartache ahead, especially when he comes home. It is so lonely. I have lost my best friend. Hugs to you and thank you for sharing your journey with us. ❤
You are so right no one knows what goes on at home. Hang in there.
I respect you so much for not showing how bad it can be so Jason can still have dignity.
Leslie, this came at a perfect time for me to hear. I've been very depressed for a few reasons but your video put things in perspective. I can't even imagine losing a spouse like Jason in this way. He is so adorable, eloquent, funny,..I can see how you fell in love with him. And to deal with this is just heartbreaking and so stressful. The fact that you accept this as "just your deal in life" is so admirable and unselfish. You are a true angel.
Leslie it’s been a minute since I’ve watched your ch.
I worked with Alzheimer’s & dementia , early onset, lewybody, all of it for a long time….the difference here is I got to go home after a work day . Your work continues 24/7. There is no easy way and please remember yr TH-cam family love you and Jason. You are an amazing woman. Talented, loving, beautiful and I’m so grateful you have the Lord in your life. Praying for you and your family. xoxo
Thank you so much Leslie, your description of the lying and loss of your life partner is so spot on and really helps those of us supportive spouses feel validated and supported. Thank you so so much.
I am dealing with my dad who is much older who has the same issues. It is hard for me because I am a Physician and its so hard for me to stop being a Physician and be a daughter. I really appreciate your channel. You are doing a wonderful job and I admire you so very much.
Leslie,
I can hear the absolute pain in your voice that Jason isn’t the same as he was and you miss him! I’m so sorry and I feel so bad. It doesn’t seem fair but God knows and His plans are always perfect. I love you both and pray for y’all every day.💜💜👏
Dear Leslie, even though we have never met, I care for you and Jason so much. As a Christian and RN Case Manager who works with patients and their families struggling with dementia, I am filled with both appreciation for sharing your journey and a broken heart for the battle you never asked for. I am praying for both of you and your family. 🙏
Thank you so much for being so honest with how emotional this journey is! Prayers for wisdom and strength and comfort for this valley! A Christian friend told me yesterday, “even the valleys are higher ground”. Be encouraged that He knows and you are being lifted up in prayer.
I've had a really tough week with my mom who has vascular dementia. There is just so much that people don't see and can't imagine. There really is no way for anyone to know what's going on unless they are living it. I'm living it and I know my reality so I can imagine your reality Leslie. I am here to acknowledge you and send you good vibes and strength. One day at a time friend.
Watching you crying through your laughter broke my heart. I was then crying with you. You are so strong and such a support to Jason but it must be so hard on you to be going through this. I’m so glad you have this outlet and do many people who love you.
I completely understand. I’m so protective yet frustrated. I have said THAT HAS NEVER HAPPENED MANY TIMES. I cry, he gets angry, thinks I’m crazy, etc. this takes its toll. I understand. Im praying for you. God bless your strength. I am not living at this time one on one like you are. You are amazing, I’m just praying you get some kind of rest.🙏🏼❤️
My stepfather had LB- at one point before his passing, he too had the literal obsession with going, going, gone.... It was so difficult for my mother who was still the caregiver at the time. His neurologist told my mother privately that he would try to run away and I remember mom saying she wasn't fully understanding why this would be if everything was ok- but it's as if they are compelled to go with no purpose or plan just to forge ahead. Your description of Jason is the exact that my family saw. Mother coped with this for it's duration until he began to decline in other ways that eventually required a skilled nursing center - but that doesn't mean Jason will experience that immediately - as you know each case is individual. My prayers are with Jason because I'm sure there is such irritation in not feeling in control of your own self and prayers for your strength, patience and personal health. I fully understand the position you are in- and wouldn't expect you to do anything differently, but be very aware that your physical reserves can run out as a caregiver without you hardly being aware - simply because the needs are so demanding. God bless you all from Missouri.
Dear sweet Leslie, I truly hear your emotions of this terrible disease on the caregiver. I went through all the stages with my father that you mentioned and as his only daughter, it was so hard to watch him slip away. Then my husband’s mother developed dementia. It’s a constant job like you said: to keep them safe. I was emotional listening to you as you spoke about the roller coaster effects dementia. Prayers are being sent for you and Jason, for Gods choices blessing on the Christmas season. Thanks! for sharing. 💕🙏🥰
Dear Leslie, I started following you about 18 mos ago as I could relate because my mom had had LBD. At the same time my husband and I got COVID but it caused severe confusion his dementia level to rage. The doctor said it's Alzheimer's. Low dose med was stopped for side effects of dizziness, low BP. So now, he is getting worse. Not sleeping, wanting to "go home", unable to help me with much. My heart breaks for yours. We too are Believers and so thankful for being able to get minute by minute strength from our Lord. Praying for you and Jason and your family. Sending hugs and love!!💞
Someone once called dementia «the longest goodbye». A patient called it dieing slowly, piece by piece, losing Yourself in the process. ❤️🇳🇴
Sooo sad! ) :
Right..my Great Grammy passed away from Alzheimer's on April 12,2005 at age 87..and now nearly 19 years later, my Grammy Carlyle (her nearly 83 year old daughter) also has Alzheimer's..I HATE this disease..my family and I are having to make this difficult choice to put her into assisted living effective April 2024..breaks my heart..
My best friend just passed with dementia. She was 80 and she did have other health problems. 1 1/2 year's ago she started showing signs of shutting down and not talking. Our relationship was one sided for the last 8 months. It broke my heart. In the flesh we'd like to fix it all but I realized I couldn't fix it. That broke my heart. She's with the Lord and she's all better.
First my Grandmother had dementia/Alzheimer’s , beginning in her mid 70’s, she passed at 93. Then my Mother got dementia/Alzheimer’s, at age 74, she passed at 77. Then my Dad got dementia/Alzheimer’s, at age 78, he passed at 86. It is so hard to lose them twice, I miss them all so much. Unfortunately the hardest part is yet to come for Leslie. We need to keep her in our prayers.
@@joytoyouandme4593 agreed..
Leslie listening to these videos makes me feel like I am in a caretaker group, just to know I'm not alone in this. My husband has Parkinson's (9 years now) and has just entered hospice. My dear friend recently commented that I've had 'the long goodbye'. So poignent and true. I've lost him little by little over 9 long heartbreaking years. Thank you for your honesty and compassion. It inspires!
Leslie, my heart breaks for you as you share your feelings and emotions. I can’t imagine the roller coaster ride this is for you. My heart also hurts for Jason because it’s obvious he doesn’t have the emotional empathy. I pray for you both. 🙏🏻
I'm so grateful that you do these videos. My hubby dx age 56, he's 63 now. He lies all the time about allsorts. He also used to 'run away' and we never knew where he was or when he would come back. Now he 'runs away' to bed because he's older and has less energy. (At least I know where he is). Still working on the meds. We are living the same nightmare❤😢
You are showing love by all your measures , and completely understand your situation my daughter and I use to help my mom take care of my Dad with Dementia/Alzheimer’s he use to lie and tell people we were starving him, said my Mom had a boyfriend and she did not. So emphatic to your plight. Dad use to runaway to the point we had to have a monitor put on his ankle. But at the end he didn’t talk anymore so we learned to read his body language. My dad has passed away but enjoy watching you and Jason love you both
My dad had dementia, and I saw what my mother went through!😢 I can't imagine as a wife so young what you're going through 🙏❤️🙏