Thank you for these videos. This month we found out my husband has lewy body dementia. For the past year the doctor's my husband sees at the VA knew something was wrong but, could not figure it out until this month because of your video. I watched an episode last month and I said, " wow, that is our life, this is exactly what we are going through" which prompted me to make another appointment and talk with his doctor as to what I thought it was. Had I not seen this video we would still not know and still feel lost and alone. Please do not stop doing these videos, patients and caregivers need to know we are not alone in this struggle and others out there like my husband and I because of your videos got the diagnosis we so desperately needed....Thank you
I am SO glad that our video helped you! You just made filming these videos so worth it! If we can help even one person, then it's worth it! Sending you big hugs as you continue this journey. I hope with the new diagnoses, you can get the care you will so desperately need!! 💖💖💖
Exactly, you have a great marriage and you both help people so much. I don’t have this, I have porphyria and I feel for my hubby. I like when my hubby tells me, I am starting to go or fade or be grumpy gus and He respects me enough to tell me and be Real. Not treat me like baby. It’s late so I hope I am being clear.
My husband has Parkinsons with probable Lewy body..we use humor to also survive parkinsons time...he freezes and he also in in a wheelchair from a failed back surgery...we made a promise to each other to no matter how sick either of us got to always fight to find our way back to each other..many doctors and nurses think I'm smothering or they treat him like a idiot. Humor always has helped us from falling into the great abyss along with reminders cues and redirtects... I dont care if there is a expert said cover yourself in crisco and whistle would help him I'd do it..no two Parkinsons patients are the same...and we have to do what's best for our own paths...
There are some truly mean people on youtube. Block them. The last thing u need is extra stress. They are called keyboard warriors. AKA: cowards in person but brave behind a computer screen
Bless you both. Shame on anyone making negative comments. You speak so eloquently about the circumstances of your illness. I can feel the love you have for each other. My heart goes out to you both. 💝
I agree !!! Keep being yourself and let the negative people be who they choose to be. They choose to be negative; they probably aren't happy with their own life and choose to find anything to make themselves feel better by speaking negative to or about others !! They have their own problems, but will never choose to believe it, even if Dr Phil was to tell them. Be yourselves !! I love it and most people do !
Jason what you are doing talking to us is so jolly kind and generous. Bless your cotton socks. Jason what do you want for Christmas, I would like a flying fire breathing dragon, however I do not like Santas chances. Australia 8.25pm
My husband doesn’t have dementia but has pretty complicated diabetes and then I had a cardiac arrest and ha no breath or pulse for 12 minutes min. Brought back with chest compressions/and CPR by my husband and then I went and had a stroke 6 months later and am in a wheelchair . I have BP issues, a bad valve in my heart, brain tumour, and epilepsy, which was secondary(the tumour I mean. It’s quarter size near my optic nerve so risk of blindness&my eyesights pretty bad to begin with. Blind in right eye.)(I sound like the doggie who nobody wants, sitting on the side of the road with a ribbon around my neck saying free to any home lol) I have a very particular sense of humour, it’s not for everyone! Lol.). after an emergent hysterectomy.and have lasting effects. I’m turning 48, my hubby is 58. It’s been a very hard last 12 yrs. do you have support of any kind for either of you? You and your hubby will be on my mind and in my prayers as long as I write it down now 😊🙏🏻💜 take care hon. It’s got to be hard on you. Especially, if you have a close relationship and have been together through thick and thin. I think those of us in that category do plough through immensely rough patches but our deep connection, grounds us snd brings us closer even though it doesn’t feel like it sometimes you feel very alone in the stress and grief that comes wishing for life before diagnosis/disability/etc. That’s been our experience.
Just subbed to your channel. I’m in Canada, but if you have or anything to have an IG(Instagram) it’s nice and at least you can chat like testing there through dm’s(direct messenging) so if you ever feel like you want or need a new buddy even long distance just message me there and I’ll approve you. There’s been some creepy ppls so I private’s my photos etc I’m not sure why but I found their messages really bothersome so . Not everyone has that happen but ya never know? So I hope you’re coping as great as you can and that your husband is holding his own at the moment and things aren’t too stressful, but either way, I hope it’s alright if I add u to my prayer book and pray for both of you and you’ll be in my heart and mind. Bless your heart Heather.💜
I am 60 years old and I think if I lived to 100 I would never understand people who are horrible to others. My mum was the kindest person and always said “if you can’t say anything nice just don’t say anything”.
Leslie is so respectful. It’s obvious she wants Jason to have his voice. I hope the positive words uplift you and elevate you over the harsh words. It’s so great you are so brave to share your story.
My father passed away at 85 years old, having lewy body dementia. He described the feeling you call "fussy" as "cobwebs in my head". He had all the neurological issues that come along with lewy body. However, he never lost his recogition of my mother and me. He was communicative until the last 12 days of his life. We had some really good times and laughs while living with him and his misconceptions and hallucinations. One night he and I spent hours laughing and "delivering papers in the neighborhood on his motorcycle." In actuality i was pushing him in his wheelchair...all over the house. I cherish that memory. Everything wasn't lighthearted but we survived. Daddy was a career fire fighter and retired as firechief. We fought a few fires in the wee morning hours. 😉 It was a heart break but it was also a time of little and big blessings. You have my support and prayers.
From my research, there is nothing available like what you two are selflessly offering. My brother was recently diagnosed with same diagnosis as Jason. I am learning so much from you both. Thank you very much
I’m am a licensed social worker that specializes in dementia. I love your videos and they help me connect better with my patients and families. Thank you for being so vulnerable.
Such a wonderful husband defending his loving wife. His years of military leadership coming through ;) .. strong work, both of you- love and encouragement and prayers (misc my dad had ALS- not the same, but chronic and heartbreaking). P.s. hope you've been able to see that grand baby boy :)
I watched my husband decline for 20 years to a quadriplegic due to severe MS. My advise is...1).do you. 2) make the best decision you can with the knowledge you have at the time and never look back. 3) do NOT let guilt dwell in your mind. 4) ignore unsolicited advice❤️
Gosh Iris, TWENTY years?! How did you ever do it? I’ve been helping my husband with Parkinson’s for about 9 years and I am starting to feel really drained right about now; when he is getting to the advanced stages ! This is a tough road; nervous about what lies in our future. I can’t imagine 20 years. You are amazing. Did you have to ever consider a nursing home due to the level of care he required?
@@chippy7745 Hi! It was hard. I have often said it was not the day he died that was the hardest, it was watching him die day after day. I am an extremely stubborn person. I did not ask for help when others would have counted it a bleeding to help. I didn’t consider long term care because I thought it was my duty to deal with everything. In retrospect, I did him and myself a disservice. I had to give myself grace on the days he was moody and irrational. On those days I would focus on tolerance as my goal because I knew love was beyond me emotionally. Chippy, be smarter than me. Talk to a close friend about how you feel. Accept help. Give yourself grace to have days that you are not your best. My husband has been gone for 4 years and I am just now beginning to see past the feelings of failure and guilt. I don’t know you but I love you for what you are going through. Remember that. Going through, which means there will be “the other side”.❤️
@@iwhitert ...your advice is very valuable. You know what this is like. I am stubborn like you too. I will though, when times get bad, try to reach out to others for help as needed. One problem with that, however, is ....hubby doesn’t like it when I reach out to anyone. He feels it makes him look bad (needy, inferior, weak, sickly...and that is something he doesn’t want to portray) so it makes it hard to reach out. Geez, I can barely get him to agree to hire a handyman when I need things done that he can’t do anymore. Can’t even tell his family anything that hints at disease progression. Weird. I just pray I will be able to handle all that lies ahead. So many caregivers are in the same boat. It’s a fear of the unknown we all live with. Just have to try to have faith. Heartening to know you made it to the other side. Thank you for the kind words and advice.
I loved hearing that Jason refused to alter his diet. I support his decision. I also remember when eggs were bad, fat was bad, etc. Live your best life!
I am a retired BSN and Health Care Administrator who specialized in working with seniors and over the years have worked with thousands of seniors with dementia of all sorts. You are both incredible. Please smile and laugh whenever you feel like it. It bodes well for both of you and sometimes your smile is what keeps you going. Ignore the naysayers and realize they are working with teir own demons in their own lives. I truly admire all you are doing for the people watching your videos.
Jason, I loved your “paint chips” Tommy Boy reference! I love your sense of humor. I appreciate your updates a ton. My mom was just diagnosed with lewy body dementia. She was fantastic at “faking” it to everyone for the longest time. During COVID she significantly declined. I’m thankful for your videos and your love for each other is inspiring. A beautiful couple inside and out. ❤️
I am so saddened that people out here think you need to hear their negative opinions as if they have a clue about your relationship or what you're both dealing with. It seems that the internet makes people feel entitled to say things they might not say in person. Even though you try to take their comments for what they are I can still see how much it hurts and that is the last thing you need on top of everything else life is throwing at you. I just found your channel by accident and I watched all 6 of your dementia videos. I think it's so obvious how much you two love each other and are so empathetic of the other's experiences through this. You are an amazingly beautiful couple inside and out! I look forward to your future videos and will start watching your decorating videos too!
I’m just going to say it “people are *ssholes”!! I both laugh and cry (don’t tell anyone I have a soft heart) all the way through every one of your videos. “You don’t know it unless you live it” is an absolute truth in so many ways. I absolutely love to see you both in your updates even though some parts of them make me very sad. Life is so very short and you gracefully remind me to live it large! Much love and many many continued prayers!!
Dementia and Alzheimer’s are so very hard on everyone, the patient, the care giver, the family....any good information you can get is simply a plus! Educate yourself all you possibly can.Lost my husband to Alzheimer’s after caring for him for 6 years. Hardest time of my life and the grace of God is what kept me going. My heart goes out to both of you. Stay positive, learn all you can and know that you have people praying for you. Thank you for sharing these times with everyone.
Wow that is beautiful, they are both so amazing and prayers for them is what is needed. So glad they ignore the negative comments and they are so brave.
I was right there, with my mom, to increasing degrees for 10 years. It was tough, but God's grace brought me through, as well. And God gave me poignant interactions with my Mom that will stay in my heart forever 💖🙏💕
You guys are so precious. You are doing such a good job explaining things and giving us a look into your life. My mother had Alzheimer’s for about 20 years before she passed away. I learned very quickly that people who had never been through something like that sometimes said the very worst things. I knew they didn’t understand so I did my best to give them grace.
@@mollieanne yes, I remember seeing many indications of my Mother's dementia before it was evident to many others. I can't even stress how valuable compassionate family members and caregivers who were of a serving and helpful heart were.
I am just starting this process with my husband, he has dilutions all the time and they can be scary. I will say that watching your videos has helped me to react differently to my husband's issues. God bless you both.
Keep laughing. Anyone who is going thru something as difficult as this knows how important laughter is. My husband was diagnosed with cancer 5 years before he died. We laughed all the time. After 48 years of marriage we had so many “inside jokes” and truly enjoyed each other’s company. I miss our laughs the most. So keep on laughing!! You won’t regret it!!
My mother hallucinated happy children playing nicely in her room, and people sitting on top of the roof opposite. She was saying how stupid they were to be sitting up there in the cold. She imagined she was living elsewhere. It all happened ever so suddenly and she was never diagnosed with dementia, merely confusion.
Another great sandlot quote: "Everybody Gets One Chance To Do Something Great. Most People Never Take The Chance..." It’s good to see you guys are taking that chance. Much love.
Well first of all, I cannot believe that you’ve been married that long, you look like you’re in your 30’s. Keep it up! I want to learn more and walk on the journey with you. Love your home! Merry Christmas
My 42 year old husband has Huntington’s Disease so I can relate to everything you both are experiencing from swallowing, movements, memory issues and mood changes. It’s tough but attitude makes a difference.
You are right Jason. Live in your good world and don’t pay attention to the negative ones, they have their own problems so let them get on with it as you keep yourself and your family positive. ❤️ from uk.
After the phone call interruption and Jason came back on, you could see that his face had a totally different look, subtle but different as though he was no longer actively involved as he was earlier, but passive. Then he said that this fuzz was happening. Incredible to see the. Hear him describe it.
If one didn't know about Jason's disorder, from these videos you would never suspect. I just love his sense of humor and wittiness. Wishing you a very festive and Merry Christmas.
I am in Assisted Living & know several people who have dementia. It is heartbreaking to watch their decline. You two are very lucky that you have each other -
My husband passed 2 yrs ago. He was disabled with type 1 brittle diabetes resulting in TBI in 2007. It was a battle for the entire 11 years. After listening to your podcast, im pretty sure he had this type of dementia. I dont know how long he would have lasted had he not had a heart attack. I had to work for the benefits and to keep our home. I was not always the most patient just as he was often very mean and combative. You have a hard road. Just know that no matter the battle, when its over, you will thank God for the strength he gave you. It was the single best thing I've ever done even if I did it poorly.
Anybody spending that much time in Judgment of others is avoiding looking at themselves just remember that. Sad people who hate their lives like to make other people as unhappy as they are
So so very true. This couple is amazing and I love their sense of humor. They smile and kaugh a lot, but deep I am sure they have a lot f pain deep down. Just imagine your life changing so drastically and so much loss of income. They are doing the best they can and helping people along too. I wish them the best and pray for them. I don't wish this in anyone.
Anyone suffering any handicap from injury in an American war and anyone supporting them, are the highest level of heros and should have our absolute full respect. And to put this information out there - this level of vulnerability - to help others - wow. I state this as someone who didn't agree with the gulf war - it doesn't matter the military disabled can never get enough of our respect and our leaders and citizens have no idea the sacrifices these folks make.
Trolls are such nasty people and seem to be on most channels to spread their vitriol and negativity. Good people see you for who you are and you don’t need to defend one thing. I hope you don’t give them any more time/space in your head or on your channel. You are both amazing individuals who have achieved so much in your lives. Sending you love from Canada ❤️🇨🇦
Your video helps me know I’m not alone in this Journey. Thank you. My husband of 51 almost 52 years has Parkinson’s and Lewy Body Dementia. You guys are great and deal with it wonderfully. We laugh and are goofy all the time. We must go with the flow! Hugs and good thoughts, MommaFaye 🌺
Jason is hilarious! It’s awesome you still laugh at his jokes after 30 years! My father had dementia, and remained a josher to the end - thank god. His favorite thing to do, make and laugh at jokes.
Love you guys. Having worked with Jason in the AF, i find myself laughing right along with you! Jason is still holding on to his sense of humor. Love you brother! I.YA.A.Y.A.S.
My mother had dementia for 15 years. My goodness, what a struggle for her and me since I was the only caregiver she had. I was also working 12 hours at my job. It is a long, long, long road as progression of dementia worsened. But, would I, could I do it again? In a heartbeat. It was all about Mom's comfort. I miss her so much
Just discovered your videos. My husband passed away in July 2020 after a ten plus year battle with Alzheimer’s or Lewey Body. We did not get a good diagnosis. I was his caregiver the whole time. We did have to place him in Memory Care the last 3 months of his life because I couldn’t handle his care alone. Hospice was wonderful but he would not allow them to help him. He was 76 years old and I am 73. These videos will hep so many people understand. You are awesome and I send you my love as you travel this road. ♥️♥️♥️
You could give some people all the wealth, health and things they want in the world and they will still find something negative to say about someone/something else. Give it ZERO mental energy. Don’t even finish reading the to the end of their comment. Thank you for sharing your journey with us! You two are a beautiful team 💕
Jason is so sweet and cares so much about his wife. As a caregiver myself, I know how very hard it is for the caregiver. I think it's great he's aware of it too. He's in great spirits. You two are just lovely. Sending all the love and prayers your way.
It was so nice to see him so chatty. He knows what's going on when he is "on". I enjoy your candidness. You can't worry about the negativity of some people. As you both said, no one knows how you and live and interact with each other. Bless you both!
Oh my goodness gracious! Jason sticking up for you is heart warming and I 1000% agree that “ain’t nobody got time for that” negativity! I have laughed out loud so many times and I’m only halfway through this video. You guys are amazing and thank you for sharing your journey 💗💗💗
Regards from Northern Ireland. As a nurse I think you are sharing extremely important information for other people. It’s a very kind gesture to let folk get a snapshot of your life as you deal with this horrible illness. Ignore negative people and know that all of us are rooting for you and your lovely wife. God bless.
I lost my husband to Frontotemporal dementia after 30 years of marriage. He was misdiagnosed with depression but I knew my husband better than the first neurologist we went to. I knew it wasn't depression. We went to the Mayo clinic in Minnesota. It didn't take them long to give an accurate diagnosis. In my husband's case, he had no idea how sick he really was. The average life expectancy for FTD is 2 to 13 years. My husband died two years after his diagnosis at age 66. I kept him home as long as I could but eventually had to put him in a nursing home. That was the worst day of my life. My home would never be the same without him. I cried so hard I made myself sick. Going to bed that night without my husband to hold was absolutely painful. My husband would wonder the streets in the middle of the night. I would catch him taking all kinds of over the counter medication out of the medicine cabinet. He would try operating power tools for no reason. I had to lock everything up and I wore keys around my neck even at night so he couldn't unlock anything he shouldn't get into. He became like a naughty child. I couldn't take him out in public because he literally said what he thought about everyone. He was physically healthy and strong. He began to think it was funny to smack my behind but it began to get serious when he couldn't be redirected and my backside started turning red from his continued behavior. I couldn't afford at home care so I had friends come and sit with him while I worked fulltime at school. It just tears you down to see the person who was once your protector and pillar of strength diminished to childlike behavior. My husband had the behavior variant along with speech apraxia. He ended up in three different nursing homes over the course of one year due to his bad behavior yet still being so strong. Eventually his health deteriorated and his behavior was no longer an issue because he could no longer walk or speak at all. I spent 16 hours creating a communication book for my husband using pictures from a speech program called Boardmaker. He would point to pictures when he could no longer speak. I donated the book to the last nursing home he was in when he died. I was with him 24 hours a day his last week of life. The nursing home allowed me to stay with him during that time. I slept in the recliner next to his bed holding his hand all night. He spent a week unconscious and moments before he died, he opened his eyes and turned his head toward me. I told him how much I loved him and I thanked him for 30 wonderful years together. I reassured him I would be okay and it was time to go home with the Lord. I kissed him. He closed his eyes and took his last breath. We had such a deep connection as a couple. I truly lost the love of my life. This will be my second Christmas without him. He may not be here on earth but he still lives in my heart and soul. Thanks for listening to my story.
The strength and grace you are both showing is absolutely incredible! Thank you both for being so brave. You're helping more than you will ever know. You are so strong! God bless you both.
I'm my husband's caregiver also. He has Parkinson's with LB dementia. I also work part time outside of the home so when he started telling me about his hallucinations seeing people wondering around the house, I told him he should give them chores to do. Honestly his dreams and hallucinations are 99% hilarious and we laugh a lot. There's nothing more scary to him than can't finding me. I'm usually just in another room or just out of his sight for a moment. This doesn't happen very often thank God. I can relate to everything you guys are going through the good, the bad, and the ugly.
I love your humor between you 2!!! My husband and I have the same humor, and you HAVE TO LAUGH! 4 time cancer fighter here! You NEED to joke around!😆💖😊🥳💥💣
My husband of 34 years and had parkinsons when he was 49 and I was 42, but 10 years in he was also diagnosed with Lewis Body as well, passed away 2 years ago,, about your laughing, I would of not made it if I didn't laugh like you because if I wasn't laughing I was crying, bless you and you husband. And most important I prayed almost nonstop like you!!! God will get you through this!! You are a strong woman and a blessing!!
My husband was diagnosed with Fronto temporal Dementia in 2016 when he was 55 years old and our youngest child was 9 years old. He now lives in assisted care facility as he has become a danger to himself and others. It is very heart breaking to watch someone you love disappear. Take care and enjoy each other right now. Cheers from Australia.
My husband died from Lewy-Body at age 67, after 41 yrs of marriage. I was his only caregiver. These folks are so telling the truth straight up!! My husband and I laughed on days when he was feeling good. Some days he was not happy, he was mean, hurtful, not to me physically. He passed on Hospice in our home. These folks are so truthful, and spot on. God Bless you both & take care.
Hi, thank you so much for your sweet comment. I’m so sorry to hear about your husband. 💙 we really appreciate the support. I try to remember that those who are not going through it, struggle to understand. Hearing from others like you, feels so nice and reminds me I’m not alone. Sending you hugs 🤗💕
I recently lost my mother to dementia. Being her caregiver was tough but what I take away now is the memories of her humor. Even on some of her worst days we could have a really great laugh. My husband and I are a lot like the two of you. We can be having a touchy moment but it can’t last because one of us inevitably says something and the laughing begins. I love the saying “the most wasted of all days is one without laughter”. It will get tougher but always find some humor.
I love your vulnerability! I sit here with a smile on my face until my face hurts. You're a darling couple with a true love that shows! God bless you. It's wonderful that you want to help others in your same situation. Regarding the leg jerking... my late husband had RLS (Restless Leg Syndrome) and we slept in a water bed...without baffles! Just imagine! He felt bad when he'd learn that I slept most of the night on the livingroom couch... but only once or twice a month. We finally got twin Select Comfort beds and pushed them together with one top sheet which enabled us to have our own mattress. Problem solved!
My Grandmother has dementia. When she says silly things like "go to the kitchen and fix my hands" you have to laugh at those moments, though sad because you lose them each day, because if you dont laugh, you will cry. It relieves us caregivers to laugh and pretend she is just being silly.....I have been a home health caregiver to those with mental and physical disabilities for the past 20 years, so I can disassociate my emotions most of the times with my grandma, and I do get moments when I get sad, like when she would tuck my hair back or tell me she loved me, even though she doesnt know me anymore. I will cry and mourn when she has passed. So, laugh, joke with each other while you can and enjoy your life together. As Jason progresses.....He may no longer know you, but you know him. God Bless and thank you for these videos.
My sister was diagnosed with Dementia - FTD, Frontal temporal dementia , different symptoms, all under the umbrella DEMENTIA. She was retired Marine nurse. She passed a year ago. I thank you for doing these videos. This is not spoken about or really understood by many. Denial is a sad thing so keep up educating those brought to your channel. I got the book “The 36 Hour Day”. Good resource, helped my understand better the scope of the illness. God bless. Just subscribed. Unless you have been a caregiver to a person with dementia, you can’t understand how life changes for everyone involved. Be gentle on yourself with this journey.
I lost my husband Sept 2019 from dementia. He was in middle stage. Getting unsteady with his walking. He fell in the driveway and hit his head. Was on blood thinner for Afib. He hemorrhage to death in about 10 hours. I think the Lord just took him home that day as he knew it was going to be hard in his need of care. Not much family support. He had ask me not to put him in a nursing home. All I could tell him was that I would take care of him as long as I could. I miss him every day but would not want him to come back with the dementia as We both knew it would only get worse. He told me and our Pastor a few months earlier that he lived long enough.
My friend had Lewy Body Dementia and my dad had Alzheimer's. Like Jason mentioned it is the care provider that needs support. My mom was so baffled at my dad's decline I remember her saying, " Dear, he must be joking he doesn't remember that." I think it was more heartbreaking to watch the care providers' (my mom's) anguish and disbelief than the actual person experiencing dementia. Jason, explaining what you are experiencing as well as Leslie trying to deal with the changes that progress while still try to maintain a daily routine are so helpful to many people. I so wish my mom could have watched your videos and my friends' family. We were all so blind going into this journey . All the resources my mom had was a book a doctor handed them about Alzheimer's after the diagnosis and no further counseling. Thank you both for informing and helping others as you answer so many questions and concerns and the time it takes you to do so. Jason, you are leaving a gift behind that will help many people. Can't thank you enough!
I really appreciate hearing Jason talk about his experience! Thank you both for being vulnerable in the face of that 10 percent. I hope making these videos and putting them out there is beneficial to both of you. Just to let you know, the other 90 percent of us appreciate your efforts ❤️❤️
wonderful, informative, loving videos, dont listen to the negative comments...people that dont understand why you are helping others learn about dementia are not worth listening to. Keep up the amazing work!!
Being a wife of a husband with Parkinson’s. You are both a breath of fresh air !!! Thank you. We laugh a lot at ourselves. It helps a lot Because someday it’s not goin to be to fun !!
He is so witty! I totally get it! I couldn't say my words in correct order, after a surgery. I talked like Yoda from Star Wars!😆😜 Positivity goes a long way!
I have LBD and my wife and I act very much as you do. We live in NH and the give and take is so a part of life with New England couples. Thanks for the video!
There are thousands getting healed of incurable diseases at the North Georgia revival meetings. God is able to heal and it is open to everyone who wants to encounter God. I am praying for you.
You two are absolutely perfect for each other. You are making your way through this hand you’ve been dealt with grace, love and humour. You are generous enough to share this journey with everyone. I wish you the very best.❤️❤️ Thank you. P.S. Don’t feel you have to explain or justify your actions, some people can understand and some simply will not, and that’s ok.
You two are the sweetest. This documentation of living with LBD is so generous. Putting yourselves out there is inspiring. Merry Christmas 🎄 to you and your family. ❤️
From an RN standpoint, I think it is great that you are showing the average person what it is truly like to have someone you love to have this awful disease!! I love your honesty and how great of a couple you are. Also, there are always going to be those keyboard warriors who hide behind their computers on the internet are negative.
I think you both are wonderful, my brother has Lewy Body Dementia and he is in his early 60's and the way you love and support him is a blessing to me. You helped me understand my brother better now. Please keep doing these videos they are so helpful to our family.
Found your videos looking at other medical related videos. I have end stage cancer and was widowed a week before my cancer diagnoses. All this at 52 just a little older than your husband. I think in life we are never to young to get sick as it just changes your life over night and everything you knew was someone else's life and now this is your new life. I was a caregiver at the age of 23 for a lovely man i loved and spent the next 7 years caring for him and having a full time job. It was a bone related illness so his disability was not being able to walk and chronic pain. You add narcotic pain killers and alcohol to the mix and life becomes more complicated so I hope your husband is not in pain. I love the videos of you two during the day as its a good raw look into your life and i thank you for both your courage to do this. God bless.
You are truly an inspiration. My Dad died of Mad Cow Disease at the age of 73. It took a lot support to figure out his diagnosis. You are a lovely couple.
My daughter works as a CNA in a nursing home. She thinks I have this. She sent me this & I'm so happy to your doing this. Thank You. I see u have a 1st. Episode so I'm going to start from the beginning after this. You are adorable together..I'm 55 & I'm having alot of difficult sidguations my kids say I would say no I didn't or. I don't remember that & it could of happened hrs.or the day before. I HAVE TO COMMENT REGARDING ABOUT YOUR WIFE LAUGHING & I CAN'T BELIEVE SOMEONE THINKS THAT WAY. PLEASE CONTINUE TO BE YOU. I'VE BEEN MARRIED 37 YEARS . WE WOULD BE JUST LIKE YOU LAUGHTER IS THE BEST MEDICINE. THANK YOU SO MUCH.
They talk about married celebrities as power couples. YOU are a power couple in the true sense of the word.
Oh, hi 😉 They are amazing people and an amazing couple. I'm so glad I found her channel!
Amen they sure are.
Cheryl Lehrman AMEN!
Definitely couple goals
@@chastitylockridge4008 gun g.
Thank you for these videos. This month we found out my husband has lewy body dementia. For the past year the doctor's my husband sees at the VA knew something was wrong but, could not figure it out until this month because of your video. I watched an episode last month and I said, " wow, that is our life, this is exactly what we are going through" which prompted me to make another appointment and talk with his doctor as to what I thought it was. Had I not seen this video we would still not know and still feel lost and alone. Please do not stop doing these videos, patients and caregivers need to know we are not alone in this struggle and others out there like my husband and I because of your videos got the diagnosis we so desperately needed....Thank you
I am SO glad that our video helped you! You just made filming these videos so worth it! If we can help even one person, then it's worth it! Sending you big hugs as you continue this journey. I hope with the new diagnoses, you can get the care you will so desperately need!! 💖💖💖
I can't believe people got upset because your laughing at each other. You guys are awesome with each other.🙂
Exactly, you have a great marriage and you both help people so much. I don’t have this, I have porphyria and I feel for my hubby. I like when my hubby tells me, I am starting to go or fade or be grumpy gus and He respects me enough to tell me and be Real. Not treat me like baby. It’s late so I hope I am being clear.
Block the trolls who get pleasure out of being nasty. You are both so awesome. Brave and compassionate to be sharing your lives with us. Thank you.
My husband has Parkinsons with probable Lewy body..we use humor to also survive parkinsons time...he freezes and he also in in a wheelchair from a failed back surgery...we made a promise to each other to no matter how sick either of us got to always fight to find our way back to each other..many doctors and nurses think I'm smothering or they treat him like a idiot. Humor always has helped us from falling into the great abyss along with reminders cues and redirtects... I dont care if there is a expert said cover yourself in crisco and whistle would help him I'd do it..no two Parkinsons patients are the same...and we have to do what's best for our own paths...
There are some truly mean people on youtube. Block them. The last thing u need is extra stress. They are called keyboard warriors. AKA: cowards in person but brave behind a computer screen
I love Jason sticking up for Leslie. Your love for each other just beams through, despite what you are facing.
Bless you both. Shame on anyone making negative comments.
You speak so eloquently about the circumstances of your illness.
I can feel the love you have for each other.
My heart goes out to you both. 💝
I agree !!! Keep being yourself and let the negative people be who they choose to be. They choose to be negative; they probably aren't happy with their own life and choose to find anything to make themselves feel better by speaking negative to or about others !! They have their own problems, but will never choose to believe it, even if Dr Phil was to tell them. Be yourselves !! I love it and most people do !
Jason what you are doing talking to us is so jolly kind and generous.
Bless your cotton socks.
Jason what do you want for Christmas, I would like a flying fire breathing dragon, however I do not like Santas chances.
Australia 8.25pm
Ignore the 10% - Delete! Delete!
My husband is 47 and he has dementia. We found out a yr ago. I love these videos and just know it does help alot. I dont feel alone.
My husband doesn’t have dementia but has pretty complicated diabetes and then I had a cardiac arrest and ha no breath or pulse for 12 minutes min. Brought back with chest compressions/and CPR by my husband and then I went and had a stroke 6 months later and am in a wheelchair . I have BP issues, a bad valve in my heart, brain tumour, and epilepsy, which was secondary(the tumour I mean. It’s quarter size near my optic nerve so risk of blindness&my eyesights pretty bad to begin with. Blind in right eye.)(I sound like the doggie who nobody wants, sitting on the side of the road with a ribbon around my neck saying free to any home lol) I have a very particular sense of humour, it’s not for everyone! Lol.). after an emergent hysterectomy.and have lasting effects.
I’m turning 48, my hubby is 58.
It’s been a very hard last 12 yrs. do you have support of any kind for either of you? You and your hubby will be on my mind and in my prayers as long as I write it down now 😊🙏🏻💜 take care hon. It’s got to be hard on you. Especially, if you have a close relationship and have been together through thick and thin. I think those of us in that category do plough through immensely rough patches but our deep connection, grounds us snd brings us closer even though it doesn’t feel like it sometimes you feel very alone in the stress and grief that comes wishing for life before diagnosis/disability/etc. That’s been our experience.
Just subbed to your channel. I’m in Canada, but if you have or anything to have an IG(Instagram) it’s nice and at least you can chat like testing there through dm’s(direct messenging) so if you ever feel like you want or need a new buddy even long distance just message me there and I’ll approve you. There’s been some creepy ppls so I private’s my photos etc I’m not sure why but I found their messages really bothersome so . Not everyone has that happen but ya never know? So I hope you’re coping as great as you can and that your husband is holding his own at the moment and things aren’t too stressful, but either way, I hope it’s alright if I add u to my prayer book and pray for both of you and you’ll be in my heart and mind. Bless your heart Heather.💜
❤️❤️
I am 60 years old and I think if I lived to 100 I would never understand people who are horrible to others. My mum was the kindest person and always said “if you can’t say anything nice just don’t say anything”.
You are laughing with him, not AT him! There’s a difference. You both have your heart in the right place!❤️
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Leslie is so respectful. It’s obvious she wants Jason to have his voice. I hope the positive words uplift you and elevate you over the harsh words. It’s so great you are so brave to share your story.
My father passed away at 85 years old, having lewy body dementia. He described the feeling you call "fussy" as "cobwebs in my head". He had all the neurological issues that come along with lewy body. However, he never lost his recogition of my mother and me. He was communicative until the last 12 days of his life. We had some really good times and laughs while living with him and his misconceptions and hallucinations. One night he and I spent hours laughing and "delivering papers in the neighborhood on his motorcycle." In actuality i was pushing him in his wheelchair...all over the house. I cherish that memory. Everything wasn't lighthearted but we survived. Daddy was a career fire fighter and retired as firechief. We fought a few fires in the wee morning hours. 😉 It was a heart break but it was also a time of little and big blessings. You have my support and prayers.
Trank you so much for Charité this Honert Kind Worms about your Life with your father. Gold Blessur you
Lovely person
Aww www. So sweet of you to play along..❤
Oh man I love hearing Jason’s take on this, his sense of humor cracks me up! We’re out here pulling for you both!
Jason's positivity is beautiful to see. I'm happy to see him having energy and feeling talkative. You are both amazing. Thanks for sharing your story.
From my research, there is nothing available like what you two are selflessly offering.
My brother was recently diagnosed with same diagnosis as Jason.
I am learning so much from you both.
Thank you very much
I’m am a licensed social worker that specializes in dementia. I love your videos and they help me connect better with my patients and families. Thank you for being so vulnerable.
Such a wonderful husband defending his loving wife. His years of military leadership coming through ;) .. strong work, both of you- love and encouragement and prayers (misc my dad had ALS- not the same, but chronic and heartbreaking). P.s. hope you've been able to see that grand baby boy :)
I watched my husband decline for 20 years to a quadriplegic due to severe MS. My advise is...1).do you. 2) make the best decision you can with the knowledge you have at the time and never look back. 3) do NOT let guilt dwell in your mind. 4) ignore unsolicited advice❤️
Gosh Iris, TWENTY years?! How did you ever do it? I’ve been helping my husband with Parkinson’s for about 9 years and I am starting to feel really drained right about now; when he is getting to the advanced stages ! This is a tough road; nervous about what lies in our future. I can’t imagine 20 years. You are amazing. Did you have to ever consider a nursing home due to the level of care he required?
@@chippy7745 Hi! It was hard. I have often said it was not the day he died that was the hardest, it was watching him die day after day. I am an extremely stubborn person. I did not ask for help when others would have counted it a bleeding to help. I didn’t consider long term care because I thought it was my duty to deal with everything. In retrospect, I did him and myself a disservice. I had to give myself grace on the days he was moody and irrational. On those days I would focus on tolerance as my goal because I knew love was beyond me emotionally. Chippy, be smarter than me. Talk to a close friend about how you feel. Accept help. Give yourself grace to have days that you are not your best. My husband has been gone for 4 years and I am just now beginning to see past the feelings of failure and guilt. I don’t know you but I love you for what you are going through. Remember that. Going through, which means there will be “the other side”.❤️
@@iwhitert ...your advice is very valuable. You know what this is like. I am stubborn like you too. I will though, when times get bad, try to reach out to others for help as needed. One problem with that, however, is ....hubby doesn’t like it when I reach out to anyone. He feels it makes him look bad (needy, inferior, weak, sickly...and that is something he doesn’t want to portray) so it makes it hard to reach out. Geez, I can barely get him to agree to hire a handyman when I need things done that he can’t do anymore. Can’t even tell his family anything that hints at disease progression. Weird. I just pray I will be able to handle all that lies ahead. So many caregivers are in the same boat. It’s a fear of the unknown we all live with. Just have to try to have faith. Heartening to know you made it to the other side. Thank you for the kind words and advice.
I loved hearing that Jason refused to alter his diet. I support his decision. I also remember when eggs were bad, fat was bad, etc. Live your best life!
I am a retired BSN and Health Care Administrator who specialized in working with seniors and over the years have worked with thousands of seniors with dementia of all sorts. You are both incredible. Please smile and laugh whenever you feel like it. It bodes well for both of you and sometimes your smile is what keeps you going. Ignore the naysayers and realize they are working with teir own demons in their own lives. I truly admire all you are doing for the people watching your videos.
I think you laughing at his jokes is so beautiful.
You folks don't have to explain anything. THERE WILL ALWAYS BE PEOPLE THAT ARE UNKIND.
Isn’t that the truth
Jason, I loved your “paint chips” Tommy Boy reference! I love your sense of humor. I appreciate your updates a ton. My mom was just diagnosed with lewy body dementia. She was fantastic at “faking” it to everyone for the longest time. During COVID she significantly declined. I’m thankful for your videos and your love for each other is inspiring. A beautiful couple inside and out. ❤️
I am so saddened that people out here think you need to hear their negative opinions as if they have a clue about your relationship or what you're both dealing with. It seems that the internet makes people feel entitled to say things they might not say in person. Even though you try to take their comments for what they are I can still see how much it hurts and that is the last thing you need on top of everything else life is throwing at you. I just found your channel by accident and I watched all 6 of your dementia videos. I think it's so obvious how much you two love each other and are so empathetic of the other's experiences through this. You are an amazingly beautiful couple inside and out! I look forward to your future videos and will start watching your decorating videos too!
I agree ! Very Sad 😞. Sending ❤️& 💪 to you All !!
Your comment nailed my feelings exactly! Well put, I’ll second that!❤️
These are the same people who'd scream at a Starbucks employee for not putting enough foam on their fancy coffee drink and think it's okay.
I’m just going to say it “people are *ssholes”!! I both laugh and cry (don’t tell anyone I have a soft heart) all the way through every one of your videos. “You don’t know it unless you live it” is an absolute truth in so many ways. I absolutely love to see you both in your updates even though some parts of them make me very sad. Life is so very short and you gracefully remind me to live it large! Much love and many many continued prayers!!
Dementia and Alzheimer’s are so very hard on everyone, the patient, the care giver, the family....any good information you can get is simply a plus! Educate yourself all you possibly can.Lost my husband to Alzheimer’s after caring for him for 6 years. Hardest time of my life and the grace of God is what kept me going. My heart goes out to both of you. Stay positive, learn all you can and know that you have people praying for you. Thank you for sharing these times with everyone.
Wow that is beautiful, they are both so amazing and prayers for them is what is needed. So glad they ignore the negative comments and they are so brave.
I was right there, with my mom, to increasing degrees for 10 years. It was tough, but God's grace brought me through, as well. And God gave me poignant interactions with my Mom that will stay in my heart forever 💖🙏💕
You guys are so precious. You are doing such a good job explaining things and giving us a look into your life. My mother had Alzheimer’s for about 20 years before she passed away. I learned very quickly that people who had never been through something like that sometimes said the very worst things. I knew they didn’t understand so I did my best to give them grace.
@@mollieanne yes, I remember seeing many indications of my Mother's dementia before it was evident to many others. I can't even stress how valuable compassionate family members and caregivers who were of a serving and helpful heart were.
Husband was diagnosed with Lewy Body Dementia and Parkinson’s. You’re doing a great work.
I am just starting this process with my husband, he has dilutions all the time and they can be scary. I will say that watching your videos has helped me to react differently to my husband's issues.
God bless you both.
Keep laughing. Anyone who is going thru something as difficult as this knows how important laughter is. My husband was diagnosed with cancer 5 years before he died. We laughed all the time. After 48 years of marriage we had so many “inside jokes” and truly enjoyed each other’s company. I miss our laughs the most. So keep on laughing!! You won’t regret it!!
My mother hallucinated happy children playing nicely in her room, and people sitting on top of the roof opposite. She was saying how stupid they were to be sitting up there in the cold. She imagined she was living elsewhere. It all happened ever so suddenly and she was never diagnosed with dementia, merely confusion.
Another great sandlot quote: "Everybody Gets One Chance To Do Something Great. Most People Never Take The Chance..."
It’s good to see you guys are taking that chance. Much love.
Jason You Are Absolutely 💯 showing Us Its Ok And That We Are Human
Laughter is the best medicine!
The love that the two of you have for each other is so beautiful.
Well first of all, I cannot believe that you’ve been married that long, you look like you’re in your 30’s. Keep it up! I want to learn more and walk on the journey with you. Love your home! Merry Christmas
PLEASE don't forget you have a delete/ block button.
Yes, "Block" Party!
Amen...#godisgood
All the Time ❤
My 42 year old husband has Huntington’s Disease so I can relate to everything you both are experiencing from swallowing, movements, memory issues and mood changes. It’s tough but attitude makes a difference.
You are right Jason. Live in your good world and don’t pay attention to the negative ones, they have their own problems so let them get on with it as you keep yourself and your family positive. ❤️ from uk.
Y'all are adorable.....unless you've been thru dementia, you really can't understand. Everyone is different. Bless you and your family
You both are so brave!
They sure are
After the phone call interruption and Jason came back on, you could see that his face had a totally different look, subtle but different as though he was no longer actively involved as he was earlier, but passive. Then he said that this fuzz was happening. Incredible to see the. Hear him describe it.
If one didn't know about Jason's disorder, from these videos you would never suspect. I just love his sense of humor and wittiness. Wishing you a very festive and Merry Christmas.
I totally agree with you. They are so cute together.
I thirdly agree!! Love them both!
I am in Assisted Living & know several people who have dementia. It is heartbreaking to watch their decline. You two are very lucky that you have each other -
You know the older I get the more I see how human we really are and you guys are a great couple.
My husband passed 2 yrs ago. He was disabled with type 1 brittle diabetes resulting in TBI in 2007. It was a battle for the entire 11 years. After listening to your podcast, im pretty sure he had this type of dementia. I dont know how long he would have lasted had he not had a heart attack. I had to work for the benefits and to keep our home. I was not always the most patient just as he was often very mean and combative. You have a hard road. Just know that no matter the battle, when its over, you will thank God for the strength he gave you. It was the single best thing I've ever done even if I did it poorly.
Anybody spending that much time in Judgment of others is avoiding looking at themselves just remember that. Sad people who hate their lives like to make other people as unhappy as they are
Wow that is so very true. Nice that they ignore those negative comments. I love how brave and real they are.
True as Joyce Meyer once said it's "hurting people that hurt people".
Not really... your being way to general...
So so very true. This couple is amazing and I love their sense of humor. They smile and kaugh a lot, but deep I am sure they have a lot f pain deep down. Just imagine your life changing so drastically and so much loss of income. They are doing the best they can and helping people along too. I wish them the best and pray for them. I don't wish this in anyone.
Anyone suffering any handicap from injury in an American war and anyone supporting them, are the highest level of heros and should have our absolute full respect. And to put this information out there - this level of vulnerability - to help others - wow. I state this as someone who didn't agree with the gulf war - it doesn't matter the military disabled can never get enough of our respect and our leaders and citizens have no idea the sacrifices these folks make.
Trolls are such nasty people and seem to be on most channels to spread their vitriol and negativity. Good people see you for who you are and you don’t need to defend one thing. I hope you don’t give them any more time/space in your head or on your channel. You are both amazing individuals who have achieved so much in your lives. Sending you love from Canada ❤️🇨🇦
There’s a difference between nasty trolls and people who don’t understand......thank you for educating us
Luv from England ❤️🏴❤️
Amen to that, I agree 100%, and am from Canada too.
@@danielleelias685 ❤️
Trolls are evil and enjoy peoples pain they are sick people.
Your video helps me know I’m not alone in this Journey. Thank you. My husband of 51 almost 52 years has Parkinson’s and Lewy Body Dementia. You guys are great and deal with it wonderfully. We laugh and are goofy all the time. We must go with the flow!
Hugs and good thoughts,
MommaFaye 🌺
Jason’s wanting to know what is going on, is good stimulation for his brain.
I've watched a lot of videos through quarantine...this is the first time I'm wishing there was a "Love" button rather than a "Like". Keep laughing.
Try to ignore the mean people. Everyone gets mean responses when they are on social media. God bless you guys!
Mean people are sad people who probably never had a loving heart around them. Sometimes I feel sorry for them.
Jason is hilarious! It’s awesome you still laugh at his jokes after 30 years! My father had dementia, and remained a josher to the end - thank god. His favorite thing to do, make and laugh at jokes.
Jason has a great sense of humor. I love how y'all laugh together. ☺️
Love you guys. Having worked with Jason in the AF, i find myself laughing right along with you! Jason is still holding on to his sense of humor. Love you brother! I.YA.A.Y.A.S.
My mother had dementia for 15 years. My goodness, what a struggle for her and me since I was the only caregiver she had. I was also working 12 hours at my job. It is a long, long, long road as progression of dementia worsened. But, would I, could I do it again? In a heartbeat. It was all about Mom's comfort. I miss her so much
Just discovered your videos. My husband passed away in July 2020 after a ten plus year battle with Alzheimer’s or Lewey Body. We did not get a good diagnosis. I was his caregiver the whole time. We did have to place him in Memory Care the last 3 months of his life because I couldn’t handle his care alone. Hospice was wonderful but he would not allow them to help him. He was 76 years old and I am 73. These videos will hep so many people understand. You are awesome and I send you my love as you travel this road. ♥️♥️♥️
Ignore the people who try to enter your beautiful auras with their negativity.
You could give some people all the wealth, health and things they want in the world and they will still find something negative to say about someone/something else. Give it ZERO mental energy. Don’t even finish reading the to the end of their comment. Thank you for sharing your journey with us! You two are a beautiful team 💕
Jason is so sweet and cares so much about his wife. As a caregiver myself, I know how very hard it is for the caregiver. I think it's great he's aware of it too. He's in great spirits. You two are just lovely. Sending all the love and prayers your way.
It was so nice to see him so chatty. He knows what's going on when he is "on". I enjoy your candidness. You can't worry about the negativity of some people. As you both said, no one knows how you and live and interact with each other. Bless you both!
Oh my goodness gracious! Jason sticking up for you is heart warming and I 1000% agree that “ain’t nobody got time for that” negativity!
I have laughed out loud so many times and I’m only halfway through this video. You guys are amazing and thank you for sharing your journey 💗💗💗
Sadly, there’s always HATERS🤬❗️You are doing a wonderful PSA 👍 PRAYERS 🙏 and BLESSINGS ✝️
Regards from Northern Ireland. As a nurse I think you are sharing extremely important information for other people. It’s a very kind gesture to let folk get a snapshot of your life as you deal with this horrible illness. Ignore negative people and know that all of us are rooting for you and your lovely wife. God bless.
The thought of you having to go through this disease breaks my heart. I’m praying for healing for you.
Jason has the best smile! You can't help but smile when he does. 💙💙
God Bless your precious soul, Jason🙏🏼🙏🏼🙏🏼💕
You two are so touching.. your love and commitment to each other is so strong! May God strengthen and help you each new day.
I have swallowing issues and it is all anxiety related. It’s a awful experience. It’s even worse when I think about swallowing. I feel for you ❤️
I lost my husband to Frontotemporal dementia after 30 years of marriage. He was misdiagnosed with depression but I knew my husband better than the first neurologist we went to. I knew it wasn't depression. We went to the Mayo clinic in Minnesota. It didn't take them long to give an accurate diagnosis. In my husband's case, he had no idea how sick he really was. The average life expectancy for FTD is 2 to 13 years. My husband died two years after his diagnosis at age 66. I kept him home as long as I could but eventually had to put him in a nursing home. That was the worst day of my life. My home would never be the same without him. I cried so hard I made myself sick. Going to bed that night without my husband to hold was absolutely painful. My husband would wonder the streets in the middle of the night. I would catch him taking all kinds of over the counter medication out of the medicine cabinet. He would try operating power tools for no reason. I had to lock everything up and I wore keys around my neck even at night so he couldn't unlock anything he shouldn't get into. He became like a naughty child. I couldn't take him out in public because he literally said what he thought about everyone. He was physically healthy and strong. He began to think it was funny to smack my behind but it began to get serious when he couldn't be redirected and my backside started turning red from his continued behavior. I couldn't afford at home care so I had friends come and sit with him while I worked fulltime at school. It just tears you down to see the person who was once your protector and pillar of strength diminished to childlike behavior. My husband had the behavior variant along with speech apraxia. He ended up in three different nursing homes over the course of one year due to his bad behavior yet still being so strong. Eventually his health deteriorated and his behavior was no longer an issue because he could no longer walk or speak at all. I spent 16 hours creating a communication book for my husband using pictures from a speech program called Boardmaker. He would point to pictures when he could no longer speak. I donated the book to the last nursing home he was in when he died. I was with him 24 hours a day his last week of life. The nursing home allowed me to stay with him during that time. I slept in the recliner next to his bed holding his hand all night. He spent a week unconscious and moments before he died, he opened his eyes and turned his head toward me. I told him how much I loved him and I thanked him for 30 wonderful years together. I reassured him I would be okay and it was time to go home with the Lord. I kissed him. He closed his eyes and took his last breath. We had such a deep connection as a couple. I truly lost the love of my life. This will be my second Christmas without him. He may not be here on earth but he still lives in my heart and soul. Thanks for listening to my story.
Beautiful love story
The strength and grace you are both showing is absolutely incredible! Thank you both for being so brave. You're helping more than you will ever know. You are so strong! God bless you both.
I'm my husband's caregiver also. He has Parkinson's with LB dementia. I also work part time outside of the home so when he started telling me about his hallucinations seeing people wondering around the house, I told him he should give them chores to do. Honestly his dreams and hallucinations are 99% hilarious and we laugh a lot. There's nothing more scary to him than can't finding me. I'm usually just in another room or just out of his sight for a moment. This doesn't happen very often thank God. I can relate to everything you guys are going through the good, the bad, and the ugly.
I love your humor between you 2!!! My husband and I have the same humor, and you HAVE TO LAUGH! 4 time cancer fighter here! You NEED to joke around!😆💖😊🥳💥💣
YES!!! Thank you!! Wow 4 times! What a fighter! 💖💖🙌😊
My husband of 34 years and had parkinsons when he was 49 and I was 42, but 10 years in he was also diagnosed with Lewis Body as well, passed away 2 years ago,, about your laughing, I would of not made it if I didn't laugh like you because if I wasn't laughing I was crying, bless you and you husband. And most important I prayed almost nonstop like you!!! God will get you through this!! You are a strong woman and a blessing!!
Laughter is the best medicine. Clearly you two love each other very much.
My husband was diagnosed with Fronto temporal Dementia in 2016 when he was 55 years old and our youngest child was 9 years old. He now lives in assisted care facility as he has become a danger to himself and others. It is very heart breaking to watch someone you love disappear. Take care and enjoy each other right now. Cheers from Australia.
💙💜 "Smartassitis" LOL. I think I have that too! You guys shouldn't have to explain your dynamic to anyone. Both of you are such lovely people! 💙💜
My husband died from Lewy-Body at age 67, after 41 yrs of marriage. I was his only caregiver. These folks are so telling the truth straight up!! My husband and I laughed on days when he was feeling good. Some days he was not happy, he was mean, hurtful, not to me physically. He passed on Hospice in our home. These folks are so truthful, and spot on. God Bless you both & take care.
Hi, thank you so much for your sweet comment. I’m so sorry to hear about your husband. 💙 we really appreciate the support. I try to remember that those who are not going through it, struggle to understand. Hearing from others like you, feels so nice and reminds me I’m not alone. Sending you hugs 🤗💕
THANK YOU LESLIE AND JASON MAY THE BLESSINGS OF THE LORD BE OVER YOU AND YOUR HOUSEHOLD 💗💖💗
I recently lost my mother to dementia. Being her caregiver was tough but what I take away now is the memories of her humor. Even on some of her worst days we could have a really great laugh. My husband and I are a lot like the two of you. We can be having a touchy moment but it can’t last because one of us inevitably says something and the laughing begins. I love the saying “the most wasted of all days is one without laughter”. It will get tougher but always find some humor.
You two seem like soul mates. Just perfect for each other. I appreciate being educated on this illness. Thank you.
I love your vulnerability! I sit here with a smile on my face until my face hurts. You're a darling couple with a true love that shows! God bless you. It's wonderful that you want to help others in your same situation. Regarding the leg jerking... my late husband had RLS (Restless Leg Syndrome) and we slept in a water bed...without baffles! Just imagine! He felt bad when he'd learn that I slept most of the night on the livingroom couch... but only once or twice a month. We finally got twin Select Comfort beds and pushed them together with one top sheet which enabled us to have our own mattress. Problem solved!
My Grandmother has dementia. When she says silly things like "go to the kitchen and fix my hands" you have to laugh at those moments, though sad because you lose them each day, because if you dont laugh, you will cry. It relieves us caregivers to laugh and pretend she is just being silly.....I have been a home health caregiver to those with mental and physical disabilities for the past 20 years, so I can disassociate my emotions most of the times with my grandma, and I do get moments when I get sad, like when she would tuck my hair back or tell me she loved me, even though she doesnt know me anymore. I will cry and mourn when she has passed. So, laugh, joke with each other while you can and enjoy your life together. As Jason progresses.....He may no longer know you, but you know him. God Bless and thank you for these videos.
So, so, so, so true! ❤️
My sister was diagnosed with Dementia - FTD, Frontal temporal dementia , different symptoms, all under the umbrella DEMENTIA. She was retired Marine nurse. She passed a year ago. I thank you for doing these videos. This is not spoken about or really understood by many. Denial is a sad thing so keep up educating those brought to your channel. I got the book “The 36 Hour Day”. Good resource, helped my understand better the scope of the illness. God bless. Just subscribed. Unless you have been a caregiver to a person with dementia, you can’t understand how life changes for everyone involved. Be gentle on yourself with this journey.
I lost my husband Sept 2019 from dementia. He was in middle stage. Getting unsteady with his walking. He fell in the driveway and hit his head. Was on blood thinner for Afib. He hemorrhage to death in about 10 hours. I think the Lord just took him home that day as he knew it was going to be hard in his need of care. Not much family support. He had ask me not to put him in a nursing home. All I could tell him was that I would take care of him as long as I could. I miss him every day but would not want him to come back with the dementia as We both knew it would only get worse. He told me and our Pastor a few months earlier that he lived long enough.
My friend had Lewy Body Dementia and my dad had Alzheimer's. Like Jason mentioned it is the care provider that needs support. My mom was so baffled at my dad's decline I remember her saying, " Dear, he must be joking he doesn't remember that." I think it was more heartbreaking to watch the care providers' (my mom's) anguish and disbelief than the actual person experiencing dementia. Jason, explaining what you are experiencing as well as Leslie trying to deal with the changes that progress while still try to maintain a daily routine are so helpful to many people. I so wish my mom could have watched your videos and my friends' family. We were all so blind going into this journey . All the resources my mom had was a book a doctor handed them about Alzheimer's after the diagnosis and no further counseling. Thank you both for informing and helping others as you answer so many questions and concerns and the time it takes you to do so. Jason, you are leaving a gift behind that will help many people. Can't thank you enough!
You are so inspiring! My Mom has Parkinson’s with LBD. I shared this channel with my dad. Thank you!
I really appreciate hearing Jason talk about his experience! Thank you both for being vulnerable in the face of that 10 percent. I hope making these videos and putting them out there is beneficial to both of you. Just to let you know, the other 90 percent of us appreciate your efforts ❤️❤️
wonderful, informative, loving videos, dont listen to the negative comments...people that dont understand why you are helping others learn about dementia are not worth listening to. Keep up the amazing work!!
My grandmother said everything in moderation she lived to be 94 and I’m 70!
Being a wife of a husband with Parkinson’s. You are both a breath of fresh air !!! Thank you. We laugh a lot at ourselves. It helps a lot Because someday it’s not goin to be to fun !!
He is so witty! I totally get it! I couldn't say my words in correct order, after a surgery. I talked like Yoda from Star Wars!😆😜 Positivity goes a long way!
I have LBD and my wife and I act very much as you do. We live in NH and the give and take is so a part of life with New England couples. Thanks for the video!
I never thought you were laughing at him I just thought you both have a beautiful relationship
They are laughing together.
There are thousands getting healed of incurable diseases at the North Georgia revival meetings. God is able to
heal and it is open to everyone who wants to encounter God. I am praying for you.
It’s ok not to be ok sometimes, laughter diffuses stress for many of us. Positive vibes, positive energy🤗❤️
You two are absolutely perfect for each other. You are making your way through this hand you’ve been dealt with grace, love and humour. You are generous enough to share this journey with everyone. I wish you the very best.❤️❤️ Thank you.
P.S. Don’t feel you have to explain or justify your actions, some people can understand and some simply will not, and that’s ok.
You two are the sweetest. This documentation of living with LBD is so generous. Putting yourselves out there is inspiring. Merry Christmas 🎄 to you and your family. ❤️
From an RN standpoint, I think it is great that you are showing the average person what it is truly like to have someone you love to have this awful disease!! I love your honesty and how great of a couple you are. Also, there are always going to be those keyboard warriors who hide behind their computers on the internet are negative.
What a wonderful couple! Keep laughing and educating people about what it's like living with Lewy body dementia!
I think you both are wonderful, my brother has Lewy Body Dementia and he is in his early 60's and the way you love and support him is a blessing to me. You helped me understand my brother better now. Please keep doing these videos they are so helpful to our family.
Jason, it was joyful to hear all your humor & explanations as to how you feel. TY both of your honesty & educating us as you make your journey.
Found your videos looking at other medical related videos.
I have end stage cancer and was widowed a week before my cancer diagnoses. All this at 52 just a little older than your husband. I think in life we are never to young to get sick as it just changes your life over night and everything you knew was someone else's life and now this is your new life.
I was a caregiver at the age of 23 for a lovely man i loved and spent the next 7 years caring for him and having a full time job. It was a bone related illness so his disability was not being able to walk and chronic pain.
You add narcotic pain killers and alcohol to the mix and life becomes more complicated so I hope your husband is not in pain.
I love the videos of you two during the day as its a good raw look into your life and i thank you for both your courage to do this.
God bless.
You are truly an inspiration. My Dad died of Mad Cow Disease at the age of 73. It took a lot support to figure out his diagnosis. You are a lovely couple.
My daughter works as a CNA in a nursing home. She thinks I have this. She sent me this & I'm so happy to your doing this. Thank You. I see u have a 1st. Episode so I'm going to start from the beginning after this. You are adorable together..I'm 55 & I'm having alot of difficult sidguations my kids say I would say no I didn't or. I don't remember that & it could of happened hrs.or the day before. I HAVE TO COMMENT REGARDING ABOUT YOUR WIFE LAUGHING & I CAN'T BELIEVE SOMEONE THINKS THAT WAY. PLEASE CONTINUE TO BE YOU. I'VE BEEN MARRIED 37 YEARS . WE WOULD BE JUST LIKE YOU LAUGHTER IS THE BEST MEDICINE. THANK YOU SO MUCH.