LIVING WITH DEMENTIA EP. 2 | FULFILLING DREAMS AND INSURANCE NIGHTMARES
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- Опубликовано: 19 окт 2024
- LIVING WITH DEMENTIA EP. 2 | FULFILLING DREAMS AND INSURANCE NIGHTMARES. 3/24/20 Sharing Jason's journey near the beginning of diagnoses when it was released on A Charming Abode.
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I have had alzheimer's now for three years, I have so much trouble with my sister, she is always trying to fix me. I am still able to do crafts. But other things I just can't do. Love you both.
Might your sister be willing to watch Dementia Careblazers?? Or start going to a support group so she might better understand that you don’t need fixing. You be u…special ❤
Thank you both for sharing your story. I get choked up right along with you! 💜
Thank you - for what you just shared …
( help with important things) don’t micromanage everything. ❤
Sounds like she needs to learn more (and continually learn, as I did and still do even after my mother’s death with Alzheimer’s) about the disease so she can help you and herself. It’s a hard time for everyone during and after. I am post 2 1/2 years and still recuperating from caregiving. Take care❤
It is a hard road for the person and the caregivers. Prayers for you both!
Leslie, on my 9th year as an early onset Lewy Body caregiver of my 55 yr old husband, what is missing here are the rage fits, anger, etc. hoarding comes, more. I know its impossible to film and maybe risky but people new to this illness need to be aware--very aware. You also need to start hiding the phone at night or you may find you'll wake up to a swat team if they call something weird in. Have drs letters that you carry explaining the situation. This is not like Alz. This is called a beast for a reason. Thank you for sharing. Sincerely. Texas
As a nurse who works for Worker’s comp insurance and I’ve worked in quality management for years, document everything. Appeal when needed and make sure to include documentation. I’m sorry it has been so hard to deal with the insurance. My company really tries to do the right thing but unfortunately many people do try and take advantage of the system. Make sure to know your policy coverage as well. Best wishes. I am dealing with brain meningioma’s and losing my memory is the most scary part possible side effects of treatment. So far I’ve been blessed but I can’t imagine what it is like to deal with. Many blessings to you both!
Leslie you sweet angel, I like you cry when my husband with Alzheimer’s Dementia doesn’t talk to me or makes me feel that I just bother him. I am his only caregiver and spend my whole being taking care of him with no emotion from him what so ever. We are married 56 years but I do not feel like he is the man I married. He has become narcissistic which he never was before. God is holding my hand walking me through this nightmare guiding me along the way.
Hugs
I was touched my your words, I’m thinking about you
Leslie I love you so much. Your empathy is so wonderful and I love your laugh. Jason is the luckiest guy on earth to have you by his side...❤
I also have been making videos to track my sister’s progression. I track it all, good and bad. As for people making comments, if you do not live this with someone day to day, you do NOT know. I definitely think Jason should do what he can and wants to do.
Keep living don’t listen to others we’re all different
I just love Jason SO much, and Leslie too… I pray for both of you every day. ❤️🙏🏼
I love you guys so much! You all are in my prayers. I've been following you for awhile now and when you made this channel recently, I joined this too. I love Jason and You, Leslie, and I can't imagine what you guys are going through. I know Leslie must be suffering from all kinds of things because of her health, her needs, her responsibility, her pain of watching her husband become something he wasn't. Jason is a champ and so much fun when he can be. Leslie, I'm glad you have Jesus, because that's the only way you can make it through this journey. Jason, the same with you. God bless you both.
You two are so special in that you want to educate others and help support other caregivers and patients of Lewy Body Dementia. I can not even begin to know what you Leslie are going through as a care giver and how exhausting your days can be. So happy Jason has some good friends.
Leslee, you are such a Godly example of a caregiver and demonstrate how to love someone who is suffering. Jason I know life is hard and isn’t want you dreamed, but you light shines through your humor and transparency many God bless you and give you more adventures together.
You are both such a beautiful couple you can see the love shine between you both God Bless. LIVERPOOL UKXX❤❤🙏
I love seeing the excitement when Jason got to go for the week with the guys. Just remember this is y’all’s journey. As long as someone is with him for safety, I say go for it. Prayers for your precious family. 🙏🏼🙏🏼
I have followed you for awhile, probably over a year or two. I'm so glad you separated this channel and I will follow it too. I don't recall ever watching the first episodes when you talked about Jason's diagnosis, so I love learning more. You are a beautiful couple that I can tell have had some amazing years and I'm so sorry this is what you were dealt; however, I think God knew that as a strong couple and you his wonderful and loving caregiver, you both will be fine. Just don't forget to take time for you!! Thanks for sharing!❤ I'll keep you all in my thoughts and prayers.
You bring me to tears. You are such very special people.
God’s continued blessings to you both. ❤️🙏🏻 Very happy for this channel.
Im glad these videos show that people living with this brain disorder /disease are still their intelligent selves and worthy of respect . I hope he can get an aid or schedule that will help him with his ADLs (activities of daily living ) like eating.
My mom had dementia then Alzheimer’s over 15 years. She passed away last year. I’ve heard people have 5 years or so I think your the first person I’ve heard a loved one has had it longer. I would definitely have been more pro active on mom’s medication but I trusted her doctors and caretakers. I also would have kept mom more active, once she stopped moving she was bed ridden for three years. The doctors and nurses were shocked mom lasted that long being bed ridden. Hardly any sores. We kept on top of that. The only reason I’m sharing this is because Leslie asked us to share. If anyone has any questions for me I would gladly share what I could. Love y’all, prayers.
No day is a guarantee to ANYBODY on earth. You get the chance to really make every day count. Strongs to you both and keep on keeping on!
You do a great job of explaining the difficulties of this type of caregiver. I was an Alzheimer’s caregiver for my mother and having other people not understanding her symptoms and difficulties, along with her looking “good” on the outside, compounded the misunderstandings of others. The constant do this, do that, from others that didn’t understand made me just become quiet to outside comments and suggestions. Unfortunately those who have not gone through this type of illness just don’t know, so thank you for educating others. You are doing great public awareness work! Hang in there, you won’t regret a thing you do for him!
My husband still makes me laugh. He has made me laugh every single day since we met 35 years ago. 💙
Oh Jason! I love your analogy to a cold for insurance reasons. I praise God for your honesty and openness! Love to you both🙏🏻 11:59
Prayers going out to both of you -each of you with your unique health struggles and at such a young age too! Your head is in the right place and that is with God at the center of your existence. He has big plans for both of you and He never wastes a hurt. God bless you both ❤❤
Jason is champ and will help a Navy friend who is on this same journey and his wife and caregiver 😢feels so LOST. God Bless ALL of YOU!
Do you take a picture, selfie would be good, daily/before you leave the house? That would help you locate Jason if you get separated (his current outfit) and show you together if there is any doubt in the authorities minds. And be a great album some day.
I love your sense of humor Jason you add joy to my life
My brother did a paragliding here in Utah. It was years ago, but he loved it. Awesome news. 👍🏻
Leslie, You have so much going on and your world is upside down. People who would be upset that you didn’t have time for individual calls about Jason’s condition. That is honestly THEIR PROBLEM! Keep focusing on you & Jason. That is what’s most important! You have so many of us who are supporting you and care.
My husband has been having a lot more emotional outbursts lately. Then has no idea why people are upset.
People who are not dealing with this condition have no idea how quickly your day flies by and how honestly exhausting it can all be.
My husband was a USMC Combat Veteran of Vietnam. Then went into a long career in law enforcement. Very calm, very alert and very focused. Now he can’t seem to remember to turn off the water when he’s done washing his hands or brushing his teeth. He also gets upset if I talk to him. He says I ask him too many questions.
I have clocks everywhere, but I need to remember to look at them. Plus, time has just disappeared somewhere....I don't know where I was with my grandkids are so grown. My children are from late 30's to early 50's now....I'm a stepmum of 3 and adopter of 1. But they're so grown up. I get so confused.
Sorry for rambling...thank you for your story!!
I love my chair too 😊❤
One thing i learned to say while I was pregnant and after giving birth. "This works for our family, thank you." It is amazing what people will say, almost jarring. But everyone has a butt hole and an opinion (Lol). Keep up the great work! Praying for you both! xoxo
Go Jason! Enjoy the days. It’s ok to rest. Glad you have friends to take you to fun places to enjoy the outdoors. Thank you for sharing
Thank you for letting us into your lives. I enjoy watching your videos and learning about what it’s like to live with Lewy body dementia. I’m sending you a warm hug. You’re doing great, hang in there ❤
You have a positive personality I love … this not an easy situation but your doing great dued
We love you Jason and we are 100% here for you. ❤
I Love you guys. You both are so Very Special People. You both was made for each other. I Love the way you both laugh. Just keep on being yourselves. God Bless and Be with you both. I will be praying for you both because I know you are carrying a heavy load.
Y'all are so precious. He's a character. My best friend has this same thing. Warm thoughts and prayers on your life journey. Like a Christmas card...great attitude Jason.
Jason you cannot help the changes in your health. Leslie and Jason sending you both lots of love and hugs. Thank you so much for sharing. God Bless you both. Hugs.
God bless both of you. I am praying for you both! My father in law had Alzheimer’s and my mom lived to be 101 but became very senile decades before. I have a lot of fear. I’m 64 but at 59 I was having things happen that scared me and made me wonder if I’m facing normal decline or if I have dementia. You are helping a lot of people with your channel. Again, prayers for you both! Mary in TN
I’ve just started on seeking a diagnosis - I start testing with a specialized neurologist in 07/23 and while these videos are very, very helpful, this whole thing scares the CRAP outta me! I don’t want to end up with that diagnosis but I want to know why I’m going thru what’s happening to me! I’m afraid of putting my husband thru the idea of caring for me plus I’m afraid of ending up in a nursing home. Pls keep doing these - I need you! ❤️
Not sure if you’ll ever know how much your videos are helping me!
Thank you so much for sharing! ♥️ My husband has always been introverted to a degree. But now he will start up a conversation with a total stranger in a store! But at church where he knows everyone, he avoids as many as he can so as not to have to chat with them. 😢 it’s so confusing and frustrating.
Thank you so much for sharing your lives with us. It’s individuals like you that are bringing awareness to others. I’ve only watched 2 episodes and I already love you both. Thoughts and prayers as you learn to navigate through the daily challenges this diagnosis brings.
I have been watching your journey on your other channel for some time...
What I can say with complete certainty is that the love and respect you two share shines through.
The pain you all must be experiencing to have to go through a disease such as this at such a young age, seems so incredibly unfair and cruel. I pray they find some way to slow down this disease or even reverse it, in your lifetimes.......
You are such a lovely couple carry on caring for each other and I pray they find a cure you both special people love from uk ❤
Jason and Leslie, you are such a wonderful couple and I have come to just love you. This cannot be easy sharing all of your life with people but we know you are trying to help and inform others about this disease and thank you! I will continue to look forward to this podcast and support the two of you. God bless you and take care.
Wow!!! That was so much fun for you!!! So glad you did this!!!❤
Why isn't the VA taking care of the medical expenses?
U are so special . God be with u both.❤️🙏
Appreciate very much knowing about the hassle. The insurance company has given you over past illnesses. I’m seeing forms that medical providers are having to fill out pertaining to specifics on all of our records throughout the years we do not want to be denied Medicare or claims because something is overlooked, love to you both and we’ll
see you one day on the other side. Prayers for grace and strength my husband and I have been married 48 years together now because of our Lord Jesus Christ, and he alone can save he saves individuals as he saves those who put their trust in him for forgiveness. That’s how we’ve been married 48 years.
Love your humor through all this. Leslie you have patience and are a very loving person. And Jason I have love and admiration for you and your struggles. You bring humor to all your troubles. You deserve nothing but dignity and respect. Love and prayers for you and your family through all this. Love and prayers always❤❤❤❤.
I thought he said that because you were holding the phone up and pointing at him to film him and so when you said that about looking for him, I thought he didn't realize you were filming and was wondering what looking for him had to do with the phone you were holding up in front of him. Don't know how your video poppeed up on my computer today, but I'm here for it and will be following you and sharing your page. God Bless You
I went through this with the birth of my second child. I was disputing a bill they refused to pay. They then sent me a notice saying they were uninsuring me retroactively because they had insured me erroneously! No kidding. I had had a C-section with complications so every doctor and the hospital that had been paid had to return the money. Sooooo, we ended up suing the insurance company and discovered that the ARISA act that was enacting during Reagan's presidency protected any company that had retirement money invested in it. We went almost two years with having collection agencies calling us all hours of the night and day, threatening us, getting calls from doctors, etc- all the while not daring to pay on these bills because our attorney said it would indicate we agreed with the insurance and therefore would have to pay the $157,000 medical bills. It was awful. Our attorney finally got them to agree to pay. But we could not sue for stress and damages because of the ARISA act. If you read this, write back and I will tell you how to go forward with your husband's medical bills.
What is wonderful is that Leslie and your family will always have these lovely videos to look back o through very difficult times to still come.❤
Thank you for sharing your story with us. It will help so many. My twin sister Husband (brother in law) has the same diagnosis. They have been living with it for several years now , I so can understand a lot of the video since it’s close to home. Sending hugs, love, prayers and kindness to U2, sweet, beautiful people, I will keep following and commenting from time to time. Sending again lots of gentle hugs.❤❤❤
Leslie and Jason I heard you mention how the passage of time seems distorted. This is something I wonder about with my mother and her dementia, just what time, or the passage of days feels like to her, what she remembers or comprehends about what she has been doing for all of those days. Could you talk about this in another video, and what family members or caretakers should consider when planning visits or outings and how to monitor how much we talk to the person or can tell when it is time for them to rest. I agree that insurance and any of the healthcare situations can sometimes make all of this worse instead of better.
God Bless you both, thank you for being open to sharing your story, i will be keeping you both in my prayers😊xx
❤ I love you both so much! You Leslie + Jason, are pioneers in teaching others!
Thankyou so very much for these precious moments ❤
Leslie, just a suggestion. Since some people don't read the description box, it might be helpful for you to pin a comment at the top of each comment section when you repost an old video. That way newer subscribers especially won't be confused and think you are posting a current update.
I just stumbled across your page yesterday. I have been watching and can't imagine what you both are going thru especially him at such a young age. We always think this is an old person disease but not always the case obviously. I will be praying for you both on this journey and will keep watching . Take care 🤗
Some people don’t know how to react and be around people who are diagnosed with different things. I find the best thing to do is just pick up and be honest about it. I would think that most people don’t want to cause any harm, they’re just not knowledged.
Love you two so much! ❌⭕️
I love you two. Keep telling your story.
You all are amazing ❤ My mom had Alzheimers and she was great but mean and a bit scary...God Bless you always ❤
Thank for sharing .
And I appreciate that you can pack so much valuable information into manageable videos. I sometimes can’t commit to very long ones. .
❤❤
Thank you for sharing your journey. My grandfather had Lewy Body Dementia and your videos make so many things clear, now. Wishing you all the best.
My heart goes out to both of you!!! Was this recorded a long time ago because I have been following your journey for a long time? You both, as well as your family, will continue to be in my prayers!!
You are a beautiful couple. Jason is so aware right now. Live your life to the fullest.
You are both so brave and in love. Bisous
Thank you both for your channel. It’s so helpful. My mom has “early dementia.” I’m learning so much!
What an awesome couple no matter the circumstances! Stay strong and blessed be.
Thanks for sharing your journey . glad he had a nice trip. Please keep sharing
Oh how I can relate to the lack of talking, that’s my husband with frontal lobe Dementia. He’s even yelled at me and said “Shut the F up!” Us Caregivers put up with a lot. Yeah they can be funny too. I never know WHO I will get any given day or time. My husband too has a short attention span. And he has problems using his phone, checking his phone, following through with conversations with people in text on his phone. I just found you guys tonight going through your videos now.
Jason your awesome! You have a beautiful person
We have totally ran into the insurance deciding on if we even get medication coverage before we could get the meds. Said it was a costly specialty drug that may not help and my dad is elderly so how beneficial is it really to try. So frustrating, he is worth the fight..
I just love y'all ❤🤗❤
I'm so thankful you're doing this and sharing your experience. We are going thru this too with Alzheimers. It feels like support from afar!
Love you guys!!!
Your a very sweet couple. Your doing a great job... both of you!
Y'all are SO cute together!
I don’t know you, but I went through this with my inlaws. I think it would be 1000x worse with my husband (which could happen. ) But your stress is palpable. Please find yourself more support in whatever form needed. You are a shining example of all the red indicator lights flashing all at once. put your mask on first. Get help!
You just keep being you, Jason.
You're doing pretty good considering everything each of you are trying to do. The insurance companies and medical system is crazy now. It is sad. ❤ love you both.
You guys are awesome your doing a beautiful job helping your husband. 😊
I hope some of the responses from people reflected their uncertainty, and not any judgement or ill feelings. Sometimes it can be hard to know the right thing to say when a friend is going through something, and it takes time to figure it out and get comfortable. Now that people have gotten used to the information, and have had a chance to be educated, I hope that aspect is better.
I agree about the insurance coverage. What a toxic work environment it must be where employees are trained to deprive deserving people. I hope things are better now.
Conversation with my husband is non-existent. He hears what I say, but wants everything repeated. He doesn't answer questions. He rambles off on tangents. He is goofy or indifferent, and lacks empathy. He randomly interrupts conversations. When he is upset, he lashes out. Pass the salt is what we are now reduced to.
Your feelings are not silly. Angry, sad, disappointed, exhausted, worried, frustrated, lonely... they are all valid and you are not alone. I hear you.
Treating someone the same as always depends on their stage, obviously. I found it was helpful for people to know so they didn't think ill of my loved one who was perhaps saying something odd or behaving strangely. I found people were more patient when they knew.
Thank you for sharing your experiences with LBD. I can not recall if Jason has ever talked about having visual hallucinations. What has been you experience with them or without them.
I saw beautiful eyes, twin to my brother..beautiful eyes and smile.
Oh you guys may already do this but for some writing things down in various places helps . Like have you eaten ? Or just the word stop if he gets to the point to where he wanders , a big calendar with day and date individually not like the usualy calendar ..one goal here or there . Id be interested to hear what tools you are using ?
❤❤❤love u two ur both so real fantastic for sharing ur life
Insurance is a total nightmare. I had to fight to get cancer treatment. Plus during treatment my life insurance I'd had for 20 years got canceled.
And I to experience that issue of my husband not wanting to talk to me. 11:05 It was heartbreaking to me, because I thought he had stopped loving me. We had been childhood sweethearts, and he was my best friend at the time I did not know that he had dementia because he was a chemical engineer, and his memory was nothing, like what I thought dementia was like meaning Alzheimer’s. He had FTD, which started at age 50 I so wish I had your channel back then I just didn’t know he was sick.
Praying fair you both!
You are a wonderful couple praters🙏💕
Love you guys
I love y’all so much ❤❤
Leslie I just read an article about traumatic brain injury possibly going on to cause dementia? Is this what happened in Jason’s case? Terrible that his was recognised and treated appropriately. 😞
Love you two💕
Jason you just be you 😊
🙏♥️🙏
I just want to know if he is on medication if that would make him tiered
Also , jason do you find writing easier or harder than speaking?