LIVING WITH DEMENTIA EP. 10 | DECLINING & HOW WE ARE HANDLING IT
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- เผยแพร่เมื่อ 1 ก.ค. 2024
- LIVING WITH DEMENTIA EP. 10 | DECLINING & HOW WE ARE HANDLING IT. 2/12/22 Jason is answering your questions today! Want to help us keep making videos? Donate on Paypal: www.paypal.com/donate/?hosted...
For the lady that’s not comfortable watching Jason talk about his dilemma, this channel is not for you! This isn’t about you!
🌬🤗How can Anyone be so ....😢 there are no words. Except what you said...this Beautiful family ( Channel is not for you 😢
This dilemma effects both of them. I think they handle it quite well. This is a perplexing disease.
Thank you for sharing your journey.
Amen
Absolutely agree. This isn’t a place to troll so roll out. These people are going through hell and there’s sadly more to come. I can see the small changes in each video. My Aunt has end stage 7 and this disease is no joke. It’s horrific and it’s incurable. I’m so happy right now for them that he isn’t bed bound with limited vocabulary and in and out of reality. He can still ambulate on his own and communicate well and this series of videos one day will be treasured by them to look back on the better times. She as a wife RN and caregiver and he’s handling this pretty good so far. There will come a time no one knows when as this is an unpredictable disease but a time that he won’t be able to walk on his own or converse. So treasurer these times as sadly you’re on limited time. Keep up the great Jokes Jason!!!
Oh my gosh, the child like part! My husband can't be left alone so shopping is extra fun. He moves so slow, loses track of me even when I'm right in front of him, gets tired easily, needs help getting his seat belt on.... The list is getting longer by the week. I'm a retired night shift nurse and have plenty of experience with dementia patients so I'll be Harlan's caregiver throughout this journey. Lots of changes the last few weeks. Thanks for sharing your journey. Makes me feel like I'm not alone.
Jason has the most incredible outlook on his disease. He’s so matter of fact and accepting of his situation. That’s what having faith in your life does for you. You both are such wonderful people! ♥️🙏🏼♥️
what a beautiful example in honoring the marriage commitment with love, understanding, compassion.
My dear young lady, both of my parents had dementia, my father specifically Lewy Body, which is soooooo very difficult. I know you love your husband and your determination to take care of him thru to the end. Care givers often give out before the one they’re caring for gives out becuz of the stress. Please, get all the help you can and consider memory care. I was forced to put both of my parents in memory care towards the end. I couldn’t do it anymore. This happens to so many. They’ve promised their loved one to keep them at home and then circumstances change that. Your husband loves you and wouldn’t want you to kill yourself taking care of him. Been there done that. Putting my parents into a home was the worst day of my life. But I was there often and besides that the staff is fresh for every shift, where at home you don’t have that luxury. Praying for you both.
My Dad had a traumatic brain injury from a fall in 2016 after the loss of my Mom. I was his sole POA financially & for his healthcare needs. Even though he went to assisted living then memory care, a VA officer who oversaw his aid & assistance benefits told me to take care of myself because he had seen many caregivers get ill. I blew that off, along with some needled tests for myself. I wish I had listened to him. Two yrs into the stress I had to have 3 surgeries on my colon, then the pancreas for tumors. It’s one of the hardest paths to walk. I feel for her…I hope she can keep Jason home but it’s not always possible and certainly not shameful if you can’t.
Your response brought me to tears. I’m caring for my husband with Alzheimer’s while working 2 jobs to keep us afloat. I’m trying to keep him home to the end but your comment really hit me. Thank you for your transparency, super helpful for us out here in the caregiver trenches.
@@jamiemcd8519 I had joined a support group for those caring for family members with dementia. I felt so supported and learned so very much. It was a life saver for me. I can’t imagine tho taking care of a spouse with dementia. That’s got to be doubly stressful. Hope you get the help you need. All the best to you and your family.
I could see that this is getting a lot harder on you Leslie. Confide in a close friend. A good listener. I saw you were on the verge of tears. I feel for you.
His vocabulary is amazing. I’m so glad he is doing as well as he is. Take care of yourself.
Leslie, you mentioned that there's no reason for you to ever put Jason in a memory care unit because you're a registered nurse. However, keep in mind that these types of facilities have at least three shifts to cover all 168 hours contained in a 24-hour, 7-day week. At some point, you'll be unable to take care of your dear husband without ruining you physical and mental health. It nearly killed my mother-in-law to take care of her husband before she relented. The same thing happened with my father taking care of my mother. I'm just saying that you may need to give yourself some grace and leave open the possibility that the best arrangement might be one in which you're not the sole or primary caretaker. Peace and blessings to you and your family as you navigate these troubled waters!
I agree wholeheartedly! If I ever start to get dementia, I am making arrangements for other living situation, so my caregivers are not my family members! I can be happy to visit with them, but I could not live with having someone that I love caring for me all the time. It's not up to them and never should be. That's what the facilities are for!
I am 55 and was diagnosed with dementia in 2018. And it’s hard but easy. 5 yrs in, I’m now seeing changes. And I have no support angels at all. I’m winging it as I go by. I’m starting to forget things and my anxiety and mood changes have shifted in the bad direction. But I just go day by day. Without any support. So Jason you are blessed for the wife and family you have. Ty for making this channel. All I can do is journal my dementia war and hope somebody will find me and help me. Bc I don’t want a nursing home. I’ve worked in those horror places. So God bless ur in my prayers
My father had alzheimer's, I cared for him at home. I know how hard it is. But now at the age of 66 I have been diagnosed with alzheimer's myself. I feel like I'm trying to teach my family on what they need to care for me. I was a nurses aide in the hospital and I did home care. I would rather be the caregiver.
Thank you for posting this. It's so important for doctors, and families to finally accept this disease IS GENETIC. For some dementia, u can get tested for the gene, others they say it's 50/50 if your parent (s) or grandparents had dementia. I'm so sorry about your diagnosis. I will pray for it to be either super fast for you, or a extremely slow developing disease. All 4 of my grandparents had some form of dementia. ( Back then it was called senility or Alzheimer's for evthing) And it scares me as I get older and I think if my son in his future. Wanted to pop in to tell you that your struggles are so important to share and I'm thankful for you. God speed
I’m sorry to hear that, Cheryl. Best wishes.
Documenting your journey here is much like journaling. Helpful.
You both are so strong. I love Jason and his humor.
My husband was diagnosed with Lewy four years ago in April. He was still 59 at the time. His doctors expected his dementia to be full-blown by the two-year mark post-diagnosis. Apparently, God had other plans, because he’s still highly functioning--working even. Big YAY for meds to manage moods and anxiety! 🥳
There’s a very lonely aspect to being a Lewy wife. Ehug, Leslie. I SEE you.
that's amazing bless you
I know this comment is older, but what medications are working for your husband. I am in the same situation with my husband.
@@jenniferw1595 I’m sorry. It’s not a fun club to be in. My husband takes the generics for Klonopin and both fast-acting and slow-release Effexor. He has recently had an increase in the Klonopin and slow-release Effexor. His doctors also have him on melatonin at nighttime and B-12 and D3 in the mornings.
Thanks for sharing! Both of you! My husband is a stroke survivor, I’m his only caregiver. He has aphasia and apraxia so I appreciate the insight from Jason on what’s going on inside. I know my husband understands everything but because he can’t speak I wish I knew what was going on in there! God is good and we wake up every day thankful.
I love how you two are so open and real about the dementia. I love Jason! His humor and one liners are amazing and it shows me who he was before he got dementia. Leslie, you are amazing and your love for Jason is so real. Just know that you are loved and so many of us are praying for both of you!!!
Leslie you are an amazing wife and mother. The way you support Jason is wonderful you don’t show the stress you are going through. I’m so glad you came on at the end and shed a tear that can help relieve your stress. Dementia is awful look what it takes away from people it’s so cruel. I send you and Jason lots of love and hugs. Xx❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻
💗🙏💗🙏 You’re a gem! I’m not a caregiver but have been around family with dementia, thank you for your honest and gracious sharing. You are in my prayers among many others I’m sure! Vent here my dear please! You’re so brave and yes, our Lord is with you every second!!!💝
I am so glad I waited to watch the end of this video to hear you. I am a caregiver too. You can't be happy all the time. I can leave my husband for a few hours which helps. I have a bunch of friends I see off and on. I don't worry about stuff that is not important to me. And yes,I get angry sometimes. It was nice to hear you talk candidly. We are all human . Take care of yourself first.
I was diagnosed with Alzheimer's in 2017 and LBD in 2018. I share all of the same symptoms as Jason. Mine is slowly progressing too. I like what the doctor told you about Jasons illness being slowly progressing. I consider mysel an intelligent person and I am (was) totally functional. Now all I do is sleep most days my mind lives in a fog. My greatest frustration is finding a neurologist who will listen to me and stop telling me my problems are caused from anxiety. I lost my 1st neuro, so I am ready to give up in finding one who will help. I think I will stick with my PCP who has helped me more than anyone in the medical field. Thank you for doing what you are doing. You have helped me tremendously. May God Bless you both.
Going through the Sam as you guys, my husband is heading to the late stages , of LBD 7 years from diagnosis, love watching you guys dealing with the irrationality of this terrible disease. Sending love and best wishes from Ireland 🇮🇪
May God bless you
Bless your heart. Prayers for you and your husband.
🌬🌻I been through this is a full time CNA. When I was working.
I took care of my Mom
She passed 2021 and now I'm dealing with my 94 year old father. Stay STRONG
🤗🌬🌻
I’m so sorry you have to go through this….just keep reminding yourself of God’s many promises..Isaiah 43:2
He is for you!🙏
My mom had dementia since her early 60s. Very active high IQ but she realized something was wrong early on. She kept up with her crosswords.. puzzles...piano until she just couldnt anymore. I was her main caregiver. In her early 70s she fought anyone who would offer help. This disease is so hard on the caregiver. Please make time for you. Join a support group. My prayers are with you both.
I am a caregiver for my 87 year old dad who lives with me. He has brainstem calcifications causing memory loss, executive tasking issues, hallucinations, paranoia and so on. This is a difficult and often heartbreaking road. I understand your feelings and wish you much comfort and peace. Thank you for sharing.
Being a caregiver is one of the hardest things a person has to go through. I’ve been there and done that, in a different compasity but I do understand the daily care and what it takes, it is exhausting, physically and mentally. I pray God will continue to strengthen you and help you to get through each day with grace. I pray God will touch Jason and keep him mentally stable and healthy as long as possible. May He keep His angels around you both and guide you both through each day with ease. May He give you both that wonderful peace that passes all understanding. Much love to you both.
Thank you for sharing. As always love Jason’s humor.
One reason he is so upbeat is because of her positivity, I believe. God bless you guys! Thank you for being brave enough to share your journey.
Leslie, many of us have lived or are living your experience as a dementia caregiver. Our love and prayers go with you. You are a strong Christian woman. God will get you through this. It's hard to understand why this is happening, but God uses your struggles to bring His plan into action and to be Glorified. God bless you both.❤️🙏
Oh my goodness, Leslie, thank you for sharing from your heart there at the end! I'm a pastor and a night nurse at a LTC facility. Not in your shoes but I do have a very good idea of what you must be going through. I often remind our staff when they complain about erratic behavior of some of our dementia residents: "Hey, just remember you get to go home in 8 hours. Many other caregivers live with and care for their loved ones with dementia 24/7!" So glad, Leslie, that you and Jason know the Lord. He will get you through this! "Casting all your care upon Him; for He careth for you." May the Lord continue His blessings upon you both!
Nothing is impossible with the Lord, Praying 🙏🏼 for supernatural Healing within Jason ❤
Leslie - I am in awe of you! Admire is not a strong enough word. Your love for Jason is very clear. I know more than I want to know about dementia. My Mom my FIL (now deceased)and now my two older sisters have all been affected by this horrible disease. I am not their caregiver but of course I am part of their everyday life. Its very difficult to see their steady decline. By the way Jason sure can be entertaining on these videos. Hugs and prayers for you both. Jen
Leslie,
I'm just a follower of your channels. My mom had dementia. I so understand you. Being truthful is not disrespectful. Your love for Jason is so evident. Your love for each other is beautiful! God bless you both on this hard journey. God is good even in the hard - I know you know this. I'm so glad you both know the Lord!
I lost my mom to fronto temporal dementia and my dad is now dealing with vascular dementia. Dementia sucks, and I am happy you are able to share as I find it very isolating. Thank you.
YES!! I vote the sail boat! Take Jason shopping at your local hobby store and get a remote controlled sailboat and get him out of the house to sail it at a local park lagoon or? We had my mom here for 2.5 years with LBD and we tried to keep her mobile and functioning on a happy level as long as possible.
Just going for strbucks was a big deal. Going for an ice cream, she loved sweets and was just about all she would eat so we let her. She was very happy. I wish I could talk with you in person and tell you our story in detail, I know without our Holy Trinity my husband and I wouldn't have done well.
Jason may not get the big sailboat but he will have fun leaving the house, going somewhere to do something fun, maybe a quiet picnic and sailing around the lagoon. Prayers and blessings for you both.😇⛵
Thank you for bringing a wave of light to this disease. I took care of my mother for 10 years. I wish the internet was as open in previous years for caregivers and patients as it is now. I love the fact that we are actively talking about dementia
You two are so blessed to have each other. I was a caregiver for my husband who passed from cancer. It was all consuming and exhausting. I’m glad you have loved ones who will help you and give you a break when you need one. The love you have for each other and your deep faith will keep you strong to the end. Thank you for sharing with all of us who feel like we are your friends. God has blessed you both with so much in life and continues to bless you during this journey.
Jason is not old, but the book "Every morning the way home gets longer" is the same story with both my parents. As a caregiver sometimes you get tired physically, emotionally and spiritually, but you get up the next day and do it again because you love them
I have a terminal illness and would answer the question of what makes me happy just the same as Jason did. Sometimes just getting through the day has to be your happiness - which is, and will be, redefined as illness progresses. Also, the expectations for outright happiness gently fade away, so it's not missed either.
God bless you❤
Wow! Amazing grace! The uncommon love you have for Jason is precious! This is the first video I’ve watched on this subject and couple…I pray for continued strength & peace in the journey. Philippians 4:4-9
Love Jason's humor!
Jason you are awesome, your spirit is so infectious and you make me laugh! Leslie I admire your strength and I cried with you xo
Oh sweetie you are an amazingly strong woman and I know having Jesus by your side he will continue to watch over you and Jason. I was a caregiver for my father for almost 6 years. Of course it’s not the same as what you are going through with Jason but I totally understand the struggles us caregivers face. I will continue to pray for you and for Jason. you got this girl! Sending you love, hugs and prayers.❤💞🙏
You are both amazing and inspirational.
I see the love pouring from the screen. Bless you and Jason on this incredibly difficult journey. Love from Ohio! 💞💞💞
Maybe I’m a simpleton, but I see Jesus working through Jason when he’s speaking. It’s heartbreaking and also beautiful. I’m a caregiver too. The Lord guides all that I do. Sending all the love to you Leslie and Jason and so thankful that you know the Lord too. ❤
Leslie
Your right if your not in the position you don't know how hard this is. Life throws us unexpected curves in our lives
And alot of times it is devastating, such as cancer or dementia or some other horrible disease. My heart goes out to both of you.and you are in my thoughts and miss you guys when I don't see you on U tube. Stay strong as God is looking after you both. ❤❤❤❤ fr. CANADA
AMEN!!!
I visited a lovely couple for tea with 2 little girls I nannied once a week. The gentleman seemed to develop Lewy Body Dementia rather quickly which was very challenging. However, he could still PRAY beautifully over our meals! 🙌🏼🕊🙏🏼
This is so raw and real. Alot of his answers resonated with me as I am dealing with lung/brain cancer. God bless you both. In some ways I understand what you are going through.
🙏🏻
Bless you and your poor body as well. I pray for your fast healing, or peace and no pain, if not. ❤️
God Bless You!
I think talking on the channel is therapeutic for Jason and I'm sure it is for Leslie.
🙏 ✝️JESUS IS THE ANSWER♥️🎚🙏 ALWAYS & FOREVER 💕
I love how you both laugh together and at each other. Thank you for sharing all that you do. xo
Taking what this world gives you and helping others during your struggles is the most selfless act a person can do.
Praying
My husband was diagnosed 19 years ago and is still walking and talking, although he doesn’t make sense now. But we did multiple experimental meds from our Neurology Dept. All meds were free as well as testing. It gave me many years with my hubby. Best of luck!
I’m crying with/for you Leslie because I have some understanding; my late mum and I cared for my late Dad during the 20 years of his battle with Vascular Dementia. He passed in 2005 and I still remember now how unbelievably difficult, frightening and shocking it all was. You have to live and care for someone with dementia to truly understand how it is 24/7. We didn’t reach out for help because my Mum was old school, things reached a point where he had to go into hospital for other health reasons and spent the last 18 months in a home. He used to say to me years before he had dementia “you promise you’ll never put me in a home!” At that time I said oh you won’t need that Dad and I still feel guilty and sad that he did end up in one. But I used to visit 3 times daily 7 days a week at varying times to see him and check he was being cared for properly. Whatever you do please ask/accept all the help and support you can get because as much as you love the sufferer you need some back up and to talk about it otherwise you’ll find it harder still to mentally and physically cope to care for yourself let alone your loved one.
I pray for a significant breakthrough/better treatment and cure for these brain diseases as soon as possibly!!
Lots of love to you both 🥰🙅♀️🙅♀️
I love seeing Jason in the videos and hearing his perspective on his life and the issues he faces.
When my family member became paranoid and we were chasing him around the garage and hunting for him at night, we realized we could not keep him safe and comfortable (even as a nurse). VA hospice was wonderful. In retrospect, we should have considered it sooner. There may come a point where one person just can’t do it, even with support. Sometimes it’s better to acknowledge that the best care might come from a much larger team.
I worked in a long term facility with alzheimers a dementia residents, they're there because no one was there to care for them. It is so sad for them I bonded with them it was tough to see them go so slowly but so fast at the same time. Kudos to you and your hubby because he has a great support system. Just breathe!!! No boats😊
I learn from hearing about your journey. Thank you for being willing to share for the benefit of others. Thanks Jason and Leslie!
The last few minutes all I can say is amen! I’m in a very similar situation and understand how you feel, and unless you have been a full time caregiver to a family member you will never know how hard it is.
Your videos help not only those who are in the midst of their journey of living with dementia and those who are giving care, but also benefit those of us for whom the day-to-day experience has now come to an end but who are still learning about and coming to terms with what we lived through. Being able to inform and advise others in an honest manner about the trials and triumphs of this chapter of our and our loved one's lives is a blessing and an aid to healing.
My husband and I are in a similar situation.Thank you for your honesty. You are so correct about , other caregivers understand. We are managing life for two adults. Friends are so important.
Your patience is amazing. You’ve both been blessed with each other. God bless you.
My heart goes out to you all. I am in total awe of you. You are dealing with this with such grace and I’m so so glad that your faith is showing you the way. This is an cruel disease My Mom had dementia and Aricept was a blessing for us. It slowed the progress for her and she lived 10 years before her quality of life declined completely and even then she knew all of us. God Bless you!❤️
You are the sweetest lady! Your husband is so incredible blessed to have some wonderful woman like you that takes care of him. My prayers are with you and your family.
Bless you and Jason!
Caregiving is hard. It's hard to watch those you love decline every single day. It's important to have breaks and to talk to someone. It's not complaining either. I admire the way that you and Jason put this out there for others to help them through the same or similar journey. Thank you for that. Hang in there and may God bless you both. Oh... I wish I had a sailboat. I would at least take you and Jason out on one!
Bless you and Jason 🙏❤️🙏
I visited a lovely couple for tea with 2 little girls I nannied once a week. The gentleman seemed to develop Lewy Body Dementia rather quickly which was very challenging. However, he could still PRAY beautifully over our meals! 🙌🏼🕊🙏🏼
Praying for you and Jason! 🙏🏻
GOD BLESSES YOU AND JASON.
Sending up Prayers for you and Jason, and your family. Thank you for sharing this journey. As a social worker I know you are reaching more people than you know, and blessing people, and giving them knowledge and strength. I am so glad I found your channel. Thank you for keeping it real, and just being the lovely people you both are.
My family is in Florence and cabs and ubers are non existent. If you go, please have a car and driver already hired.
Thank you Leslie and Jason! Hugs and love from Georgia. ❤
Hugs and prayers for strength as you both travel this journey together.
Jason Thank you for your years of service. You both are amazing.
I was in tears with you at the end of this wonderful video.
Thank You for everything you do. God Bless both of you. 🙏🏻
Praying for you and Jason.
My heart was breaking watching you at the end . Sending you lots of hugs xxx
You are doing great! Y’all are such an inspiration!
Prayers for you sweet lady.
thinking and praying for you everyday, Leslie
God bless you!!! I'm so glad your faith is so strong. Love you both and praying for you both as well. ❤
Thank you for sharing your heart and your love of Jesus! ❤
Love you guys. You are doing so well at living life with joy and doing the best you can for the situation you both are in. Bless you!
You two are an inspiration! My prayers are with you.
Thank you for sharing so transparently.
Thank you for sharing.
I am glad that you do these videos as it is very helpful to many people. I love to hear you both talk. You are two sweet people.
Jason you are a inspiration to me. Thank you
Sending love, hugs and continued prayers for you both , take care you are so brave xx
Leslie and Jason, thank you so much for sharing your experiences with the world. I understand the difficulties you face as a family, as my husband has ALZ (age 65) and I am his care partner. We recently sold our business to focus on living life the best way possible in the time we have left. You are my inspiration for being a smiling care partner who still loves my husband dearly. Thanks again, keeping you both in my prayers.
Bless you both. I’ve been a caregiver twice and it is ROUGH. My prayers are with you. 🙏🏻❤️🙏🏻
God bless you and Jason and your family!
1:00 a.m. on 6/17. You are both amazing. My Mother took care of my Dad for 6 years after he was diagnosed with Vascular Dementia. She already did a lot for him with his other health problems. I would take care of him for long weekends occasionally, in order to give her a break. That would wear me out. Thanks for sharing your journey with us. Love you guys.
Your message at the end is so spot on!!! Sending you hugs and you are never alone! Hang in there my sister...Pat
I love you both. Praying for strength, guidance and peace for you guys.
Thank you very much for sharing your journey. God bless you both and your family. 🙏🏻🙏🏻🙏🏻
Thanks Jason, everyone is a whole person very beautifuly said!
No one should ever be treated differently no matter what the challenge.
I give both of you a lot of credit sharing your journey. It’s got to be hard being the care giver. God bless!
The end of the video hit home. If you are not in this, you don’t have a clue. No one should have to go through this….
Please keep posting. So appreciated
Leslie, God Bless you for the strength you have and more importantly your Faith. I know that life can be so difficult and I'm sure you and Jason never imagined going through something like this so young in your lives. My heart goes out to the both of you but I can see how you are hurting and I pray that God continues to give you the strength to teach others how to deal with being a caregiver and doing it with such kindness. Jason is a wonderful man and only God knows why you are both dealing with this but you are doing amazing. Love your channel and I am keeping the both of you in my prayers for strength during this challenging time of your life. God Bless you both!
You both are a blessing to all of us…thank you for sharing your beautiful lives with us…I am praying for you both every day…God bless you both!!! ❤❤❤
Jason you are doing well! Great outlook! God bless!
Jason sounds awesome and still happy! You're inspirational ❤