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! ♥️🙏🏼♥️
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.
@@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.
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.
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
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.😇⛵
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.
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
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
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! 🙌🏼🕊🙏🏼
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 🇮🇪
🌬🌻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 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.
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❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻
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!
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.
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!!!
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 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.
💗🙏💗🙏 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 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.
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.
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.
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
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.❤️🙏
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’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 🥰🙅♀️🙅♀️
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!
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 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.
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
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 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.
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
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 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! 🙌🏼🕊🙏🏼
Jason has not lost his sense of humor which is nice. I feel for you that this is so hard for you. I know it's now easy. You are such a loving, strong person. I'm glad you have some short trips this year. You do a good job of letting people know what this is like. I have a good friend, who came by the other day to pick up a picture I restored, and she told me that it's getting difficult with her husband as he has dementia pretty badly. I felt for her at that moment. I know this isn't easy for people.
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.
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!
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.
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.
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!❤️
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.
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.
My husband, Shane, was injured in 1994, sustaining a TBI. In the past couple of years dementia is becoming apparent. We can totally relate to all of the consequences you have been experiences you describe. I, Pat, have been so humbled by my husband's patience and acceptance of his condition, as it appears your husband has done as well. Sometimes I feel as if I am in worse shape, mentally and emotionally, than Shane. I can't leave him alone for very long and sometimes feel very isolated. But when I feel overwhelmed I pray and read some scriptures and it renews my spirit enough that I can keep going one more day! Its a blessing to care for him and is helping me to increase in patience and thankfulness. Thank you for helping us see that we are not alone in this journey! God bless you both.
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.
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.
Honey I love you so much and the love you have for Jason is so, so special. I am so happy when I see new vlogs from the two of you. Stay strong in your faith in God and on days that are really crappy for you He will carry you💕💖
I am in tears, you have such a beautiful soul and as an older woman I am in awe and admiration of your wisdom and grace. The love you two share is so beautiful to see. I pray for you both sweet girl, I truly wish there was something i could do to make your journey easier. Please know you are both such a blessing to so many. ❤❤❤🙏🏻🙏🏻🙏🏻
I just watched a documentary about Robin Williams. He had Lewy Body Dementia too. It took his doctors a long time to diagnose it. I guess people are more aware of it? They did not know for a long time. I'd never heard of it before you and Jason.
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.
I know my comment comes long after this video was posted but I wanted to share a verse I just read this morning. Psalm 138:3 On the day I called, you answered me.; my strength of soul you increased. ❤
{{{Hugs}}} 🙏🙏🙏 Dementia in the elderly is hard but Dementia in the season of life where the norm is living life to the fullest with grown children and grandchildren and friends; dementia is brutal! ❤❤❤ Praying for you both 🙏 🙏🙏
As someone who works in an Al/MC facility I never see the decline. I usually see more at the end. Thank you for sharing and helping me understand. This way I can be more understanding and even more compassionate towards my residents and their families. Prayers
Wow! What an amazing women you are. I was a caregiver for my brother for 14 years. He was attending college to be a doctor when he was drafted to Okinawa. He never married or had children. As a Navy wife after my husband retired we went to visit him. He was living like am animal on the streets. We brought him home with us and never looked back. He did get some help from the VA, but b/c his records were burnt in the St Louis fire we could not prove anything. I like you tried to give him the best last years. We learned more from him about his illness and did not know God was preparing me for phase 2 b/c now my husband is showing signs and at the beginning stages of illness.Believe me when I say there is a special place in Heaven for caregivers like you. Hang in there, the angels are there with you.
I’ve just found your channel and appreciate what you are doing! My husband (carer)and I live with a dementia patient (step parent) plus another parent, and my husband is sooo stressed! He can’t really on his siblings, as they have shown they are unable to handle it, also the boundaries with safety. Thank you both for sharing your experiences/journey, as it is like the elephant in the room and nobody talks about the issues with dementia!
Thank you both so much for your selfless kindness, for sharing so that you can help others in this situation. My sister was just diagnosed two days ago LBD. This information is so valuable.
I took care of dementia patients for 21 years. I was in a private small very family oriented facility we only had 24 patients. Lewey body and frontal lobe are the hardest because they seem to hit the young. I saw a lot of brilliant minds Doctors lawyers engineers and you are so right when you say people treat them as stupid that also angers me. They are exactly the same brilliant people as they always were they just have a few hurdles now. I took care of these same people for years they became family their family now close friends. One thing that we learned in taking care of ourselves was grace and space. Always give yourself the grace you deserve and take the space you need. You are 100% right when you say unless you do this you can’t understand. It’s so hard to find that boundary of taking care of him and keeping him safe and still letting him have some independence it will take a toll. I have seen mood changes happen in a split second and redirect sometimes works sometimes not but at that point it’s so hard. My heart breaks for you and Jason I am praying for you both. But remember grace and space practice that repeat it to yourself and you will be surprised how much it really does help. Along with giving my entire career to these sweet people I also took care of my mom that was demented she lived with me. I know exactly where those tears come from. Gods speed
Jason isn’t just wickedly smart he’s obviously compassionate & selfless with a heart that wants to give more than he’d ever consider taking. All of those traits (I believe) are what is keeping him from declining more quickly. This channel is a blessing in so many ways. God Bless you both and thank you for being so authentic ❤
I was a caregiver for years taking care of my Mom. You feel so alone. Some friends told me, you're strong, you'll be fine and then they would tell me about their lives. There were nights my Mom would take her #2 and wipe it on herself, the walls, the rug. It's true. You become the person that watches over their every need and reminds them of just about everything. People that aren't caregivers will never understand. We aren't complaining. We are letting it out so we can be the best we can to give more of ourselves to our loved ones. Thank you for all you do. Thank you for letting us in...but most of all...Thank you for keeping it real.
I was a caregiver for years in long term care. My heart breaks for you but it is also amazing to see how you are sharing your story with others. So often people dont understand how these diseases impact not just the person but the caregiver. I really hope you continue to take care of yourself too. It is so hard and how much you care comes through so strongly. Just hope you take care of yourself and your mental health too. Thank you again for being so brave and sharing your story. Keep laughing and loving❤.
Jason sounds so "normal" in that he follows conversation perectly, his linear thinkingis spot-on too. He must have been highly intelligent before the diagnosis (sorry I haven't followed every video). I would never know anything was wrong with him. So god bless in your journey. I wish I had the Mrs's patience.
If Jason would like to tie some flies, I’d love to see his hobby.❤ We have to protect our loved ones so I’m glad you came home and there wasn’t a bigger fire.
Oh my goodness Leslie, you are such an authentic and genuine soul. Thank you, thank you and thank you again for making these videos. I appreciate and am grateful to both you and Jason for allowing us to have a snippet of your life with Lewy Body Dementia. This disease is just so horrible and unless someone is going through it, they have absolutely no idea just what it is like. With me, it is my father who I was caring for, for 11 years with the last two years of that time, being full time. I just couldn't do it anymore because he wasn't my husband, he was my father, so there were many things that he just would not accept from me being his daughter. Your description of having to remind Jason to shower, resonated with me so much because that was one of the issues that I was dealing with. Dad just wouldn't listen to me and said I was being "bossy". He lost his driver's license at the beginning of the last two years that I was caring for him and it angered him so much and was darn set and determined to find out who reported him. Well it was me that reported him and if he had known it would have made life more unbearable than it already was......and that was the least of the issues. I was able to get him to sign a Power of Attorney so that I was able to make decisions for him about his finances, his care and everything else. The plan was to have him come and live somewhat independently in a little bungalow that we have on our property rather than in his own home, alone. It took months to navigate all the ways to deal with having him think he was making the decision. He was getting more and more combatant, verbally abusive and non-compliant with me and after five days of living in his new surroundings he insisted on going back to his own home, "to clean and take a shower". I complied and then I wasn't able to get him to come back. It was a nightmare and I was completely done. When the home care nurse came the next morning and dad wasn't there and there was me in tears and at my wits end and saying I couldn't do it anymore, she set the wheels in motion for Adult Protection to go into his home and take him into care. This all happened just back at the end of September 2022. He had been diagnosed and reassessed 6 months after the first diagnosis and he had declined from moderate Lewy Body Dementia to severe Lewy Body Dementia with Parkinsonian Symptoms. He had Home care for two years and everything was documented about him and how the disease was affecting him. In addition to all of this, my dads age is 96 so he is also dealing with all sorts of age related issues. He will not accept that there is anything wrong and thinks that everybody is keeping him in care for "no reason". I have been the sole caregiver for my father and now I am dealing with his youngest sister making her own diagnosis about him by saying that there is nothing wrong with him and there is no reason why I can't care for him at home or have him live in his own home by himself. She says, "there's nothing wrong with him and he is as bright as a penny", and she makes that observation when she visits with him for 20 to 30 minutes at a time every couple of weeks. Can we say, "Show timing" at it's best?????? It doesn't matter how many times I have explained this part of this disease to her, she still just doesn't get it. My aunt is only 10 years older than me and 20 years younger than my dad and you would think she could understand. So I am dealing with feeling guilt as well as not having any support from family. In any case, I am slowly gaining my physical, mental and spiritual health back and I know that my father is being cared for in a beautiful Long Term Care home in our community with professionals who know how to care for him. He has a beautiful spacious private room with his own walk in closet, entertainment center, table and easy chairs, his bedroom space and his private bathroom. He has 24 hour nursing care, housekeeping, laundry and all of his meals and snacks provided. I know he is safe and in the best place possible. I am also lucky that I have a wonderful Administration team with the intake and education nurse who is available to me as well as dad all the time. How blessed I feel that the good Lord has made all of these things available to dad and me. Leslie, my heart is with you in this journey. It is not an easy disease to navigate but I know from my own experiences exactly what you are going through. I believe strongly in the power of prayer and the gifts we receive from our Lord. I know for certain that only God is in Control and He will guide me and keep me safe during this whole journey. My hugs of comfort and support for you Leslie and my love to both you and Jason.
I respect y’all so much. It’s amazing that Jason is willing to do these videos because a lot of people wouldn’t want to. But maybe that’s helping slow down his decline. But the fact that he wants to do it to help others speaks to the kind of person he is! My daddy had LBD, so I’ve seen it close up. It isn’t pretty. And the fact that you are so candid about your new role as his caretaker speaks to the kind of person you are. But, yeah. You NEED to cry, you need to talk with people about YOUR feelings. Because if you don’t take care of yourself, you can’t take care of him. In regards to the childlike behavior, Daddy talked to a stand up snowman decoration, it was basically his friend. I had got them a manicure set that was in the shape of a little red car. When my grandsons visited, the youngest child got it to play with it, he grabbed it back and said “that’s mine”. He wasn’t mean or anything, just matter-of-factly . Much love!❤❤
I think you two are and were a perfect match. Jason is such a super smart functioning person and you being the RN has just complimented each other and seems carry you further than most living your life. God's continued blessings to you both. So enjoy your segments.🙏
Thank you both for sharing your lives to help educate others about this terrible disease. Leslie, I hope you will continue to talk to us about how you are doing, even if you can’t see us I know it helps you process. One caregiver to another 🤗. I would NOT be able to handle this without my time with Jesus either, I look forward to those precious moments with him as he calms me and give me strength for another day. Blessings to you!
I appreciate Jason’s attitude and way of dealing with living day to day. Jason, unlike most people, can be in the present moment and be appreciative and grateful. We can take a lesson from his playbook.
I'm rewatching some old episodes. I can definitely see the decline from this episode from last year compared to the newest ones from 10 days ago. Prayers for you both.
