I am a surgeon. I tell my patients that going to a new doctor is an interview process. If the patient and doctor don’t “click”, no matter how educated or recommended the doctor is, the relationship will not be productive and the patient should move on to find someone they can work with. The neurologist’s comment to Jason was inappropriate and surprisingly uneducated. I’m sorry that happened to you.

@VenitaSheppard

3 жыл бұрын

There’s a Family practitioner nurse 👩‍⚕️ that said inappropriate things to my sister. Becky said Venita do you know I have dementia, I said yes Dr. clemmings said I’ve told you all week that you do and several times yesterday. This fpn, was rude and said now let’s talk about a living will not a Gaurdianship. This brought back Becky describing what the abuse my brother and his wife did. The doctor and I quote her exactly, what’s sick is you coming into the hospital with shitty pants. 🤬 since I turned the doctor and nurse in I’m fighting for my sister’s livelihood. She’s been in sacred heart in Spokane since June 28 approximately , my court in front of the judge is December and the cancelled the guardian ship training video cause of the covid. So not sure if they’re gonna cancel court now because of it. Since turning the nurse and doctor and the security guards for putting bruises on her I’ve had trouble with them since. They lie and pass the buck. I don’t know I’ll have her nurse talk to you.. Three days later on the phone and then they don’t know either 🥺😩😡

@lilolmecj

3 жыл бұрын

Thank you for saying that! There is no worse situation than having a non cohesive relationship with someone in charge of life changing decisions for you. And yes, the neurologist, what a goof.

@meomy29

3 жыл бұрын

@@VenitaSheppard I'm sorry that happened. I'm an RN who used to teach Medicaid recipients about their health problems. One of the things I tried to tell them is that your doctor works for you. You don't work for the doctor. You might want to consider firing your employee. If your provider works for a hospital system you ought to report them. You'd be helping the next person.

@katcal8927

3 жыл бұрын

@@VenitaSheppard going through it with my sister too,

@rubyruby6358

3 жыл бұрын

This is so true.

I took care of my husband with dementia for the last several years.In his last months he really didn’t want to leave the house or be social other than me and our two Golden’s.He was the sweetest man always and most of his dementia journey but there were a few isolated anger explosions.I had to remind myself it was the illness and not my sweet husband.This dementia journey has been painful and exhausting at times but strangely so very awarding too.My husband tripped and injured his C1 kand C2 and died this past June to his injuries and complications.Hospital Covid restriction prohibited me to being with him and that broke my heart.Dementia stoled my husband’s body and mind but it could not erase all the beautiful memories we shared together. I miss him terribly but I am relying on God and my precious memories to see me through. You’re both are an inspiration that life continues with joy even after being diagnosed. Stay safe,strong and happy💖

@jdxx59

3 жыл бұрын

So sorry for your loss, but glad you have your lovely memories.

@flowergirlicart3949

3 жыл бұрын

Thank you for sharing. This Tuesday my husband and I get his Brain Pet scan results (although the placed the results in his patient portal before the consultation!!) Alheimers advanced stage. Pray for us. He is only 54 years old.

@vivianstidham9596

2 жыл бұрын

God bless you Connie. I am sorry for your loss and yes, you have sweet memories and a God who loves you dearly. Your sweet husband is with God and free from all disease and pain. And yes you will see him and the Lord someday. You are precious! From Texas.😘🇺🇸

I've always thought that some Doctors can walk on water. and some should be held underneath it!

@njsmkmmsthatsit3518

3 жыл бұрын

Ha ha ha ABSOLUTELY. And they are certainly not Gods, but some times they need reminding of this, because they are certain they are.

@kayhoughton3856

3 жыл бұрын

Totally agree some medical professionals have a god syndrome I’ve seen nurses sat round there desk looking at holidays and kitchens while there’s a frail old lady crying for toilet A doctor being abrupt with my mam cos she couldn’t understand him cos he couldn’t talk good English hey doc that’s not my mams fault if your going to work in uk talk the language . Luv Barnsley yorkshire xxx

I love that you don’t tip toe around what is difficult for you. Your honesty and Jason’s acceptance of his accountability is amazing! How you advocate for your hubby is just beautiful.

Jason's distress at the thought he makes you sad sometimes is so clear. I'm wishing him peace of mind & you the kind of support you need to take the difficult times in stride more easily.

@amynicole5884

3 жыл бұрын

Yes

Being a caregiver is so very emotionally hard. Sending prayers. Remember to have self care time for you too. You two are amazing.

@janiemoxley2918

3 жыл бұрын

Yes, maybe some of your family or friends can stay with Jason do you can take a break. I admire you and understand. I took care of my mom for 5 years and was reluctant about leaving her but you do need some time for yourself. You are doing a great job.

@caramelfrappuccino234

3 жыл бұрын

I was my mothers caregiver. She had lewy body dementia. It's a bitter pill to swallow but the Lord saw me through to the end. She passed 6 weeks ago.

This is what marriage is all about! You are sharing the perfect example! Thank you and God bless you both!

Beautiful couple inside and out. Suggestion; when hubby gets distracted from making lunch...instead of “what are you doing?”, maybe just say, “I see you were making lunch; can we (or let’s)finish that up?” Asking, “What are you doin?”, however nicely said can feel confrontational to the person with memory issue.

@4estdweller4ever

3 жыл бұрын

That may be true. It might be taken as a criticism no matter how sweetly it’s said. I have a lot of brain fog and too much noise around or someone trying to sort me out makes it harder

@herewego1115

3 жыл бұрын

Thats true. Good luck to you both. Seem like such great people.

@fuzzamajumula

3 жыл бұрын

This is great advice!

@karenkirwan942

3 жыл бұрын

Great advice! Saying things like "You seem (insert emotion)" rather than "what is wrong?" goes a long way to elicit a desired response without anger or upset. I agree with her reminding him his behavior is inappdopriate, but please refrain from " You already told that story," or "that is the third time you asked me that" type responses. That is just shame and anxiety inducing. Just smile and answer, no matter how many times. Figure out wlhat works best and go with it. Adjust expectations daily if neccessary.

@freedomcakes

3 жыл бұрын

This is a very helpful comment, thank you. My hubby with Parkinson’s and LBD does stuff like this daily and I’m always asking him that question. I never thought of it as a problem. I appreciate the advice

I just have to say Jason is an awesome guy to do these videos. His personality shines through! I am so glad you get to stay home. I am sending love and prayers for you to share good times and miracles ❤️

@ACharmingAbode

3 жыл бұрын

He's just the sweetest for sharing the good and the bad. Thank you so much for watching. 😊💜

@lobo1368

3 жыл бұрын

Amen! Love you guys! Beautiful couple! Thank you so much Jason for your service and also your gorgeous wife's service as a former nurse.

Please, please continue filming these updates. Maybe even one day you could try to do a "day in the life" with LBD video.... if it doesnt work out you can always not post it. I will post again later but I just wanted to say that. Love you guys.

Just because you can’t see someone’s disability right away or at first sight doesn’t mean they don’t have one. Try not to take it personal when you argue and pick you battles wisely. I’m praying for both of you. Keep making the videos. And I thank your husband for his service to this country.

Living with dementia due to head injury with more than one family member, you guys make me feel better. You guys are great.

Hey Jason, Rick Hackett (avionics) miss our old days of bantering each other, lookin' good and as funny as ever. Hang in there prayers are powerful.

God bless you! I’ve have been down this road. My husband of 58 years, was an officer in the Army for 23 yrs. He was in Vietnam in 1967/68. The Information Officer for the 173rd ABN. When he return from Vietnam, he was suffering from severe PTSD. For years my children and I were robbed of a normal lifestyle. In 2005, he suffered a Brain Aneurysm. I was able to be his caregiver for the next five years. He spent three years in Memory Care at the Sam Rayburn VA hospital in Bonham, Tx. I would like too add.....he had excellent care at this Facility. He also suffered from Prostate Cancer from Agent Orange. Every case is different, but no one knows what you are going thru. My husband had always taken care of our finances. When it became necessary for me to take that chore.......he had canceled all my life insurance. Many things were undone. After, many years of fighting VA, I have won my appeals ......he lived long enough to have some of the insurance, reinstated. My Prayers are with you, two! One thing in your favor.......Jason has accepted ( or knows what his diagnosis’s is ). My husband thought, I was the one that had the problem!

Having been along term care nurse for over 40 years, I was always looking for ways to educate my staff and families on careing for the residents. I found videos from a dementia educator named Teepa Snow very helpful. Try and live in the moment became our motto. May you find peace and joy in all your moments.

@elisabethm9655

3 жыл бұрын

Yes! Teepa Snow videos! That Doctor was an a-hole - deserved to be dumped and reported. Dementia is a long journey - it’s different for each person. What other people think is not relevant. Personality changes can be super challenging. Talk now while you can about what he wants you to do for him if or when he can’t make decisions. Get your wills in order, get a power of attorney along with a back up person. Get those sort of thing done now. Burial instructions...yeah, plan your funeral (be sure to put the ‘fun’ in funeral, too 🤣) anyway..just like all of life, LBD is a terminal condition - the gift of it, is you know and can plan to have the best time ever with every moment left. ❤️

I feel your pain. What’s so hard , we try not to have hurt feelings when they say mean things but so so not easy. Get your personal time breaks, it helps both of you out.

I need to keep seeing your journey because it is helping me during mine.

You are so strong. Dementia doesn’t discriminate. As a future physical therapist (I’m in grad school right now) I apologize to you for the way that neurologist treated you. You are amazing. My boyfriend is a marine and although I haven’t been through anything like you have, I am empathetic and I stand w you. You are strong, you are capable and willing and that is beautiful. You have an amazing husband and we see that. Don’t you worry, everything will be ok. God bless you all& stay strong for him and most importantly yourself. ❤️

Just remember it's the illness talking. Not the real Jason. Proud that you can talk about it with him.

I was a Lewy Body caregiver - the changes in personality knock you for 6 - love & prayers from Scotland x

This made me teary-eyed. You're both soooo great for doing this. So open and honest. Your love for each other is obvious💛.

When my grandma got mean I’d tell myself it’s the disease it’s the disease but when it’s something so foreign to you it hurts. But it is the disease. Stay strong and know former and present caregivers have your back. 🙏💕

This is a prime example of why communication is so important. I love yall! I love how you treat each other

My brother-in-law was diagnosed years ago. Finding the correct diagnosis was a long and difficult process. There was no way to point to a definitive time we can when is started, but about eight years ago. We look back at some of his actions and decisions that now make more sense. He only recently gave up playing a round or two of golf (they live on a golf course and he played everyday for many years). He is in his late 70’s now and, unfortunately, broke a hip. As often happens with older folks post surgery, he has experienced a big setback. My sister wanted to care for him at home, but she has physical challenges that make it impossible. He is now in a care facility, which is a unique challenge during Covid. After he stopped driving and before Covid, his friends took him out to meals at his favorite restaurants a couple of times a week; that was so important for him. Yes, the tension can build in relationships. The symptoms will come and go. But, you do have time and enjoyment ahead of you. It would have been very helpful to my sister to have seen this sort of video way back when. Please do them when you can. Thank you.

I wish I could reach through this screen and take this away from you. You both are beautiful people , inside and out.

My mom was never actually diagnoised with Lewy body but she had the symptoms There needs to be more sharing of everyday personality changes bc this is different from the other dementias. My mom became difficult to tell the difference between her dreams and reality. she has visual illusions as well as hearing things..... and the changes would be from several times a day from talking with complete mentally clairty to unrealistic made up illusions . alot need to be shared and learned about this illness. You are both very brave and great to be sharing your life with the world thank you! and thank you for serving our country and for being a hero!! God Bless you both!

@Hippabellita1

3 жыл бұрын

same with my father ... massive hallucinations which pre-occupied him and kept him more busy than actual reality. And memory loss was totally insignificant in comparison; still 6 neurologist were unable to form a correct diagnosis; the last one diagnosed dementia and Alzheimer ..... and how much would a correct diagnosis have helped us and avoided a lot of trauma and even seperation within the family, because the hallucination also concerned us, his children, and made him very aggressive towards us.

@doreendaykin6693

3 жыл бұрын

Amen!

@karenkirwan942

3 жыл бұрын

Most often the hallucinations are not scary, often being children and small animals. The dream sfuff and acting them out definitely could be scary and hard to come out of. My mom actually broke a vertebrae jumping out of bed and landing on her hands and knees during a dream.

@karenkirwan942

3 жыл бұрын

When my mom finally admitted to having hallucinations, it was of mice running across her counter. I asked, " are you sure? We have had a ton of mice this winter." She replied, " Yes, but mine were dressed so nicely!" Then we fell out laughing about that. I plan on getting an LBD tattoo of a dancing dressed up mouse!

That's the hardest thing. The anger😔

Thank you for sharing. We are in our 70's and starting this journey. It is good to know what may be our new reality.

Jason is fortunate that you are the person you are and that you have the background you do. And you are lucky to have this time and bond with Jason. Your channel is going to help so many people. I wish I had looked for resources like this when I was caring for my Dad with dementia.

@ACharmingAbode

3 жыл бұрын

That was so sweet 🥰 Thank you! ❤️

Just found your videos and compared to the first video you put out about this, I can tell the effects it's having on you. Make sure to take care of yourself as well. God bless.

Thank you for the update. You both are lovely and blessed to have each other.

@ACharmingAbode

3 жыл бұрын

Thank you so much!😊

@michelemiller6275

3 жыл бұрын

Hello to you both! I just found your video, what an amazing couple you are. Jason, you have accomplished so much in your time on earth, I think your.biggest accomplishment is in being a man who inspires the utter love and devotion of an equally wonderful woman. I wish you both the very best as you continue your lives together. I really enjoy your honesty, openness and especially your warm and quirky humor with each other! I have to rely on my 3 legged cat, Pu'uwai for laughs! Come back and let us all know of your adventures and struggles too. Please be sure to take care of the caretaker too, make time for yourself, ask for help when you need it, or even a hug! Take care you two! Aloha, Michele and Pu'uwai the 3 legged cat from Oahu Hawaii. PS. It would be great if you could include the date in your video title.

I just stumbled upon your video. You’re a beautiful couple and are blessed to have one another. Prayers for patience, faith and peace 🙏🏼❤️

@daleclark8872

3 жыл бұрын

I just started watching your videos. I am from Caribou, but moved to Texas in !987. You have a beautiful family. Please keep posting updates. You and your husband are a beautiful couple. What an amazing platform to use to share your love for Jesus and for each other. I will be praying for both of you. - Andre.

Thank you for sharing your lives with us. You are a lovely couple. My husband has Lewy Body dementia, also. I can relate to so much of your story. God bless and strengthen you.

I really appreciate your raw honesty in these postings and I am praying for you and your entire family.

@marsharader5291

3 жыл бұрын

You 2 are precious ❤ I took care of my mom with Alzheimer's...She went thru a mean stage and I had to put her in nursing home....the saddest days of my life. She passed away Valentine's day last year. 😪

You guys are really cute together! Good bedside manner is everything when it comes to a doctor.

Your vulnerability will help others on this same journey. Dealing with the personality changes is painful and at times heart breaking. Thank you both! for sharing. Also addressing the fact that it’s okay to not agree with a Dr and to keep searching until you find a better fit. ♥️🙏

I have dealt with terrible doctors....I know how frustrating it is. I just found a new Primary Care Physician for that exact reason.

@cindyb8775

3 жыл бұрын

I don't know how old you are Vanessa but I am 55 and I struggle terribly with Doctors nowadays. They are not like the doctors of 30 yrs ago. they don't want to Doctor. so sad. i hope your new Dr. is a good one for you.

@salems_gigi6309

3 жыл бұрын

@@cindyb8775 thank you.... I am 47.... So far so good on the new Dr. I really liked her on my first visit. My former PCP didn't care about my health and everyone in that office was rude and had an attitude. The new Dr. Has found several issues already.... Blood work had extremely low levels of vitamins B12 & D3, a problem with the veins in my legs, she is sending me to see a vascular surgeon, and probable excema on my right shin...which has cleared up with an ointment she prescribed. The rash had been on my leg for over 6 yrs. It itched and looked awful...& drove me crazy. My last Dr glanced at it and said it's nothing. It can't be treated 🤔 this new Dr seems to care about her patients and wants us to be as healthy as possible which is how it should be

Hi I want to say Thank You 😇 You had me at empathy I feel as though I’m walking in the twin pair of shoes. My husband was diagnosed with levy body last October and already lot’s of changes he is 55 and we’ve been married 34 years the changes are hard . Just want to say thank you for letting me know I’m not alone and nor are you 🤗

@ACharmingAbode

3 жыл бұрын

I hate that we have this in common, but I appreciate you sharing with me! If you ever need someone to talk to, I am here! I know how hard it can be, and I'm learning that unless they walk in our shoes, most people just don't understand. Sending you hugs! 💜

You are such a wonderful couple. ❤️ Your story breaks my heart. 🙏🙏💔

I'm sitting here in tears. My husband passed at home in early October after over 7 and 1/2 years of being his caregiver (31 years of marriage) for various problems including mixed dimentia and possibly alzhiemers. I too am a nurse and my husband was also highly intelligent and near genius in some areas. Everything you are sharing reminds me of our journey, as if I'm having deja vu. The unpredictability, the constant assaults, loses, adaptations, learnings, setbacks, miss-steps, frustrations, emotions, responsibility, decisions. exhaustion, etc, etc. I want you to know everything you are going through is so precious, so meaningful and one day you will be beyond grateful for every single moment. It changes both of you in ways you could never imagine and redefines what it is "to love" in ways you never thought possible. I would encourage you to Google "Teepa Snow" positive approach to care. She is a irreplaceable resource for "brain failure." Without her resources, knowledge and support as well as the faithful grace of God, I know I could not have managed through. I was also able to obtain priceless support from Hospice providing palliative care for 21 months. We were able to recieve Hospice due to his congestive heart failure. I'm praying that as time goes on, you too will welcome resources to help you through this seemingly impossible journey. God Bless you both. Take care and just continue to do the best you can and that will be enough.

As a caregiver, you are so understanding and beautiful. And it comes across sincerely that you understand why he goes off and says things to you like "shut up", but I'm concerned for you. Not that you will crash and burn trying to hold yourself together, but the potential is there as outburst get worse and more frequent. You have so much pain and even though you are logically grasping that he doesn't mean it, I worry that without professional support you could become emotionally injured/damaged trying to carry this around and deal with it on your own. I hope that you are getting some counseling while you are going through this with someone who either specializes in caregiver support or something along those lines. You are such a wonderful person to be so open, vulnerable, supportive, educational, etc. I would just like to see you giving yourself your best shot possible to get through this. I find myself wanting to give you a huge hug. Please care-give yourself too.

I think what the two of you are doing is so important in creating awareness for others. 💕 Thank you for sharing.

My mother had Alzheimer's. When she was at the doctor's or around strangers, she would be in performance mode. People couldn't tell that she was having problems. If we tried to explain what was going on in front of the doctor she would say, "What am I doing wrong?" It was heart breaking.

@lilolmecj

3 жыл бұрын

Absolutely! My mother has her doctor convinced she is sharp as a tack. But she has some real problems. It is a true challenge.

@karenkirwan942

3 жыл бұрын

My Mom did that too. Not one to complain in front of a Dr. She also did not want to be talked " about" so I would slip the front desk a note with all my observations and questions for her primary Dr.to read before he saw her. It was actually helpful for him I think, as I would notice he was Googling my concerns and even reccomendations beforehand, even during and asking her all the right questions. Then she would be proud of herself for getting results and proud of me for not interfering. I really loved that Doc for not being annoyed with me playing Dr. Google, even if it took him 2 years to agree with my diagnosis of Lewy body. Took neurologist #2 to get her meds.

Yes Jason we love to see you together on these updates. You two are adorable! 💙💜🙏

Jason is a good person and your lucky he is on board in this journey. It does make it easier, and less lonely. God be with you, always. ❤️

Thank you so much. I can relate to some of what Jason is going through. I have not concrete diagnosis as I have no insurance right now. I worked 17 years at one place and raised 4 children as a single parent. 2018 I lost my only son and after that is when things began to change. Pray for me and I will pray for you. I'm 54 years old and PTSD has been mentioned as a cognitive impairment. For the past year I have not been able to maintain a job because I can't put into place what ever training I receive. God bless you both, hugs!

@ACharmingAbode

3 жыл бұрын

Sending hugs and prayers your way. I"m so sorry for all that you have been through. 💜

@created2bless322

3 жыл бұрын

@@ACharmingAbode Thank you and Im blessed to have found your channel ❤️

@suek7086

3 жыл бұрын

I will add my hugs and prayers. I think the sudden loss of our daughter was one of the factors in the onset of my hubby’s dementia.

@created2bless322

3 жыл бұрын

@@suek7086 I'm so sorry for your loss. My son was 24 and he died in a tragic car accident. To this day, I have not seen the footage but I had to read the police report. My heart goes out to you and your family. Hugs and Prayers

Jason and Leslie, you are so kind to share this journey. I respect your decision as to whether or not to continue to share. I keep you both and your family in my prayers. Our adult daughter has gone from doing fine to a wheel chair and down 25 lbs in a year. So I understand and feel for you with some doctors. She has a handful of caring committed doctors, although none have found what is causing her disability and weight loss. My mom had dementia. She too expressed anger, she never had before. Like Jason said, I’m still me. And he doesn’t realize he’s doing it. Wishing you both the most peace possible and much joy. These situations are so very hard. Hugs from Missouri!

@ACharmingAbode

3 жыл бұрын

Beth, I"m so sorry to hear about your daughter. Thank you so much for your support always. We appreciate it more than you could ever know 💜 Hugs!

@bethwishitwereviolet5938

3 жыл бұрын

A Charming Abode 🥰

@doreendaykin6693

3 жыл бұрын

Prayers & blessings for your Daughter and You❣️🙏🙏🙏

@bethwishitwereviolet5938

3 жыл бұрын

@@doreendaykin6693 Aww, thank you so much Doreen. 🥰

Thank you for being so honest, I feel like I learned a lot today. You guys are doing a great great thing.

@ACharmingAbode

3 жыл бұрын

Thanks for watching!We appreciate it! 💜

That is AMAZING that the neurologist will talk to you alone, first! I am refused and sneered at when I ask for alone time with the doctors or even the nurses. I have to FAX, good old fashioned FAX, my notes ahead of time to the doctor and then, I get sneered at by the nurses for making them go get the fax from the machine. And OF COURSE, nobody -not the nurses nor the doctors -reads the faxes, even when I work so hard to keep them less than half a page. I mean, you guys are soooooooo lucky to have that neurologist! My mother will jump up and angrily yell at me and RUN OUT OF THE APPOINTMENT if I start saying things she doesn't remember. So, I've learned to put it all in a Fax, ask the doctor and nurses if they got the fax, listen to them lie to me and pretend they've read it and then I stay silent for most of the appointment. I've been to dozens of doctors, shopping for better ones. One doctor, even, threatened to kick me out of his practice because during the appointment I kept saying, "I don't feel comfortable discussing this in front of my mother. But I did address this issue in my fax." Doctors, particularly specialists, are *dangerous* A-holes, mostly. SO GLAD you have a good one!!

@aksez2u

3 жыл бұрын

I'm so sorry you are being treated this way. My mom has been diagnosed with Lewy Body, but I don't think she has typical symptoms. She has auditory delusions that there are people in helicopters causing all of her physical symptoms, shaking the house, making it so she can't walk or get out of a chair. She has ZERO self awareness, so she doesn't really understand or agree with going to the doctor in the first place. It is unthinkable that I could discuss her mental issues in an appointment with a doctor. I completely understand where you are coming from. I hope you can find a doctor who understands why you need to communicate with them outside of the visit with your mom 💜.

You are so strong and amazing! There is going to come the time when you won’t be able to care for him. Breaks my heart. I worked with dementia patients for 30 years... it can be a hard road. Bless you!

@happy1831

3 жыл бұрын

I wish Viki provided additional encouragement considering she worked with dementia folks for 30 years. I truly expected more from her as a professional and encourage taking another chance to open up as this courageous couple, I believe, are hoping for more give and take, as she is a nurse too. She can’t do it all, and the documentation they have worked at together and his service to our country, demands it, respectfully stated ❤️🕊🇺🇸💖. P.O. Box 📦 available? 🙏🏼🌹

@vikivictoria7343

3 жыл бұрын

@@happy1831 I am just being realistic. I can’t imagine the heartache. He is already showing signs of agitation. I know what happens when someone with dementia forgets who their loved ones are! This disease is so so sad. I applaud her strength! I also applaud their courage to tell their story. Hopefully this will give others courage and hope.

Advocate for the patient. After my friends 4 hour assessment and mri, he was diagnosed with frontotemporal dementia. His first visit to his neuro md and the dr's FIRST words to him were, "Well, let's get you on some meds." I jumped up and said, "you don't even know his history, the meds he's currently on, and you're ready to add more meds?" It's so important to keep yourself informed and stand up for their rights as people.

@Print229

3 жыл бұрын

Yeah, you have to know stuff. It's crazy. Both my parents have dementia and I save them from a medical mistake or malpractice about once a year. I told my support group the other day, "I bet 90% of everyone sitting here is going to be killed by a doctor or pharmacist."

What inner strength & what genuine Love & Loyalty, to stand by Jason's side, and help him by empathizing to where you can relate to whatever is going on with him. A Amazing couple! Sending God's Blessings to you! A KU grad from Kansas City, Tom 🇺🇸🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹♥️

love the way jason verbalizes what's going on with him. so blessed to hear your story. you're doing an amazing job, you two! thank you so much for sharing with us

You two make a great team. I know this is so difficult for you both in different ways. I will tell you a funny story. Not a doctor but a marriage therapist, my first husband and I went too. He looked at us and said, well you look fine and I can tell you still have a connection. Even after the first visit ended, he said well you seem like best friends, I don’t know what I can do for you. 🤦‍♀️ We obviously never went back. We were just stunned. So I totally get your frustration, with the doctor. I cared for my mom, for years before she passed away. You absolutely have to be the advocate as the caregiver. And that’s not always easy. Trust me, I have lost my cool a few times with rude doctors.

My heart goes out to both of you. Thank you for keeping it honest. 💕

@ACharmingAbode

3 жыл бұрын

Thank you so much 💜

Despite everything you are both dealing with, when you look back on this you will see you are both still finishing each other's sentences ❤️

I feel so bad for you. Your husband has changed so much and I see how much your hurting. Prayers.

Thanks for sharing you two! I love how great you are with his teasing. I have not told you yet how sorry I am that you are ill Jason. Really SUCKS!! You have a wife that lives you soooo much. You two ROCK!! I am so glad you are real with us. Crying helps to cleanse or soul. This shit is hard!! Love you two!!

Good afternoon Leslie . You and your husband are adorable .You are very positive and strong woman . Thank you for sharing with us . My prayers are with you beautiful couple.

@ACharmingAbode

3 жыл бұрын

Thank you so much!💜

My dad started showing symptoms when I was a kid! He would get lost in Walmart or when we were leaving church and he couldn’t remember how to get home! That was back in the day when dementia didn’t even have a name bc no one knew anything about it! My dad was so normal otherwise! Just looking at him you couldn’t tell anything was wrong with him! My dad didn’t die from dementia but he lived to be 86 and died from liver problems! So I’m praying that Jason lives a very long life! I know every case is totally different! This disease will teach you patience unfortunately! Prayers for you guys and I appreciate you guys doing these videos bc it will help someone else!

What a lovely couple, I spent a few years working alongside this disability,so I understand a lot god bless you both

You can’t read his mind so that makes it hard. I took care of my brother with TMI and now dementia for 13 1/2 years. I am praying for y’all and you guys are too cute.

Im glad you shared your story as a woman, wife and nurse. I specialize in caring for alzheimers and dementia individuals! I also am a nurse and my partner may develop early onset dementia as well in the future at a young age! Love & Light to you and Jason on your journey together! Some days will be tough, others will be comical, and never a dull moment! Just remember to always meet him where he is in his memories, also remember you may be a nurse, but you are his wife there may be a time when you will have to be his wife and not his nurse. Of course you want to care for him but when those tough times come, his wife is who he will need most!

Yes! More Jason!! Your bond is beautiful, most of us would love to have.. God bless you both! Jason, you are amazing and keep being funny 3 times before noon..

God bless you both 💖

@ACharmingAbode

3 жыл бұрын

Debra A McKown Thank you ❤️

I love your updates! I am a student nurse binge watching dementia material and have fallen in love with you guys. Recently, I came across Teepa Snow and her Positive Approach to Care (PAC) which has mind blowing tips for helping to maximize the skills that remain and dramatically improve the quality of life for people experiencing brain change. Learning from Teepa has made me look forward to interacting with folks who are experiencing various levels of brain change. Watching you both is such an inspiration to me. Thank you for doing this...you have no idea how much you have taught me. I hope you will continue to provide updates.

What a beautiful couple! Thank you for sharing your story. I understand having taken care of my mother and grandmother who both had dementia. You both are helping so many people including me. Thank you and God bless.

@ACharmingAbode

3 жыл бұрын

Thank you so much! 😊

So glad you stood your ground with the doctor, they need to know they got it wrong. I test out the new doctors and therapists I go to and if they don't make the grade they're history. Hugs to both of you too.

Yes, if possible, continue the videos. You are helping spread awareness and that spreads understanding. So important. Thank you.

Lesley I cried with you in this video. Keep strong sweetheart!. 💪

Thank you for your courage.

Last week we saw our internist for the first time in over a year due to covid, and presented him with my husband's recent LBD diagnosis. He's 56. He did the SAME THING! He said, "I don't believe it. You don't look like someone with Lewy Body. I think this is something else." We were so angry. I tried to explain that my husband was having a good day and his new medicine was helping tremendously, and he kept saying, "You don't look like you have Lewy Body. I've had patients who had it, and you're not them." Thank you for your advice on this and so many other bits you share that are comforting and helpful to me. I know we're not alone in this, and that alone is encouraging. Thank you for opening your home to us so I can strive to be as loving understanding a caregiver as you! ❤

Leslie, thank you for being such a fierce advocate! It is so incredibly important that the medical professionals hear the voice of the caregiver.

Thank you for sharing. You’re going to help a lot of people over time.

Jason and Leslie, thank you so much for sharing your love, life and your struggles with me.. You're an amazing couple .. My prayers are with you both and yes, I have subscribed .. Keep posting guys.. ox

You beautiful couple you’re blessed to have each other

Love you guys!!! I'm a CNA, who most recently, took care of Hospice patients. What a gift! But, I've taken care of Dementia and Alzheimer's patients, as well. The Alzheimer's patient would threaten me on a daily basis. Combativeness was a moment by moment event. I would go home after a shift and cry and, he wasn't my husband! So, I understand how difficult it can be. The only advice I can offer is, if possible, breathe, pause and ask God for help in the moment! The ONLY (probably not) great thing is you know he loves you so much and can't help being a butthead! He's such a sweetheart 💕. You're such a Sweetheart ❤️. Prayers 🙏 for you guys. Thank you so much for sharing this. Great information for those who don't know anything about this or just in the beginning. It's a Godsend for all! Love you 💞😚

@hownwen

3 жыл бұрын

And ask for help💙

@chmael55

3 жыл бұрын

@@hownwen Yes! For sure ask for help. The V. A. should be able to provide respite care for when you really need some time off for R & R. You should ask them about that.

Congratulations on being Jason's companion full time. Remember to take care of you. God bless you both!

Yes we want to see more of this journey. Blessings guys 🧡

Wishing both of you peace. I was a caregiver for a 55 year old man with LBD. It was so sad to see his wife go down hill as the disease got worse. Please take care of yourself, Leslie.

Really appreciate the education, thank you for your willing hearts 💕

@ACharmingAbode

3 жыл бұрын

Thank you for following along 🥰

Nice to see you Jason! Keep going and keep moving forward.

So grateful to have found you! We just walked a 3+yr battle with this disease with my FIL. We too had many of the experiences you did and others as well. Initially our neuro thought he had PSP, but later found out it was confirmed Frontal Lobe Lewy Body Dementia. Hearing stories brings such comfort. I would look for those who “understood”. And to see what tools, ideas, therapies, etc - sometimes it’s those of us DOING IT who have better ideas. More than happy to be a resource as you travel this road. My FIL was more advanced when we realized what this was, but we had years to work on things and helped make his life, and ours, the very best we could. Praying for you all. You are not alone.

God bless! Thanks for doing the video!❤️🙏

Jason please continue to share with us. People really need educated on dementia and you doing these videos is so very important and helpful to people. You both are amazing compassionate people and we look forward to seeing more of you both. Prayers and God bless you both.

Thanks SO much for the update! I really appreciate it and am rooting for the both of you! So nice you were able to quit your job to be a full time caregiver, and to be able to take more fun trips together!! Wishing you the best!!

Sharing both of your perspectives is so so helpful. You have no idea!! Thank you.

You have helped so many people. Thank you for both being so brave. Sending love from GA

I truly appreciate these videos.

You two are amazing and thank you for for your update 🤗

I love how real and authentic you are in these videos. Thank you so much for sharing from the heart and with compassion for each other, and others!! Keep them coming, you're awesome! Blessings, Love, and Light!

Thank you guys. 💜

Yes please continue these update videos! They are so helpful to others going through the same thing! You are a sweetheart and hugs to Jason for allowing us into his journey! 😊❤️

Thanks a million for talking so openly about your journey. You are a wonderful blessed couple. So inspiring. Can understand your feeling about the rude doctor's visit. Been there!

Thanks for the video with both of you. I keep learning from both of you.

Thank you for all you do. God bless

The updates are great! You are both amazing people, working through very tough, emotional times. Praying for strength and courage for you both, as you live each day loving and supporting one another! God bless you always, and continue the updates when possible!

Jason, THANK YOU for being such an inspiration to, and educating others even if that is getting harder as time goes on. Never be embarrassed or self conscious about where you are at on any given day; so many folks are in the same boat and knowing they are pulling for you as you are pulling for them is such a beautiful thing! What a lasting legacy as well! You guys are the best!

Very interesting, I took care of my husband for 5 years until he passed with congestive heart failure. He had many of the symptoms that your husband has, the personality changes especially. I just chalked it up to not enough oxygen getting to the brain. Maybe he had more going on than just the heart failure. Either way, it’s a tough road. Take care of yourself.

Thank you for sharing your journey and educating us all.