LIVING WITH DEMENTIA EP.5 | STEROTYPES AND PATIENT ADVOCACY

[@joycema1014]

This is to friends and neighbors of a friend with dementia: Please give the caregiver a break once in a while. Just telling them you will take care of the person with dementia will be so rewarding for the caregiver, they need a break. It is sometimes hard being with the person affected, think of the caregiver being there 7 days 24 hours a day. Even 2-3 hours once a week can give them the break they need. Thank you.

[@joycema1014]

Oh, both parties need the change and are glad to get that break.

[@joyful_tanya]

I had a GI doc who did that. I hadn't been able to eat solid food for 6 months and he wrote that I was "well nourished" with 0 labs, 0 physical exam and 0 tests. I had been drinking protein shakes. He didn't even palpate my abdomen. I never saw him again. And I am also a retired RN. This sounds so much like my husband. He has an MRI of his brain but they said he didn't have Alzheimer's or Lewy Body. They didn't do a PET scan. He also has had several "head injuries". He crashed his motorcycle and a car crash. He's going to be 69 this month and also had substance abuse issues. So not only physical but chemical injury. Thank you for everything you do. ❤

[@kimacker8594]

Gosh Leslie, you try to be so positive and joyful but when your hurt comes out, I am so sorry, and I know Jason can't help this. You are so strong and positive, an inspiration.

[@pamelariley8983]

Thanks Jason and Leslie for this video.. My Husband, Dan, has mixed dementia... .. He has started to wander a bit... He gets so distracted when he is doing something... He walks away and will start something else.... forgetting about what he was doing first... When He does ok... it takes him forever to do something that would been an automatic response...for him He cannot take direction from me.. He gets so confused... He gets very ill at me .. something that was very minimal in our life until dementia struck...I am really glad I found your channel.. I don't feel as lost now... Pamela

[@drinajgb2437]

Always love it when folks say stupid stuff like “you look ok so you must be ok”. So it seems clueless people would need to see a cast on the head of a dementia patient or a sign that reads “my brain is broken.” I have completely lost patience with this issue over the years. And I must say that we have fired many doctors on this confusing journey.

[@corgimom2]

The doctor was very unprofessional! I hope you found someone new to work with. I've been around dementia/alzheimer's my whole life. My grandma had Alzheimers. My dad had it. My mom had dementia. And my father in law has dementia now. It's a nasty disease. Cruel. It steals your life. It hits anyone....poor, rich, smart, etc. There is NO look. It's an extremely emotional roller coaster ride. I feel for you and your family. I'm so sorry that you have to go through this at such a young age. I will keep you guys in my prayers.

[@ForeverCleanSoapWorks]

Please keep sharing, even if it's just you, Leslie. You are doing an amazing and difficult job as caregiver and I love hearing your point of view on everything.

[@karenmontgomery9465]

I've watched y'all for a very long time now AND today I found out for sure that we are joining the club. Having our first dr.'s appt July 12 to get the ball rolling.

[@JustBethTrying]

It would have been tempting to reply to the doctor, “And you don’t sound like someone with a medical degree.”

[@joanclement6671]

I appreciate these vlogs so much because I’m walking your same path. I’m a caregiver for my husband who was diagnosed 3 years ago with dementia. We have the same ups & downs you have. If I don’t make him a meal, he doesn’t eat. He’ll pick at foods & he has an enormous craving for sweets. I was a nurse also, so I’m his advocate when we go to doctors. One neurologist asked him why he was there because he said he looked fine. I felt like smacking him. Needless to say, we didn’t go back to him. Please, Jason, continue the discussions. We all learn from each other.

[@mariawilliams1314]

I am so sorry to hear how the new doctors appointment went. I have several autoimmune disorders and nothing makes me feel worse than when a dr or friend says you don’t look sick, you look good. No, I don’t want to look bad but my body is screaming in pain. My husband is having so many issues with his short term memory and confusion but unless you are with him all day you probably wont pick up on them. Think and pray for you two often! Please continue to keep us up to date. ❤🙏

[@karens2881]

No one has a clue unless they've lived it❤️❤️

[@daisyy99]

It's June 2023, this video is a while ago. But this conversation was helpful. Leslie and Jason, what you are both going through is heartbreaking because you both know what's coming. The doctor was just outrageous. The warning about being an advocate for your loved one is very timely. And speaking to the caregiver alone is a good strategy.

[@maryroberts8566]

Gosh Leslie you really touched a sore spot with this one! The neueologist didn’t help much because he didn’t agree much about the diagnose we came in with simply because Jim could still handle our bill paying and can drive .He didn’t mention anything about future appts .I was going thru a very hard time with verbal abuse but he didn’t pay mch attention to that.

[@daisyy99]

Thank you for sharing Mary R. I wish I had a channel like this going through my husbands Parkinsons 12 years ago. I was scared and afraid many times from his vivid dreams and acting out.

[@vanessaburckhard3081]

You're very strong Leslie and so is Jason. I went to a ruud dokter once who said'What are you doing here? I was offended and hurt. I had bad pain from arthritis and went to a Rheumatologist. Never went back to him He was very rude. You two are going through a lot. You need compassion not rudeness. Love and prayers ❤❤❤🙏🙏🙏.

[@queenb9070]

Yes!!!!!!!!!! Many people saw a side of me that is rarely seen when I was taking care of my mother.

[@jhutch1681]

THANK YOU! I have to lay out my husband's clothes, remind him to take his pills, give him a list and agenda everyday, stop him from eating unhealthy choices, follow up on his chores, pick up the slack for him, and more (all things he used to manage on his own) yet he still goes to work (albeit at a much easier job than he used to have). People think he's quirky, short tempered, obtuse ... (not that he socializes much anymore) but they don't know the whole story! At my husband's last check-up he had a new doctor. She ignored his file, ignored my input about his worsening symptoms at home, and told him he was doing better, because he can present well and did well on the test you described. She noted how intelligent he is, but smart people still get dementia and it doesn't make them dumb! He is not doing better. His executive disfunction is a mess. He is irrational. His empathy is gone. His memory is terrible. It was not helpful for her to say that. My brother died from a rare metabolic disorder, many years ago. His symptoms were largely cognitive. The neurologist he first saw diagnosed him as being an alcoholic having the brain of a person who drank heavily for 60 years. When I asked how that could be possible when my brother didn't drink and was only in his late twenties, the doctor took offense and stormed out. Both your input is so invaluable and helpful. I feel less alone as a caregiver. Thank you for being real and honest. God bless 💜

[@toothfairy1698]

As a newbie caregiver 24/7 over the last 5 months I am so impressed to see that you show such a positive side and that there is proof I can do this. Thank you for all the honesty you both show and the information you share. It is appreciated!! This is the phase I started out in in march my dad would all of a sudden yell and get violent and panic over things that were not happening. Definitely progressed since then. Will continue to follow ur story.

[@sythmc8600]

As I listened to you I was reminded that even in medical school, some graduate top of the class, while still others the bottom and we don't know that unless and until we educate ourselves on the diseases or illnesses we have. The truth is, any professional is only as good as we are our own engaged advocate! Keep fighting for great care and keep your sense of humor ❤

[@janetr7022]

Absolutely true.

[@jennoel8468]

I find keeping of journal of the things you see between Dr appointments helps too when you are advocating for your loved one. Love that you two are so positive. Keep making the videos.

[@MsBubblewrap]

We definitely want to see more and are walking this road with you. I’m so sorry that the new neurologist was a disaster, but extremely thankful that you didn’t go to him for the initial diagnosis! Having a brother with Parkinson’s and Lewey Body Dementia is overwhelming to our whole family. This is definitely not a path that I would wish on anyone, but you two are handling it with grace and dignity.

[@vickiewaller1570]

Girl I can see your pain.. and I see how you hide it.♡♡♡♡♡ 😢

[@islandbirdw]

Impulse control suffers commonly in brain injuries of all etiologies. You two are truly an inspiration. I’m so sorry for that doctor being so insensitive. Leslie you are handling a lot and Jason your being so open and honest. At some point reflecting the behavior in a non-judgmental way without blame or the need to constantly point out repeatedly the ways in which Jason fails. Redirecting and using cues might help. Bless you ❤️‍🩹

[@lk2688]

Thank you for this information. Yes, advocate for yourself and love one when it comes to Medical Professionals. I remember the outbursts and my husband denying it took place; Leslie you’re amazing. Make sure there is ‘a dash’ of help with Jason so Leslie can have a small pause for self care. It’s super important. Praying for both of you.

[@Pollaris781]

You guys are Great Together. Sometimes I just wish I could hug you Leslie because you keep things together with all that you have to deal with. My sister passed from this disease almost 2 years ago now. She was only 67. Jason is still young yet to have this a matter with him. My heart is there with you both. Love you guys. I pray Jason will take a better turn so he can continue to live a long life. God be with you both in Abundance.

[@brendahayes3365]

Aww Jason, yes we want to hear from you so please help Leslie with updates. I am inspired by your courage and strength to talk about it so openly! I panicked for 2 months because I have a higher than average hemoglobin count!! I can only wish for 10% of your courage. Many of us have family members that have been recently diagnosed with dementia and yours and Leslie’s insight is invaluable and thru your videos you have become a friend of sort and we care about you. We are all rooting for you and wish for the best. Take care.

[@dianeammons2150]

Thank you. Sounds so similar to my days with my husband. ♥️ You give me such peace knowing I’m not alone.

[@peggyjones3832]

Please keep sharing, Dementia is hard to understand and you are helping tremendously.

[@territoth2442]

Please please keep sharing with us! I’m so proud of you both. I’m a nurse in LTC and get the pleasure to work with dementia residents- with all types of cognitive deficits. Thank you for helping us continue to understand from a caregiver perspective! God love you both. Terri

[@catfiji8957]

I hope that doctor sees this , he needs more empathy. Thankyou for sharing your life, warts and all.

[@pamettmayer2391]

I’m really sorry that in this life you have to be the person who gets to do this, but you will not regret.

[@penneydunn8850]

I have had you guys on my mind lately. Please don't overdo yourself

[@maggiefrancis4194]

Sooooo glad you can be home now Leslie! Our family took care of my grandmother with Alzheimer’s at home and now I take care of a family friend who has Alzheimer’s. I have so much empathy for those who have this type of disease effecting themselves or their friends or family. I think in many ways it will really help you to just have the time to give to Jason and your relationship. You won’t feel rushed or pressured. You can just take things at whatever pace works for the two of you. 🙏🏼♥️💕

[@terry320]

Yes! You need to be an advocate for your loved one or client in a work situation. I’ve had to do that a lot and it is so important. Would love to see more updates when you both can do the filming!

[@cindywagner23]

I would have dropped that doctor in a heartbeat! And FYI Jason, you look so handsome with your little beard and mustache!

[@annetteslife]

As someone one lives with a developmental disability i can attest to how frustrating it is when medical personnel look down upon you. I am glad i have a support lady who comes into my appointments with me and have her speak to my doctor on my behalf were as before i never did and that was frustrating to have my doctor talk to me like i don't know my body

[@kathyhelmold7358]

Leslie you and Jason are such an inspiration ❤ I can totally see the love you have for Jason and how you are so hurt by some of the things Jason says to you. I know exactly how that feels. Even though we know our spouse doesn’t mean to hurt us with their words it’s heartbreaking to us😥 One day at a time is what I say to myself and pray for strength. That’s all we can do because we’ll never give up on our wonderful husbands. Love and blessings to you and Jason ❤

[@crystalwhaley2363]

I’m so sorry the new doctor visit was a bust. I hope you find another that is better. I had similar experience and won’t be going back. I had 2 strokes 9/22 and it has caused changes in my emotions. I don’t have the patience I used to have and my anger flairs. I seem to mostly hold it back but it’s going on in my head if that makes sense. I appreciate the sharing with us that you are doing. I’m sure it is hard to put it out there. Blessings to you both.

[@MustangSally7259]

My sister is going thru this right now. Drs are not listening to her,they think her husband is fine. She told them ,they don't live with him, he puts ice cream in microwave or cupboard, still hasn't found the ketchup. He takes all his clothes off and goes outside or takes them all off when he comes in from outside. She is so frustrated with drs.

[@Matilda73]

Just started watching your videos... Thank y'all so much for being so transparent and a BIG shout-out to Jason for sacrificing some of his privacy! While hearing both of you is helpful, hearing Jason speak of how he feels has made me more sympathetic towards my husband bc though I want to understand sometimes it like pulling teeth 😩..... My husband here lately will come inside the house saying he kinda sick and weak, then ask (while he's trying to remember) what he's eaten that day and when we come to the conclusion that he has barely eaten anything, I'm suddenly the bad guy (he's always taken upon himself to eat what and when he wanted, thats how we rolled) After watching your video I realize it's something that i need to start paying attention to! Thank y'all and thank you Jason, I already see that you'll be a great help in helping me help my husband 🙏

[@dvarn59]

It is unfortunate that a neurologist said that to you. I can relate to a lot of this. I am my veteran husbands caregiver. I had to quit my job two years ago. We are together 24/7. It’s hard sometimes. And there are times he lashes out but it is more out of frustration. He deals with PTSD, TBI and loss of use of right arm and leg, also seizures. Some days are better than others. My husband will be having a neuro psyche exam in September as there has been some cognitive decline. I am a huge fan of advocating for him. Nobody else is going to do it. We had a neurologist that we did not like and after the first appointment we changed. Of course we deal with the VA which in some cases is different than civilian doctors. Leslie, You keep strong and be sure to take time for yourself. It’s important for you.

[@kathypatterson4630]

I do want to see your videos whenever you are able to do them. Love to both of you!

[@chereeburtner4659]

Thank you for your strength and wisdom to do these videos. I know you both will continue to work through this process and learn on those people who you can count on. Leslie, so glad you quit your job. Your main job is with Jason now that he needs you more and you need you more too! Time is precious. Enjoy your days together,as difficult as they may be. I appreciate the time you take to care for the community of viewers. We love you both.❤

[@brendsglisson4002]

Keep us updated.

[@irenekegel5988]

So sorry you guys had a bad experience with a doctor . Remember not everyone should be a doctor , bed side manner as I call it needs to be a class in medical school …I have a child with many medical issues ( been in medical school myself ) and I have no patience with medical staff that don’t care or an personality that does not sit with me or my son … I will get up and answer back….good for you and standing up is hard but gets things done …..

[@janetpogue4970]

Thank you and God bless you and your family ♥

[@janetpogue4970]

This vedio must have been hard to post. You & Jasson are helping many people who need support♥

[@CardinalGrad]

Y’all are 💯 % correct!!

[@georginamarsh7885]

I love your videos. I am learning so much. I see myelf in your daily caregiving. It's a difficult role.. please continue to share . Sending a big Hug and blessings to you both.

[@dianeammons2150]

My husband Kenny’s temperament has changed also. I see him get overwhelmed and I try to help and he gets annoyed with me then I get annoyed and I have learned to just walk away and let it settle. He will be fine. But it’s so scarey.

[@janetklein9697]

God bless your love.

[@pamettmayer2391]

Yes, we want to see more. Take care of yourselves .

[@vanessaburckhard3081]

I'd love to see more videos. Love you both❤❤❤.

[@carolhyduck4063]

Leslie your love is genuine and special.

[@_JanetLouise]

thanks you guys

[@loriannvastine-kridner2556]

Thank you Leslie and Josh, You are making a huge impact in sharing your journey. Understanding both sides is immensely valuable. Please keep sharing your journey. Leslie, as a caregiver keep sharing so those of us at the beginning of our journey know what is coming❤❤Lori

[@janetjones1952]

I love your videos. I would watch as many as you could put out. Jason I love listening to you talking it’s so interesting listening to you. Love to you both. Xx❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

[@wendycole703]

I'm glad you guys put this on. I think it's very helpful. ❤

[@pamettmayer2391]

Leslie I know it’s hard to deal with, stay strong.

[@janetpogue4970]

Jason looks dazed today. Bummer that Doc was so unhelpful!!

[@sallyostling]

I can hear your pain through your laugh. In sickness and in health.

[@amyfaith2350]

Drop that doctor!

[@hayleygebhart1764]

We had that also ,are you sure you have Parkinson’s to my husband from my doctor it’s crazy😢.

[@sineriafrankenstein7316]

I know it's hard to not take the outbursts personally. But like he says, he doesn't even know why he's doing it, why it is happening. Simply brain changes, not him. ❤❤❤

[@susietincknellsmith653]

🙏🏼🙏🏼🙏🏼

[@leek7987]

I guess I was under the impression that you had not been working for quite sometime now. Were you still doing nursing? Was someone staying with Jason while you were working?

[@pennasylvania]

The doctor should be reported‼️ Totally unprofessional 🤯 👎

[@michelegawrys7286]

OMG That neurologist needs to go back to school!

[@dino946]

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️⭐️⭐️⭐️🌹🌹🌹❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

[@lineprestkvrn9014]

❤️🇧🇻

[@dianneduvarney2684]

This is from 2020.

[@maryroberts8566]

Either

[@lisawfriday]

No Dementia or Alzheimer’s doesn’t have “a look”. You can literally run a country with either of those diseases 🤪. Love that you are being real and raw with Jason’s situation, it really helps those of us with family members facing new diagnoses within the community of Alzheimer’s and Dementia. It needs to stop being labeled in a derogatory way or assumed this way or that. Keep educating us! ❤

[@fredamurry4916]

Jason looks like he is loosing weight.

[@vickiewaller1570]

Cognitive test

[@pamettmayer2391]

I happy that you quit your job. Keep the humor the best you can, I know it’s hard.

[@janetwilson4290]

You quit you job, wyh is this funny.