Frontotemporal Dementia Interview 5/31/15
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- Опубликовано: 30 сен 2024
- We've been interviewing my dad, who has Frontotemporal Dementia, once a year to document the disease's progress. The first was in 2012. View the other interviews on my channel to watch the progression. You can find the previous year's interview at www.youtube.co....
When he was diagnosed, he said he wanted to help other families dealing with this disease since there's way less out there about it than about Alzheimer's. We took him yearly to be interviewed by med students when he was still capable of it, so that they could learn from him. And we started doing the videos for two reasons: 1) so that other people - particularly med students (his neurologist teaches around the world and has used these videos in her lectures) - wondering how Frontotemporal Dementia progresses can see it, and 2) so that his friends who lived far away could see how he was doing.
I have published a book called Fractured Memories: Because Demented People Need Love, Too. It features 40 paintings and recounts my family's hilarious and heartbreaking journey through my dad's dementia. I’m hoping it’ll help remind everyone - not just caregivers or people with loved ones who suffer from dementia - to look for the laughter hiding amidst the pain. You can find it at shop.emilypagea... or on Amazon!
This is very moving, I’ve just watched the other interviews you posted and I can tell what a wonderful and incredibly sweet man he was. Thank you for sharing your father with us.
Thank you!
You can see sadness in his eyes like he senses he is loosing his memory
Heart breaking.
Frontotemporal dementia does not affect memory, it affects behavior and personality.
@@myrukun idk looks like its affecting memory to me
@@SpaceDoge Barely. Hippocampus is in the temporal lobes, however this variant of dementia does not affect memory. It affects the pathways that permit expression, personality (frontal lobe), and interpretation of language. The memories are there, but he just can't express them well.
He has no idea what’s going on
holy shit this is so scary, must be very tough to see your dad not recognize any of the family members
It doesn't really matter, we all die
@@scottanno8861 some day during some time.
but yet he knows his own name. wow
To care for those who once cared for us is one of the highest honours...
Wow it is crazy how he responded to the music. It’s sad though that he is like that and he is not even that old.
I feel like weeping as I watch this, FTD is such a cruel disease. You all are so loving and it's clear that your beloved dad was a sweet and gentle man. RIP and my condolences to you all.
My mother just got diagnosed with this. Thank you for posting.
I'm so sorry to hear that. There is a whole series of these videos of my dad that we did yearly. It lets you see the progression of the disease. Check out my channel for the other videos if you're interested. I hope your family is able to get through your mother's dementia journey as gracefully as is possible.
What a wonderfully sweet father and husband. Your story left me in tears. Bless you and your family.
I LOVE his smile!
I lost my husband of 39 years almost 2 years ago...I'm so sorry your dad has this horrible disease sweetheart, my prayers are with all of you❤
I'm sorry you had to go through it, too. It's so hard.
Its amazing how so many dementia sufferers become responsive towards Music... you can talk and talk and talk and its as if you're talking to a brick wall, but start singing a song they are familiar with and its almost as if the dementia goes away for a few seconds.
Maybe a way forward with dementia sufferers is to communicate with them via music!
I used to sing to him as soon as I arrived for a visit because I felt like it woke his brain up and he was more responsive for the rest of the visit than when I didn't.
My father has ALS and FTD, and I agree with you 💯 percent.
Parkinsonism and subcortical syndromes makes you unresponsive to music, due to anhedonia and dopamine deprivation.
It’s like a slow computer that is trying to process. Sad for him and his family. Makes me realize we are only organic AI developed by God.
My husband suffers from this at 59
I agree thank you for sharing. I have tears watching this. What a gentle man. My brother was diagnosed with FTD several years ago, and now has been deemed incompetent. He is on the other side of the spectrum. He was once a very gentle man and now his personality is so very different with allot of anger. He hasn’t come to grips with loosing everything he worked hard for his whole life.
Oh wow Emily your Dad is such a beautiful man
I can clearly see he has declined from the last vlog
He is a very lucky man to have such a wonderful daughter and wife
I love it when as soon as you say his first name he quickly goes on to say it all
Thank you for sharing i will see you all next time and please give everyone a kiss too
Seeya later Alligator
Muwahhh xoxo 💜
Adelaide Sth Australia
JAINE CHAPMAN Thanks. He's a special guy, so he deserves the patience and attention he gets. The staff thinks him finishing his name is adorable. Whenever they walk by him, they say, "Nicholas," just to hear him finish it. It's very cute.
Emily Page
He is Absolutely gorgeous
Take care xoxo 💜 💖 💙
+JAINE CHAPMAN I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
I will definitely buy a copy in the next 2 weeks hun..
Just gotta wait for payday...
Love to your family xoxo💜💖💙
They are asking questions to fast and bombarding him... but I can tell he loves his family.
thanks for sharing. my father has same dementia for 5 years now. He does not talk at all does not recognize anyone except brother. does not use bathroom, walk on his own or eat. my mother who survived chemo is talking care of him now.
It is hard
So sorry to hear that. It's such a tough disease. Be sure to give your mom as much support as possible, because caregiving is exhausting!
This is such a cruel and horrible disease.... to forget everyone you love and care about, I think I would rather die. Life is all about those connections we make, the love we give and the memories we make and forgetting those is just hell. So sorry for your family, you seem like wonderful people.
Thank you for posting. As a trainee in a medical profession, I am appreciative of the opportunity to learn from your father and your family. Thank you!
I'm pretty greatful that dementia doesnt always run in families isnt inherited from mother to child I think it's great old people can live in peace and live life to the fullest after retirement and be great to the community that is such a beautiful thing to witness.
He seems really with it. Horrible disease. He's pretty clueless.
i love him ....He looks sooooo cute😚😚😚
The fact that he feels sad that he cannot remember anything makes me super sad. I can see the strugle in his eyes. Wishing you the best sir!
❤❤❤❤❤😢😢😢😢😢how Wonderfu such family 😊😊❤❤❤❤❤
He didn’t lose his sense of humor... dementia is a terrible thing
i got the same problema of your parent and im 29 years old only, i cant speack correctly... god help me.. :(
so younh
I'm so sorry to hear that. I hope you have people around you who will help you through.
I'm so sorry.
God is with you
Thank You Emily..... I see the change in him from previous video.... Love to you and your mom... (you have a beautiful voice!!)
In two years, what happened to your Dad?
After declining further, he passed away in February 2016. Here's a video of him at Christmas in 2015 ruclips.net/video/0RjV7pITWFI/видео.html. I wrote a book about our entire journey through dementia, if you're interested: www.amazon.com/Fractured-Memories-Emily-Page/dp/1366315405/ref=sr_1_1?ie=UTF8&qid=1488216405&sr=8-1&keywords=fractured+memories+emily+page
Emily Page I’m sorry for your loss. My condolences.
This is very inappropriate. Legally this man cannot consent to being recorded. This is disgusting. This should be treated legally as a medical interview. Watch yourselves.
Emily your papa is soo sweet...i had tears on my face watching all your videos. my father suffered the same disease. he passed out in 2012 december. my heartfelt condolences to you and ur family on his demise. be strong. this is reality we all have to face in life.
+AKum Biswas Thank you. I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Emily Page
Hi Emily i tried to download the ebook but couldn't find the link for it...
Can you please help me...
I've been watching your vlogs again an even though Our Nicolas Alan Page isn't here it just makes me feel closer to him an my dad..
Such a joy to watch him...
Hope your doing great..
please keep in touch..
Your dad would be so bloomin proud of you.
loads a love xoxo💜💖💙
At this time, it's no longer available for pre-order, but I'm hoping the book will be available by Christmas for purchase. I'll keep everyone posted when it's ready! Thank you for the interest!
Emily, I want to tell you how beautiful your family is. I work with patients that have dementia, they are the bravest souls and the families that have to witness this awful disease are the strongest people I've met. Although it is devastating, it is interesting (for lack of a better word) to see his journey, and yours. These videos have made me smile, and they have made me weep. It is always lovely to see the lost mind come to life when music or songs from the past are played. How your dads eyes sparkled when you sang together, though moments before he was mute. Cherish him, and treasure him. I lost my dad, aged 66 of a heart attack in October 2015. I miss him dearly. This has healed me a little today, seeing the father/daughter love. All the best. xxx
+Waciehawks I'm glad this has taken a little of the sting away for you today. I don't think any of us are any stronger than other families. When you don't have a choice, you just go through it. The people who work with dementia patients are the saints. It takes a special person to do that, so thank you.
+Waciehawks I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
I wanted to come back to watch this again because your Dad is so sweet.. Please accept my condolences on his passing , he's not suffering and I know is pain free. Please tell your mum I said how sorry I am and hugs to you both! I bet your dad left you both with so many wonderful memories that you can cherish for all time! Hugs take care 💞🙏🏼
+sandra dube Thank you. I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Music is amazing. The most dialogue and interation from patients always comes out with music.
Even up until about 3 days before he died, he could still sing a couple words to tunes even though he couldn't really talk anymore. It was the best (and my favorite) was to interact with him and keep him happy.
What the cause of his death? Is it by infection or this disease?
Thanks for sharing, this is helpful. I can tell you have learned how to try to get through to him. That takes a lot of love and patience and history. It seems like his soul is still there, it bursts through every once in a while like when he laughs, the grey matter just isn't working right.
Thank you for your lovely comment. We were so grateful for those little moments when he was more present and communicative.
Hello :) do you happen to know which varient of FTD is this ?
He had the behavioral variant. Early on, his behavior changed and inhibitions definitely lowered, but he didn't have aphasia.
Thanks for sharing the experience Emily. My father has this. He always worked his socks off to provide for my brother and I, and now that he's 60 he can't enjoy the fruits of his labour. FTD is truly a terrible diagnosis to get for patient and family. I'm sorry to hear about the passing of your father, I send my sincere condolences.
Thank you, Richard. So sorry to hear about your father, too. It's so hard that it hits people so young.
He lost so much in one year. So sad to see. I want to commend you, though, for documenting this, despite the feelings it evokes. It is very interesting to see what has gone and what remains. Thank you for doing this.
Thank you for the kind words.
Daughter has a gorgeous singing voice which likely means he did too. This is painful to watch but beautiful too in that the love for this man remains unabated.
Thank you for your lovely comment.
@@emilyanddadaww. My pleasure. Both my father in law and mother have dementia. I very much sympathize with you, Emily. Your dad is very lucky to have such loving caregivers. Godspeed to you and your family.
@@user-pq8cq9cv1h I'm so sorry you're having to deal with this, too. Hopefully you and your spouse will be able to support each other as you each navigate through it all. Hang in there.
Belachelijk om zo met je vader om te gaan respectloos.
Ridiculous to treat a stranger in such a disrespectful way. I am curious what about this you think is disrespectful. He is treated with love and kindness. Please read the description under the video to learn more about the videos. And then please think about how you interact with strangers on the internet who are clearly grieving their loved ones. I hope you have the day you deserve.
Emily. I am fascinated and saddened to see your dad's decline. My husband was recently diagnosed with FTD but we've been noticing signs for a few years. I'm also sad to see so few hits on your video. Thank you so much for posting these yearly interviews. My thoughts and prayers go to you, you're beautiful father and the rest of your family.
mamabullsheviks I'm so sorry to hear about your husband's diagnosis. It's a tough, tough disease. Just face it with as much love as you can, and don't be afraid to reach out to friends and family for help when you need it.
+mamabullsheviks I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
I'm sorry to hear about your dad I'm not sure how long I'm going to fully function BC I have been diagnosed with dementia and I'm only 29 what do I need to do for my family when the time comes that I can't help them I'm scared
+Joe Swick I'm so sorry to hear that. Just tell them NOW how much you love them and know that they'll do their best to take care of you. Don't leave anything important unsaid. That will get them through.
Thank you Emily
Your papa was so sweet❤️❤️ love from a dementia caregiver and COTA student
Thank you!
Hi emily, I am sorry for your father. 🙏🏻 my father is exactly the as your father, whenever I watch your videos, I see my father. I dont know what to do with this disease. I need your suggestions.
Great educational videos for those studying medicine. Thank you!
Thanks. When he was more verbal, we actually did interviews/educational talks with med school students at the University of Virginia about his disease. Anything we can do to help people have a better understanding, we'll do. You should also check out my blog where I talk a lot about our journey through dementia with him: www.emilypageart.wordpress.com
+Bogdan Patedakis Litvinov I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
I think he pretends he doesn't want to kno his daughter she's hideously anoying.......
Was he normally more talkative off camera? He nailed those presidents easily! The trivia seemed to be most successful.
emily i have the same problem than your father, my mind and personality is going to end..
amazing he remembers so much! go dad!
The last stage of this disease is very brutal I don’t wish this on anyone
dude i can just see the emptiness in his eyes... i broke down to this
Appreciate your sharing....
So sorry for your loss. My mom is in the late stages of FTD. She is not very vocal , doesn’t say my name or seems to remember much but she still smiles and laughs. When we tell her how nice she looks she always replies “well thank you!” That’s about the only coherent thing she says. I often wonder how much longer I’ll have her. 😢
I'm glad she still smiles and laughs. That's huge! Just show her all the love you can for as long as you can. Hang in there.
This interview felt too intense. It isn't necessary to give the patient a test or the third degree. It is obvious that the caretakers need reassurance but why not let him be? This felt very forced.
Please read the description on videos like this before commenting. And please remember that the person posting it is a family member who was doing the best they could for their loved one. Judgmental comments like this are hurtful.
Is this also known as Pick's desease? My dad was also diagnosed with this condition. It has been a struggle.
Yes, they are the same disease. I'm so sorry that your family is also going through this.
He's trying to access the memories, but their not there, sad.
Interestingly, we're not sure if they were there or not. Many times, it seemed pretty apparent that they were there based on him perking up when we'd mention certain things. Aphasia isn't necessarily a sign of no memories, but more of an inability to form the right words.
I just want to hug him...this is sad but beautiful too he is so loved and cared for and you can see it in his eyes that he can feel that and he knows that. I dont know if he is still with you or not but where ever he is i hope he still knows how deeply cared for and love he it. It shows here. Thankyou for sharing.
Thank you. He passed in 2016, but we loved him with all our might right up until the end.
@@emilyanddad im very sorry you had to lose him and have to lose him the way you did. My grandmother just past at the end of aug and she was a different person the last few months. She barely knew who we were. As she got worse and worse it felt like we were losing her every day. When she finially passed it was a relief. She had suffered long enough. Im glad he is at peace now.
😥❤
Thank you for sharing. Warmest regards to you and your family.
Thanks!
Emily,
Thank you for your videos. They make me feel like I'm not alone with my beautiful 74 year old mother who has suffered with Semantic Demential for the past 11 years. She is sweet and loving as your dad appeared to be but her health is beginning to decline. Her balance is crazy and she walks at times like she's in a limbo contest. It's such a terrible disease but we will make it one day at a time! Thanks. C
I'm so sorry you're having to go through it. Did you find the video of my dad walking oddly, too?
@@emilyanddad
Yes! She doesn’t do this consistently, she did it once around Christmas and once yesterday. I’m not sure what’s going on with that. It’s like she’s in a limbo contest and she can’t make herself straighten up.
@@cassienettles5392 my dad didn't do it consistently for awhile either. When it started happening more frequently is when we got him a wheelchair. We decided he wouldn't be able to manage a walker.
@@emilyanddad Something else to expect. Yesterday she decided to take my brother a cake for his birthday which is today. She just jumped in her car and was gone. I track her and she normally just goes around our hometown and is a good driver. She was so lost that it took my brother about an hour to realize he just had to go meet her because she can't comprehend verbal commands and was driving in circles. Then it took me forever it seemed to talk her into pulling over and waiting on me to come get her so that I could get her home. We go to her neurologist this week and I'm thinking her driving is over. That takes a lot of her independence as we do not live in a community with public transportation options. We will have to somehow find a source to help keep her going and not stagnate. I have a million questions for you of course. Let me know if you would like to email.
Cassie
😓😓😓😓😓
So fucking invasive! its disgusting. Ladies, be careful and take care of yourselves because this isn't appropriate.
Why the condescending attitude towards the man?
You seem to be mistaking love for condescension. Since we interacted with him daily, we knew what tones were most likely to get a response from him, and we utilized those tones accordingly. He responded well to us and always knew he was loved.
I think he pretends he doesn't want to kno his daughter she's hideously anoying.......
What is wrong with you? You know this is her channel, right? You know there's a real, live, grieving human being reading your messages? If your own father is alive, I hope he's ashamed of you. I hope he's ashamed that he failed so badly at raising a decent person. I hope shame burrows down into your bones and makes you itch and squirm until you're no longer tempted to ever, ever leave a comment like this one on anyone's channel again.
Let’s hope no one parades you on the internet when your time comes. Not even you deserves such disrespect.
Clearly, you didn't read the explanation posted with the video. Here it is: When he was diagnosed, he said he wanted to help other families dealing with this disease since there's way less out there about it than about Alzheimer's. We took him yearly to be interviewed by med students when he was still capable of it, so that they could learn from him. And we started doing the videos for two reasons: 1) so that other people - particularly med students (his neurologist teaches around the world and has used these videos in her lectures) - wondering how Frontotemporal Dementia progresses can see it, and 2) so that his friends who lived far away could see how he was doing.
Perhaps next time, before you leave a nasty comment with the intent to hurt the grieving loved one of someone with dementia, you'll consider if your comment is necessary or helpful. It was neither, but shows your implicit bias and accepted stigma against people with dementia. He was not something to be ashamed of or hide from the world. He did nothing wrong. He was a wonderful human being who was deeply loved, and he wanted to help other people who would be going through a similar journey to what my family went through.
@@emilyanddad what a load of self important, self centered nonsense. Think twice before you propagate this drivel.
Old age is tough even if you are fairly healthy for that age. To have this is actually toughest for the family/caretaker. The patient in a way is disappearing into his hollowness if that's a word. No one really knows what it's like because the victim doesn't know himself. If I found out I had it I would off myself while I still could, I couldn't do that to a family member. To me, it's selfish to burden others like that. I can't imagine having someone wiping my ass. TheReaper!
U were going too fast for him a d when he was looking at his wife, he was prob, trying to remember or recalling a memory of her, u fired too many questions too fast and in too short a time then 2 voices were coming at him at once, no wonder he clammed up u had his mind in termoil be more patient with him
He didn't clam up. This is how he was ALL THE TIME because of his disease. There was no point in waiting when we knew we weren't likely to get an answer because he was past the point of being able to answer. Read the description of the video, and perhaps you'll understand better why we did the videos. But thank you for passing judgement on how I interacted with my father, who you don't know. Next time, before you comment on something this painful, ask yourself if your comment is really necessary and is going to help a grieving stranger. If not, perhaps don't comment.
What is the purpose of this? This is what the poster is going to be like in a few years. Welcome to your future!!!!!! Absurd to say posting this was kind!!
Emily Page
You'd like to know the purpose of this? Did you read the description explaining the video? When he was diagnosed, he said he wanted to help other families dealing with this disease since there's way less out there about it than about Alzheimer's. We took him yearly to be interviewed by med students when he was still capable of it, so that they could learn from him. And we started doing the videos for two reasons: 1) so that other people - particularly med students (his neurologist teaches around the world and has used these videos in her lectures) - wondering how Frontotemporal Dementia progresses can see it, and 2) so that his friends who lived far away could see how he was doing. Your statement that we're being unkind reflects on your own stigma about mental health and dementia. He has no reason to be humiliated. He has done nothing wrong. He is just functioning at the level at which he is capable. You're choosing to judge him and look down on him for that, rather than embracing him where he is. And he was always happiest when we were encouraging and praising him, for obvious reasons - something that you wouldn't know because you never met or interacted with him. And finally, do you really think that we haven't considered what it will be like when/if we get dementia? Believe me, I've thought about it A LOT. I could inherit it. It's paralyzing sometimes. But I'd want my misfortune to be used for something good for someone else. So next time, before leaving nasty comments on a stranger's video, ask yourself: Is it kind? Is it necessary? If it's not, please don't ruin someone else's day when you don't know the full story.
Although I never met your dad, these videos make me miss him. Love the singing!
My Aunt has Lewy body dementia late stage fast. And it’s beyond horrific. She just got to the stage where she will never see her home again. Such a strong independent inspirational woman I modeled my life after is now trapped by a disease that robs you of your mind your body and your own self. 🥲🥲🥲🥲🥲. I am just praying literally she doesn’t suffer with this too long.