Slow progression. Caretakers/family: have lots of patiences. No loud screaming environment. Do not corner or block the patient. Redirect. Low soft voices. Clear any items that may hurt the patient. No clutter in the rooms. Lock all doors if the patient is wondering in rooms. Know what patient is doing most/all the time. Downtime show photographs. Have each family, pets, etc. individual pictures of him/her and ask about the pictures. Let the patient talk and you listen. Soft music during the patient’s era time. Hold hands. Be kind and have lots of patience. Caretakers/family: please don’t do this alone. Have time for “You” time also. God bless. CNA in Florida
My husband was diagnosed with bvftd at age 53.. He is now in a nursing home totally unaware of his situation thankfully. But is still a beautiful soul..
My dad had FTD since 2 years ago. He got it when he was 52 and now he is 54. He's deteriorating so fast, gets so aggressive, walks in front of the house and back, doesn't want to sleep much, very ego & many more. I hope that the medical experts will find a cure soon because it's really hard for both patient and caregiver...
The hardest part of being my wife’s caregiver is going through the loss a little at a time and have to be ok with it. You have no choice but to accept the changes, make the adjustments, and keep going. The other thing I find difficult is knowing we are at the end of our life together but we cannot share our memories together. There is only my point of view, one sided memories. There is no reliving it together, no sharing of our 41 years. People think they understand when they say “take care of you”. That means nothing to me. Even if I did get away for whatever length of time, the illness never goes away. Also, when you are trying to get a diagnosis for the strange behavior and then you find out what FTD is and means, all hope is lost. It’s 100% fatal. What are you supposed to hope for? She never had a chance even before we knew what she had. The only thing that keeps me strong is my faith in Jesus. I will go through this for her if He could go through what He went through for us.
And now 1 month after I wrote this comment she has passed. I did what I set out to do 2 years and 10 months after her official diagnosis. I kept her home. No hospital, no nursing home. I was sitting right next to her in the very early morning hours during her transition from this life to her next one, not 12 hours after I signed the home hospice papers. The entire duration of her illness I prayed for mercy for her. My prayers were answered. She didn’t struggle. She just stopped breathing. As peaceful as can be. Prayer does work. Even Jesus prayed. Never abandon your faith in God.
@@yuvgotubekidding I’m very sorry that you went through this awful struggle. I am very proud that you did everything for you in the absolute best possible way and that you were able to keep her home. And I am very thankful that her transition was a peaceful one. I hope you are doing as well as one can be. I know your original comments were nearly a year ago so I don’t know if you’ll see this but I want you to know that while I don’t know you personally but you have my support and my love.
Today the dr told me that my mom probably have this disease i just read your coment and im here thinking in my father. My heart is so broken i can only cry
I’ve had FTD since 2011. I now am 60 years of age . The disease torments me and my daughter on a daily basis. I wish there was more support for the family and the patient. It is a long goodbye 😢 Lisa
@@juanpedrolopezmartinez5380 what r ur symptoms now n how they were when it started? My husband is just so adamant n making our lives hell.. he separates all black items from food..either he is dead calm in bed whole say or speaks a lot of nonsense repeatedly. .not yet diagnosed..i wish there's an end to all this
@@jhancychaman5516 hey, dementia is a broad term, FTD is just one of the type of dementia.... Mainly in early stage there will be mild memory impairment however, memory for recent events may be unaffected, they may behave rudely and seems more easily distracted, day to day memory problem increases. Initially they will be having difficulties recalling object name which will develop into complete anomia. May this information helps you and hope your husband and family are doing fine. Thank you, regards😊
@@rajeshvaribajadeja6298 mri shows cerebral atrophy in temporoparietal n chronic ischemic changes .dr says no cure.. Now a days..he is so violent n adamant... He lost all faith in God.. He forgot how to sing songs, read Bible or interact with anyone.. Just keeps repeating n repeating words... Becoming so thin.. No idea wats going on n wat stage.. But we trust Jesus that He will heal him n he will be normal like before.. Praise the Lord..
I want to thank you from the bottom of my heart for your testimonial. You told a gut wrenching story about your husband's condition, but also reminded us all about the humanity in each and every person who suffers.
i cannot for the life of me understand why we cannot stop these protiens from blocking nerons yet we can just fly to the space like its nothing. I am angry and that is mt dementia story.
It was bittersweet for me to finally know that my Darling husband was diagnosed with Dementia/Alzheimer...for 15 yrs....I knew something didn't seem right...no common sense...could't reason with him...temper/blow ups....falling often...losing things....I just forgave and tried to be more patient until 4 mos. ago...he was taken to emergency...after a business trip...he was very ill...confused...hallucinating...paranoid...etc etc etc...there was a name to his illness...while I was devastated...and wished I had known sooner but he refused to see a Specialist...I would have tried harder to be more kinder, more patient...etc...I asked for his forgiveness, in his lucid moments...he said, 'no need for forgiveness'...He is now in a Memory Care center ...deteriorating much too quickly...I love him dearly...I see him everyday...he is afraid, I would leave him...NO NO NO, I would do that, I assured my Darling...thank you for this...I have herd of this illness/disease but have never known anyone and now, it seems it is so common...very tragic disease...I pray, his end stage will be pain free and peaceful....:(
So sad. I do have to disagree about the essence. With my husband, there is a body, but an angry, spiteful, paranoid person is not a person whom I knew for 25 years before he had a stroke and consequently FTD.
My dad has this and it's so sad. He's soon turning 67 and was about 60 when diagnosed. He was just starting his pension days with my mother (over 30 years married) when we noticed his behavior changed a lot. He lost at least 2 of his older brothers to the same horrible disease. I don't know how much he has left. I don't believe in God anymore, and this disease is is one of the reasons for it. May your loved ones who are struggling with this disease or passed away because of it, rest in peace
We lost a family friend to what I believe was FTD...I wasn't that close to her myself but my mom was, and it was really sad especially with all the misdiagnoses and the family not knowing what to do. I only figured out the diagnosis when it was too late for her to be treated and I'm only a layperson...the doctors never did figure it out for sure whether or not I was right. It absolutely destroyed my mom's friend and the total lack of help for their family was horrible. :-(
I’m so sorry..this disease seems to be more prominent than it used to be or it’s being recognized now. God help everyone and their families stricken with this awful life stripping disease. 😔❤️
God is real, I know it's hard. I'm going through it too with my best friend. But I believe that God can heal anybody. This world is not as kind as it used to be. I'm grateful cause God is my home that I'm hoping for answer before it's the end of him. It just destroyed the best part of it. Hes torment all day long. And they can't give him the right medication. He was diagnosed late, they kept giving the wrong answers and what was wrong with him. Was he bipolar schizophrenic and by the time they realized that they realized it was dimension and I feel like I just want to go back and soothe them because they just looked Uber the problem but I trust God and I believe it all my heart that everything is going to be alright whether hes hitting or not. I still love the Lord.
As a nurse's aid have no delusions about this disease. Have dementia contingency plans for my self. 3 hits of LSD followed by a lealth anount of morphine if given dementia diagnosis. There is no quality of life once a person's brain connections are gone. Burden family or long term care facility both eventually happen. By the time a person arrives in skilled care or worse assistant living memory care it is a hell I made plans to avoid.
Came here as speaking with Israelis who are working on these advancements. I do wonder of psychoactive mushrooms may come into play in the not so distant as a form of treatment. The issue has been blood/brain barrier in treatments, but we also know that vibration can break that and facilitate treatments reaching the target.
Our FDA here in America just approved a new drug for Alzheiners. I'm not a dr or scientist or anything, but I do have common sense, so I am going to go out on a limb and say I bet it would also help Dementia!! 😘
Im 31 and have just been diagnosed with this. They're hoping certain drugs, exercise routines and low cholesterol diet will slow down its sped up degeneration as I age
hey.....are u serious?where did u get ur diagnosis?which variant do u have?behavorial or progressive aphasia how did u get diagnosed in the first place?were u experiencing some symptoms that made u go check it out? im 33 and i suspect i have FTD too.....
Wat r the symptoms to look for in this disease...the earlier symptoms n later stage symptoms. ..how long a person survives with these symptoms. .can someone who commented here tell me pls?
@Adolf Hitler i am unable to understand...i just wanted to know wat symptoms in this disease as my husband has some symptoms like forgetfulness, adamant n aggressive behaviour. ..being calm..sleeping whole day...pls help us how to overcome the situation...
@Adolf Hitler i am unable to understand...i just wanted to know wat symptoms in this disease as my husband has some symptoms like forgetfulness, adamant n aggressive behaviour. ..being calm..sleeping whole day...pls help us how to overcome the situation...
Mam it can vary...person to person.. some common symptoms are cognitive problems (like speaking, reading or listening) Basically the frontal and poster lobes shrinks which causes this syndrome ( in medical term it is called atrophy).
@@goldberg2795 Mr. Pallav ...hv u any idea how long these patients survive...my husband is not diagnosed of anything yet..all 4 drs say it is chronic depression...antidepressants r making him more miserable...nowadays he usually stays calm in bed whole day...gets up sometimes. .very adamant n stubborn..says doesn't want food..gets so angry all the time. ..dont know wat diagnosis. .he is getting weaker too
@@jhancychaman5516 mam for cure or managing illness first you need to know what actually it is.. you can consult some good nuerologist or psychiatrist ... E.g PGI Chandigarh is a good to be for such patients
Slow progression. Caretakers/family: have lots of patiences. No loud screaming environment. Do not corner or block the patient. Redirect. Low soft voices. Clear any items that may hurt the patient. No clutter in the rooms. Lock all doors if the patient is wondering in rooms. Know what patient is doing most/all the time. Downtime show photographs. Have each family, pets, etc. individual pictures of him/her and ask about the pictures. Let the patient talk and you listen. Soft music during the patient’s era time. Hold hands. Be kind and have lots of patience. Caretakers/family: please don’t do this alone. Have time for “You” time also. God bless. CNA in Florida
My husband was diagnosed with bvftd at age 53.. He is now in a nursing home totally unaware of his situation thankfully. But is still a beautiful soul..
So sorry..
It's a horrible disease it's called the long goodbye.
Wow 🤧🥺
My dad had FTD since 2 years ago. He got it when he was 52 and now he is 54. He's deteriorating so fast, gets so aggressive, walks in front of the house and back, doesn't want to sleep much, very ego & many more. I hope that the medical experts will find a cure soon because it's really hard for both patient and caregiver...
It's been 3 years since you posted this message, how is your father today?
Urvashi. Blessings to you and your family..... FTD's such a cruel disease.. my heart goes out to you..
The hardest part of being my wife’s caregiver is going through the loss a little at a time and have to be ok with it. You have no choice but to accept the changes, make the adjustments, and keep going. The other thing I find difficult is knowing we are at the end of our life together but we cannot share our memories together. There is only my point of view, one sided memories. There is no reliving it together, no sharing of our 41 years. People think they understand when they say “take care of you”. That means nothing to me. Even if I did get away for whatever length of time, the illness never goes away. Also, when you are trying to get a diagnosis for the strange behavior and then you find out what FTD is and means, all hope is lost. It’s 100% fatal. What are you supposed to hope for? She never had a chance even before we knew what she had. The only thing that keeps me strong is my faith in Jesus. I will go through this for her if He could go through what He went through for us.
And now 1 month after I wrote this comment she has passed. I did what I set out to do 2 years and 10 months after her official diagnosis. I kept her home. No hospital, no nursing home. I was sitting right next to her in the very early morning hours during her transition from this life to her next one, not 12 hours after I signed the home hospice papers. The entire duration of her illness I prayed for mercy for her. My prayers were answered. She didn’t struggle. She just stopped breathing. As peaceful as can be. Prayer does work. Even Jesus prayed. Never abandon your faith in God.
@@yuvgotubekidding Bless you.
@@sauces_official Thank you, I have been blessed. Bless you.
@@yuvgotubekidding I’m very sorry that you went through this awful struggle. I am very proud that you did everything for you in the absolute best possible way and that you were able to keep her home. And I am very thankful that her transition was a peaceful one. I hope you are doing as well as one can be. I know your original comments were nearly a year ago so I don’t know if you’ll see this but I want you to know that while I don’t know you personally but you have my support and my love.
Today the dr told me that my mom probably have this disease i just read your coment and im here thinking in my father. My heart is so broken i can only cry
I’ve had FTD since 2011. I now am 60 years of age . The disease torments me and my daughter on a daily basis. I wish there was more support for the family and the patient. It is a long goodbye 😢 Lisa
Do these patients be aggressive n adamant n calm? Do they grow weaker? Save us God...pls
i have too lisa... im 33 years old and im trasnforming into a big baby. I can confirm.
@@juanpedrolopezmartinez5380 what r ur symptoms now n how they were when it started? My husband is just so adamant n making our lives hell.. he separates all black items from food..either he is dead calm in bed whole say or speaks a lot of nonsense repeatedly. .not yet diagnosed..i wish there's an end to all this
@@jhancychaman5516 hey, dementia is a broad term, FTD is just one of the type of dementia.... Mainly in early stage there will be mild memory impairment however, memory for recent events may be unaffected, they may behave rudely and seems more easily distracted, day to day memory problem increases. Initially they will be having difficulties recalling object name which will develop into complete anomia.
May this information helps you and hope your husband and family are doing fine.
Thank you, regards😊
@@rajeshvaribajadeja6298 mri shows cerebral atrophy in temporoparietal n chronic ischemic changes .dr says no cure.. Now a days..he is so violent n adamant... He lost all faith in God.. He forgot how to sing songs, read Bible or interact with anyone.. Just keeps repeating n repeating words... Becoming so thin.. No idea wats going on n wat stage.. But we trust Jesus that He will heal him n he will be normal like before.. Praise the Lord..
I want to thank you from the bottom of my heart for your testimonial. You told a gut wrenching story about your husband's condition, but also reminded us all about the humanity in each and every person who suffers.
My mother has frontotemporal dementia my heart goes out to you it turns your life around and robs you of everything but your hope
i cannot for the life of me understand why we cannot stop these protiens from blocking nerons yet we can just fly to the space like its nothing. I am angry and that is mt dementia story.
I agree can't cute cancer either just sickening
Sending lots of love and prayers Urvashi
She is so well spoken
I feel you maam. It turned life upside down and to accept this is hard.
God Bless this woman for sharing her story...very profound, thank you for this channel
It was bittersweet for me to finally know that my Darling husband was diagnosed with Dementia/Alzheimer...for 15 yrs....I knew something didn't seem right...no common sense...could't reason with him...temper/blow ups....falling often...losing things....I just forgave and tried to be more patient until 4 mos. ago...he was taken to emergency...after a business trip...he was very ill...confused...hallucinating...paranoid...etc etc etc...there was a name to his illness...while I was devastated...and wished I had known sooner but he refused to see a Specialist...I would have tried harder to be more kinder, more patient...etc...I asked for his forgiveness, in his lucid moments...he said, 'no need for forgiveness'...He is now in a Memory Care center ...deteriorating much too quickly...I love him dearly...I see him everyday...he is afraid, I would leave him...NO NO NO, I would do that, I assured my Darling...thank you for this...I have herd of this illness/disease but have never known anyone and now, it seems it is so common...very tragic disease...I pray, his end stage will be pain free and peaceful....:(
So sad. I do have to disagree about the essence. With my husband, there is a body, but an angry, spiteful, paranoid person is not a person whom I knew for 25 years before he had a stroke and consequently FTD.
Makes me so sad to read messages like this, such a destructive disease. I hope you both have many happy memories together before.
My dad has this and it's so sad. He's soon turning 67 and was about 60 when diagnosed. He was just starting his pension days with my mother (over 30 years married) when we noticed his behavior changed a lot. He lost at least 2 of his older brothers to the same horrible disease. I don't know how much he has left. I don't believe in God anymore, and this disease is is one of the reasons for it. May your loved ones who are struggling with this disease or passed away because of it, rest in peace
My Father has this Stupid Thing PPA. I dont know what to do he is 67 now i dont want to lose my Dad. He has done alot for us.
Can this spread to you too? Since you’re his child?
I wonder how you are. I'm sorry this disease is so awful!
She is a brave woman! Beautiful soul. She loves him and for sure he loves her even though he might not remember it
So true.
We lost a family friend to what I believe was FTD...I wasn't that close to her myself but my mom was, and it was really sad especially with all the misdiagnoses and the family not knowing what to do. I only figured out the diagnosis when it was too late for her to be treated and I'm only a layperson...the doctors never did figure it out for sure whether or not I was right. It absolutely destroyed my mom's friend and the total lack of help for their family was horrible. :-(
Urvashi, Thank you for your bravery in sharing your story and private struggles with the world. Blessings to you both.
Much love and blessings. May the God of mercy and healing, Jesus Christ, bring hope and wholeness into your lives. 🙏 ❣
I’m so sorry..this disease seems to be more prominent than it used to be or it’s being recognized now. God help everyone and their families stricken with this awful life stripping disease. 😔❤️
Prayers to your family 🙏🙏🙏🙏
U both r so lucky to have each other...
🖤
Hang on. People have had Senile Dementia FOREVER. Why are we saying this is a new thing!
😔🙏
I’m so so sorry you are all going through this.
My cousin was diagnosed with this desease 6 years ago, he recently passed away…
The human body is filled with so many faults that lead to so many diseases and problems it’s ridiculous. If god was real, this wouldn’t have happened.
God is real, I know it's hard. I'm going through it too with my best friend. But I believe that God can heal anybody. This world is not as kind as it used to be. I'm grateful cause God is my home that I'm hoping for answer before it's the end of him. It just destroyed the best part of it. Hes torment all day long. And they can't give him the right medication. He was diagnosed late, they kept giving the wrong answers and what was wrong with him. Was he bipolar schizophrenic and by the time they realized that they realized it was dimension and I feel like I just want to go back and soothe them because they just looked Uber the problem but I trust God and I believe it all my heart that everything is going to be alright whether hes hitting or not. I still love the Lord.
Big hugs too you & your family 🙏🙏
Thank you for sharing your struggle. My heart really goes out to you and your family. So very difficult for everyone involved.
@Scroticus...pls provide ur email id so I can reply to this in mail..thank u...
As a nurse's aid have no delusions about this disease. Have dementia contingency plans for my self. 3 hits of LSD followed by a lealth anount of morphine if given dementia diagnosis.
There is no quality of life once a person's brain connections are gone. Burden family or long term care facility both eventually happen. By the time a person arrives in skilled care or worse assistant living memory care it is a hell I made plans to avoid.
Came here as speaking with Israelis who are working on these advancements. I do wonder of psychoactive mushrooms may come into play in the not so distant as a form of treatment. The issue has been blood/brain barrier in treatments, but we also know that vibration can break that and facilitate treatments reaching the target.
Our FDA here in America just approved a new drug for Alzheiners. I'm not a dr or scientist or anything, but I do have common sense, so I am going to go out on a limb and say I bet it would also help Dementia!! 😘
Hope someone like this wonderful woman is there for me if something like this happens.
Im 31 and have just been diagnosed with this. They're hoping certain drugs, exercise routines and low cholesterol diet will slow down its sped up degeneration as I age
hey.....are u serious?where did u get ur diagnosis?which variant do u have?behavorial or progressive aphasia
how did u get diagnosed in the first place?were u experiencing some symptoms that made u go check it out?
im 33 and i suspect i have FTD too.....
Sending strength and blessings to you
He seen everyone as equals?
Bless you both ♥️
My goodness 😫🥺
My Father Has PPA
Wat r the symptoms to look for in this disease...the earlier symptoms n later stage symptoms. ..how long a person survives with these symptoms. .can someone who commented here tell me pls?
@Adolf Hitler i am unable to understand...i just wanted to know wat symptoms in this disease as my husband has some symptoms like forgetfulness, adamant n aggressive behaviour. ..being calm..sleeping whole day...pls help us how to overcome the situation...
@Adolf Hitler i am unable to understand...i just wanted to know wat symptoms in this disease as my husband has some symptoms like forgetfulness, adamant n aggressive behaviour. ..being calm..sleeping whole day...pls help us how to overcome the situation...
Mam it can vary...person to person.. some common symptoms are cognitive problems (like speaking, reading or listening)
Basically the frontal and poster lobes shrinks which causes this syndrome ( in medical term it is called atrophy).
@@goldberg2795 Mr. Pallav
...hv u any idea how long these patients survive...my husband is not diagnosed of anything yet..all 4 drs say it is chronic depression...antidepressants r making him more miserable...nowadays he usually stays calm in bed whole day...gets up sometimes. .very adamant n stubborn..says doesn't want food..gets so angry all the time. ..dont know wat diagnosis. .he is getting weaker too
@@jhancychaman5516 mam for cure or managing illness first you need to know what actually it is.. you can consult some good nuerologist or psychiatrist ... E.g PGI Chandigarh is a good to be for such patients
Moke Tyson's amygfila
Not much difference tbeure eating the same foof at the sane table
AIP diet is the solution!