My mother passed the dementia tests in the doctor office with flying colors in April. She is stage 6 dementia. Don't let doctors tell you nothing's wrong. YOU are the best at knowing what's wrong.
My sister died from FTD. after seeing several doctors who were trying to figure out what was going on with her, she was referred to a specialist in dementia. He said there was nothing wrong with her and that getting a job to keep her mind active was all she really needed. My niece and nephew tried hard to explain what it was like day to day for her but they wasted their breath. It was only after she drove straight into the side of a bus that something was done.
How do you take care of yourself when the person you care for relies on you 100%? The responsibility never goes away. The illness only gets worse. There is no treatment, there is no cure. What are you supposed to hope for?
My mom passed in 2012. We came to realize that she had symptoms years before. She started taking the same lunch to work every day. Things like that.... When she was diagnosed, it didn’t seem to bother her one bit. That, in itself, was not my mom. Her entire personality changed, a parallel personality is what they call it. Everything she was changed, doing the opposite of what she normally would have done, watching tv shows she wouldn’t have watched, from nature and documentary to true crime. She had always eaten healthy but started eating things I’d never known her to eat, like potato chips, specific kinds only, apple fritters, specifically from 7-11. She would wipe her hands on her bed, while looking you straight in the eye. She started lying about the strangest things, not knowing she was lying. She became totally apathetic, uncaring and it showed in her face, her eyes. She became blank, expressionless. I have not yet grieved and try not to think about what happened. I believe it is one of the worst things that can happen to a family.
I am a physician, and my partner (who was about 50 years old) personality began to change. He began to lose all social filters; and was not making sense. He was a surgeon; and his surgery was perfect. He finally got a MRI and was positive for FTD. He immediately retired. So sad. So hard on his wife; and two young kids. Your story is heart breaking. Thank you for sharing.
Hi. I am a physician and my husband, also a specialist, was diagnosed with FTD> I am looking for someone with whom to talk about my experience.. Please reply if able!
I think we can all relate to the conversation Diane is sharing if you are or have been a primary carer, spouse or family member. I'm a nurse who basically gave up the last 3 years of my life to move into my Mom's home to care for her as I knew she was entering the unsafe to be at home stage. I absolutely felt that I was fully able and mentally sturdy enough to take this on. I was wrong on that front, and I did not receive adequate supportive services from healthcare system, home health nurses, her physician, or hospice. Failed us at every venture. I would like it to be my final life's work, to advocate or become a lobbyist to make changes for those survivors who are in this situation, because I not only was trying to give my Mom some quality of life, but I should of had some quality also because it took me down as if I had the disease also, trying to function as if I was in a psych facility every single day.
Hi there, I myself is going through something quite similar to yourself, except it's my husband, 46yrs old and has had frontotemporaldementia for I'd say 7 yrs now. He has totally changed from the person I once knew. We have 3 small kids together, 7, 9 and 11 years old. It's so devastating to be in this situation and so hopeless.
@@theairshiparmy6465 Thank you for sharing. There are many groups and advocates and "support groups" for those involved with any type of primary care giving of loved ones suffering from this disease process. But, in my estimation after having gone through this recently, the number one thing aside from all other forms of support is the great need for mental health support and therapy during and after the entire experience and process of decline. I had no access to any mental health or therapy, which now has manifested in prolonged PTSD. Rarely is it that family members are not engulfed and seriously affected by this. Resources need to provide mental health support for those caring for our loved ones because it will take you down, and a long road to recovery after you loose someone to this disease.
thankyou for sharing this, iv been the caretaker for my dad that has this.. its been the hardest thing iv ever had to deal with and not go crazy myself...
Thank you for sharing. I saw my husbands brain scan after he passed and realized he had FTD for all of our 11 years of marriage. He was a professor and taught for only 2 1/2 years before going on disability. I am still sad to this day.
My very bright mom got this and went into all the stages of dementia. Unfortunately it was a 10 year journey It is very hard to see someone you love go through this disease. It is awful to watch your loving mother fade and not even know you
My beautiful mother died from this brutal disease two years ago. It is soul crushing. This was also our path. She died almost 1 year exactly from diagnosis. She had FTD/PPA.
Thank you for your video my hubby is undiagnosed but this sounds like my hubby all the tests no answers it breaks my heart hubby is 56 we have been married 37yrs since high school😢💔 I think he might have FTD but we have no insurance or funds to continue tests to get some answers. Hugs and God bless you your telling my story it feels like
OMG. This video just showed up out of the blue on my RUclips feed. Attempting to be helpful to an older sister whose behavior in recent years has alienated everyone else. This diagnosis would offer an explanation for it all.
Been there done that and Im telling you that placing him does NOT mean a bad thing. There is NO reason that two people go down the drain when one is going to anyways.........
Thank you for your statement here and additionally, I've heard MANY stories of folks saying their loved one adjusted well to the facility once accustomed and actually enjoys socializing with the other residents. We have to remember that in this disease, there is a point where the patient is very much "in the moment" and not "abstracting" much. My dad did more socializing in the hospital than in the last 10 years of his life with alz! You know when that point is and again, your comment sums things up well. (Our loved ones would not want us to be agonizing either...)
You are so lucky to have received so much support. I did not. I came home to a loaded hand gun on the kitchen table. My husband spent my entire pay check for 2 wks except $500.00 & couldn't tell me what he spent it on. He started divorce proceeding but hadn't paid the filing fee. I had to petition the court for an involuntary mental evaluation. I placed him in a facility for 2 years then was able to change my work schedule from afternoons to every weekend on midnights as a CT tech in a trauma center. I did this until I retired 2 years ago & he lived at home till he past away in Oct.
My mother died recently from this disease after being diagnosed 8 years ago. I hope they find a cure. It's been a rough road. We had her at home with 8 hrs of nursing daily. I miss my mom so much it hurts.
Bless you for coming forward with what you have said.Similer cercumstances here.Wont go into it much,on what you have said is more than I have received for the last 10 Yrs.and what a trip and not even leave the farm. No one and I mean no one has EVER mentioned this to me. All kinds of diagnosis of different illnesses on my phone but none as clear as what you discussed.I was never allowed to go to Dr.With my husband.Ever.So,I only knew what he told me.And being a veteran,his view now is to not ever leave here.Next step trying to figure the Dr.appointment out.And seeing if things can get under control.So Confusing to say the least.We both need to get things under control .Soon.Thank you.
I'm so glad I found you great video about taking care of ourselves. Husband was diagnosed in 2014 with Alz and now we are thinking FTD which I have suspected 2 yrs ago. He can still bathe and do things but gets angry in many ways especially if I don't do what he wants. so Alz with a varient of FTD.
FWIW, my brother with FTD was aggitated and somewhat argumentative and we've finally decided to ask the doc for some meds for agitation. He prescribed him Buspirone 3 weeks ago and it has basically gotten rid of the agitation completely. Not everyone will have the same response and though no meds can cure it, there are definitely med options for the mood symptoms. This can make a HUGE difference in how everyone is managing and thankfully we have at least discovered THOSE. Love and comfort to you, my friend.
I don't know how old this thread is, but I applaud you for sharing your story. You were so wise to take the personal trainer classes; and eventually the nursing home. The barbecue sauce idea was so great in so many ways. Yours is one of the best I have read. It has a very positive feel to it.
I dont mean to be offtopic but does someone know a method to log back into an Instagram account? I stupidly forgot the account password. I appreciate any tips you can give me.
@Azariah Alessandro Thanks for your reply. I found the site thru google and Im in the hacking process atm. I see it takes quite some time so I will reply here later with my results.
My husband has been diagnosed with vascular dementia. I first noticed things about 7 yrs ago. He has more bad days than good ones. He expects me to take care of him. I'm to the point of just giving up. I'm 78 and he is 77, he is angry most of the time and he threatens me. I'm afraid to place him in a home. I don't think they would keep him because he can be very violent then I would have to bring him back home and that terrifies me.
There are places that will take him. Memory facilities are specifically designed for this. They are equipped to deal with patience with severe agitation. And it will pass. It is a phase that many patients pass through.
This is a great story and all but if u don't have the $$ to have them keep him another week they're gonna drop him on ur door step and tell u "it sucks to suck" if u can't pay u don't get that kind if help☹
I watched yr video Diana and while I was listening it sounded more and more like my husband he has stuck his fingers in hot wax and then put it in his mouth everyday it was something else! We were married in 2017 and he was diagnosed with mild Dementia in 2018 my heart was broken he may have FTD. He is in the hospital getting help and having mental tests to see what is going on. I can’t visit him since he was admitted to the VA Hospital in Marion and since Covid19 I cannot visit him 💔 I am asking for prayer for my wonder husband Larry sweetest man I ever met! I feel for caregivers but NOW i am not alone I want to keep myself strong but inside I am very sad.
My wife has been diagnosed with FTD along with PPA. At this stage nearly everything has to be done for her, I.e. bathing, dressing, etc. I don’t know at what point, if at all, that I will need to admit her to a facility to care for her. One concern is whether I can afford such a facility. If you could speak to this issue, please do. I read that it is expensive, beyond my financial ability, and is not covered by most insurance companies or Medicare. Thank you for your story.
Back in the 70's my grandmother could talk for hours on the phone but not saying who the caller was. Dementia was not yet diagnosed. We watched a slower regression until she her daughter's funeral. It was like a blind came over her memory. 10 more years we had her, but she was a shadow of herself. Dangerous things, my grandmother loved to hide scissors in weird places - we would find under cushions & between sheets in the linen cupboard.
If people had Hoyer lifts at home that would really help in the care of them .My Husband had MD and I did a lot of using that devise or I could not have taken care of him for 4 years while he could not walk and was in depends He was 61 when he past away from a infection in his legs Even with a home Health Nurse taking care of his legs he still did get a infection .
My son will be 65 in Nov, in Nov of 2020 he was diagnosed with FTD , he is very belligerent and wants to strike me or his wife,There are times when he apologizes to me for his behaviour but very little of whatever he says makes any sense at all He is seeing a neurologist regularly.
Where are you? Where are all the doctors and advisors that helped you? I don't have any thing lilke what you have. Thanks for the tips tho. Beverly is the patient, We set up the account in her name bc it's a Google acct.
Angel Villegas How dare you! Her story is mine also. Walk just one past week in our shoes, let alone years. Grieve for your mate for years! Watch your children see their mother or father slipping away for years! Your judgement was best kept to yourself.
@@kathleenbryant7778 looking for stories that best fit yours to make you feel better about the fact that you gave up on your soulmate is no better than this lady that gave up on her own.
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My mother passed the dementia tests in the doctor office with flying colors in April. She is stage 6 dementia. Don't let doctors tell you nothing's wrong. YOU are the best at knowing what's wrong.
Hello Victoria
How are you doing today?
My sister died from FTD. after seeing several doctors who were trying to figure out what was going on with her, she was referred to a specialist in dementia. He said there was nothing wrong with her and that getting a job to keep her mind active was all she really needed. My niece and nephew tried hard to explain what it was like day to day for her but they wasted their breath. It was only after she drove straight into the side of a bus that something was done.
How do you take care of yourself when the person you care for relies on you 100%? The responsibility never goes away. The illness only gets worse. There is no treatment, there is no cure. What are you supposed to hope for?
My mom passed in 2012. We came to realize that she had symptoms years before. She started taking the same lunch to work every day. Things like that.... When she was diagnosed, it didn’t seem to bother her one bit. That, in itself, was not my mom. Her entire personality changed, a parallel personality is what they call it. Everything she was changed, doing the opposite of what she normally would have done, watching tv shows she wouldn’t have watched, from nature and documentary to true crime. She had always eaten healthy but started eating things I’d never known her to eat, like potato chips, specific kinds only, apple fritters, specifically from 7-11. She would wipe her hands on her bed, while looking you straight in the eye. She started lying about the strangest things, not knowing she was lying. She became totally apathetic, uncaring and it showed in her face, her eyes. She became blank, expressionless. I have not yet grieved and try not to think about what happened. I believe it is one of the worst things that can happen to a family.
Even i had experienced the same things with my mom...my is suffering from dementia
I am a physician, and my partner (who was about 50 years old) personality began to change. He began to lose all social filters; and was not making sense. He was a surgeon; and his surgery was perfect. He finally got a MRI and was positive for FTD. He immediately retired. So sad. So hard on his wife; and two young kids. Your story is heart breaking. Thank you for sharing.
Hi. I am a physician and my husband, also a specialist, was diagnosed with FTD> I am looking for someone with whom to talk about my experience.. Please reply if able!
I think we can all relate to the conversation Diane is sharing if you are or have been a primary carer, spouse or family member. I'm a nurse who basically gave up the last 3 years of my life to move into my Mom's home to care for her as I knew she was entering the unsafe to be at home stage. I absolutely felt that I was fully able and mentally sturdy enough to take this on. I was wrong on that front, and I did not receive adequate supportive services from healthcare system, home health nurses, her physician, or hospice. Failed us at every venture. I would like it to be my final life's work, to advocate or become a lobbyist to make changes for those survivors who are in this situation, because I not only was trying to give my Mom some quality of life, but I should of had some quality also because it took me down as if I had the disease also, trying to function as if I was in a psych facility every single day.
Hi there, I myself is going through something quite similar to yourself, except it's my husband, 46yrs old and has had frontotemporaldementia for I'd say 7 yrs now. He has totally changed from the person I once knew. We have 3 small kids together, 7, 9 and 11 years old. It's so devastating to be in this situation and so hopeless.
@@theairshiparmy6465 Thank you for sharing. There are many groups and advocates and "support groups" for those involved with any type of primary care giving of loved ones suffering from this disease process. But, in my estimation after having gone through this recently, the number one thing aside from all other forms of support is the great need for mental health support and therapy during and after the entire experience and process of decline. I had no access to any mental health or therapy, which now has manifested in prolonged PTSD. Rarely is it that family members are not engulfed and seriously affected by this. Resources need to provide mental health support for those caring for our loved ones because it will take you down, and a long road to recovery after you loose someone to this disease.
@@theairshiparmy6465 I’m so sorry. I hope you have help
Yea me too.
My mother has this and terrorized me. I can't get anyone to believe me how dangerous she is to herself and others
Such a cruel disease, but What an incredibly brave woman..
thankyou for sharing this, iv been the caretaker for my dad that has this.. its been the hardest thing iv ever had to deal with and not go crazy myself...
Thank you for sharing. I saw my husbands brain scan after he passed and realized he had FTD for all of our 11 years of marriage. He was a professor and taught for only 2 1/2 years before going on disability. I am still sad to this day.
She is so well spoken. Nothing gets by this woman she’s as sharp as a tack.
My very bright mom got this and went into all the stages of dementia. Unfortunately it was a 10 year journey
It is very hard to see someone you love go through this disease. It is awful to watch your loving mother fade and not even know you
My beautiful mother died from this brutal disease two years ago. It is soul crushing. This was also our path. She died almost 1 year exactly from diagnosis. She had FTD/PPA.
Thank you for your video my hubby is undiagnosed but this sounds like my hubby all the tests no answers it breaks my heart hubby is 56 we have been married 37yrs since high school😢💔 I think he might have FTD but we have no insurance or funds to continue tests to get some answers. Hugs and God bless you your telling my story it feels like
How is he now?(question for marilyn elder)
OMG. This video just showed up out of the blue on my RUclips feed. Attempting to be helpful to an older sister whose behavior in recent years has alienated everyone else. This diagnosis would offer an explanation for it all.
Excellent interview, Ty!
Been there done that and Im telling you that placing him does NOT mean a bad thing. There is NO reason that two people go down the drain when one is going to anyways.........
Thank you for your statement here and additionally, I've heard MANY stories of folks saying their loved one adjusted well to the facility once accustomed and actually enjoys socializing with the other residents. We have to remember that in this disease, there is a point where the patient is very much "in the moment" and not "abstracting" much. My dad did more socializing in the hospital than in the last 10 years of his life with alz! You know when that point is and again, your comment sums things up well. (Our loved ones would not want us to be agonizing either...)
Thank you for sharing this personal story.
Thank you for sharing this difficult story.
Thanks for sharing. My father was diagnosed with Acute Dementia. It breaks my heart to see him how the disease has taken over.
You are so lucky to have received so much support. I did not. I came home to a loaded hand gun on the kitchen table. My husband spent my entire pay check for 2 wks except $500.00 & couldn't tell me what he spent it on. He started divorce proceeding but hadn't paid the filing fee. I had to petition the court for an involuntary mental evaluation. I placed him in a facility for 2 years then was able to change my work schedule from afternoons to every weekend on midnights as a CT tech in a trauma center. I did this until I retired 2 years ago & he lived at home till he past away in Oct.
This is horrible-- I'm so sorry!
My mother died recently from this disease after being diagnosed 8 years ago. I hope they find a cure. It's been a rough road. We had her at home with 8 hrs of nursing daily. I miss my mom so much it hurts.
I am sorry for the loss of your mother, my husband has it
Saddened by your loss. My husband had t fr ten years. Mercifully, cancer tk hm quickly.
Dr.Todd Levine my dad has it he seems meaner it’s so sad I love him
B
Be! Vascular dementia
Bless you for coming forward with what you have said.Similer cercumstances here.Wont go into it much,on what you have said is more than I have received for the last 10 Yrs.and what a trip and not even leave the farm. No one and I mean no one has EVER mentioned this to me. All kinds of diagnosis of different illnesses on my phone but none as clear as what you discussed.I was never allowed to go to Dr.With my husband.Ever.So,I only knew what he told me.And being a veteran,his view now is to not ever leave here.Next step trying to figure the Dr.appointment out.And seeing if things can get under control.So Confusing to say the least.We both need to get things under control .Soon.Thank you.
Hello Mary
Ask your doctor about Buspirone for agitation.
So much of Diane’s story mirrors my own. Thank you for the support.
You’re telling my story almost 💯 .. thank you.
Hope you are well. Thank you for sharing. Mine had it too. Similar strange obsessions.
Thank you for sharing this with me.
Np one ever talks about the finances. What do you if you can't afford a facility?
I'm so glad I found you great video about taking care of ourselves. Husband was diagnosed in 2014 with Alz and now we are thinking FTD which I have suspected 2 yrs ago. He can still bathe and do things but gets angry in many ways especially if I don't do what he wants. so Alz with a varient of FTD.
May God be with you and show you His kindness and grace Lorraine. May the love of His Son Jesus surround you and embrace you warmly. Please take care.
FWIW, my brother with FTD was aggitated and somewhat argumentative and we've finally decided to ask the doc for some meds for agitation. He prescribed him Buspirone 3 weeks ago and it has basically gotten rid of the agitation completely. Not everyone will have the same response and though no meds can cure it, there are definitely med options for the mood symptoms. This can make a HUGE difference in how everyone is managing and thankfully we have at least discovered THOSE. Love and comfort to you, my friend.
I don't know how old this thread is, but I applaud you for sharing your story. You were so wise to take the personal trainer classes; and eventually the nursing home. The barbecue sauce idea was so great in so many ways. Yours is one of the best I have read. It has a very positive feel to it.
I dont mean to be offtopic but does someone know a method to log back into an Instagram account?
I stupidly forgot the account password. I appreciate any tips you can give me.
@Emerson Rocky instablaster =)
@Azariah Alessandro Thanks for your reply. I found the site thru google and Im in the hacking process atm.
I see it takes quite some time so I will reply here later with my results.
@Azariah Alessandro it did the trick and I actually got access to my account again. Im so happy!
Thanks so much, you really help me out!
@Emerson Rocky happy to help :)
My husband has been diagnosed with vascular dementia. I first noticed things about 7 yrs ago. He has more bad days than good ones. He expects me to take care of him. I'm to the point of just giving up. I'm 78 and he is 77, he is angry most of the time and he threatens me. I'm afraid to place him in a home. I don't think they would keep him because he can be very violent then I would have to bring him back home and that terrifies me.
😢🙏🏼
There are places that will take him. Memory facilities are specifically designed for this. They are equipped to deal with patience with severe agitation. And it will pass. It is a phase that many patients pass through.
Thanks for sharing 💜
This is a great story and all but if u don't have the $$ to have them keep him another week they're gonna drop him on ur door step and tell u "it sucks to suck" if u can't pay u don't get that kind if help☹
You are so right! If I place my loved one in a home or place that could care for him, I would be living out of my car.
@@bakokat6982 my problem exactly
Here just to house them is $3500/month then memory care is an additional $1800/month. I only make $2k/month
I watched yr video Diana and while I was listening it sounded more and more like my husband he has stuck his fingers in hot wax and then put it in his mouth everyday it was something else! We were married in 2017 and he was diagnosed with mild Dementia in 2018 my heart was broken he may have FTD. He is in the hospital getting help and having mental tests to see what is going on.
I can’t visit him since he was admitted to the VA Hospital in Marion and since Covid19 I cannot visit him 💔
I am asking for prayer for my wonder husband Larry sweetest man I ever met!
I feel for caregivers but NOW i am not alone
I want to keep myself strong but inside I am very sad.
My husband has FTD and our journey to diagnosis sounds SO much like yours. This video is so helpful -- thank you for making it!
I started out with respite too -- that was December, and this is July -- he is still in the facility
Me too.
I think as people start talking about this subject, we are becoming more attuned to those around us and our reactions.
My wife has been diagnosed with FTD along with PPA. At this stage nearly everything has to be done for her, I.e. bathing, dressing, etc. I don’t know at what point, if at all, that I will need to admit her to a facility to care for her. One concern is whether I can afford such a facility. If you could speak to this issue, please do. I read that it is expensive, beyond my financial ability, and is not covered by most insurance companies or Medicare. Thank you for your story.
Sad that American system with its terrible costs for care.
@@margyeoman3564 we subsidize the healthcare of the world.
I’m a TBI survivor, 10 years. Saw this on 60 minutes last night.
So there’s a cure
FTD isn’t TBI, so no there isn’t a cure.
Back in the 70's my grandmother could talk for hours on the phone but not saying who the caller was. Dementia was not yet diagnosed. We watched a slower regression until she her daughter's funeral. It was like a blind came over her memory. 10 more years we had her, but she was a shadow of herself. Dangerous things, my grandmother loved to hide scissors in weird places - we would find under cushions & between sheets in the linen cupboard.
My father had this and he was a pilot for American Airlines it's a terrible disease
If people had Hoyer lifts at home that would really help in the care of them .My Husband had MD and I did a lot of using that devise or I could not have taken care of him for 4 years while he could not walk and was in depends He was 61 when he past away from a infection in his legs Even with a home Health Nurse taking care of his legs he still did get a infection .
That is very sad. He sounded like a good person.
I will I respect your wishes you are not alone
My son will be 65 in Nov, in Nov of 2020 he was diagnosed with FTD , he is very belligerent and wants to strike me or his wife,There are times when he apologizes to me for his behaviour but very little of whatever he says makes any sense at all He is seeing a neurologist regularly.
Pôr favor coloca para tradução em Português
Hey just watched your video your story is identical to mine. Would love to be your friend. I live in galway Ireland. Are you on Fb
Thank you for this story I hope you sell lots of bbq sauce 💕x
Where are you? Where are all the doctors and advisors that helped you? I don't have any thing lilke what you have. Thanks for the tips tho. Beverly is the patient, We set up the account in her name bc it's a Google acct.
What the difference between Frontotemporal Dementia and Frontotemporal Degeneration?
They are the same. They don’t want to say dementia, so they replaced it with degeneration.
@@jenniferrobinson1792degeneration is even worse than dementia imo
💜💜💜💜💜💜
This B is all too happy for this interview, of course he's in a "care home"
Is Bill still alive today?
Died August 2020 I googled
This is my story:(
I would love to be your friend
Diane this is the lady I sent you I would like to be your friend if that is OK with you
My Grandma Carol has Alzheimer’s
Yeah.... SOMETHING IS DEFINITELY WRONG if he's watching CNN. God help us if anyone starts watching CNN!
She was simply saying it was definitely not a normal behavior of her husband. ❤
And she capitalized off his BBQ recipe, Oh what a B.
YOU are a shallow, thin headed, inexperienced idiot. Clown is your name.
it is so h
That sounds disgusting that he ate non-food items
That woman talks too much!
She loves this. She's disgusting.
Her name is literally in the title, and she is telling her story. Of course she would be talking a lot
@@legoreviewwarrior 😂
She's a terrible wife
Angel Villegas How dare you! Her story is mine also. Walk just one past week in our shoes, let alone years. Grieve for your mate for years! Watch your children see their mother or father slipping away for years! Your judgement was best kept to yourself.
@@kathleenbryant7778 looking for stories that best fit yours to make you feel better about the fact that you gave up on your soulmate is no better than this lady that gave up on her own.
Your disgusting to say that. Shoe on the other foot you wouldn't last 2 minutes you have a brain full of sawdust and change your name your no angel
@@juespennerspencer2475 hey get off my back karen true love never gives up never abandons!
This clown obviously never had a family member affected...