My wife was diagnosed with dementia on 9/30/2020 after dealing with memory issues for some time. Dementia, Alzheimer’s, Frontotemporal Dementia - who knows. The Neurologist said he would not treat the FTD any differently than dementia. We are about to enter the 5th year. My beautiful wife of 51 years is also gone and she is sitting beside me. Her kind, gentle, nice nature still peeks thru occasionally. We took a vow for richer or poorer, for better or worse, in sickness and in health. Still here.
i am very sorry for your loss. i have just been diagnosed with ftd, i am 38. but it looks like this illness will be worse for my family than for me. thankyou for taking the time to make this video. all the best, paul
Beautiful video. I am a 29 year old caretaker for my mom, (59) diagnosed 2 years ago with Frontal temporal lobe dementia. My heart goes out to you and your late wife. I understand really what you are going thru, losing someone so close to you.
Nobody knows until they know. I wouldn’t wish this on anyone. My mother lived 10 years with picks, my father stood by her even sacrificing his own health to make sure she was taking care. He neglected himself so much that when he became ill he waited and wait to go to the doctor until I insisted. The following week he was diagnosed with stage 4 esophageal cancer. My mom passed 15 days prior to my dad. Through it all his only concern was her.
That is a beautiful speech. I lost my father to Fronto-temporal Lobe Dementia on 5th June 2012 after just 8 short years since diagnosis. He was 63, far too young and as this gentlemen says a piece of me is gone that will never come back.
It’s the loss of insight that is so hard to deal with. The loss is unimaginable. I have been my husband’s caregiver now going on year 15. The disease changes everything. The very worst being the loss of that one person on Earth who really knew you. Nobody else does.
I was rather belatedly diagnosed with frontal temporal lobe dementia after more than two years awaiting a determination and diagnosis as to why I was changing. Several of the symptoms your wife experienced, I am now exhibiting but all of us exhibiting differently so none of us are the same , although the outcome is the same . I no longer feel empathy and happier to be alone and watch tv without outside “ interference “. That’s how it seems to me . But I’m not suffering. That’s the main thing to understand about my dementia. It’s the person or persons who love us most are utterly destroyed by this . And I’m not . I don’t feel their pain . I absolutely can’t see or feel or empathise how she’s feeling . If you know someone who has a partner who has FTD , don’t feel sorry and especially PITY for either involved but support and be there for the partner and family because their life has turned upside down and they are feeling pain . Pity is an emotion that has no positive outcome, rather , ditch your pity and help those family members coping and caring for their loved one . I’m immune to all that . But my loved ones aren’t . Please look after them , not me .
True, True, words. My ex-wife (due to FTD) once told me that she wanted to find her old self but that she couldn't. I didn't know then what that meant, but I do now. The neuro pathways are damaged and blocked that allows a human to have empathy, sympathy and theory of mind. What a terrible awful disease. 😞
I feel for you! I’ve been married to my best friend, business partner, and soul-mate for 30 years, and i’ve been slowly ”loosing” my wife over the past 5 years.. She does very little now. I do basically everything for her. We argue alot now because I don’t do things the way she want’s me to do things. Her memory is very poor, and i feel like I’m a father to a spoiled, self-absorbed, 11 year old girl. It’s sad to see her go… and to go…. and to go… and to go. To get lost in her mind and to “disappear” from who she once was.
I know. My girlfriends in the late stage. She’s in Assissted Living now. And like you said, she’s still here, but she’s not anymore. I miss that person. But, I still go see her, hold her hand and tell her I love her. Once in while I get a reaction. Once I was there for two hours to visit her, and when I was leaving, she said, oh hi sweetie.Like I just got there. That’s OK.
My wife is going through this now. Ernie's story really hit home. His wife's journey was cut short suddenly, I wonder what it would have been if it continued down the normal path of frontotemporal dementia? In a way I feel he was spared from the worst of the disease, although in losing his wife it may be hard to imagine any worse.
Your story and mine are so similar, my husband is 59 and FTD is hitting him hard and fast. It is so hard for people to understand. Thank you for posting.
My brother has this and I’m so scared of seeing him get worse. His speech is already garbled and he tries to have conversations with us, but we don’t understand what he’s saying. How is your husband doing now? Have you noticed any major behavior changes?
@7:49 "A piece of me is gone now, and I'll never get it back"- This sums up how I feel. I lost the best wife a man could ask for to this disease. Is there-is there balm in Gilead?-tell me-tell me, I implore!" Quoth the Raven "Nevermore." (Poe)
I am really touch by your story and I wish I could have helped you because I have been trained in that area but you see I am too far away. But I am praying for you that God will continue to give you the strength you and your family needs to carry on.
So right. My mother in law used to say my husband was such a good child. And now I can see that. Unlike many, my husband is mostly very cooperative. And sometimes just like a little boy, I can only hug him, for me and his mom.
Incredibly poignant. Devastating loss of wife, mother and the essence of the woman he used to know. Caregiver to mother of his children who became a screamer and biter. How does a caregiver deal with that? I hope this gentleman has found peace.
Thank you lovely gentleman for sharing a very personal past of which I am very familiar with as a carer for my late father who had FTD (I don’t think I’ll ever get over that period) when Mum had an injury which changed Mum’s life with her abilities. This talk really touched me esp the end because though Mum & I are very grateful for where we are now, you really touched a nerve when you said the scars are still there. Like your beloved wife my Papa passed away suddenly and I so take bitter comfort knowing he still knew us and had no pain, we are forever hurting. I’m an Optometrist and I absolutely love the analogy you used. We are now learning to live and are very grateful 🙏🏼God bless you & all the Carer’s whose loved ones have or had FTD 🙏🏼
my darling husband was diagnosed with Dementia/Alzheimer...only those who have gone through this very painful illness and death of a brain that was once amazing and brilliant and loving person can know, the grieving begins when symptoms become apparent....from my research, he has been suffering from Alzheimer for 15 yrs...even longer...i have so much sadness and pain wishing I had known then what was happening...it would have avoided so much resentment, lack of understanding....I will love him always...There is relief that he has been diagnosed and I now know how to handle his behavior and suffering...I am with him daily ...I don't want to miss anything...I am also caring for an elderly mother who is house bound...most importantly, God gives me the strength and removing mountains blocking our path ....I believe that my Darling will be in a Care facility...my thoughts and feelings are for the family and the one diagnosed...STAY STRONG...
I know that soon I will lose my love, my best friend. I deeply feel your pain . Know that you help me see that there will be a day long off where I will be alone, but it makes me cherish today, right now as I stop myself from going to the place of frustration and exhaustion . I'm instead in a place of gratitude. Thank you!
My husband was finally diagnosed 9 years after the symptoms began at age 63. The progressive aphasia stole his voice and I lost my best friend in 2016, totally dependent on me. I still miss him and so thankful he did not have the behavioral variant if FTLD.
This is a awful disease. My dad was diagnosed at 70yr he is 72yr now it is progressing 😢 he is totally inconsistent I change his diapers, I help him in and out of bed his chair, he still feeds himself but makes more of mess. He use to be a welder, come home go and play with grands ect and then this he just sits in his room and watches tv, I hate this disease. It surely has taken a toll on my health and mental health as well. I am a daddy’s girl so I hate seeing him like this. Prayers for everyone going through this and who has lost someone.
The pictures are driving me crazy, my mother has Pick's disease and all she does is go through old pictures for hours. Then she gets mad at me when I don't want to see them anymore. This happens every time I see her.
Rarely do I become emotional over certain things. However, there is one. A commercial. It opens with an older couple walking along the beach when they come up to a bandstand and stage. The couple stop walking and the gentleman stops smiling as he looks at the stage. It is then that Barbara Streisand begins singing "The Way We Were". We then notice that the wife is oblivious to where she is and her husband is holding back tears. It is like NO other ad in showing how monstrous this disease is.
For my dad, he pasted away suddenly when he just stopped breathing. I mean he had been having trouble swallowing a week prior but I feel like it’s due to a sudden decline.
I am also suffering the same illness, already for 6 years at the age of 56. Still cognitive ok and have not the same awful thinks, but I have a weak bladder, no taste, no knowledge when I have to see the toilet. Luckily i live in a nursing home and I see the same reactions by my wife. Dementia is hard for those who are left. At the time there is no cure yet.
My husband has a frontal lobe spike also from over use of Dilantin his cerebellum has shriveled. He is 66 now and I can see the changes in him. He had to quit working at 20 due to epilepsy. My objective observations is that he is in decline. Does anybody know of any prognosis??
do you have a loved one with Pick's Disease or "FTD"? especially as a woman if your man gets violent and throws fits and tells you to leave them alone, sometimes it is the only thing you can do. i have tried to engage him in many activities and get him involved in old hobbies to no avail. their hearts are not breaking, ours are!
All hearts are saddened by illness. My sweet husband has advanced FTD. I am his sole caregiver these last ten years. So yes I know. I am blessed to be able to do this for him but it is a very daunting task. If I have to go out I plan as much as I can in advance and get someone to be with him until I return. In good conscious you can no more leave a dementia patient alone than a toddler. He is self aware to the point that he knows he is ill and cannot do any ADL's anymore. He tells me he is sorry for all the hard work I do. A lot of women my age (62) are widows, I am happy I still have mine. We love each other and for the most part are happy. You have to put yourself in their reality and encourage what they like now not what was, That is gone.
rebecca gray i read from some stuff i received from England where they are active with this FTD and Pick's wheras if you go to a dementia meeting in USA it is solely for Alzheimers and you feel WAY WAY out of place ~anyway it said there is a correlation that people that were nice and mellow before turn out to be monsters after. this is how my husband is. i cannot control him at all. the best so far that i have been able to do is that when he throws a huge fit and starts breaking things and screaming and threatening me... i smile my biggest smile and in my kindest most loving almost smarmy voice say "i love you" ... sometimes, sometimes it does make him forget the fit *sigh. when i was told to do all these things such as get someone to watch him. cargive. all that, i was told to do it by the doctors that dxd him. when i did, it just got so bad i had to stop and let him go by the grace of God and do his own thing or i get accused of all kinds of horrible things and the s*** hits the fan. i am really stuck in a bad problem. he is never ever kind to me and when he gets around strangers or aquaintances i see the man i married and it hurts SO bad. i am the only one he behaves badly with. but the doctors know what is going on only. and the police (which around here might not be such a good thing :(. he was caught stealing cigarettes and lost a job behind it. this is a man who would have never ever stole anything ever, much less on his job. always was so proud of getting to work on time *sob. i am glad he is in a work program now. gives me some respite for 5 hours 4 days a week! YAY ~thank you Rebecca
I am sorry for you. The first couple of years were bad for us too. We lost our house and were almost homeless. There are support groups for FTD but mostly in big cities not rural areas. I agree we do not fit into the Alzheimer's group, way different. My husband has always had a short temper. He can be very violent if set off. He is treated with several medicines which help a lot but I still have to watch it or I could get hit or bitten. I do sternly remind him that he needs to behave and let him know when he has gone too far. He usually apologizes later. I hope you get help from your husband's doctors. Please let them know you are afraid of him. No one deserves to live like that.
the last time i went to the VA office and said that, the lady said she thought i was having a nervous breakdown and called an ambulance to have me put in a straight jacket. Of course, i ran out of the VA clinic, got in my car and went home. They are not treating him with ANY drugs. None of the drugs they chose to treat him with i thought did any good at all. he should be on a drug that makes him feel less tense. he is so wound up all the time forcing his opinions. this morning i was just blurted out crying over what is going on in the US election and the kids. Today the protest goes right to NYC. he agrees with me totally, yet when i expressed my sadness and disbelief, he began preaching to me about how unchristian i was behaving, yet, he can say the same things with no emotion and that is fine to him. i made another bad mistake ~i was human for a moment. i am in hell. hell is here on earth. it is not some firey place with a devil. now i am really losing it. i cannot handle him and where my country is headed. God help us. i have got to put this home i have worked so hard to make in beautiful Ozark Mts. i love for 8 years, a tulip tree that grew from a twig to two stories high in eight years and is yeilding tulip flowers already which usually takes 15-16 years. why, because i think i just loved it into early blooms *giggles. i love that tree. i never even knew what a tulip tree was. took an old 80 year old neighbor down the hill studying in old books to find one and finally identify it. i will miss the beauty of the Ozarks. i am putting this house up for sale and moving to the west coast. i am a girl who grew up in the midwest, Kansas, namely. Look at Kansas now ~i'll never step foot in it again and my parents are buried there. i know they would understand. i will see them again along the way someday. i have invited husband if he wants to come with me but not necessarily to live with me. he has just become to cruel. but maybe out there and after such a long adventure across the country and back to a place of origin for him, it will change him for the better, for a while maybe til the end. but as the one Burl Ives doctor said at the clinic a year after he was dxd with Picks "why did they diagnose you with that?" we reacted "you tell us you are the professional!" he replied "i think its HOGWASH you just have behavioral problems." so, that guy was only at this VA a month, not even long enough for another visit. they go through psychs like pain pill addicted go through medications, its a sorrid situation even there. i figure out west, things must be much better treatment and in Oregon they do have "dignified dying."??? if he chose to do so. He seems totally in tact mentally except for his anger-boy side. i don't know what to believe. i am like this teenager on a crush with a daisy (he loves me he loves me not) except it is (he has Picks, he just has behavioral problems..etc etc) and NOBODY cares!!! One lady neighbor said that there is nothing wrong with him, that i am the one that is deranged after all the things i had done for her over the years and she had never helped me when i asked but it never mattered because i never expect anything in return when i give. But when she said that, it really hurt. Then she wondered why when she would drive by and try to wave at me or stop her car (no cars drive on this rural road hardly at all so you can stop and talk a while lol) i would turn away as if she was not there because after she said such an unsupportive thing, she is as good as dead to me. Can you blame me? that is why i say, i have no friends anymore. i can't go to church because around here they all preach politics on the pulpit which is a nightmare for me as i grew up that never happened and it is surreal. i see these young people protesting in the streets afraid of being deported or beaten down because of the color of their skin by an even more hyped up militant orientated police force full of skin heads with octopus tentacle looking horrifying tattoos running down their arms to their elbows which i have no idea what they mean and am afraid to know really. hubby left to do a side job and will be gone all day. i cannot even go take a walk because of the bad wreck i was in. so i guess i can go out in the yard and use my thumb nails to make cute little eyes and mouths on my great big yellow Tulip Tree leaves. i have always carved a pumpkin for halloween since i was a kid, i can't even slice a cabbage anymore. but i can use my thumb nails to make a cute tulip tree smiley leaf. and i can lay back and watch the dragon flies of a long warm autumn and the really tiny monarchs this year and dragon flies and birds way up high soaring on the winds without even flapping wings. i wish i was one of those big black birds now. i am sorry for unloading so bad. but i really appreciate you not giving up on me. as i type this i look to my left and see such filthy, even pornographic pictures on the front of you tube videos. i was bipolar1 (manic bipolar), i didn't sleep a wink for about a year. all kinds of dx's behind post menopause HA! what a mess i am in. i had a GREAT business with a steady clientele that adored me and likewise that it took 15 yrs to build. a psychiatrist implored me to 'take a break from life' and shut my business down. after two years of this i finally obeyed his request that i now regret and here we are, not where i ever wanted to be. i miss my clients and they miss me i am sure but i would never want them to see me so unbalanced like this. i was a very fine and professional massage therapist at the top of my class as i was told by a boss at a huge spa who had seen them come and go for 15 years where i worked among 20 other therapists. i always told clients "prefer you to be unclothed for circulation" most say "prefer 'totally nude'" lol ~i never thought that sounded comfortable to me so why would it sound comfortable to a complete stranger. he overheard it one day and when we had a mandatory meeting (which is actually illegal to do with contract laborers but that is another story LOL) he praised my verbage and told the whole massage therapist staff that this was the language to be used to all therapists from here on out because he thought it so much more appropriate. of course, the other therapists rolled their eyes and i was a bit sheepish, not being one to compete or be praised over everyone else. but you get the picture. when my last client left my shop i thought well what is the first thing i should do. i took all the pretty paintings i had decorated my quaint but cute spa with. the walls were then bare. the impact after 5 years of pretty walls brought me to my knees in tears. at that time David became my payee through SSD and my doctor who wanted me on it said "it didn't have to be forever." Now it has all turned around and i am my hubby's payee. the difference is i always allowed him to take care of my aches and pains and we could talk before we moved here 8 years ago before he lost his job six months after we moved here and he changed after being fired upon a 3 day investigation. as his payee, i have given him control over paying bills, still! as i know it makes him happy and he really is better at it than i am, but i make sure he ACTUALLY paid it afterwards (that is the ticket!). while he was in the hospital for 3 wks being dxd ~i started going through our bills and was horrified to see he had not paid our three credit cards we had almost had paid off (one was for SEars for his wedding outfit and our rings) and that with $40 late charges and increased to max interest rates that the amounts we oweed had exceeded by far the amounts that the cards were even for to begin with ~i was devestated. it was like (if you ever saw the movie with Shelly Duvall and Jack Nickolson "The Shining" when she found that all he had ever typed all winter for his book was "all work and no play makes jack a dull boy" that horrifying to me. he was always such a good book keeper ~even kept a ledger ;O i was bullied as a JR HIGH student and it left a scar on me for life but i have sublimated well and done great things with my life to help others. right now i feel as if i am totally dead inside. i feel my soul being ripped out of my body by our so called democracy and health system (and i ain't talkin' the affordable care act) i'm talkin' about the PHARMY bullys on capitol hill, Dow chemical, Petro, Monsanto GMO and ... ahhhhhhhh i will let you go i think i am just going to go put my head under the covers for now. i can't put this off on you. i need to just write a book huh. sorry sorry sorry!
I guess listening to thus I take that Karen was happy with horrible disease unknowing... until the time of screaming and biting... the poor husband and children... the poor children worrying if they had inherited this genetically... so very very frighteningly sad. What causes this needs to be found... metals, water, pesticide poison in our food - what on earth is doing this. Hugs sent to Ernie and their kids.. ♥♥♥
Wow. He may not show it in the video but I believe Ernie has a heart much bigger than most of us.
My wife was diagnosed with dementia on 9/30/2020 after dealing with memory issues for some time. Dementia, Alzheimer’s, Frontotemporal Dementia - who knows. The Neurologist said he would not treat the FTD any differently than dementia. We are about to enter the 5th year. My beautiful wife of 51 years is also gone and she is sitting beside me. Her kind, gentle, nice nature still peeks thru occasionally. We took a vow for richer or poorer, for better or worse, in sickness and in health. Still here.
Stayed with her till the end.
Top man...!
Would you say the same if the sexes were reversed? Probably not, A woman is`nt considered a hero if she stays with a sick spouse, Most women would.
i am very sorry for your loss. i have just been diagnosed with ftd, i am 38. but it looks like this illness will be worse for my family than for me. thankyou for taking the time to make this video.
all the best, paul
Beautiful video.
I am a 29 year old caretaker for my mom, (59) diagnosed 2 years ago with Frontal temporal lobe dementia. My heart goes out to you and your late wife. I understand really what you are going thru, losing someone so close to you.
Nobody knows until they know. I wouldn’t wish this on anyone. My mother lived 10 years with picks, my father stood by her even sacrificing his own health to make sure she was taking care. He neglected himself so much that when he became ill he waited and wait to go to the doctor until I insisted. The following week he was diagnosed with stage 4 esophageal cancer. My mom passed 15 days prior to my dad. Through it all his only concern was her.
Sounds like your mom was the most fortunate woman in the world. God be with you ❤️
love is a beautiful thing,bless your mum and dad,going so close together would have been their wish. You are lucky to have this memory
That is a beautiful speech. I lost my father to Fronto-temporal Lobe Dementia on 5th June 2012 after just 8 short years since diagnosis. He was 63, far too young and as this gentlemen says a piece of me is gone that will never come back.
Hi Tracie, how's your day going with you?
What a wonderful tribute to his wife.
I went through exactly the same thing with my late husband. You brave man to give up your pain to help others.
Hi Geraldine, how's your day going with you?
It’s the loss of insight that is so hard to deal with. The loss is unimaginable. I have been my husband’s caregiver now going on year 15. The disease changes everything. The very worst being the loss of that one person on Earth who really knew you. Nobody else does.
I was rather belatedly diagnosed with frontal temporal lobe dementia after more than two years awaiting a determination and diagnosis as to why I was changing. Several of the symptoms your wife experienced, I am now exhibiting but all of us exhibiting differently so none of us are the same , although the outcome is the same . I no longer feel empathy and happier to be alone and watch tv without outside “ interference “. That’s how it seems to me . But I’m not suffering. That’s the main thing to understand about my dementia. It’s the person or persons who love us most are utterly destroyed by this . And I’m not . I don’t feel their pain . I absolutely can’t see or feel or empathise how she’s feeling . If you know someone who has a partner who has FTD , don’t feel sorry and especially PITY for either involved but support and be there for the partner and family because their life has turned upside down and they are feeling pain . Pity is an emotion that has no positive outcome, rather , ditch your pity and help those family members coping and caring for their loved one . I’m immune to all that . But my loved ones aren’t . Please look after them , not me .
True, True, words. My ex-wife (due to FTD) once told me that she wanted to find her old self but that she couldn't. I didn't know then what that meant, but I do now. The neuro pathways are damaged and blocked that allows a human to have empathy, sympathy and theory of mind. What a terrible awful disease. 😞
What a charming and special man ,God bless him xxx
I feel for you! I’ve been married to my best friend, business partner, and soul-mate for 30 years, and i’ve been slowly ”loosing” my wife over the past 5 years..
She does very little now. I do basically everything for her. We argue alot now because I don’t do things the way she want’s me to do things. Her memory is very poor, and i feel like I’m a father to a spoiled, self-absorbed, 11 year old girl.
It’s sad to see her go… and to go…. and to go… and to go. To get lost in her mind and to “disappear” from who she once was.
I know. My girlfriends in the late stage. She’s in Assissted Living now. And like you said, she’s still here, but she’s not anymore. I miss that person. But, I still go see her, hold her hand and tell her I love her. Once in while I get a reaction. Once I was there for two hours to visit her, and when I was leaving, she said, oh hi sweetie.Like I just got there. That’s OK.
My wife is going through this now. Ernie's story really hit home. His wife's journey was cut short suddenly, I wonder what it would have been if it continued down the normal path of frontotemporal dementia? In a way I feel he was spared from the worst of the disease, although in losing his wife it may be hard to imagine any worse.
Jennifer, how are you doing today?
Your comment shows that you’re still here and can recognize that you have a memory issue.
Your story and mine are so similar, my husband is 59 and FTD is hitting him hard and fast. It is so hard for people to understand. Thank you for posting.
My brother has this and I’m so scared of seeing him get worse.
His speech is already garbled and he tries to have conversations with us, but we don’t understand what he’s saying.
How is your husband doing now?
Have you noticed any major behavior changes?
Hi Carol, how's your day going with you?
@7:49 "A piece of me is gone now, and I'll never get it back"- This sums up how I feel. I lost the best wife a man could ask for to this disease.
Is there-is there balm in Gilead?-tell me-tell me, I implore!"
Quoth the Raven "Nevermore." (Poe)
I;m losing my dad to FTD and it's heartbreaking to see him going through this.
I am really touch by your story and I wish I could have helped you because I have been trained in that area but you see I am too far away. But I am praying for you that God will continue to give you the strength you and your family needs to carry on.
We become parents to our spouses... thank you for your story 💖
So right. My mother in law used to say my husband was such a good child. And now I can see that. Unlike many, my husband is mostly very cooperative. And sometimes just like a little boy, I can only hug him, for me and his mom.
Incredibly poignant. Devastating loss of wife, mother and the essence of the woman he used to know. Caregiver to mother of his children who became a screamer and biter. How does a caregiver deal with that?
I hope this gentleman has found peace.
Thank you lovely gentleman for sharing a very personal past of which I am very familiar with as a carer for my late father who had FTD (I don’t think I’ll ever get over that period) when Mum had an injury which changed Mum’s life with her abilities. This talk really touched me esp the end because though Mum & I are very grateful for where we are now, you really touched a nerve when you said the scars are still there. Like your beloved wife my Papa passed away suddenly and I so take bitter comfort knowing he still knew us and had no pain, we are forever hurting. I’m an Optometrist and I absolutely love the analogy you used. We are now learning to live and are very grateful 🙏🏼God bless you & all the Carer’s whose loved ones have or had FTD 🙏🏼
You are a good man. Thank you for sharing.
Thank you Ernie 🙏🏽
my darling husband was diagnosed with Dementia/Alzheimer...only those who have gone through this very painful illness and death of a brain that was once amazing and brilliant and loving person can know, the grieving begins when symptoms become apparent....from my research, he has been suffering from Alzheimer for 15 yrs...even longer...i have so much sadness and pain wishing I had known then what was happening...it would have avoided so much resentment, lack of understanding....I will love him always...There is relief that he has been diagnosed and I now know how to handle his behavior and suffering...I am with him daily ...I don't want to miss anything...I am also caring for an elderly mother who is house bound...most importantly, God gives me the strength and removing mountains blocking our path ....I believe that my Darling will be in a Care facility...my thoughts and feelings are for the family and the one diagnosed...STAY STRONG...
Hi Sammie, how's your day going with you?
Thank you for sharing your story. It has helped immensely. Thank you.
I can't imagine the inner pain that this man has.
HUGE VIRTUAL HUG 🤗TO YOU SIR
Hi Kelly, how's your day going with you?
God love him 😢But he is a wonderful speaker realy gets what happened etc realy across. Heartbreaking for all the family 💔😢
I'm so sorry for your pain
Thank you for sharing.
I know that soon I will lose my love, my best friend. I deeply feel your pain . Know that you help me see that there will be a day long off where I will be alone, but it makes me cherish today, right now as I stop myself from going to the place of frustration and exhaustion . I'm instead in a place of gratitude. Thank you!
Hi Christine, how's your day going with you?
“I don’t know when she left but she was gone”. So sad.
So sorry for your loss. Too sad.
My husband was finally diagnosed 9 years after the symptoms began at age 63. The progressive aphasia stole his voice and I lost my best friend in 2016, totally dependent on me. I still miss him and so thankful he did not have the behavioral variant if FTLD.
Hi Kathy, how's your day going with you?
My beautiful dad succumb to this hideous disease. The most beautiful human being you could ever meet. My hero for ever
I relate to Ernie's comment about not knowing when I lost my husband. I wish I was more patient and wish I knew.
Hi Jeanine, how's your day going with you?
This is a awful disease. My dad was diagnosed at 70yr he is 72yr now it is progressing 😢 he is totally inconsistent I change his diapers, I help him in and out of bed his chair, he still feeds himself but makes more of mess. He use to be a welder, come home go and play with grands ect and then this he just sits in his room and watches tv, I hate this disease. It surely has taken a toll on my health and mental health as well. I am a daddy’s girl so I hate seeing him like this. Prayers for everyone going through this and who has lost someone.
I'd like to know how this man is doing now.
Hi Debra, how's your day going with you?
Beautiful lady!
The pictures are driving me crazy, my mother has Pick's disease and all she does is go through old pictures for hours. Then she gets mad at me when I don't want to see them anymore. This happens every time I see her.
I pray you're both still here to go through pics.
Thank you
Thank you for sharing
Rarely do I become emotional over certain things. However, there is one. A commercial. It opens with an older couple walking along the beach when they come up to a bandstand and stage. The couple stop walking and the gentleman stops smiling as he looks at the stage. It is then that Barbara Streisand begins singing "The Way We Were". We then notice that the wife is oblivious to where she is and her husband is holding back tears. It is like NO other ad in showing how monstrous this disease is.
God bless you ❤
My Heart 💔
Bless there hearts 💕
I felt the same as you..exactly
Hi Sharon, how's your day going with you?
I’m so sorry
How does one pass away suddenly from that disease? What causes that?
For my dad, he pasted away suddenly when he just stopped breathing. I mean he had been having trouble swallowing a week prior but I feel like it’s due to a sudden decline.
It's a brain disease and your brain runs your body. Her husband did his best. Karen was happy at home
I would have loved to see Karen.😔
❤❤....😥
I am also suffering the same illness, already for 6 years at the age of 56. Still cognitive ok and have not the same awful thinks, but I have a weak bladder, no taste, no knowledge when I have to see the toilet. Luckily i live in a nursing home and I see the same reactions by my wife. Dementia is hard for those who are left. At the time there is no cure yet.
My husband has a frontal lobe spike also from over use of Dilantin his cerebellum has shriveled. He is 66 now and I can see the changes in him. He had to quit working at 20 due to epilepsy. My objective observations is that he is in decline. Does anybody know of any prognosis??
Hi Judy, how's your day going with you?
44...wow.
Behaviour display frustration and aggression.
First of all you never leave a person with advanced dementia alone. A sad story. But she should have had better care.
do you have a loved one with Pick's Disease or "FTD"? especially as a woman if your man gets violent and throws fits and tells you to leave them alone, sometimes it is the only thing you can do. i have tried to engage him in many activities and get him involved in old hobbies to no avail. their hearts are not breaking, ours are!
All hearts are saddened by illness. My sweet husband has advanced FTD. I am his sole caregiver these last ten years. So yes I know. I am blessed to be able to do this for him but it is a very daunting task. If I have to go out I plan as much as I can in advance and get someone to be with him until I return. In good conscious you can no more leave a dementia patient alone than a toddler. He is self aware to the point that he knows he is ill and cannot do any ADL's anymore. He tells me he is sorry for all the hard work I do. A lot of women my age (62) are widows, I am happy I still have mine. We love each other and for the most part are happy. You have to put yourself in their reality and encourage what they like now not what was, That is gone.
rebecca gray i read from some stuff i received from England where they are active with this FTD and Pick's wheras if you go to a dementia meeting in USA it is solely for Alzheimers and you feel WAY WAY out of place ~anyway it said there is a correlation that people that were nice and mellow before turn out to be monsters after. this is how my husband is. i cannot control him at all. the best so far that i have been able to do is that when he throws a huge fit and starts breaking things and screaming and threatening me... i smile my biggest smile and in my kindest most loving almost smarmy voice say "i love you" ... sometimes, sometimes it does make him forget the fit *sigh. when i was told to do all these things such as get someone to watch him. cargive. all that, i was told to do it by the doctors that dxd him. when i did, it just got so bad i had to stop and let him go by the grace of God and do his own thing or i get accused of all kinds of horrible things and the s*** hits the fan. i am really stuck in a bad problem. he is never ever kind to me and when he gets around strangers or aquaintances i see the man i married and it hurts SO bad. i am the only one he behaves badly with. but the doctors know what is going on only. and the police (which around here might not be such a good thing :(. he was caught stealing cigarettes and lost a job behind it. this is a man who would have never ever stole anything ever, much less on his job. always was so proud of getting to work on time *sob. i am glad he is in a work program now. gives me some respite for 5 hours 4 days a week! YAY
~thank you Rebecca
I am sorry for you. The first couple of years were bad for us too. We lost our house and were almost homeless. There are support groups for FTD but mostly in big cities not rural areas. I agree we do not fit into the Alzheimer's group, way different. My husband has always had a short temper. He can be very violent if set off. He is treated with several medicines which help a lot but I still have to watch it or I could get hit or bitten. I do sternly remind him that he needs to behave and let him know when he has gone too far. He usually apologizes later. I hope you get help from your husband's doctors. Please let them know you are afraid of him. No one deserves to live like that.
the last time i went to the VA office and said that, the lady said she thought i was having a nervous breakdown and called an ambulance to have me put in a straight jacket. Of course, i ran out of the VA clinic, got in my car and went home. They are not treating him with ANY drugs. None of the drugs they chose to treat him with i thought did any good at all. he should be on a drug that makes him feel less tense. he is so wound up all the time forcing his opinions. this morning i was just blurted out crying over what is going on in the US election and the kids. Today the protest goes right to NYC. he agrees with me totally, yet when i expressed my sadness and disbelief, he began preaching to me about how unchristian i was behaving, yet, he can say the same things with no emotion and that is fine to him. i made another bad mistake ~i was human for a moment. i am in hell. hell is here on earth. it is not some firey place with a devil. now i am really losing it. i cannot handle him and where my country is headed. God help us. i have got to put this home i have worked so hard to make in beautiful Ozark Mts. i love for 8 years, a tulip tree that grew from a twig to two stories high in eight years and is yeilding tulip flowers already which usually takes 15-16 years. why, because i think i just loved it into early blooms *giggles. i love that tree. i never even knew what a tulip tree was. took an old 80 year old neighbor down the hill studying in old books to find one and finally identify it. i will miss the beauty of the Ozarks. i am putting this house up for sale and moving to the west coast. i am a girl who grew up in the midwest, Kansas, namely. Look at Kansas now ~i'll never step foot in it again and my parents are buried there. i know they would understand. i will see them again along the way someday. i have invited husband if he wants to come with me but not necessarily to live with me. he has just become to cruel. but maybe out there and after such a long adventure across the country and back to a place of origin for him, it will change him for the better, for a while maybe til the end. but as the one Burl Ives doctor said at the clinic a year after he was dxd with Picks "why did they diagnose you with that?" we reacted "you tell us you are the professional!" he replied "i think its HOGWASH you just have behavioral problems." so, that guy was only at this VA a month, not even long enough for another visit. they go through psychs like pain pill addicted go through medications, its a sorrid situation even there. i figure out west, things must be much better treatment and in Oregon they do have "dignified dying."??? if he chose to do so. He seems totally in tact mentally except for his anger-boy side. i don't know what to believe. i am like this teenager on a crush with a daisy (he loves me he loves me not) except it is (he has Picks, he just has behavioral problems..etc etc) and NOBODY cares!!! One lady neighbor said that there is nothing wrong with him, that i am the one that is deranged after all the things i had done for her over the years and she had never helped me when i asked but it never mattered because i never expect anything in return when i give. But when she said that, it really hurt. Then she wondered why when she would drive by and try to wave at me or stop her car (no cars drive on this rural road hardly at all so you can stop and talk a while lol) i would turn away as if she was not there because after she said such an unsupportive thing, she is as good as dead to me. Can you blame me? that is why i say, i have no friends anymore. i can't go to church because around here they all preach politics on the pulpit which is a nightmare for me as i grew up that never happened and it is surreal. i see these young people protesting in the streets afraid of being deported or beaten down because of the color of their skin by an even more hyped up militant orientated police force full of skin heads with octopus tentacle looking horrifying tattoos running down their arms to their elbows which i have no idea what they mean and am afraid to know really. hubby left to do a side job and will be gone all day. i cannot even go take a walk because of the bad wreck i was in. so i guess i can go out in the yard and use my thumb nails to make cute little eyes and mouths on my great big yellow Tulip Tree leaves. i have always carved a pumpkin for halloween since i was a kid, i can't even slice a cabbage anymore. but i can use my thumb nails to make a cute tulip tree smiley leaf. and i can lay back and watch the dragon flies of a long warm autumn and the really tiny monarchs this year and dragon flies and birds way up high soaring on the winds without even flapping wings. i wish i was one of those big black birds now. i am sorry for unloading so bad. but i really appreciate you not giving up on me. as i type this i look to my left and see such filthy, even pornographic pictures on the front of you tube videos. i was bipolar1 (manic bipolar), i didn't sleep a wink for about a year. all kinds of dx's behind post menopause HA! what a mess i am in. i had a GREAT business with a steady clientele that adored me and likewise that it took 15 yrs to build. a psychiatrist implored me to 'take a break from life' and shut my business down. after two years of this i finally obeyed his request that i now regret and here we are, not where i ever wanted to be. i miss my clients and they miss me i am sure but i would never want them to see me so unbalanced like this. i was a very fine and professional massage therapist at the top of my class as i was told by a boss at a huge spa who had seen them come and go for 15 years where i worked among 20 other therapists. i always told clients "prefer you to be unclothed for circulation" most say "prefer 'totally nude'" lol ~i never thought that sounded comfortable to me so why would it sound comfortable to a complete stranger. he overheard it one day and when we had a mandatory meeting (which is actually illegal to do with contract laborers but that is another story LOL) he praised my verbage and told the whole massage therapist staff that this was the language to be used to all therapists from here on out because he thought it so much more appropriate. of course, the other therapists rolled their eyes and i was a bit sheepish, not being one to compete or be praised over everyone else. but you get the picture. when my last client left my shop i thought well what is the first thing i should do. i took all the pretty paintings i had decorated my quaint but cute spa with. the walls were then bare. the impact after 5 years of pretty walls brought me to my knees in tears. at that time David became my payee through SSD and my doctor who wanted me on it said "it didn't have to be forever." Now it has all turned around and i am my hubby's payee. the difference is i always allowed him to take care of my aches and pains and we could talk before we moved here 8 years ago before he lost his job six months after we moved here and he changed after being fired upon a 3 day investigation. as his payee, i have given him control over paying bills, still! as i know it makes him happy and he really is better at it than i am, but i make sure he ACTUALLY paid it afterwards (that is the ticket!). while he was in the hospital for 3 wks being dxd ~i started going through our bills and was horrified to see he had not paid our three credit cards we had almost had paid off (one was for SEars for his wedding outfit and our rings) and that with $40 late charges and increased to max interest rates that the amounts we oweed had exceeded by far the amounts that the cards were even for to begin with ~i was devestated. it was like (if you ever saw the movie with Shelly Duvall and Jack Nickolson "The Shining" when she found that all he had ever typed all winter for his book was "all work and no play makes jack a dull boy" that horrifying to me. he was always such a good book keeper ~even kept a ledger ;O i was bullied as a JR HIGH student and it left a scar on me for life but i have sublimated well and done great things with my life to help others. right now i feel as if i am totally dead inside. i feel my soul being ripped out of my body by our so called democracy and health system (and i ain't talkin' the affordable care act) i'm talkin' about the PHARMY bullys on capitol hill, Dow chemical, Petro, Monsanto GMO and ... ahhhhhhhh i will let you go i think i am just going to go put my head under the covers for now. i can't put this off on you. i need to just write a book huh. sorry sorry sorry!
I guess listening to thus I take that Karen was happy with horrible disease unknowing... until the time of screaming and biting... the poor husband and children... the poor children worrying if they had inherited this genetically... so very very frighteningly sad.
What causes this needs to be found... metals, water, pesticide poison in our food - what on earth is doing this.
Hugs sent to Ernie and their kids..
♥♥♥
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