Diane Fehon: A FTD Caregiver Story

FTD Caregiver, Diane Fehon, shares the story of her husband's experience with Frontotemporal degeneration (FTD).

[kvdme]

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.

[yuvgotubekidding]

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?

[ColbyStewart]

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.

[ShelleyDewitt]

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.

[sarahchandler]

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.

[tonyhahahaha]

She is so well spoken. Nothing gets by this woman she’s as sharp as a tack.

[hannahrosa]

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.

[jessy]

So much of Diane’s story mirrors my own. Thank you for the support.

[laurah.]

My mother has this and terrorized me. I can't get anyone to believe me how dangerous she is to herself and others

[elsiegrace]

Such a cruel disease, but What an incredibly brave woman..

[shayleenjoubert]

My Mom has has FTD. DIAGNOSED A YEAR AGO. SHE IS 76 now😢. I live with her and see to her. It's just aweful. In a year she is half of herself

[deborahray]

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.

[deborahgolob]

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

[judycampbell]

Np one ever talks about the finances. What do you if you can't afford a facility?

[zelcat]

OMG. This video just showed up out of the blue on my YouTube 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.

[maryhickel]

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.

[toddl.]

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.

[jesenialuna]

Thanks for sharing. My father was diagnosed with Acute Dementia. It breaks my heart to see him how the disease has taken over.

[annatyreman]

Went to docs with high BP and headaches turns out there were 2 brain tumours in there, take care people!

[Reno-nana]

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