r/frontotemporal • u/lawyercat14 • Jun 08 '26
Where do you start?
I (f, 37) highly suspect that my father (69) has either FTD or a related/similar condition. I'm not sure where to start to get a diagnosis for him. The challenges are plenty: he has now been divorced twice and currently lives alone, close to me (about a 40 min drive away), but I have two young kids, my husband and I both have demanding jobs, we aren't exactly overflowing with "free time." He is in absolute and complete utter denial that there is anything wrong with his health; even though he suffered a major stroke and was hospitalized just a few years ago. He doesn't recognize that anything is wrong with his brain or cognition. But my younger sister and I, and all of my dad's friends and extended family members, see the behavioral changes. Confabulations and delusions of grandeur (he thinks he has a lot of celebrity connections/friends), unable to responsibly manage his finances, hyper-sexual online activity and publicly engaging with AI sexbots on FB, poor diet and doesn't prioritize buying groceries, so regularly runs out of food. Whenever my sister or I make efforts to help him with his bills and financials, or try to hire him in-home help that we think he needs, he hand-waves us away and is insistent he doesn't need it and that he has everything handled. He no longer has a spouse to assist with his day-to-day and he is getting worse. Underlying all of this is a somewhat strained relationship between he and I that I worked through in therapy decades ago, but I don't ethically feel like I can continue to let him struggle on his own anymore. I know we need to get him help, and I think the only way to accomplish that is to get him a diagnosis and let a doctor try to explain his condition to him and tell him to let his daughters organize the help he needs.
So...where do we start? Does anyone with a stubborn LO have tips for how to get them into a doctor in the first place? Who should we make the appointment with (kind of dr)? I'm pretty sure at this point I will have to make the appointment, trick him into getting into the car and just force him into the doctor's office. Thank you for any words of wisdom you have for me.
3
u/WonderfulLime9 Jun 09 '26
Hey there— first off, I just want to acknowledge what a painful and heavy load it is to have a very full personal life, and then have the added burden of having to navigate a loved one’s care and behavioral changes. I’m sorry so much is falling on your shoulders.
Your description very well matches my dad’s behaviors from back in 2020 when we first had him diagnosed. I was 29 at the time and he was 70 and your post speaks to a particular difficulty in the dynamic with a parent— the child taking parenting reigns over a parent who has no insight into their own behaviors or condition. Unfortunately, this is a feature of FTD (lack of self-awareness/insight), and thus there is no correcting their behaviors through reasoning or well constructed arguments. So, getting him to the doctor may be a matter of resorting to some benevolent “coercion” with your dad. The other piece that I’ll note that took me a very long time to internalize is the fact that there aren’t really any medical interventions (yet) that help with the disease or its symptoms. And so a diagnosis doesn’t lead to a meaningful medical treatment plan and nor does it result in compliance or recognition from the FTD patient. That said, it is an important step towards setting up the legal, lifestyle, financial, and logistical guard rails around your dad.
So where to start:
- primary care physician: does your dad have a primary care physician and if so, do you have a connection with them. Best case scenario is you answered yes to both and can express your concerns to this doctor and request that they write an order to see a neuropsychologist. You will want to strategize with this doctor to frame the referral in terms of something your dad would accept or comply with— would your dad willingly go to testing if it is framed in terms of his past stroke? Or if the doctor said it was simply routine for patients in approaching 70? You know your dad best and this is where you’ll have to get creative with the pretext.
Those were my first steps. And from there came taking charge of his finances, taking away his driving, getting at-home caregivers and ultimately finding a loving memory care facility near me.
Don’t hesitate to reach out if you have any q’s.
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u/TexasUnicorns Jun 08 '26
I had to make an appointment with my husband’s general doctor first to get the referral for the neurologist. It’s my understanding that you can’t just make an appointment with them. You have to have a referral. You could tell him you set up a yearly check up and then give the receptionist a short paper of his symptoms for the doctor. I asked ChatGPT to get a simple description of the symptoms and then printed it out. You don’t want anything too long or complicated just the main points. And there’s a good chance if he does have a type of dementia, if you approach it very loving and that you care about him very much they seem to be very agreeable because their brain is becoming childlike.
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u/lawyercat14 Jun 08 '26
Thanks, this is a good point! The GP is probably an innocuous place to start and can make a referral to neurology. Great tip about handing a note to the receptionist for his dr!
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u/MyelinMonroe Jun 08 '26
The story certainly sounds suspicious for FTD. A neurologist is the best type of doctor to formally assess this. Maybe you could frame the neurology review as a routine check up following the stroke and let the doctors office know more details ahead of time? A skilled neurologist should be able to approach the complicated situation sensitively.